Toby Pannone

Who Shall Live and Who Shall Die?

2011-10-15T19:13:00.000-07:00

Presented at the annual meeting of the American Society of Bioethics and Humanities. Special thanks to my brother Yoram Unguru, Donna Ludwinski, Carie Carter, Pat Lacey and most of all to John London, who started it all with his heartwrenching words and compelling argument.

Who Shall Live and Who Shall Die?

It's a provocative question, one with Old Testament roots and an attendant seriousness. It's a question with wide application in ethical discourse.
And although it may be uncomfortable and perhaps sensationalistic, it is a question that we cannot ignore. Certainly in the world of pediatric cancer, "who shall live and who shall die" has very real meaning. For me, since my son Toby was diagnosed with stage IV neuroblastoma, the question "who shall live and who shall die" has become a constant backdrop to daily life.

Neuroblastoma is the most common solid tumor cancer in infants. The median age at diagnosis is 2 years old. At diagnosis, more than half of neuroblastoma patients have disease that has already metastasized to other parts of the body. Children with high-risk disease undergo aggressive high-dose chemotherapy, radiation, surgery, stem cell transplant, differentiation therapy, and antibody therapy. Even after this intense treatment, only 30% survive. If a patient relapses or stops responding to therapy, neuroblastoma is usually viewed as a terminal illness with less than a 10% chance of survival. For those that do survive, the late effects are significant: hearing loss, neurocognitive problems, sterility and secondary cancers.

Since my son was diagnosed in 2007 I have watched helplessly as child after child has died an often agonizing and prolonged death. Neuroblastoma parents describe the death of their children like this: "I’m literally seeing disease erupt all over his body, extraordinarily painful bone mets, fractured bones from disease, organ failure, breathing difficulty, seizures, paralysis, blindness.“ These families face the unthinkable.

In the blink of an eye, we have said goodbye to Liam and Evan, to Lucas, Penelope, Max, Erik, Sam, Erin and so many others that I could burn through my allotted time by reading their names. I think about these children every day. I try not to question their deaths, out of fear that I won’t be able to find my way back to sanity. So instead I remember their vibrancy, their beauty, their quintessential child-ness.

But in the dark hours, I ask why did Liam die? Why does Toby live? It is a terrible question. The randomness howls. And the world spins madly on.

*****

In March 2009, the Children's Oncology Group released a statement halting the phase 3 trial of ANBL0032, a randomized study of chimeric antibody 14.18 in high risk neuroblastoma. Preliminary results of the phase 3 trial showed a significant increase in survival among those patients who received the antibody, as compared with those who didn't. Not only was the trial stopped prematurely, but COG also stated that ch14.18 immunotherapy should become a standard part of upfront nb treatment.

The neuroblastoma world is not used to hearing good news. As a reminder, children diagnosed with high-risk disease have a 2 in 3 chance of DYING. So a trial that shows a 20% increase in survival is almost beyond belief.

This is what Dr. John Maris, Chief of the Oncology Division at Children’s Hospital of Philadelphia said about ANBL0032: “ The last clinical trial that showed a new treatment improving outcome in neuroblastoma was published in 1999, which means the study ended in about 1996. That was the one that showed that transplant helped and that Accutane helped, so it’s been a long time.”

But elation quickly turned to unease, as it became clear that ANBL0032
was a randomized trial that started accruing patients almost 8 years earlier, in October 2001. By the time of its halting, over 200 children had been accrued, ½ randomized to receive the antibody and the other ½ not.

Toby was not part of this trial. As a patient at Memorial Sloan-Kettering he, like every child treated there for the last 20 years, received a mouse-derived antibody as part of upfront treatment.

Before I go any further, I want to point out that I am a believer in research. Research has allowed my child to receive the best available treatment and it is important to understand that most neuroblastoma families gratefully sign their children up for trials, because the prognosis otherwise is so poor. In fact, virtually all children treated for neuroblastoma, both high and low-risk, are enrolled on a clinical trial. The cancer is ruthless and research offers a chance at new agents and therapies. I cannot relay how many times parents confess that they just need to keep their children alive until the next trial opens. String together enough trials and maybe you can buy another year or two for your child.

So back to ANBL0032: I, like many others, found myself asking if it was truly necessary to do a phase 3 randomized trial when the phase 1 and 2 data demonstrated that antibody was substantially better than anything we had seen before in the treatment of high-risk neuroblastoma.

More than 30 early phase studies on the efficacy of antibody treatment were published before ANBL0032 even started. If children were knowingly randomized to the non-antibody arm that was thought to be inferior, the trial was unethical. And more importantly, lives, children’s lives, were sacrificed.

Listen to John London, whose daughter Penelope was randomized to the non-antibody arm: “I have to say how unethical it is to have designed a trial where 1) the average age of diagnosis is 2; 2) the survival rate for high risk is around 30%; and 3) the survival rate for relapse is below 10% AND then take a potentially promising agent and DISALLOW 50% of these children to receive it. All in the name of "perfect science". My daughter was one of the children who was turned away. Would it have saved her? Who knows? But I sure would have liked the chance to see. Can you imagine if one of the scientists/researchers/clinicians/protocol designers for ANBL0032 had a child with high risk NB who was denied a potentially promising agent? Randomized studies in High Risk Stage 4 NB sacrifice too many children in the name of science and it needs to change.”

Not all trials need to be randomized. Many in the medical community say that randomization is necessary to determine the best treatment and that improved survival in pediatric cancer is due to randomized trials. I would counter that increased survival is due to researchers using strong early phase evidence in choosing new treatment to test against old treatment. They are really good at this. Furthermore, if randomization provides better outcomes, why have changes to induction, radiation therapy and use of growth factors NOT been tested in RCTs? And if RCTs supposedly provide “proof” that one treatment is better than another, why is Memorial Sloan-Kettering not doing transplants when this was supposedly proven by 3 separate RCTs? And why is COG not doing rapid induction, as recommended by the International Society of Paediatric Oncology in Europe?

Earlier this year, the New York Times published an acclaimed series of articles on clinical trials in the treatment of melanoma. Many clinicians and researchers have said that the science behind the new drugs has eclipsed the old rules, and ethics, of testing them.

Dr. Charles Sawyers, chairman of human oncology at MSK on melanoma: “With these drugs (in development) that have minimal side effects and dramatic response rates, where we understand the biology, I wonder, why do we have to be so rigorous? This could be one of those defining cases that says, “Look, our system has to change.’”

To that point, if the odds of NB are already so abysmal, why not allow a promising agent to be used for all children? A different trial design could have built on previous knowledge. Perhaps results could have been compared historically to other studies. Perhaps children could have been allowed to cross-over. Either way it is clear that children did not need to be sacrificed to show that antibody is an effective treatment.

Dr. Richard Pazdur, director of the cancer drug office at the FDA has said, “new drugs in development, especially for intractable cancers, might require individual evaluation: “This is an unprecendented situation that will, hopefully, be increasingly common, and it may require a regulatory flexibility and an open public discussion.”

The blunt truth is that we cannot control whether our child is diagnosed with cancer. WE do not determine when we live and when we die.
BUT we CAN control what treatment we provide. And where we have the opportunity to offer an increased chance at survival, we have the obligation to do so.

A society is defined by how it treats its most powerless and vulnerable members. We cannot turn a blind eye to injustice. As Abraham Joshua Heschel said, “To accept passively an unjust system is to cooperate with that system.” Yes, I say this to you as the parent of a child with cancer, but we are also fellow human beings. I urge you to search inside, locate our common humanity and give ALL our children a chance at life.

******

I am able to stand here today in large part thanks to the support and smarts of my brother, who is sitting right there. His care and advocacy during the past 4 years of treatment have been nothing short of incredible.

It’s not often that a brother and sister find themselves on the front lines of a cancer diagnosis, occupying opposite yet congruent sides of what some term the research/care divide. I believe that with Toby’s diagnosis, brother and sister have been able to transcend our respective boundaries. Certainly in the case of ANBL0032, I hope we are on the same side.

Toby has been the beneficiary of the dedication and care of a team of incredible doctors and nurses at multiple institutions. As a parent, I cope with one child who has cancer. Our doctors and NPs cope with the pain of hundreds of children every day. I want to thank them. They have chosen to face death, yet they engage with life. They care enough about our children to embrace hope, and through their work they affirm that people can change.

Thank you for giving me the opportunity to share my thoughts. I am grateful to be here in your company. I would also like to thank Donna Ludwinski, mother to Erik. She is the force behind my words. Her vast knowledge, pinpoint clarity and graceful support to the neuroblastoma community deserve unending recognition.

Thank you.

Good-night, sweet Prince

2011-01-26T09:44:00.000-08:00

I loved Liam before I ever met him.

In April 2007, after Toby was diagnosed with stage IV neuroblastoma, after we saw the scans of his body filled with metastatic cancer, and after our doctor told us that Toby might die from the baseball-sized tumor in his abdomen, a parent from Toby's preschool sent me a clipping from Cookie magazine. "Maybe you've seen this," she wrote. "This boy has cancer too."

I had not seen the article, but started carrying it in my bag, searching everywhere for Liam and his parents. I desperately needed to connect with another family experiencing the same terror and pain. Eleven days after Toby's diagnosis I posted a comment to Liam's blog, and received a meltingly lovely voicemail from Liam's father Larry the next day. Our paths finally crossed a few weeks later.

Toby already had tubes implanted in his chest and had been through two devastating cycles of chemotherapy. His hair was gone, his mouth was lined with oozing sores, and his days were spent in a blur of treatment. This particular morning he had to have blood drawn via a "fingerstick," a routine but painful procedure that involves pinning down the child, lancing a finger and squeezing out enough blood to perform a battery of tests. Toby began screaming immediately and was inconsolable for an hour. After everything he had already been through I didn't expect such a strong reaction.

A beautiful woman with startling blue eyes touched my shoulder, looked at Toby and said, "Don't ever let them tell you that he needs a fingerstick when they can access his port instead. It won't hurt him as much." This was my introduction to Gretchen. I followed her advice for 3 years.

Liam, our beacon and guide, the beautiful boy whose nickname was "Mr. Inquisitive" died on Monday.

On their first "playdate" in the hospital pediatric wing, as both were attached to blinking, beeping IV poles, Liam and Toby fingerpainted. Toby was tentative, unsure whether he liked the sensation of the paint on his fingertips. Liam stuck all five fingers into the paint pots, scooping out the oily pigment and brandishing it against the paper, swooping again and again into an orgy of beautiful color and energy. He chattered the whole time, laughed, described his masterpiece, tore into life with joyful abandon. And then he raced off to the next thing: to investigate the pneumatic blood tube delivery system or visit with his buddy, the custodian who mopped the floors, or a long conversation with the cafeteria workers.

I wanted to live like Liam. Each time he had surgery, he was up and walking within absurdly short periods of time -- a day, 12 hours, immediately. He loved science and magnatiles, he played with his little sister Ella with a sweetness that I've never seen before or since. He took comfort in his paci and clan of stuffed lovies. He was a child who always wanted to "go faster, daddy." He deserved to become a doctor, an astronaut, an adult.

Today is my birthday. Today I have lived 40 years longer than Liam.

Imagine if Liam was your child. Imagine administering agonizing treatment that makes your child whimper with pain. Imagine your child with no hair, hearing loss, sterility. Imagine your child not having the energy to play. And imagine this scenario replaying itself day after day for almost 4 years. The thing is, Liam's story is not singular. Every day (every day!) 46 children are diagnosed with cancer. Every day we face the fact that there is less than a 5% survival rate for relapsed neuroblastoma. And every day we are reminded that there is a "near absence" of research into pediatric cancer drugs. The reality: most children will be dead long before government funding is secured for pediatric cancer. Please don't turn away.

Give 3 friends a box of cookies from www.cookiesforkidscancer.org/ and count it as your charitable contribution for the month. Or have a bake sale at your office and find out if your employer has a matching program. If you are in the NYC area, please walk with us in Central Park on May 7 to help raise funds for research and treatment. Or find out more about neuroblastoma and donate at www.bandofparents.org

Please remember Liam and all the children who fight.

Thank you.

Love,
mooki

Walk

2010-05-05T18:54:00.000-07:00

During the year that hospital became home, Toby spent most of his waking hours in bed. Moving was difficult. So we used a wheelchair to get to surgery, radiation and countless middle-of-the-night emergency scans. And we carried Toby everywhere else: to the bathroom and the IV room, to look out the window as the world spun madly on. And we cried as his body withered, his little bones pushing through skin.

He was 4 years old, the age when children laugh and run like wildfire. He could not walk more than a few steps.

When Toby returned to kindergarten, we pushed him to Henry Street in a stroller. High dose chemotherapy had destroyed his blood counts, immune system, and stamina. Over the course of 6 months we wore out two maclarens while weathering the disapproving glances of those who thought he looked too old for a stroller.

After a year Toby began to walk again.

At first he could only manage half a block, but we learned to scope out places to rest. Soon he could string together a path of steps to the front door.

This Saturday Toby will walk 4.5 miles in Central Park with his brother Yoni and friends, to raise money for pediatric cancer research. He will walk for the ones who still battle and for the children we have lost. A chain of steps for Erin, Max, Sam, Erik, Gus, Carter, Jack, Ellie, Courtney, Austin, Santi, Christi, Eden, Emily, Lucas, Penelope, Nathan, Kendall, Spencer, Pierce, Sydney, Brody, Katie, Xinxin and sadly, many, many more.

If you live in the New York area and would like to walk with Toby, please visit kids walk for kids with cancer for more information. We would love to see you! If you can't make it please consider sponsoring Toby. His fundraising page is here.

Thank you for being with us on this journey.

Love,
mooki

5 children

2010-03-12T17:32:00.000-08:00

When I started this blog almost three years ago, I spent most nights in a pit of fear, adjusting tubes, cleaning vomit and watching my child waste away. In between terror and tears I searched constantly for "neuroblastoma blog" online, in desperate need of finding others like Toby.

I found a boy named Will, who lived in Boston, and through his father's writing discovered Erin, Max, Sam and Erik. These were seasoned neuroblastoma families, with a lot of history and knowledge. The children were at various stages in treatment and the parents carefully and precisely outlined every drug and reaction. Their blogs became my source of news and my worldview. Pretty soon I found myself starting at the beginning and reading each and every post, delighting in Max with long golden curls, following Erin at camp, marvelling at family photos of Sam with his red-headed brothers, putting Erik's words to memory and always circling back to Will, where it all started.

Each of these five children gave me respite, hope, and a sense of belonging. Through their parents' words I was able to string my days together and remain human. I linked to their sites with a sense that these were the children who would make it. How could they not make it? They each lived so large—running, laughing, overcoming every obstacle with pluck, determination and joy.

Will.
Erin.
Max.
Sam.
Erik.

In less than 2 years, four of these five children have died. Sam died today.

This is the beast neuroblastoma. Look on any neuroblastoma child's site, and the links to dead children far outweigh the links to the living. In our world we call them angels and warriors, awful words to describe a reality that should not be. I know this is difficult to read. And probably not the reason you dropped by. I'm sorry. As I wrap my arms around Toby, and virtually around Will, I wish Erin, Max, Erik and Sam were here.

***

One of the first comments to Toby's blog was from a woman who signed her name, "an Angel Mom." I didn't understand the terminology, but after just a few days in the world of cancer, I realized that her son had lost his fight. "Angel" is a word to describe the indescribable, a way of marking a child's passage to something else. I'm so ashamed to admit that I was scared of this woman, and worried that her comment could somehow decrease Toby's chance of beating this disease. Now, almost three years later, I have thankfully grown a little: I'm not scared of people whose children have died. The bigger struggle has become how to dull the pain of overidentification. And how on earth to fathom their pain.

If you can, please visit these children's sites and offer their parents a word of comfort. Thank you.

Love,
mooki

Unlimited Ride

2009-11-02T18:19:00.000-08:00

It's all so good around here. And it seems I've forgotten how to write. Mostly I drink the beauty of normal. We ride our bikes to soccer in the park, we read chapter books. and we have regular tooth fairy visits. Not a day goes by that we don't count our blessings.

The fear is still here, but the despair has grown soft. Tonight at bathtime, Toby and I were digging through the giant bins of medicine that still crowd the shelves, looking for colace to help with the side effects of our current investigational drug, ABT-751. We extracted bottle after bottle of hydroxizine, gabapentin, megesterol, morphine, and dilaudid--bizarre aggregates of chemicals that we're intimate with. At the very bottom we found a bag of syringes. They have little yellow caps and are filled with clear liquid. We used at least two of them every single day for the first 18 months of Toby's treatment, flushing his tubies before and after every infusion. What are these yellow things again? An empty one has been hanging out with the bath toys, but surely that can't be it. "Toby, do you remember what these are?" I ask. He laughs at my ignorance and says, without missing a beat, "It's heparin, Mooki. Like, duh."

Not much makes sense to me anymore. I keep a photo of Erin on my desk at work and finger the lanyard beads like a rosary. I miss Max viscerally. I mourn Owen and Pierce. Every night before bed, I catch up with Liam, Will, Evan, Nick, Erik, Sam, Jack, Hans and countless others, each a distinct, glorious child.

I ask unutterable questions, lose words, and research hearing aids. And I make Halloween costumes, mail college applications and kiss my boys over and over.

Thanks for dropping in.
Love, mooki

Thankful for every day

2009-08-10T18:31:00.000-07:00

Toby's summer has been full of sunshine, beach days, hot dog cookouts, puddle jumping, bike rides and ice cream. He's doing really well, finishing up his 10th cycle of ABT-751, with clean MiBG + CT scans and clear bone marrows. We are so very, very lucky.

And yet, shouldn't this be the norm? Every child fighting this horrible disease deserves a summer to be a kid, without constant pain, toxic chemo, life-threatening surgery or worse. Sadly, so many of our kids are not experiencing summer like Toby. Mr. Inquisitive, dear wonderful Liam, recently relapsed and is spending his third summer battling neuroblastoma. He is all of 5 years old. Sweet Evan was receiving ABT like Toby, but a routine scan showed neuroblastoma in the brain. He just finished 17 straight days of radiation and will start intrathecal 8H9 antibody treatment soon. There are too many awful summers out there... almost every child we know is spending their summer fighting for life.

Please think of these kids. And then, go hug your own children. Tell them how amazing they are and be thankful for every day.

walk

2009-05-05T19:49:00.001-07:00

Reinvent

2009-05-02T19:55:00.000-07:00

With all good intentions, my parents had me tested when i was 5 years old. I went into a room with a two-way mirror, an old man, and a clay playset of a village in the mountains.

The man's white hair scared me and I cried for my parents. I couldn't see them through the magic window, only a reflection of myself, pinched and small with worry. The man smiled kindly, coaxing me to form puzzles, count blocks and put pictures in order. Then he brought out the playset. There were mountains sloping into the sea, small square houses and a river. He asked me, "How do you get from the sea to the mountains? What's the shortest way back home?" And I was momentarily distracted, losing myself in landscape.

These were the colors: indigo water, red mountains, blue grass. For some reason they burned themselves into my memory,
reappearing at the edges of dreams many years later. But I never saw real mountains like that, or grapey water.

Until I travelled to Eilat. There was something strange about the sea cutting a gash into moon-like desert. It took 3 days to locate the landscape, but when I dove into the Gulf of Aqaba, the sun slanted down on the red mountains, the water tasted like grapes and the playset came alive.

The colors were real after all. and I found a way to change what had scared me into something that delighted me. After 13 years I reclaimed the old memory and created a new one.

This is what I want for Toby. The time to grow beyond this moment, the chance to reimagine and reinvent his life. To find what he's looking for. Or even better, to create it.

Last week he came home from school with the plans and drawings for a REMOTE CONTROL TRAFFIC AVOIDER. He drew our house with a hatch in the roof. Alongside was a sketch for a backpack with propellor and control panel. The buttons and dials were labelled 1mile to 12miles; the touchscreen had a keyboard. He excitedly explained that each of us would have a backpack and we could enter a destination like "school," where i would drop him off, before punching in "work." The backpack
would remember where each place was located, so that we would never be late.

Or his plan for a PARTY TRAIN. One car has donuts and hot chocolate. Another car has a lending library of dvds. The entire train is computerized, and most importantly there's groovy music throughout.

And then yesterday, he pulled out some poems from his folder and said, "Mommy, this poem is for you. It is beautiful." He stood on the couch and read:

You love the roses -- so do I. I wish
The sky would rain down roses, as they rain
From off the shaken bush. Why will it not?
Then all the valley would be pink and white
And soft to tread on. They would fall as light
As feathers, smelling sweet; and it would be
Like sleeping and like waking, all at once!
--George Eliot

And then he said, "But this is my favorite. It is so funny:"

This is just to say
I have eaten
The plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold
--William Carlos Williams

Oh, child of my heart! How did you know it was your mother's favorite too?

+++++

Things are going really well for Toby. He is playing soccer, riding his new bike, grooving to the music. In-between he has finished his 4th cycle of ABT-751, with minimal side effects. He has once-weekly visits to the hospital for blood counts and follow-up, with scans every 3 months. The day-to-day almost-ordinariness of our lives is a revelation and a joy. But we know that it can change in a moment. So many of our friends have recently relapsed; it happens every day and we watch helplessly as formerly vibrant children wither into frailty and despair. We worry.

Unfortunately, neuroblastoma doesn't go away, as so clearly spelled out by Will's Dad:

Neuroblastoma is the most common cancer in INFANTS. The average age is less than 3 years old at diagnosis. Five years after being diagnosed nearly half of these kids are dead. HALF.

Kids with high risk disease have to undergo the most intense chemo available and even after radiation, chemo, surgery, stem cell rescue, and immunotherapy, about 30% survive for 5 years. If neuroblastoma comes back (relapse) or stops responding to therapy (refractory, like Toby), it is usually viewed as a terminal illness.

Most children with neuroblastoma will be DEAD long before any government funding will be secured and utilized to create treatment options. Money for a cure is needed today to continue giving not just HOPE but real clinical options to save our kids from dying.

The five year survival for all kids with neuroblastoma is about 55%. This is when you include high risk kids and even the infants with tumors that self resolve and others who just have to have a tumor removed with no chemo.

55%.

What does that look like?

Let's say an average kindergarten class has 24 kids. Now assume that they are all diagnosed with neuroblastoma on the first day of school.

Five years later, when they are about to start 5th grade how many kids in that class would even be alive?

13 alive (13.2 to be exact)
11 dead

Now, lets assume that instead of those 24 kids being diagnosed with NB on the first day lets pretend that they all are diagnosed as relapsed/refractory neuroblastoma (like Toby) on the first day of school.

About how many kids would graduate high school?

1 student alive....maybe.
23 kids dead

Less than 5% long term survival of relapsed NB.

For that 1 student to even make it he/she would have had to undergo the most intense chemotherapy treatment imaginable. He/she would (most likely) be sterile, severely hearing impaired, bearing multiple scars from multiple surgeries, still on some form of therapy, receiving special services, and very UNLIKELY to live long enough to even make it to high school. If NB did not come back, the risk of a secondary cancer - FROM THE TREATMENT - would be high due to radiation and certain chemotherapy agents.

How is this acceptable? Where is the outrage? The action?

It is 2009 and we live in the greatest nation in the history of planet Earth and yet this disease that accounts for 7% of pediatric cancer cases ALSO accounts for 15% of pediatric cancer deaths???

It is the most common cancer in infants....in INFANTS...yet nothing has been done about survival. It would be pathetic if it were not so tragic.

I don't even know if a word exists to properly describe this absurd reality.

And now, as my son strives to be the 1 kid to survive treatment out of his relapsed NB classmates the one thing that stands in our way is, of all things, money.

++++++++

A week from today, on Saturday, May 9, we'll be walking in Central Park to raise funds for neuroblastoma research and treatment at Memorial Sloan-Kettering. If you are in the NY area and can join us on Toby's Team we would be thrilled and grateful. If you can add some money to the pot, well that would be amazing. Please visit www.walkforkidswithcancer.org to learn more or email Reva at walkwithtoby (at) gmail.com. And please consider making a donation to Band of Parents or MagicWater or CNCF or Solving Kids Cancer, organizations with a common cause to help save children's lives.

Thank you.

love,
Mooki + Stephen + Yoni + Toby

Erin

2009-04-11T19:29:00.000-07:00

The world lost a radiant child on Thursday. Erin Buenger, 11 years old and quite likely the first woman president of the U.S. She was brainy, compassionate, beautiful and absolutely crackling with energy and zest. Soon after Toby was diagnosed I found her mother's incredible blog and cannot tell you how many times Erin's attitude turned me around. She did great things in her short life. We grieve with her family.

Death and Cookies

2008-12-04T20:47:00.000-08:00

In the 20 months since Toby got sick, Stephen and I have watched 30 children die. They are children we shared rooms with and children we came to love through their parents’ writings. Their names are Gus, Jack, Max, Katie, Lillie, Lucas, Penelope, Brody. Their parents cope with unfathomable grief.

We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”

Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”

Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.

But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.

So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.

Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit cookiesforkidscancer.org, order something delicious, and give our children a chance at life.

Thank you.

Love,
mooki+stephen+yoni+toby

Experiments

2008-11-24T20:19:00.000-08:00

One of Toby’s favorite projects is making concoctions. Sometimes this means squeezing tiny vials of food coloring into glasses of water, watching as the dyes swirl into each other. Most days though, we make semi-edible, made-up recipes for our invisible bug friends. These are the ultimate free-form meals, experiments really, determined not by cuisine or season, but simply by ingredients foraged and found. That sad, wizened mushroom with a bit of sheen that’s been rolling around the crisper drawer for weeks? Perfection. The coffee grounds from yesterday’s breakfast? Yes. How about a few shakes of cinnamon, melted butter and a can of diet coke? Mmmm. Cornstarch and its properties are much admired, so we add a few scoops "to make it creamy." Water and oil are measured, then dispensed, as are sugar, chocolate syrup, beans and ketchup. We never know what we’re going to end up with, but we always spread it into a loafpan and bake at 350 for about 35 minutes. And no matter the taste or color or smell, Toby’s imaginary bugs are always happy with the results. Our experiments are masterpieces.

This week we experiment on Toby.

Since February, the team at MSK has treated Toby with what is essentially a relapse protocol: 9 cycles of irinotecan/temozolomide, punctuated by two doses of rituxan and cyclophosphamide, in an effort to lower his HAMA (human anti-mouse antibody) level. Scans have thankfully been clean. Kindergarten began, as visits to the hospital dwindled. Toby started drawing charts and challenging us to races through the house. He built an elevator out of boxes and string, and wrote letters to his friends on an old banged-up typewriter. There have been lots and lots of belly laughs, a mohawk haircut and a G-train costume for Halloween.

But recently our doctors decided that further chemotherapy might pose a substantial risk of secondary leukemia. Since then, Toby has been taking accutane as a stopgap measure, waiting until he can receive more 3F8 antibodies.

Now Stephen and I are not medical professionals, but we know that without transplant and with only 2 cycles of 3F8 under his belt, the chances of accutane being effective are slim. Just last month we had a horrible scare with sudden onset of severe neck pain, just like at diagnosis.

Refractory Neuroblastoma is famously difficult to treat. There is no single accepted course of treatment and parents are generally expected to participate in determining the best therapy for their child. It’s an excruciating process and Will’s Dad has written about it much more eloquently than me.

So after much research and many questions, tomorrow we drive to the Children’s Hospital of Philadelphia where Toby will start a clinical trial with an investigational drug called  ABT-751. We don’t know if it will work, but we hope it can keep the cancer away and prevent tumor growth until further antibody  therapy becomes possible. 

We hope and pray that the results will be as good as our kitchen concoctions.

Three Wishes

2008-09-14T19:51:00.000-07:00

Oh, hi. I’m so glad you’re still here.

The combination of glorious summer, massive writer’s block and too much death has kept me away. But I’m back, and will try to update with more regularity. I’m sorry for any worry I caused. And honestly, you deserve better. You’ve been so kind and good to us over the last 17 months, and then I go AWOL on you. Not nice. So are we still friends?

Wish 1
In July, we spent a few days in God’s square mile at the Jersey shore. Ocean Grove is home to the Methodist Camp Meeting Association and a slice of delicious bona-fide Americana, if you like ice cream, religion and beach. Thanks to a dear and astute friend (hi Martha!), we revived ourselves with salt spray and spiritual intent.

My aim was profane: get a tan, come hell or high water. But the beach was closed during church, which meant all the time. And I was mesmerized by the Great Auditorium, a beautiful and huge house of prayer, made totally out of wood, with sliding barn doors, curved ceilings and seats for 6000. On Sunday evening at sunset, Toby and I found ourselves inside, where “so be ye holy” blinked in old-timey lights above the altar and a rock band played on stage.

The service was unlike anything I’ve ever experienced: accessible, immediate, simple and incredibly emotional. There were no prayer books, but there was a huge video screen with lyrics and sweeping photos. People stood or sat, some danced. And there were many, many swaying hands in the air. Toby grooved to the constant music. And he said, “Mommy, do it like that,” pointing to the family in the front row who were raising their hands to God. So I did.

The doors were wide open, the sun spilled in. And then this:

“Mommy, you know what?”
(OK, what have I done? He’s about to accept Jesus as his personal savior.)
“What, sweetie?”
Pause.
(Here it comes. How do I respond?)
“I really like the drummer.”
(Ba-da-dum.)
“Me too, sweetie.”
(Whew)

And then the band left the altar/stage, and things quieted down. Toby wasn’t in any rush to leave, so I settled back. The minister introduced the time of silent prayer with heartfelt and intimate words. But first the video screen faded to black with white type. It said (and this is from memory, so I’m not doing it justice):

“Are you here?

Really here?

Do you think the music was too loud?

Are you thinking about your day tomorrow?

Maybe you don’t feel comfortable.

Maybe you’re tired. Maybe you’re ready to go home.

God is here. Are you?”

Quiet, so quiet.

And then time and space opened up for me at that liminal moment, when all is possible. I let the prayer wash over me, hungrily, gratefully, putting my heart and words together before the moment passed. And there was Toby with Gus and Max and Liam, and all the children with neuroblastoma who have become my children. And I asked the God that I don’t always believe in to please lighten their load.

As I blinked away the tears, I stole a glance at Toby. His eyes were shining, his lips curved into the tiniest smile.

And then he said,

“Mommy, do you know what I wished for?”

And I thought to myself, yes a prayer IS a wish.

“I’m going to tell you my wish even though you’re not supposed to tell wishes. Because I want you to remember it.”

“OK. But you don’t have to tell me if you don’t want to.”

“Mommy, listen. I wished to live four times on earth. I want to live four times."

And then he paused, thinking about it, checking to see if he had put the right words to his deepest, most private yearning. I had my heart in my throat, afraid to breathe, willing myself to remember every second. And then my almost-5-year-old continued:

“Yes, Mommy. I wish to live. Because I really like it here.”

*****

Toby is still in treatment. Since my last post he has endured 4 more cycles of chemo. He was the third child at Memorial Sloan-Kettering to undergo an experimental treatment utilizing Rituxamab and Cyclophosphamide, in an effort to knock down his HAMA (the immunity he developed to the 3F8 monoclonal antibody treatment). We made two visits to the urgent care center with fevers, and spent four days inpatient. He has become almost completely comfortable with having his port accessed and de-accessed. He has had more hearing loss. And he scared everyone last week with a very high LDH level, which resulted in emergency scans. Thank God, on Wednesday we found out that all scans were negative for neuroblastoma.

Oh, and he celebrated his 5th birthday (wish #2)

and spent a week in France on his make-a-wish trip (wish #3, more to come in next post!)

and started kindergarten(!!!). He has hair the color of sun-kissed wheat, and is up to 48 pounds. He reads SpongeBob comic books, takes showers by himself and eats at least 2 italian ices a day. He has a new invisible bug friend named Mercator, and he’s learning Spanish at school. He is an awesome little boy.

The NB team wants to stop the irinotecan/temozolomide chemo, because of the risk of Toby developing a secondary cancer. They will meet on Tuesday to come up with a new plan. I promise to keep you updated.

Love,
mooki

If it's Thursday, it must be surgery

2008-06-25T19:49:00.000-07:00

Tomorrow morning at 7 am, Toby will be anesthesized and have the central line taken out of his chest, where it has lived for the last 14 months. We've gotten used to his tubies and Toby plans to ask Dr. Laquaglia if he can take them home in a little plastic bag.

More than a year ago as we sat in the nuclear medicine basement at NYU my brother tried to explain what a central line looked like. I remember his strange words, gently falling on uncomprehending ears: "it's like spaghetti noodles, coming out of his chest." With noodles gone, Toby will be able to shower and swim, he won't have to endure painful bandage changes, and we'll finally be able to retire the safety pins that have riddled all his shirts with crazy patterns of holes.

The line will be replaced by an under-the-skin mediport, and a few hours later Toby will receive chemo through a new delivery system.

Subject: MIBG & MRI - GREAT!

2008-06-23T09:32:00.000-07:00

I cannot wait even a minute to share our good news. Here's the email from Dr. Kushner:

Revel in it.
We are so, so, so grateful. Thank you for believing in Toby.
love,
mooki+stephen

Prayers wanted

2008-06-18T19:05:00.000-07:00

If you pray or meditate or hope, we could sure use some of your positive energy tomorrow. Starting at 8 am, Toby will undergo a full 2-day workup of neck, abdominal and pelvic CTs, a radioactive mibg injection, four bone marrow biopsies and aspirations, a brain MRI and an MiBG nuclear scan.

We are in high "scanxiety" mode this week, especially after Toby's complaints of pain 10 days ago. This disease is relentless, and we have learned to brace ourselves for the worst, while hoping for the best. Hope with us.

love,
mooki+stephen

Things I thought I knew

2008-06-12T20:28:00.000-07:00

You can’t be in two places at the same time. Or, work and chemo don’t mix.
On a family roadtrip in 1974, we drove over the state line between Kansas and Nebraska. My father grudgingly pulled off the highway so that we could snap a quintessentially American state-straddling photo. My mother, a child of circumscribed geography, was laughing. She told me that I really could stand in two states at once. After much prompting, I took a tentative step over the border and smiled for the camera. Click. Truth is, I was uneasy in that soft, knee-high prairie. If my left foot was in Nebraska and my right foot was in Kansas, where was my stomach, my head, my heart? What space did they fill? And could that invisible, improbable line somehow cut me in half? I thought about it for a long time, through Missouri and Iowa, until the familiar blue roof of IHOP came into view, and I forgot the funny feeling in a stack of silver dollar pancakes.

I’ve wondered about that photo lately, as we negotiate the geography of one foot in “normal,” the other in “sick.” Toby’s scans were clean in April. He is in school and loving every second. Stephen and I spent some time with Yoni, planted a garden, bought a couch, and even took the boys to Israel for 6 days. Life is good, really good. We are SO thankful. And I’ve been back at work since December. But while all this was going on, Toby endured 4 more cycles of chemotherapy, breakthrough shingles, breathing treatments, thrice-daily disgusting medicines and constant blood draws. Toby’s counts are good for a cancer kid, but his hemoglobin (the part of red blood cells that carries oxygen) is consistently lower than normal. We are always on the lookout for bruises or bleeding that might indicate low platelets. We keep the barf basins in strategically placed locations throughout the house. And every bump, mole and blink is paid attention to and duly noted. Toby has been complaining recently of neck pain, which is most worrisome and will be addressed next week in an early round of scans and bone marrow biopsies. He still spends 10-12 days a month in the hospital. In our world, it’s Beansprouts in the morning and Memorial Sloan-Kettering Cancer Center in the afternoon. And I go to work every day, while Stephen holds our little boy’s hand as the irinotecan drips into his veins.

Heaven does not exist.
I could never really picture it until I read The Lovely Bones by Alice Sebold. It made me think about the different ways my own parents cope with their grief.

My mother has been going to her father’s grave for over 20 years. She spends time cleaning and refreshing the plantings, but she mainly goes to talk. She tells Manek about her days, asks him questions, gives him news of his grandchildren. And while the loss doesn’t abate, she carries on the relationship. Manek continues to live through her actions. My father deals with things differently. He has gone to synagogue on the anniversary of his mother Giza’s death, but has told me that he feels a heavy emptiness. He does not speak to her, yet I know that he experiences her loss acutely and always. I miss my grandparents something fierce. But I don’t think of them in heaven. They are here with me.

But this spring we lost so many children to neuroblastoma: Justin, Austin, Cooper, Courtney, Emily, Spencer. Beautiful, innocent, magical children. There are simply no words to relay the depth of sadness and pain we feel for their families. And one night, after kicking the wall and crying in the shower and cursing God, I re-read The Lovely Bones, and heaven started to seem more possible.

Please honor their memories by visiting their sites.

I caused Toby’s cancer.
Since the day of diagnosis, I have harbored a not-very-secret, paralyzing, almost-too-painful-to-think-about fear.,. that something I did or ate or breathed while pregnant gave Toby cancer. When I couldn’t make that logically work, I questioned our loft in Brooklyn. For 15 months we lived in an area of light industry and after Toby got sick we had the apartment tested for everything under the sun. As you know, the findings were not good: elevated levels of metals and mold. We moved quickly, first to the Ronald McDonald House, then to two different furnished sublets and finally into our wonderful little house on Temple Court.

One question plagued me wherever we moved. Did we ignorantly subject our child to a substance that could have caused this horrible, horrible disease? If you only knew how much I think about this; it’s pretty much a constant awful voice inside.

But the doctors have been adamant that Toby’s cancer is not due to environmental stressors. They have always maintained that changes to Toby’s cells could have happened very early on in development and might have already been present at birth. And others have reminded me that childhood cancer is usually not due to environmental issues because the children are so young when diagnosed. Well, a few weeks ago researchers made a major discovery. They have established that neuroblastoma is a genetic disease.

Since I’m Jewish I’ll carry the guilt no matter what, but this news is a comfort nonetheless.

95 degrees and sunny automatically means a beach day.
I’m a big-time sun worshipper. Although I don’t do the iodine/butter combo anymore, I can think of nothing better on a summer day than a trip to the beach. But Toby still has his tubies and we’ve made adjustments. On Fridays he goes to the Y with his class, spending the hour dangling his feet in the water and chatting up his teachers. On weekends we steer clear of the sprinklers in the park. And I’ve accepted that this year pale skin is the new black (hear that, Mirm?). But all that is about to change. On June 26, Toby will have his tubies removed and replaced with an under-the-skin mediport. The pool, the beach and a REAL bath will be possible for the first time in 14 months.

There’s a beginning, middle and end.
I can’t say it better than Vickie.!

I'm glad Erin has great days. It's a whole lot easier than at diagnosis when we would check her into the hospital and chemo drips would run twenty-four hours a day. We lived in the clean zone, protecting her from infections and other bugs that could lay her low. We signed informed consent forms virtually guaranteeing hearing loss, sterility, and organ failure. Everything we encountered was new and frightening.

But in some ways our situation now is much, much harder. When we started this game in July 2002 Erin's doctor handed us a road map that outlined the steps we would take to get Erin cancer free. We knew the process and approximately how long it would take. Because there was an endpoint, I could treat it like a project. I teach project management. Projects start. They end. They attempt to accomplish specific objectives. You manage them to completion. You may encounter set backs, but you re-group and keeping working towards the goal. That's what we did, and we did it well.

Now, here in relapseland, particularly in tumor progression relapseland, the bliss is all temporally finite. We start chemo again tomorrow. We hope to continue starting chemo every three weeks for a long time. The only obvious end points are set by more disease progression, unacceptable chemo toxicity, or a switch to some other treatment option (which we hope would be effective, but yield more good days).

We hope that the bad days aren't too bad and that the good ones are blissful. We hope to keep fooling ourselves that we have the energy and stamina and good luck to make it. That scientists can move fast enough to build the silver bullet that stops neuroblastoma in its tracks. That Erin's body and spirit stays strong. That Erin's tumor stays stupid and easily managed. That there enough good days to make the bad days tolerable.

We now live with more urgency and passion, and unexpectedly, much more calmness and certainty. I read it on a Nike poster in the gym: There Is No Finish Line.

I didn't like my prom.
but then i came here

And I obviously don't know much about anything.

Walking

2008-05-26T19:20:00.000-07:00

Created with Admarket's flickrSLiDR.

Thank you so much to everyone who walked with Toby in support of all the little children battling this horrible disease. Kids Walk raised more than $125,000 for NB research. Over 400 people participated in Central Park, with many more sending in donations online. It was such a day of hope! A huge thank you to Shirley Staples, who oversees the walk with legions of NYC high-school students. And a personal shout-out of love and admiration to Reva Grossberg, who created Toby's Team. It was an honor to walk with you.

365.

2008-04-17T20:21:00.000-07:00

Today is one year.

April 17, 2007: the day our lives changed forever. And one year later, after 2 surgeries, 10 week-long rounds of chemotherapy, more than 50 cycles of radiation to abdomen, spine, upper arm and neck, after countless hospitalizations, 15 days of 3f8 immunotherapy, a month of shingles, and hundreds of injections, we have some good news. We know that you don’t usually visit this blog to whoop it up, but today is different.

Today, Toby is clean.

The CT and MiBG scans showed no signs of neuroblastoma. The bone marrow biopsies and aspirates showed no cancer cells. And the urine results are normal.

Toby has no evidence of disease.

So what’s the possibility of having a giant love-fest in Prospect Park, where we all whirl around and eat lots of food and wine, hug each other and sing praises to God, friends, doctors, nurses? Where Randy sings and the sun shines and children laugh? Where we feel the power of love and hope and community? We are SO there.

Toby most likely has cancer cells still lurking in his body. Since neuroblastoma is aggressive, with an extremely high relapse rate, doctors don’t speak of remission. So treatment will continue unchanged: another round of chemo at the beginning of May, with an attempt to harvest more stem cells on April 28. And we wait for Toby’s hama level to come down.

But today we celebrate, with all of you.

*******

An email from yoram, the cancer doc:

-----Original Message-----
From: Yoram
Sent: Thu 4/17/2008 12:04 PM
To: Saltzman, Mooki
Subject: anniversary

mookus,

you and your gang have lived through a horrendous year. there have been more "downs" than "ups" and both your psyche and physical stamina have been continuously challenged (again and again). somehow, the four of you have persevered and arguably are stronger for it - this is not an empty statement, i have seen the remarkable change in all of you.

if my math is correct, one year ago today, i received your frantic call from the radiology suite at nyu with the worst possible news. i clearly remember how your voice quivered despite your best efforts to keep it together - you knew something was amiss. my own realization of the gravity of the situation was confirmed when you passed the phone to the radiologist who described the results of toby's abdominal/pelvic CT to me. even as she was talking, i feared the worst and my fears were realized when she answered my two questions affirmatively that the mass appeared as though it originated from the adrenal gland and "crossed the midline" and that it contained calcifications. until this point i was hoping that the mass was "benign" or at the worst a wilms tumor, unfortunately, it was neither.

over the past year you all have been to hell and back many times.

i've seen how these "trips" affect (other) kids and their parents. some of them become so hardened and withdrawn that they can no longer function. the dreaded disease consumes them and their entire being becomes a manifestation and reflection of it - they find it exceedingly difficult to live with their disease. i can not say the same for the four of you. while it's true that each trip tests your resolve, at the same time you become more determined and earnest to live a normal life, "tubies," chemotherapy, and endless restrictions be damned. you and stephen are advocates-extraordinaire for toby, insisting that he go to school, have play dates, and be as much a kid as he deserves to be. i'm continually amazed by this and i'm not sure that you and stephen appreciate how truly important and remarkable this is.

anniversaries are meant to be positive; reminders to commemorate and to celebrate good. today is one anniversary i would prefer not to remember.

love,

yoram

God, I love my brother.

**********

On Saturday, May 10, Stephen, Yoni, Toby and I will be walking in Central Park to raise money for neuroblastoma research.

Kids Walk for Kids with Cancer was started 7 years ago by Shirley Staples’s daughter Sophie. Since then, it has raised almost $525,000. The walk is organized by NYC middle- and high-school students and it has blossomed into quite a wonderful event. It starts at 2 p.m. in Central Park, across from Tavern on the Green at W. 67th and CPW. First is a brief program that includes doctors who treated both Shirley’s son Simon and Toby. Next is the 4.5 mile walk. Everyone is welcome, from babies to grandparents, and even pets. We will be there to walk with Toby, in support of all the brave children battling this terrible disease. The survival rate for neuroblastoma is a dismal 30%, so more funding for research is desperately needed. Funds raised will help MSKCC researchers improve the odds for our children. We hope you can join us. Please email our dear friend Reva at walkfortoby@gmail.com if you would like to participate. Thank you so much and we hope to see you there.

Love,
mooki + stephen

Food is Love.

2008-03-30T21:19:00.000-07:00

On March 1, Stephen and I cooked dinner for the first time in 10 months. I honestly couldn’t remember where we kept the frying pan, but somehow managed to wrangle schnitzel onto our plates before 8 pm. Since then we’ve gotten a lot more comfortable: replenishing the spice rack, trying out new recipes (turkey meatballs with raisins and pine nuts, anyone?) and ordering in only twice. Late at night, I find myself thinking about tomorrow’s meal. I’ve even started hitting the food blogs.

I don’t really enjoy cooking, but eating is another matter entirely. I can unequivocally remember complete meals from more than 20 years ago: my mother’s bittersweet mocha almond cake, lemony Israeli salads, the epiphany of my first mango. In the first grade I went to a heuristic school in Norman, Oklahoma. There were no defined schedules or classrooms or requirements. We could read all day in the loft or play with pattern blocks for hours. I spent most of my time in the kitchen making blue lollipops. And I can tell you exactly how they taste. I guess I’ve always been a girl who loves her food.

The weekend after Toby was diagnosed, my brother gently forced us to make a list of items we needed help with: transportation, errands, food. I could barely put a sentence together, but instinctively knew that making dinner for the foreseeable future was impossible. And then an angel named Heather Lester Rodd walked into our shattered lives, and gracefully started the tremendous task of providing us with almost 300 nights of home-cooked meals.

An amazing Brooklyn community rallied around us, friends and strangers alike, who lovingly cooked and delivered the most incredible meals. No matter how awful the day, we reclaimed our humanity around the table, with food and wine and wonderful gifts for toby, tucked in among the foil-covered dishes. We still can’t believe our luck.

It has been good to get back to making dinner. It gives us a sense of normalcy. Toby likes to help us cook. But not a day goes by that we don’t think of those 300 meals. You gave us sustenance and hope during a time of indescribable darkness. And we will never, ever be able to thank you.

------

On a non-food related note:

The last 3 weeks have been wonderful. I’m sorry to have not updated sooner, and I didn’t mean to make anyone worry. Toby sailed through this most recent round of chemo, with no diarrhea, no vomiting and good counts. We have had 7 glorious consecutive days of no hospital visits (interrupted only by a dash to the ER last night with a fever). Best of all, Toby has been able to spend 2 full weeks at school. He is very, very happy: chattering about his teacher Marina, show+tell, what he ate for snack, how he went to the bathroom alone, where his cot is, what songs Victor sings. His backpack is full of artwork, not bandage change kits or hospital masks. He doesn’t think about medicine, shots or scans for 6 whole hours. And when I pick him up, he is surrounded by smiling, healthy children. Is this real? The people I pass on the way home see just another kid sitting in a stroller. They don’t see his tubies, scars or sweet bald head. And they can’t possibly know what he has been through and the heroism he exhibits every day, to get out of bed, have breakfast and go to school. I am so proud of my wonderful boy.

We feel like we have been given a gift these last weeks. But sadly are very fearful of the coming days. On Thursday we begin a full work-up again: CTs, MIBG scan, and bone marrow biopsies and aspirates. Scan week is emotionally and physically exhausting for us and especially for Toby. We are hoping for good news.

Much love,
mooki + stephen

Some days it hurts too much to write

2008-03-06T20:47:00.000-08:00

February was a hard month. The little boy on the couch returned, barely able to lift his head from the pillow. During the time when his eyes were sunken, when his skin turned yellow and papery, when the black rings threatened to swallow his face, I couldn’t think of anything I could possibly write to communicate our desperation, exhaustion and fear.

The days stretched into weeks, and weepy lesions crept up Toby’s arm. Vomit basins multiplied in corners, under the couch, near the beds. Again. And there was diarrhea that would not stop. At night we stripped the bed over and over, but the black liquid still burned through two layers of skin.

Toby spent endless days in the ER and a week in isolation on a ward of adult lung cancer patients. Just as we were about to be discharged, his blood cultures showed two bacterial infections that required whopping doses of intravenous antibiotics, administered every six and eight hours in the hospital. We finally came home to a refrigerator packed with bags of antibiotics and an IV pole that took up residence in the playroom. While Stephen traveled to South Carolina for his father’s memorial service, I played nurse, injecting Toby with a dizzying amount of medicine, recording the hours and tubes in my notebook, so I wouldn’t forget the next dose. At night I set the alarm for 1:00, 3:00, 3:30 and 4:30, a twisted reminder of life with a new baby.

It took a while to figure out how to leave the house, but by Saturday, the snow beckoned. Here was a chance for Toby to be a real child, and even though he was weak, even though he protested, I hoped that sledding would bring back my boy. At noon in Prospect Park, I crouched on the hill, flushing his line with heparin, wiping the clave with alcohol. And then we rocketed down: Toby, me, and the medicine ball of vancomycin. He cradled it in the pocket of his parka, and shouted with joy.

I do not know how to explain what Toby’s life is like. We spend most of our time trying to distract him from the gut-sinking realization that his surroundings are truly awful: the rasping sick people with tubes coming out of their faces, the man without an eye in the elevator and the children who are playmates one day and die the next. We lost three beautiful, precious children in February, children with tremendous spirit and resolve. The world is a poorer place without Carter, Eden and Harrison.

With so much sadness and despair, it is incredibly difficult to keep going, but somehow we must, for Toby’s sake and for all the other children battling this disease. The hospital has become our second home, even though every day we fight the urge to run far, far away. Instead, we encourage Toby to inject his own saline, we turn the 14th floor into fodder for a scavenger hunt, and play guessing games about how much he will weigh. Toby writes letters to Dr. Kushner, outlining his inventions for a universal medicine that tastes good. He calls his imaginary bug friends and makes appointments to meet them in the hospital cafeteria. He talks the nurses’ ears off about trains and weekend schedules.

During this bleak month, Stephen and I each had one defining moment that brought on the tears. For me it was the day that Toby didn’t say a word for 5 hours and then whispered, “Maybe one day we can visit Elizabeth at Beansprouts?” For Stephen, it was after a grueling day of diarrhea and vomiting, when Toby asked for Mercer Mayer’s book “When I Grow Up.” Stephen’s voice started trembling as he read aloud the child’s wishes of becoming famous chef, dazzling trapeze artist, race-car driver. It’s the most innocent and universal question I can think of: “What do you want to be when you grow up?” But for parents of children with neuroblastoma, it’s not a simple question at all.

We know that Toby may not grow up. We know that school and sleds and ice cream are gifts to be savored right NOW. We are so very grateful for the opportunity to spend time with our wonderful boy, drawing maps, making party hats, taking train rides to anywhere. After the ides of February, these last few days have been excellent indeed. More soon.

Love,
mooki + stephen

Paper Anniversary

2008-02-26T10:32:00.000-08:00

One year ago in an old-world kitchen, embraced by family and friends, we held hands and got hitched. It took us 8 years to make the decision, but only 28 days to plan the wedding. The happiest day! And the honeymoon is far from over. Love you my man.
xox,
m

Zoster and boxers

2008-02-15T17:48:00.000-08:00

Toby was readmitted to the hospital earlier this afternoon.

Toby's bone marrow, the "factory" responsible for producing white and red blood cells and platelets, has taken quite a beating over the past 10 months. With each successive treatment, be it chemo, radiation, antibody or accutane, his marrow's ability to mount a recovery takes longer and is less vigorous. The result of prolonged marrow suppression is a significantly increased risk of infection as well as easy-onset fatigue, headaches, shortness of breath and episodes of bruising and bleeding requiring frequent blood and platelet transfusions. At his last re-evalution, Toby had no detectable disease including his marrow. To maintain this first and long awaited remission, Toby must endure additional toxic therapies, but because he can no longer receive antibody treatment he resumed chemotherapy a few weeks ago after enjoying a chemo-free break for a couple of months. A beaten-up marrow is like a boxer - initial blows do little in the way of slowing the boxer from getting back up, but as more blows land their cumulative effect is more pronounced and recovery becomes considerably more difficult. This is what Toby has experienced for the past two weeks following a reintroduction of chemo.

More troubling than the vomiting is the incessant diarrhea which Mooki describes as nonstop. Unable to keep any of his 12 daily pills down Toby is dehydrated, he's lost weight, and he's worn down. He's had to make almost daily trips to the hospital for "supportive care," and instead of simply admitting him to stem the tide, each time he was sent home only to return within a day or two. Especially troubling is the fact that the zoster, diagnosed more than a week ago, has gotten worse. Initially isolated to the back of his hand, it has now spread up his forearm all the way to his elbow. Not only is zoster extremely painful (it lies dormant in nerve cells waiting to be reactivated at a time when the immune system is suppressed) it is also potentially life-threatening. If not treated effectively it can spread throughout the body wreaking havoc. Toby's inability to tolerate acyclovir is likely the result of frequent vomiting and diarrhea and is the reason for the spread.

While Toby, Mooki, and Stephen do not relish their forays to MSKCC, they have become accustomed to the familiar surroundings of the oncology unit. Unfortunately, because zoster is extremely contagious for the other sick kids on the oncology floor, each time Toby has been to the hospital over the past two weeks he's been relegated to "urgent care." Urgent care is not the most kid-friendly environment. The medical team is not the one that Toby is accustomed to and Toby and gang are completely cut-off from the other kids and families whose support and company they have come to rely on during previous admissions to the oncology unit.

Over the past month, Toby started back at school. He had been joining his friends for a couple of days a week and was supposed to be back every day over the past two weeks. The vital contact he had just started to re-establish with his peers seems like a thing of the past and he's hardly had any contact with the outside world for the past fourteen days. Nevertheless, Mooki informs me that Toby's spirits (mostly) remain positive and upbeat. She and Stephen on the other hand have had an extremmly hard time with this most recent spat of bad luck. Throughout their ordeal since April 2007, no matter how exhausted or frustrated they have been, Mooki and Stephen have found the energy and motivation to engage Toby in endless creative and ingenious ways. This evening, Mooki told me that she simply hasn't had the strength or desire to interact with Toby like she wants to - she's at her wits end.

The irony of Toby's admission is that last night was the first time in nearly two weeks that he had started to feel a bit better. Toby, Mooki, Stephen, and Yoni will endure this current setback for sure, but at what cost? I worry that their respective psyches, like Toby's marrow, are beginning to sustain too many blows and may take longer to recover.

Let's hope for softer more forgiving blows.

Yoram

How quickly things change

2008-02-10T13:42:00.000-08:00

It's pretty dismal around here.

On Monday Toby started his eighth cycle of chemo.
On Tuesday he developed shingles.
On Wednesday, Thursday and Friday he had to receive treatment in the ER.
On Friday night we went back to the ER, just 3 hours after we left, because of a fever.
On Saturday and Sunday, Toby spent the days on the couch.
Diarrhea started on Tuesday, and hasn't let up yet. Vomiting started on Wednesday and continues.
Medicines currently in use: Acyclovir, an anti-viral for the shingles; Neurontin, for nerve pain associated with shingles; Immodium for diarrhea; Vistaril for nausea. None of these pills stay down for very long however, as we've found a nice collection swimming in the barf basins.

Last week Toby was a happy, roundish little boy. Today he is hollow-eyed, exhausted and miserable.

Cancer is a blessing

2008-01-27T21:12:00.000-08:00

I subscribe to an online neuroblastoma support group, which has become a lifeline of sorts over the last few months. The emails are routinely heartwrenching and usually difficult to get through, but I look forward with great anticipation to the nightly reading, ingesting each message after Toby goes to bed. And I commit to memory the names and histories of so many dear children who I will never know.

A couple of weeks ago, someone from Utah cross-posted a message that originated on another ped-onc listserv. It was titled, “We are blessed!”

I thought about that message today when I learned that a friend’s beautiful 2-year-old daughter suffered a massive seizure on Thursday while at preschool. She had absolutely no prior medical condition. And she died before her parents had a chance to say goodbye.

Toby has been sick for just over 9 months, close to the amount of time he spent inside my body, when he grew perfect fingers and toes, and pounded my stomach walls with his tiny fists, and soared on the waves of my amniotic fluid. We ate and walked and slept together, and he heard my voice always. We were one.

Through this horrible disease, I have been blessed to be one again with my son. I spend more time with him than I could ever have imagined. I am witness to his joy, his fear, his pain and his strength. I hold his perfect warm body as he enters sleep and I thrill to the music of his laughter. I know every inch of his skin, where the scars are still tender and where the tattoos pulsate with his breaths. We are in tune with our rhythms and dreams. And every day we fight against the beast while celebrating life. Nine months of cancer have given me the gift of time and the greatest love I have ever known.

We have a lot of news.

Toby is doing very well. His scans from December were clean, and preliminary reports from his scans of last week look promising. His VMA/HVA urine levels are the lowest ever. He has good energy, appetite and the softest, most wonderful head of hair. Two weeks ago he was able to spend four consecutive afternoons at school, while we sat on the bench outside. And every day he reads a little more… the words on a new-age teabag tag (“keep up!”), building signs (“elevator to street,” “cart drop-off”) and of course, subway directionals (“42 Street Times Sq” and all stops on the F, G, and A lines).

Unfortunately, Toby developed a HAMA (human anti-mouse antibody) during his 3rd round of 3F8. This means that his body has become immune to antibody treatment and he will not be able to receive more 3F8 until the HAMA disappears. This may take a number of months, and one of our doctors admitted that in Toby’s case the HAMA may never resolve. Although a humanized antibody is in development at MSK, it will most likely be unavailable for a number of years. This puts us at a difficult crossroads.

Dr. Kushner and the NB team at MSK would like Toby to start chemo once again, in an attempt to ward off possible relapse. The chemo (Irinotecan/Temodar) would be moderate dose for up to 6 months, on a cycle of 1-week on, 2-weeks off. He would continue to be tested for HAMA during this time. Last week we drove down to Children’s Hospital of Philadelphia for a second opinion. Dr. Maris suggests staying on accutane (Toby has completed 1 cycle) for 5 more rounds and then starting an experimental drug called ABT-751. Tomorrow we will hopefully meet with Dr. Kushner to discuss our next treatment plan, which will probably begin on Tuesday.

We want to thank you again for all your love and support. We ask for your prayers of compassion and comfort for our friends Sara and Eric, as they grieve for their daughter.

Love, mooki + stephen

Bernie

2008-01-05T21:36:00.000-08:00

My father-in-law, Bernard Pannone, died this morning. He shared with his grandson a love of ice cream, an ever-curious mind and a great appreciation for how things work. Soon after I met Stephen, I began to hear stories about this wonderful man who fathered five incredible children. He was a gentleman in the true sense of the word: courteous, honorable, good and gentle.

Bernie had a knack for speaking a completely made-up language of gibberish and making it sound real. Toby was enthralled by this unexpected gift and spent hours with his grandfather in a shared world of emphasis, hoots and laughter.

During family gatherings I could usually find Bernie and Yoni engaged in long conversations about engineering, history or boxing. And I counted on Bernie for a connection to Stephen’s past, ever-ready warmth and love, and a constant willingness to engage.

I loved his voice, his deep abiding faith and his tendency to fret in the most genteel way. I will miss him. I feel so lucky to have become a part of his family.

May his memory be for a blessing.

And the opposite of ambivalence is...

2008-01-01T20:21:00.000-08:00

Ambivalence

2008-01-01T10:13:00.000-08:00

I am always amazed at Mooki's posts. They are heartfelt and painfully personal. They are written with honesty and candor and they grip you like a good story. Mooki has wanted to post an update for some time now. In fact, she has the beginnings of an update on her laptop, but fatigue and fear, as well as uncertainty and superstition have prevented her from completing it.

As the new year is upon us, many of us make resolutions and plan for the future. We look ahead and we forecast. We recognize that while we may not see each endeavor through to its end, we can always try next year because for the most part, time is on our side. This is natural. For Mooki and Stephen the future is far less natural and certain. For the most part, their future is defined by increments between re-evaluation scans and bone marrows, HAMA and urine tests. Perhaps more than anything, they have come to realize that no matter how much they want to plan ahead, living with neuroblastoma is at best day-to-day. Yet my portrayal is too simplistic, because even day-to-day planning is often only tenuous and subject to sudden change. The past eight months have given Mooki and Stephen reason to pause. Where they used to take good news about Toby's "state" as a harbinger of future good, they now do so only provisionally. Not infrequently, they have seen their own and others' good news quickly turn sour. They know too many children who have gotten good news only to have their disease ultimately progress or relapse, and some have died. For this reason, Mooki has been reluctant to share with you that Toby's most recent MIBG scan and bone marrow biopsies (the results of the bone marrow aspirates are still pending) were both "clean." By publicly declaring their good news, Mooki didn't want to jinx things. She knows that today's good tidings might be tomorrow's discontent. I also partially blame myself for Mooki's dis-ease and unwillingness to update the blog.

This past week my family and I spent several days with Toby et al. I hadn't seen Toby in a month and I was greeted by a fuzzy-haired and less gaunt little boy who still walks somewhat awkwardly. My girls and Toby played in Prospect and Central Park, they put on shows for us, they watched TV together, and just hung out. While we all were enjoying each others' company, I could sense that Mooki had attained a new and more mature station on the neuroblastoma learning curve. She was uneasy with the news of Toby's MIBG / marrow results (a true sign of understanding). Several times she probed me with the question, "it is good isn't it?" At the time, we didn't know that Toby's marrows were clean, and I found myself doing what I am so critical of some of my colleagues for doing - that is, rather than being a straight shooter, I hedged and I qualified. Instead of giving Mooki the honest answer that she deserved, "yes, it's good news, but we both know how neuroblastoma has a tendency to come back and bite you in the butt, so let's take it face value," I said, "yes it's good, but let's wait until the marrow results are back." I hadn't given Mooki enough credit, her level of understanding was greater than I had realized. She appreciated what I was trying to say, what I wanted to say, but what I was unable to verbalize. Maybe this is why she asked me to post an update, because she knew that what I couldn't do in person, would be easier for me to do in writing. Another reason for my posting is to let you know that Toby was readmitted to the hospital yesterday evening after getting the first of five daily infusions of 3F8-antibody treatment and Mooki's plans to finish what she had started took a back seat to more pressing matters.

Toby spiked a high fever, broke out in hives, and developed shaking chills. This constellation of symptoms necessitated hospitalization and starting a cocktail of three intravenous antibiotics in case the cause was a bacterial infection and not an allergic reaction to the 3F8. Toby and Mooki spent New Year's eve at Sloan, not exactly how they had "PLANNED" to bring in the new year. As of this morning, Toby was still having fevers, but he was in pretty good spirits and relatively upbeat.

What comes next is unclear. If the cause of Toby's fever is a bacterial infection, he might need to have his "tubies" surgically removed. This is because "tubies" are a common source of bacterial infections and once infected they tend to "reinfect." Toby's also due to resume 3F8 tomorrow, but it's not sure that this will happen either. The medical team has yet to decide what the next step is. This is very frustrating for Mooki and Stephen. Mooki told me that she wished that the medical aspect of Toby's care was more "scientific and less wait and see." I told her that I sympathize with her and that I know what she means - I do.

Mooki asked that I send her and Stephen's best wishes to you all this New Year. Let's hope that 2008 will be a better year for Toby, Mooki, Stephen, and Yoni than 2007.

Yoram

How Toby Is

2007-12-18T16:10:00.000-08:00

A few weeks ago, in between Toby’s morning and afternoon radiation treatments, we went to the Sony Wonder Lab in midtown Manhattan. Toby’s eyelashes were just starting to grow in, giving his eyes the slightest dark rim, as if they were lined with makeup. For the first time in many, many months there was definition and softness to his face; he looked pretty and felt pretty good. No nausea yet from the radiation to his neck and abdomen. No pain from injections or infusions. No hives. A little tiredness perhaps, but nothing we couldn’t handle.

We waited for a long time with the tourists and day-trippers, finally entering the sardine-packed elevator. Toby wanted to push the buttons, and stood near the door. A little girl, maybe 6 years old, stared at Toby and asked her father in Hebrew, “Why is that boy bald?” The dad glanced in our direction, assumed that we weren’t members of the tribe, and confidently told his daughter, “He has lice, and his parents had to shave his head.”

I found myself in a tight spot. My first thought was to laugh in relief. Lice? Are you kidding me? AS IF. But then the shame and self-righteousness poured down in equal measure. Does Toby look like he has lice? Did I remember to wash behind his ears? Oh God, am I a slacker mom? Whoa. Just who is this idiot anyways? And why is he pontificating to his greasy-haired child about Toby’s lice? Who made him king of enlightened Semitic reasoning? I opened my mouth to set him straight.

And then I remembered that Toby is bald because he has cancer. Cancer so awful that it may kill him. Cancer so aggressive that it has required near-constant vigilance for the last 8 months. Listen honey, he’s bald because an hour ago he was lying naked on his back with chin strapped and restrained, receiving direct high-energy beams of radiation to his neck. And he’s going back for another round at 3:00. We tell him stories through the intercom and he lies perfectly still as the machines rotate around his body. He is a very sick boy. I wanted to say all this, but didn’t. And then I found myself wishing that he had lice.

*****

Since that day Toby finished 14 rounds of radiation to his neck and 24 to his abdomen. We’ve gone through a second cycle of 3F8 antibody treatments, which was similar to the first. I’ve returned to work part-time. And Toby has spent 9 hours at Beansprouts (school!) over the course of 5 days. He’s not bald anymore.

We’ve gone to Powerplay (an indoor playspace) twice, visited wonderful friends in Princeton, been to Fairway (hallelujah!), eaten at Uncle Moe’s, looked at the dinosaurs at the Museum of Natural History and made latkes. Over the last 2 weeks we’ve heard that more than 50 of you baked and packaged cookies, to help fund new treatments for children fighting neuroblastoma. We are so blessed to have a bit of normalcy and such wonderful friends.

This Friday Toby will have an MiBG scan and bone marrows, the first evaluations of whether 3F8 treatments have been effective in chipping away at his disease load. The days leading up to scans are incredibly difficult for us. There’s the very welcome possibility that Toby has less neuroblastoma in his body. There’s an equal chance that the disease is stable or has progressed. We have no way of knowing. And so every day is a battle against fear, uncertainty and what-ifs. Toby complained of eye pain yesterday: It could be nothing or it could be neuroblastoma. He’s been tired and not himself since Saturday… again, it could be delayed effects of radiation, low hemoglobin or cancer.

So when people ask, “How is Toby?” it’s a hard question to answer.

We’re holding on to hope. And we’re glad you’re still checking in.

much love,
mooki + stephen

cookies on cnn

2007-12-10T07:04:00.000-08:00

an incredible clip about the cookie effort and neuroblastoma here. many of you know about liam from earlier posts... he was diagnosed 2 months before toby. although his battle with cancer has been very different from toby's, he and his parents, gretchen + larry, have been an inspiration to us during the last eight months. gretchen is the force behind cookies for kids cancer. please make sure to order your cookies before december 14.

an update on toby very soon!

love, mooki + stephen

Acts of Kindness

2007-12-06T18:30:00.000-08:00

During college I fell in love with William Wordsworth, especially his beautiful, meditative poem "Tintern Abbey." Page 155 of my Norton Anthology is filled with an 18-year-old's passionate marginalia: triple underlines, exclamation points, arrows and stars. The marks are tipped in with such excitement that they bleed through to the next pages.

I thought of Tintern Abbey yesterday, when I heard how many people have made their way to Crown Heights, Brooklyn, to bake and package cookies for hours and hours at a time. I had no idea. You are all giving Toby and hundreds of other children a chance at life. We cannot even begin to thank you.

Be assured that your acts of kindness and love will be remembered.

But oft, in lonely rooms, and 'mid the din
Of towns and cities, I have owed to them
In hours of weariness, sensations sweet,
Felt in the blood, and felt along the heart;
And passing even into my purer mind,
With tranquil restoration:--feelings too
Of unremembered pleasure: such, perhaps,
As have no slight or trivial influence
On that best portion of a good man's life,
His little, nameless, unremembered, acts
Of kindness and of love.

love, mooki + stephen

Cookies for Cancer

2007-11-24T16:08:00.000-08:00

"It will be a great day when our schools (and pediatric cancer research) get all the money they need and the air force has to hold a bake sale to buy a bomber." -adapted from Women’s International League for Peace and Freedom

Next week neuroblastoma parents, together with more than 200 volunteers, will begin baking 96,000 gourmet cookies in an attempt to fund new treatments for our children. You might find it hard to believe that no government or private foundation funds are available for this. You probably find it odd that parents need to sell cookies to save their children's lives. The reality is that the government classifies neuroblastoma as an "orphan" disease, one with fewer than 200,000 affected individuals. Diseases with a relatively small patient population are at a significant disadvantage in the competition for resources. So even though there are promising treatments in the pipeline at Memorial Sloan-Kettering, they can't go into the clinical trial phase without funds. And that's why we need you to buy cookies.

The delicious cookies come from renowned cookbook author Sally Sampson's recipes. The ingredients are all natural and every order will be beautifully gift-boxed. Best of all, 95% of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated, from ingredients to kitchen facilities and cold storage.

We know that many of you are about to begin the tireless search for the perfect holiday gift and we hope that you'll take advantage of this opportunity to give a gift that not only tastes good but feels good.

You can purchase online at www.cookiesforkidscancer.org

Thank you from the bottom of our hearts.

love, mooki + stephen

This is what I'm thankful for

2007-11-21T18:09:00.000-08:00

*stephen
*an amazing community of family, friends and strangers who have come together to feed, strengthen and care for us over the last seven months
*my brother, yoram, whose gentle, knowledgeable and loving presence continues to make a daily difference in our lives. he listens, guides, and explains with total dedication and love. he faithfully treks to brooklyn, leaving behind his own family and job to be with us + wash our dishes + parent yoni + run interference with doctors. we call him at all hours of the day and night. we badger him with constant, panicky questions. when i can't put two words together, he writes phenomenal posts for the blog. we can't imagine going through this nightmare without him and we don't think he will ever know what a huge support he is.
*beansprouts
*our older son yoni, who has been through so much, and is still a straight-A student, a loving brother and fantastic human being
*park slope parents
*the incredible adults who make playdates with toby, bringing music, stories, activities and normalcy
*the dedicated and loving team of nurses, doctors and staff at mskcc
*my parents yochi + shabtai, uncle greg, merci, aunt anna, cousin catherine and aunt betsy, who have all come to stay with us under incredibly difficult circumstances
*psjc
*the photographers who orchestrated the art of giving fundraiser
*the countless generous souls who have donated blood, platelets and money
*a great, understanding workplace
*temple court and prospect park
*the parents of children fighting neuroblastoma, who have inspired me with their courage and hope

and most of all i am so thankful for toby... that he is alive, and that i have the opportunity to watch, learn and laugh with him. toby my sweet boy, you make my life beautiful.

love,
mommy

Pain and Memory

2007-11-18T17:59:00.000-08:00

When Toby was eight days old, my father held him during the ritual of circumcision. We thought it would be a great honor, and my father readily agreed, but after the ceremony he told me that he was terribly shaken by the experience. I don’t remember the actual cut (I wasn’t in the room), but I do remember Toby’s awful, innocent screams, which propelled me into the kitchen, where I gave him my pinky finger to suck, an abysmal but temporary comfort. Stephen was crying in the bathroom and my father was completely white. A few minutes later we regained some equilibrium. Our family and friends wrapped us in embraces, I nursed Toby to sleep, and we felt the magnitude of welcoming our new baby into history and community.

But my father was still disturbed. Later that evening we spoke about pain, and whether it was possible that Toby would remember the trauma associated with circumcision. My father felt strongly that there had to be some remnant of pain hardwired into Toby’s synapses. The experience was too intense to simply slip away.

Circumcision seems like a walk in the park compared to last week. And after holding my writhing child for five days of 3F8 treatments, I wonder about pain and hope it’s not permanently etched into Toby’s pathways.

3F8 is a mouse derived monoclonal antibody that is injected into the bloodstream where it finds neuroblastoma cells, attaches to them and then signals the patient’s own white blood cells to kill the neuroblastoma. The white cells are boosted into “killer” cells through daily injections of GM-CSF. With time, as Toby’s own immune system recovers from chemo and becomes stronger, the 3F8 treatments may help his body learn to fight tumors on its own. The aim is to give repeated 3F8s for up to two years, on a cycle of one week on, two to three weeks off.

The main side effect of 3F8 is pain because it also attaches to a marker on nerve cells. And the pain is excruciating. I can barely describe it. And that’s the real reason why I haven’t been able to write in two weeks. All I wanted to do by Friday was crawl into a dark, quiet place, and not relive the experience by putting pain into words.

Before the infusion started Toby was premedicated to ward off fever, pain, and possible allergic reactions. He was unaware of what was about to happen, and lay on the bed watching tv. After about 15 minutes he started fidgeting and twitching, as if he couldn’t find a comfortable position. And in another 5 minutes the full force of pain bore down on him. The room was filled with medical personnel, who monitored Toby’s reactions to the infusion. Oxygen was started, a nebulizer was used to open his airways and pain “rescues” were pushed into his bloodstream every 5-7 minutes. His pulse climbed to 187. Over the course of 50 minutes, we went through boxes of hot and cold packs which we rubbed on different parts of Toby’s body where the pain was localized, mainly in the abdomen. We tried to soothe him, to hold him, to dim the lights and follow his lead, but he truly was alone in the land of pain. And then, exhausted, covered with hives and drenched with sweat, Toby fell asleep.

By day 3 we began to find a coping rhythm, although the pain was even more difficult to observe. Toby used fewer rescues and we crawled into the bed with him for the duration of the infusion. He needed to grip onto my shoulder during the worst waves. On day 4, he began keeping track of his blood oxygen numbers and refused oxygen and the nebulizer. I have no idea how it was possible for Toby to do this… imagine being in the throes of transitional labor and telling the obstetrician that you would like to discuss apgar scores. Toby also stopped screaming and requested that we not talk to him. He seemed to know what would happen and focused all his energy on internalizing the pain and taking deep breaths. Incredible, really. Other NB parents told us that the week would be very difficult, but get easier each day. I actually found the reverse to be true. The pain was shocking on day 1, but knowing that it would return each day was almost more than I could bear. Also, contrary to what the doctors told us, the heavy narcotics did not have an amnesiac effect; on days 3 and 4 Toby wanted to know exactly when the infusion would start, and he ordered us to get the hot packs ready for his tummy, the cold packs for his head.

The afternoons and evenings were a complete blur. Toby was completely knocked out yet restless. He couldn’t pee or walk, much less eat or drink. The soles of his feet and his entire groin area were intensely sensitive and he found it difficult to stand. And then morning would come, we would head to the hospital, give him the GM shot, watch as he ate a big breakfast, and wait for the pain to start.

By Sunday Toby had recovered enough to make a trip with me to the Staten Island Children’s museum and the Prospect Park Zoo. We had a fabulous day. And on Monday, he was permanently tattooed in 7 spots, to help guide the radiologists during radiation treatment. We are now in the middle of 24 rounds of radiation to the neck and abdomen.

I’m sorry it has taken me so long to post. Living with neuroblastoma is so singular, isolating and overwhelming, that I feel like my words don’t even come close to describing what is really going on in Toby’s life. We can’t thank you enough for checking in on us, sending supportive emails, delivering food, visiting if you have a chance.

----

The painful reality of neuroblastoma is that more than 50% of children will relapse, and the survival rate for children diagnosed with high risk disease like Toby is in the neighborhood of 20%. We have joined with other NB parents to act against these terrible odds. The Band of Parents, together with loads of volunteers, is making and selling gourmet cookies to raise money for research, development and treatment at Memorial Sloan-Kettering. The delicious recipes are from renowned cookbook author Sally Sampson’s recently released cookbook, Cookies. The cookies are $30 a dozen and almost all of the proceeds will go directly to research at MSKCC. You can purchase online at www.cookiesforkidscancer.org. We hope you’ll buy lots of these delicious cookies and ensure that Toby and all of the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Thank you so much.

Love, mooki + stephen

Endurance.

2007-11-04T19:31:00.000-08:00

Today is the NYC Marathon. Three of Toby’s docs will be running and we plan to cheer for them as they approach mile 7 in Park Slope. Toby stayed up late yesterday, painting hand-lettered signs with each of their names.

I’m a huge marathon fan despite a complete lack of athleticism. I don’t quite understand the willingness to endure such physical punishment, but I love the enormity of the event. I am completely in awe of the strength and stamina required to run 26 miles. And I’m inspired and amazed by the runners.

Toby has been running the marathon each day, for more than 6 months. In that amount of time, he has had more chemo than most adult cancer patients (waaaaayyy more than Lance Armstrong), he has undergone 2 life-threatening surgeries, 14 rounds of radiation, countless transfusions, daily painful injections, monthly radioactive scans, disgusting medicines, and a complete upheaval of his life. He does not go to school. He has hearing loss. He grinds his teeth during sleep. He tires easily. And every day is a battle.

By his 4th birthday Toby had learned how to swallow pills, how to lay perfectly still for 90 minute full-body scans, how to restrain the urge to vomit until mom or dad locates the basin, how to don a mask and gloves during neutropenia, how to best position his leg when receiving the burning injections of “G,” how to walk on his toes when his heels are numb from the neuropathic effects of chemo, how to request that the anesthesiologist inject propyphol slowly before a procedure, how to still find joy and laughter and beauty even when restrained to an IV pole, with constant nausea, diarrhea and vomiting.

Toby runs the marathon with a remarkable group of children who suffer for months and years at a time. They are the faces behind the statistics and their stories tear my heart out again and again. Many of them have died, leaving behind aching families and pain that will never go away. I wish that Congress or Oprah or the drug companies would find these kids inspiring. It is simply unbelievable that only 5% of the total National Cancer Institute budget is allocated for pediatric cancer research and development. And to put it in even greater perspective, ALL of cancer research funding is equivalent to what is spent in Iraq in just a few days. Children are dying, and the world turns away.

Tomorrow the New York Times will devote pages and pages to the marathon. I usually love to read this kind of news, but I don’t think I’ll have a chance.

Tomorrow is the day we start 3f8 antibody therapy. It will be the most painful experience in Toby’s cancer marathon to date. The 3f8 rooms are where the screams come from, screams so prolonged and painful that it hard for an observer not to break into tears. The pain is so intense that no amount of pain medication can effectively block it. Toby will most likely be given heavy narcotics (3 times more powerful than morphine), but everyone has warned us to expect a very, very difficult day. And we will repeat 3f8s on Tuesday, Wednesday, Thursday and Friday.

Toby will endure, as he has until now. Please keep him and all the other children battling cancer in your thoughts.

love, mooki and stephen

Finally, 3F8

2007-11-02T06:33:00.000-07:00

Toby will be starting 3f8 antibody treatment on monday. After reviewing the scans with radiology, Dr. Kushner feels that they haven't changed since august and he is eager to forge ahead with antibodies and radiation. Toby still has disease in the humerus and 1 or 2 vertebral bodies, but Kushner feels that it is probably marrow, not boney. The MRI of the liver was clean. All four bone marrow biopsies are negative, as are the aspirates. While an area in the mid-abdomen did light up, the NB team feels that it is due to post-operative changes and not tumor re-growth. We had a very, very scary week and while there is still ambiguity, we will tolerate it. I will update again with the details, but wanted everyone to know that we are ok.
love, mooki and stephen

Limbo

2007-10-30T15:35:00.000-07:00

Living with cancer is a roller coaster, both real and imagined. Just as Toby, Mooki, and Stephen were attempting to have a few quasi-normal days, something that Toby desperately deserves, the neuroblastoma crept back to the fore (as if it had ever gone away) reestablishing itself and making sure to squash any chance at normalcy. This is the reality of living cancer.

Life has been hellish since Thursday, when Mooki and Stephen received the call to return to Sloan because one of the images on the MIBG scan “lit up” where it hadn’t done so previously, signifying the potential of disease progression. Five days, and two additional scans later, it’s still not clear if the neuroblastoma has spread or if the “lighting up” is nothing more than an inconsequential “artifact.” Mooki and Stephen’s every moment has been filled with uncertainty, fear, doubt, anger, and loneliness. They have been left to assume the worst and like so many times until now, their resolve and hope has been repeatedly trampled upon. This imagined torment of cancer is all too real and just as devastating as living with its physical manifestations.

Hopefully, by tomorrow it will become more apparent what the significance of the abnormality seen on the MIBG scan is. It is extremely important to know exactly where and how much neuroblastoma remains in order to know what the next best treatment for Toby is.

The life that Mooki and Stephen once knew is a thing of the past. Each morning they wake up and make sure that Toby is comfortable. They give him his medicines, check his “tubies,” feed him breakfast and then make the trip to the hospital where they spend their day while Toby endures an assortment of poking, prodding, and testing. They return home late in the evening where they briefly catch up with Yoni, feed Toby, give him medicine, get things ready for the next day, pay bills, and collapse into bed. Often sleep comes only after long periods of thinking “what if” and then the cycle resumes the next morning.

In my prior posts I have reached out to you for a variety of reasons. Today, I would like to do so once again. Just like Toby, Mooki and Stephen also need some semblance of normalcy in their lives, if only as a pleasant distraction. Instead of eating the wonderfully prepared meals in the familiar (and at times depressing) environs of their home, they need to eat out with and at friends’ homes. Instead of spending countless hours alone at Sloan, they need some company to help pass the time. This would be a huge deal for Mooki, Stephen, Yoni, and Toby and while they may not be able to or may not feel like accepting each and every invite, please make the offer.

Yoram

2007-10-25T20:14:00.000-07:00

From: "stephen pannone"
To: "Mercedes Pannone"
Sent: Thursday, October 25, 2007 8:40 PM

> Mom-
>
> Sorry to be out of touch, we're just trying to get
> through this week of scans. So far we have had the CT
> done (wed.) Today was Echo and MIBG. After the scans
> today we had a few hours to get out. We went to the
> City of New York Museum. In the cab on the way home we
> had a call from the hospital (5:30 pm), they wanted us
> to come back in for a rescan because they saw
> something suspicious. We got back there but the
> scanner was having technical problems so we are now
> home without clarity and with the knowledge that
> something else may be there. We don't know anymore and
> just have to get through the night knowing that we may
> have more bad news in the morning when we
> are back at Sloan.
>
> stephen

Home

2007-10-22T19:38:00.000-07:00

Toby’s white count rose to 1.6 during the night, enough to spring us out of the hospital after a 12-day stay. He is ecstatic to be back home.

This is what he did from 4:00-9:00 today:
took his trike out for a ride,
had an orange kiss ice at uncle luigi’s,
visited ernie at the pizzeria,
left a note for his friend zoe,
checked out the new halloween decorations on the block,
built a fort out of pillows,
jumped on the bed,
rolled his schoolbus all over the mattresses,
sat on the steps and grooved to some music,
sent silly messages to christopher from the window,
had a few spoons of corn, 1 cucumber spear, 10 tortilla chips dipped in tomato sauce, a bowl of vanilla ice cream, and a cup of grape juice,
kissed yoni’s knees,
took a bath,
tried on his halloween ladybug costume 4 times.

It has been the BEST afternoon.

love, mooki + stephen

A Quick Update

2007-10-19T19:33:00.000-07:00

We are still in the hospital, waiting for Toby's counts to come up. He is doing well, watching a lot of tv, starting to eat and making countless laps around the inpatient ward each day. Stephen and I are taking turns sleeping at the hospital. Scans are scheduled to begin next Wednesday. I'll post another update soon.
love, mooki

Abbreviations

2007-10-11T16:51:00.000-07:00

Toby is back in the hospital.

Chemotherapy's impact on the bone marrow and other organs typically reaches its maximum effect 7-10 days after a cycle. It is at this point when blood counts reach their lowest and when fever and the risk for infection is greatest. Toby is now 10 days out from cycle #7 of chemo. His white blood cells are low, i.e., neutropenia (N) and almost on cue, he spiked a fever (F) last night, guaranteeing an automatic admission for I.V. antibiotics for what doctors call "F/N."

Toby also has pretty significant nausea (N) vomiting (V) and diarrhea (D). One of the chemo agents he got, irinotecan, is known to cause diarrhea, but because Toby has so few white blood cells, which normally ward off infection, the diarrhea and vomiting might be a sign of a bad infection of the bowel wall commonly seen in post-chemo neutropenic patients called typhlitis. For this reason, instead of the usual one or two antibiotics for F/N, Toby is on three antibiotics just in case he does have typhlitis. A mainstay of treatment for typhlitis is bowel rest, with minimal to no food. Toby's gut actually sounds like it's "working" so while his doctors aren't allowing him to eat anything (he doesn't have much of an appetite according to Mooki) they are letting him have a clear liquid diet (CLD). Because Toby isn't in the mood to eat he has to get nutrition somehow else. The two options are either nutrition via a tube that is snaked through the nose into the stomach (an NG tube) or nutrition directly through the vein. Because of the N/V/D, feeding Toby via an NG tube isn't the best option, meaning that unless he makes a quick recovery, he'll need I.V. nutrition, known as total parenteral nutrition (TPN).

As you can imagine, Toby's pretty wiped out and lacking in energy. He received a blood transfusion today and hopefully that will help a little, but the constant V/D is extremely draining and fatiguing. The retching associated with vomiting is painful and the frequent diarrhea is irritating both to Toby's body and to his spirit.

Toby will be at Sloan until his blood counts recover, he is fever-free, without an active infection, and able to eat and drink on his own. He is scheduled for another round of re-evaluation scans (CTs, MIBG, MRI, blood tests, and bone marrows) in a couple of weeks to see how the neuroblastoma responded to this most recent round of chemo. Let's hope that Toby has a speedy and uneventful recovery, that he makes it home before he has to endure the next barrage of testing, and that he doesn't encounter anymore abbreviations.

Yoram

Fundraiser October 11th in Soho

2007-10-05T18:42:00.000-07:00

A wonderful friend has organized a photography event, which will take place on Thursday, October 11 from 6:30-8:30 at 110 Greene Street in New York City. A group of 7 very talented, emerging photographers have generously donated their photographs. There will be light food and drink and an opportunity to view and purchase beautiful artwork. Children are welcome. All proceeds from the door and sales will benefit neuroblastoma research and development at Memorial Sloan-Kettering through the Children's Neuroblastoma Cancer Foundation.

Funding for research and treatment of pediatric cancers is insufficient to meet the needs of children with neuroblastoma. The therapies these children endure are long and painful, and there are limited options to save their lives. However, there are promising therapies in the pipeline that could soon be manufactured for testing in clinical trials. Money raised at the photography fundraiser will be of direct help to Toby and many, many others in the near future.

We are immensely grateful to Luba Proger, Adi Lavy, Ignacio Ayestaran, Jason Guerrero, Leonid Khanin, Maria Aiolova, Tina Roth Eisenberg, Evans Real Estate, Evelina Ioselev, Patricia Tallungan, dishes, Nuvo, and all those who have contributed their time to make this event a reality.

For more information, please visit www.orangefog.com/art_projects.html

7 is not a lucky number

2007-09-28T12:03:00.000-07:00

As recently as 2004, standard first line treatment for kids with neuroblastoma consisted of seven cycles of chemotherapy. As some of you may recall from my prior posts, chemotherapy is by no means a smart bomb; that is, in addition to targeting neuroblastoma cells, chemo also damages healthy cells throughout the body. It is for this reason that now whenever he watches T.V. or listens to music, Toby has to crank up the volume and ask (always politely) those around him to speak quietly. This is also the reason why Toby painfully struggles with horrible constipation; why he has headaches, lightheadedness, and a resting heart rate that most of us reach only with vigorous exercise; why he easily bleeds and bruises, often with no preceding trauma or other obvious trigger; and why routine coughs and colds most of us don't give much thought to are so potentially dangerous for Toby. These are the immediate consequences of chemotherapy. They are serious, frustrating, and life-altering. However, they pale in comparison to the possible long-term side effects like, infertility, deafness, heart and kidney failure, nerve damage, hormonal imbalance, secondary cancer, and even death. The last two are particularly ironic. Because of these significant "toxicities," doctors and scientists are continually trying to come up with more effective and less toxic treatments. In the case of neuroblastoma, such an approach was achieved by reducing the number of initial rounds of chemo from seven to five and by adding things like antibody treatment. Unfortunately, five cycles of chemo is not enough to rid all kids of their neuroblastoma. In these cases the first option often means resorting to a sixth or even seventh cycle of more chemo - this is what Toby has to look forward to.

After five cycles of chemo, Toby still had evidence of neuroblastoma in various parts of his body so he had a sixth cycle, incorporating one drug he had yet to be exposed to. Following the sixth cycle and radiation to his arm, Toby had re-evaluation scans; as you know from Mooki's most recent post, the news is not good. Toby still has disease in his bone marrow, as well as in his femur (the long bone in the leg). What this means is that Toby's disease is classified as primary refractory disease. What is the reason for the refractoriness? I'm not sure there's a single answer, but one answer Toby's doctor suggested relates to the significant amount of disease that Toby had when he was initially diagnosed, which is taking extra cycles to clear. I believe that the actual biology of the neuroblastoma is at play here as well. Whatever the reasons, Toby is now scheduled for a seventh round of chemo to start this Monday. This time he will be given three drugs he has never received, with the idea that the neuroblastoma cells might be (more) susceptible to this cocktail. Because most kids with neuroblastoma do not require more than five cycles, there is not much evidence as to the efficacy of these three agents, carboplatin/temozolomide/irinotecan. However, the toxicities of these drugs is known.

Carboplatin is a cousin of cisplatin, a drug which Toby received during cycles 3 and 5 and which can lead to an assortment of side effects including, hearing loss, kidney damage, altered nerve sensation, and low blood counts. Temozolomide also causes low blood counts, as well as nausea, vomiting, bruising (because it drops the platelet count), tingling in the hands and feet, and insomnia. Finally, there is irinotecan, best known for the severe diarrhea it causes. In addition, it can cause low blood counts, hair loss (so much for Toby's regenerating follicles) headache, sweating, and mouth sores.

Mooki and Stephen are anxiously awaiting the next phase of treatment which follows chemo - 3F8 antibody treatment. 3F8 acts in a different way than chemo. Chemo destroys cells, often by targeting a part of the cell responsible for cell replication or by preventing cells from correcting parts of the cell that are damaged. 3F8 on the other hand, is a biologic drug, it works in a different way by targeting certain cell receptors found only on neuroblastoma cells. For 3F8 to work most effectively neuroblastoma has to be completely or almost completely eradicated. This is the reason for an "unlucky" seventh cycle of chemo.

Mooki and Stephen desperately want to move on to 3F8 and its potential for making things right. They have mixed feelings about more chemo and are especially wary of the likely side effects, but like so many times until now they signed the consent forms agreeing to move on in the hope that this cycle will allow them to reach that goal.

Hoping is hard. I hope that my job as a pediatric hematologist/oncologist doesn't get in the way of the more important job of being Toby's uncle and Mooki's brother. I hope that I can think like a humanist and not like a doctor. I hope that Toby won't need hearing aides and I hope for hope.

Yoram

Intimacy and Uncertainty

2007-09-26T05:19:00.000-07:00

I prayed my heart out on Yom Kippur.

Since Toby got sick, I’ve had an ambivalent relationship with God. On good days, I understand that God didn’t send this disease. On bad days I rail against God’s silence. And most days I feel a tremendous loss in my connection to God.

I haven’t been able to pray on my own. And so on Yom Kippur, I went to synagogue, in search of my community, in search of warmth, in search of a space where I could have a talk with God. I chanted the melodies and let my soul be lifted by the beauty of ritual. I felt myself enter the lines of text, winding through the letterforms like the paths of a most beautiful garden.

It was during the amidah that I felt myself open up to the possibility of something. So I covered my face with the prayerbook and let God know how I felt. When I came up for air, Yoni remarked that I had tattooed the book with my tears.

What happened next surprised me.

As is customary, the ark remains open during the entire concluding service of ne’ilah. But at PSJC there’s a wonderful opportunity for families, couples and individuals to ascend the bimah during this time, to share a moment alone/together in front of the open ark and Torah scrolls. For more than an hour, I watched as the ark became a shaftway to God. Again and again, parents wrapped themselves around their children, whispering their wishes and prayers and dreams. Couples embraced, hands reached out to touch the scrolls. It was pure theater and I watched hungrily, with joy and sadness. Personal became public and intimacy crowded out every other feeling in my heart.

I desperately wanted to be one of the families hugging each other in the sweep of narrative, history and hope.

_________

In many ways uncertainty has crowded out intimacy in our lives. We wake up each day, unsure of what will happen by evening. And this morning, for the first time in a long while, I can unequivocally say that Stephen and I feel hopeless.

Yesterday we met with Dr. Kushner, to discuss the much-anticipated next phase of treatment: 3f8 antibodies. After 6 cycles of high-dose, highly toxic chemotherapy and after 14 rounds of radiation to Toby’s shoulder, we are ready to move on. Toby still has refractory disease, but some children do go into antibody therapy without being completely “clean.”

Instead we heard more bad news. Although most of the scans came back stable, one of the bone marrow aspirates showed neuroblastoma cells. This is very, very unusual and Kushner is uncomfortable giving Toby antibodies at this stage. He would like to do a 7th cycle of chemotherapy, in a final, super-aggressive, off-the-charts attempt to kill the cells in the marrow. He admitted that MSK doesn’t do this often. He admitted that Toby is highly unusual. And he admitted that he doesn’t have much data to show whether this will be an effective course of treatment.

We still have a lot of unanswered questions and are unsure what our next steps will be. My brother will most likely post some of the medical details over the next few days.

Intimacy is what makes me feel human, but it is uncertainty that sits on all our shoulders. Yoni worries, asks a million questions, demands the whole truth with no sugar coating. Stephen and I open a bottle of wine at 5 pm, walk to the corner together and stand in the middle of the sidewalk as the tears fall. Toby senses the vibrations of uncertainty and cannot sleep. Last night I lay in bed with him after he told me that he was nervous and scared. I reminded him to think of good things: Randy and the whoopee cushion, the mango smoothies at Lonelyville, harvesting a potato in Prospect Park. But he cried and said, “the bad things are too big, Mommy.” Over and over I tell him that everything will be alright, We curl up together and see the moon through the blinds. It’s a full moon, full with experience and life and quiet. Toby eventually fell asleep.

And today we blink into the wide gaping hole of a new day, heavy in our hearts, craving intimacy for our family.

We ask again for your support, presence and love. You have done so much for us already that I hesitate to ask again. I will never be able to write all the thank-yous for the beautiful, thoughtful gifts, the delicious meals, the blood, the money, the letters and visits. Please forgive me. And know that through you, we can experience life as it should be.

Love, mooki and stephen

“So, what were the atrocities today?”

2007-09-14T20:00:00.000-07:00

Yoni has a knack for asking perfect questions. On Monday night, his pointed question really said it all.

We arrived at the hospital at 9 am and waited in a long, snaking line for a blood draw in the IV room. Mondays are especially chaotic at MSK and every waiting area was overflowing. There were no available beds or seats, but we managed to find Toby’s favorite, tiny footstool and wedged it near a closet outside the finger-stick room. Toby calls this footstool “blue cubie,” and they have become fast friends. Stephen and I watched as Toby and blue cubie discovered the wall-mounted pneumatic tube that transports blood from the 9th floor to the stat lab below. It was elevator and subway ride all rolled into one and Toby was transfixed. We were grateful for the diversion, and though it didn’t quite qualify as school, at least there were numbers and engineering involved.

Many hours and countless visits to the fish tank later, the readings came back: once again Toby needed both blood and platelet transfusions. Last week Toby won the award for lowest platelet count ever recorded on the pediatric floor: his platelets were 3 (yes, that’s 3) over four consecutive days (normal is 180-400). We’ve grown accustomed to seeing the chicken-soup-colored bag attached to Toby’s line, but never with such regularity.

So it’s noon, we’re already exhausted from keeping Toby occupied and are just finding out that we’ll be at clinic for at least another 4 hours for pre-meds, transfusions and monitoring.

Problem #1: Toby’s first radiation session is scheduled for 1:45 in a completely different part of the hospital. Platelets take about 45 minutes to transfuse; blood can take up to 3 hours. Our nurse suggests we start with platelets, unhook Toby from the IV, go to radiation, and then return for the blood transfusion.

Still no available beds, so we drape a sheet over the waiting room loveseat, pre-medicate, start the platelets and settle in with a Mario game (thank you, Uncle Greg and Aunt Sheri!). We keep careful watch for fever, hives or breathing difficulties.

1:30, Unhook, go to Radiation.

Problem #2: Toby is neutropenic, which means he has zero white blood cells to fight off infection. He shouldn’t be exposed to too many people, for fear of picking up a virus or bacteria that would land us in the ER with a guaranteed hospital admission. The waiting room in Radiation is packed.

Problem #3: The Radiation Oncologist informs us that there’s a delay on the machines and we might have to wait for an hour or longer. Sot it’s back to the 9th floor for blood. By 5:30 the bag is empty and we return to Radiation where we wait for another hour.

Problem #4: The reality of radiation begins to sink in when Nicole, our Child-Life liaison appears and casually mentions that we won’t be allowed in the room while the treatment is taking place. I’m still wondering why Toby didn’t receive the permanent tattoos that are customarily inked to indicate the exact position for the beam. Instead, his shoulder has been repeatedly marked with different colors of sharpie marker. Some of the marks have blurred or rubbed off. It suddenly seems haphazard, like the doctor’s words that radiation will be the least problematic part of Toby’s treatment.

The technicians position Toby’s small body on the hard steel slab and rotate his shoulder into place. They measure the distances with a plastic ruler. The doctor calls and tells us that the prescribed dose will be 2000 times stronger than what is used in a chest x-ray. And Toby will receive this dose twice a day for 7 days.

At 6:30 pm, 4-year-old Toby lies alone, half-naked in a room with 2-foot thick steel walls. He is awake, determined to be still, accepting the “energy ray” that beams into his shoulder, while Stephen and I tell him stories through the intercom. We can barely put the words together as the guilt, fear and nausea wash over us. In a few minutes it is over and we shake with relief.

On the way back to Brooklyn, I am so grateful to be headed home, so relieved to have my sweet boy on my lap, so overwrought with emotion, so desperate to appease my sickening sense of guilt, that I ask Toby if there is anything in the world that he wants. He is quiet, thinking. I want to give you the moon, the stars, the rest of your life with no pain. Toby is silent, and then he quickly says, “I think I would like a cherry lollipop on Monday and a strawberry one on Wednesday.”

We arrive home at 8 pm, barely able to drag ourselves up the front steps, barely human. And on the kitchen counter, is the most beautiful meal, prepared by a loving friend. And it is still hot.

_______

It is now Friday, at the beginning of a new year. We have made peace with this treatment. We still chafe at the euphemisms, but Toby actually enjoys going to the 2nd floor to receive his "ray." He started eating this week, some of the delicious food that has graced our table during the holiday. Next week is a busy one: 5 more rounds of radiation and full restaging scans... a CT on Monday, echo on Tuesday, MIBG on Wednesday and bone marrows on Thursday. We are so grateful to all of you for continuing to care. You are an inspiration to us and remind us daily that we are not alone. Shana Tova and HOPE.

Love, mooki and stephen and yoni and toby

Moving to Temple Court

2007-09-11T15:07:00.000-07:00

Temple Court is a special place in Brooklyn. Just a block long, the street terminates in a dead end which makes it feel a bit like a large courtyard. This block is lined with turn-of-the-century or pre-war framed row houses. The houses are neat and narrow, each trimmed in different colors. Since there is no throughway, it is quiet and peaceful. Neighbors amble across the street, visiting one another, gathering to chat and catch-up. “A little like Mayberry, perhaps?” we thought, a little skeptical. Hmmm, the neighbors said, “More like a cross between Mayberry and Tales of the City.” This is good.

Temple Court and surrounds will be a supportive home base for Stephen and Mooki, and the boys. There are young families and older retirees on the block; there are plenty of children who will likely become playmates and friends. Yoni’s closest friends live nearby (his buddy Rain is just around the corner) and already they have taken to the “courtyard” with their games – no worries about cars. Toby has made friends with staff of the pizza joint on Prospect Park SW – the owner (who also sports a bald pate) has invited Toby to help make pizza with him. We hope Toby can make a date to do so soon. Just a little more than a block away, Prospect Park beckons. A two minute walk brings you to Lonelyville, a coffee shop that gives independent coffee purveyors in Seattle a run for their money. Mike, who runs a grocery/deli next door (a picture of Mike with the Mayor is prominently displayed – “he’s my uncle”) creates excellent sandwiches and greets us as if we’ve been in the neighborhood forever. Wahlid and Maria, and their family of sons, run a competing grocery/deli even closer to the house – they are hardworking and kind, and we depended on them for all the basics during those first 10 days of moving in. They, too, know about Toby and are very eager to get to know him.

The Temple Court neighbors have been amazingly welcoming. Even before moving in, many had already read about Toby on the blog and all look forward to meeting him. Without exception, the neighbors offered assistance and encouragement. When we generated far too much trash in the first few days of moving in, the neighbors quickly distributed bags among themselves to ensure the sanitation crew would leave none behind. Alec and Debby next door purchased a “Haveaheart” trap for the feral cats in the yard and delivered it to us; they loaned a bike and insisted I “take a breather” in the park. Karen across the street brought bright geraniums and rich warm autumn mums for the backyard. Sheila directly opposite offered access to her ISP when Stephen needed the assist. Carmella and Riva plan to join the dinner brigade (“It will be SO easy – we don’t need to find parking; we’ll just walk dinner across the street!”). Temple Court is a community, and I fervently believe that Stephen and Mooki will gain strength from this further expansion of the universe of caring souls around them.

It was a profound experience to be with the family during the move. I was deeply affected to meet the friends who help day in, day out. Every evening, another smiling countenance arrived bearing sustenance. Since April, this gift of dinner has arrived daily. Now approaching 200 days, the community has made a tremendous contribution to the well being of the family. I am reminded that everywhere on earth, families are sustained by the “breaking of bread” together. Meals are sacrosanct in all cultures — they bond family members to one another, they make friends of strangers, they provide respite from troubles. This gift nourishes Stephen and Mooki and their family spiritually and emotionally, as well as physically. “They saw God, and they ate and drank.” (Exodus 24:11) In my experience, this support of food and drink allows the family to experience blessings even as they endure deep suffering. I know they are extremely grateful.

So many helped with the move. When I arrived, the house on Temple Court was filled with boxes and boxes and boxes of belongings – most packed and delivered by Oz Moving & Storage. This company helped tremendously – packing the bulk of their belongings carefully, delivering it safely. (How many books can one family own!!!???) The charge for doing so was deeply, deeply discounted. On the days spent at the hospital for Toby’s sixth round of chemo, Mooki’s parents, friends and supporters (some total strangers!) swept into 1st Place to pack up the last clothes, toys, bath items, dry goods, refrigerated/frozen foods and bring them home to Temple Court. I arranged to meet helpers at 1st Place, and even though we’d never met I knew who they were in an instant. I would glance at the driver as they turned onto our street, and could feel the connection – “Oh, that must be Leslie!” “Here’s Tova and all the kids she’s brought to help!” “This has to be Deb!” Others called – “How can we help?” Small gifts of aid made all the difference: Sara and Geoff arrived late one evening and tore down and bundled boxes for recycling. Doing so spared me time to work inside. All of us, the helpers, talked. We laughed, we hugged, we worked. It felt like a tremendously large and loving family – and it is.

All of this support and organization made unpacking and setting up a breeze.

Which brings me to my closing remarks about this family. Stephen is a remarkable man and Mooki is an amazing woman. It is a privilege and honor to know them; it gives me great joy to love them. I am blessed to know each of them better today than I did a month ago. I cannot begin to comprehend their pain, worry, fear, anger, and love. They suffer, they persevere, they do what they must. We all know this. But to observe all of this at close hand was a lesson for me. They put in motion the move with good organization. But it was due to their grace – the acceptance and tolerance of others mucking with the most intimate details of their lives, their home and personal effects – that they achieved a smooth transition into their new home. While burdened by lack of sleep, long daily hospital trips and acute concern about Toby’s condition after his latest surgery and chemo, they managed to direct and contribute to unpacking; to share meals together; to be affectionate; to tell tales and laugh; to be kind and thoughtful; to patiently provide Toby with hours of stories, games and diversions. Stephen often turned to work for hours late at night, focusing his remaining store of energy on service to his clients. Mooki endlessly comforted Toby during the worst of his days. There were major snafus with the move, and in no instance did these foul-ups cause Mooki or Stephen to lose their cool and composure. Perhaps they betrayed a tiny trace of disappointment, but lesser persons would have been sent over the edge by the setbacks. Stephen and Mooki are strong, strong people. They have resilience, they have tolerance. They are forbearing. They parent with huge reservoirs of love and unusually generous spirits. Toby and Yoni are lucky to have them. We are lucky to have them in our lives.

Toby had a difficult time while I was there. I am grateful that he was feeling well the first days of my visit. We had numerous pretend train rides, and I was dumbstruck by his knowledge of and passion for the NYC subway system. Mooki and I had a wonderful trip from 1st Place to Temple Court via subway, accompanying Toby as he expertly rode his tricycle to and from the subway stops. His commentary on trains, elevators, and people ranged from hilarious to sober. He was stoic in the face of surgery and the ordeal of chemo. When told that his doctors would be taking out his lymph nodes (explained more simply than that), Toby listened intently and was quiet for a moment. Then, very serious and clear, he said, “Please ask them to put the medicine in my ‘tubie’ very slowly.” Doing this would make it less painful for him. While terribly ill for days, he remained mostly good-natured. Greatly tired and in pain, he did not complain but became quiet and reserved. For such a little person he seems to understand and accept that what he is going through is necessary. He is a good patient and manages his trials with dignity.

Mooki and Stephen can also take pride in Yoni and how well he is doing under these most trying circumstances. Yoni is a straight-A student. He demonstrates excellence in everything he undertakes. After the move, Yoni quickly organized his room, while completing summer homework and preparing for the start of school. I was so happy to talk with him about a book we both read this summer – "Mountains Beyond Mountains" by Tracy Kidder. While he could have read other books for his summer project, he picked one with a challenging story line about the selfless work of Dr. Paul Farmer among the sick and poor of Haiti. Yoni did a superb job with his homework on this book – outlining critical information on a set of index cards that described the events and people of the book and synopsized the thesis – that one person’s actions can change the world for the better. Because of what his family is going through, Yoni is growing up faster than other kids his age. But that’s okay – he is doing this well and is becoming a mature and admirable person.

Thank you for listening to me. I want to thank everyone in the New York community for your love and support of Mooki and Stephen, and their family. Back here at home in Seattle, I feel such comfort that all of you are there for them. Bless you, bless you. Even more could be said - I will come back to comment again.

After sleeping in his new house the first night, Toby awoke the next morning and was carried downstairs by his mom. As he came down the stairs he said, “Hello house! This is a nice house!” And he is right. It IS a nice house . . . and it’s home.

Greetings at Rosh Hashanah. L'shanah tovah to all!

With much love,

Betsy

P.S. I have probably misspelled some names - my apologies.

Shana Tova from Toby's Sabta

2007-09-11T05:33:00.000-07:00

To All the Volunteers, Friends, Colleagues, Neighbors, and People of Good
Will Who Are Engaged in Helping Toby and his Family:

Thank you very, very much!
I wish you all a Happy and Blessed New Year, a Year of Health, Joy, and
Quality Life,

Yochi
Toby's Sabta

From Toby's Saba

2007-09-10T05:26:00.000-07:00

Toby had a pretty good weekend, and is slowly regaining some energy: he was able to walk a bit and go up and down the stairs. His mood is sunnier too. I however, have been completely unable to muster the energy to write an update and am so happy to share this letter about Toby from my father. I want to let you all know that we are fine and settling into our wonderful new home on Temple Court. I will update soon.

From Saba:

Toby is an extraordinary human being. Throughout his lengthy ordeal, he has, incredibly, preserved his smart, sharp intelligence, his sense of humor, curiosity, good natured complexion, and, short of a better term, his stoicism in the face of suffering. It is he, to my mind, who enables his parents to be such remarkable people.

Subjected to cruel and savage treatment, consisting in being killed slowly and then saved at the last moment, strengthened for the next killing session, cycle after destructive cycle, operated again and again, disfigured physically, he has managed to preserve his amazing character intact and to convince those he comes into contact with of his divine imprint. He seems a living instance of the separation of body and soul.

It is hard to believe, but true nevertheless, that, even in his misery, the barely four year old boy has preserved his gracious generosity (and I know precisely what I am talking about) and the ability to escape, at least occasionally, the world of suffering, which is his share since last April.

I write these lines with great difficulty, but they reflect truthfully my deep conviction that what I describe is entirely accurate, though inadequate to convey convincingly Toby’s unusual personality.

I hope and pray he will eventually be cured of his awful disease and that the cure will not affect too heavily the life of this remarkable boy.

Bad day

2007-09-04T12:53:00.000-07:00

Today is the first day of school in New York City. Instead of joining his friends at Beansprouts, Toby spent the day at Sloan where he endured even more than what he, Mooki, and Stephen have come to accept as "routine" - blood tests, transfusions, poking and prodding, various medications, long waits, and most of all uncertainty. Toby is not himself. His usual inquisitiveness and fascination with his surroundings have taken a back seat to a tired, exhausted, withdrawn, and wiped-out little boy. Toby has stayed in bed for most of the past five days, preferring to conserve what little energy he has. In the eight days since Toby had surgery on his neck he has been to Sloan as many times. This past Thursday he was there twice; after coming home in the evening after having spent the entire day at the hospital getting chemo and intravenous fluids, he made an unplanned visit to the emergency room until 03:00 a.m. because of a fever. Toby was back at Sloan six hours later for more chemo.

There has been no let-up in what has been an unusually chaotic week. In addition to surgery, chemo, ER visits, and foul moods Toby and family moved to their new place on Friday and are trying to adjust to their new home while literally spending all day and some nights at the hospital. Adding insult to injury, Toby's surgical site is causing him quite a bit of discomfort and pain. Mooki describes his skin as though it was "run over" and said that it looks like "road kill." The pathology report on the excised lymph nodes confirmed metastatic neuroblastoma. Fortunately, the bone marrow was clean of disease.

Today was especially hard because in addition to needing blood and platelet transfusions as well as pentamidine (a preventive monthly aerosolized medication to ward off fungal pneumonia), Toby also underwent several hours of a radiation simulation (a procedure to map the exact areas to be irradiated which requires that Toby be fairly still and cooperative). Toby also starts daily subcutaneous G-CSF injections (these hurt) today to boost his white blood cells so that he's not as susceptible to infection. As if that's not enough, an additional antibiotic was started because of the risk that the surgical site will become infected. This might not sound like that big of deal, but cajoling Toby into having to take one more medicine, every six hours for the next ten days is exceedingly difficult. Add to this the news about the lymph nodes and that today is the first day of school and one can appreciate just how hard and upsetting a day it has been for Mooki and Stephen.

Toby is scheduled to start radiation treatments to his shoulder on Monday. He will have two sessions a day for seven days, which will then be followed by restaging scans and bone marrows.

Many of you have reached out to Mooki and Stephen this past week. Mooki asked me to let you know that she and Stephen have read all of your e-mails and messages and that once they are a little more settled in and things are less hectic, she will update the blog herself.

Yoram

2007-08-27T18:48:00.000-07:00

After several weeks of "routine" visits to Sloan every Monday, Wednesday, Friday, during which Toby received blood and platelet transfusions, underwent bone marrow aspirates and biopsies as well as other radiologic tests, today marked the beginning of the next phase of Toby's ordeal. Early this morning Toby had surgery on his neck. His surgeon, Dr. LaQuaglia, removed many diseased lymph nodes, which had failed to respond to five intensive cycles of chemo. Many of the nodes looked "strange," either the result of neuroblastoma and/or the chemo itself. Tonight, Toby is recovering at Sloan where he is a bit grumpy as a result of not being able to freely move his neck and because of the pain associated with the surgery. He is getting morphine every couple of hours. Despite this, Toby's primary team believes that he is ready to start chemo tomorrow and because Toby hasn't "seen" any chemo for about a month or so, the team doesn't want to delay any longer.

The chemo will consist of three agents, one new one that Toby hasn't gotten yet (topotecan) and two that he has received in prior cycles (cyclophosphamide and vincristine). Topotecan has been shown to be (moderately) effective in combination with the other two in neuroblastoma, and the hope is that Toby's remaining areas of disease (neck, shoulder, and possibly his leg) will respond favorably. The chemo will last five days and if all goes well, it will be followed by antibody (3F8) treatment and radiation. Toby can expect the usual assortment of unpleasant and upsetting side effects like mouth sores, nausea, vomiting, constipation and diarrhea, foot drop, and low blood counts. Hopefully, he'll weather this latest onslaught like the others without too much excitement (being a boring patient is always a good thing).

On the home front, Mooki, Stephen, and Yoni are transitioning to their new home at 19 Temple Court and are officially moving in on Saturday, Sept 1st. The movers took care of the majority of the belongings, but there are still quite a few "leftovers" at the current sublet at 66 1st Place which need to find their way to the new place on Friday, the 31st. Betsy, Stephen's sister in-law, is busy unpacking and arranging. If anyone is available to help unpack and/or move (i.e., drive) the remaining boxes, please call Betsy directly at (206) 300-5725.

Finally, because chemo will continue through Saturday, Toby and gang will be at Sloan everyday until then. Rather than having lunches delivered to their home, dropping them off to Mooki and Stephen at Sloan would be great.

So many of you have been an amazing source of support and inspiration. We are truly grateful and awed by your spirit and caring. Thank you.

Yoram

Surgery #2 is tomorrow

2007-08-26T20:59:00.001-07:00

Providing Meals – Frequently Asked Questions

2007-08-21T11:23:00.000-07:00

Thank you for offering to prepare a meal for Toby, Yoni, Stephen and Mooki. All the meals have been delicious and so very appreciated. Below are answers to some frequently asked questions.

Meal Coordinator: Florence Hutner, Park Slope Jewish Center
Email: fhutner (at) earthlink.net

How do I sign up?
You can sign up directly on the blog calendar. Just follow the instructions. If you have trouble with the calendar, email Florence. Once you sign up, please email your name, phone number and address to Florence.

Where does the family live? Do I deliver the meal myself? If so, when?
Until Sept 1, the family is at 66 First Place, garden apt. (near Court) in Carroll Gardens. After Sept 1, they will be at 19 Temple Court (btw Terrace & Seeley) in Windsor Terrace. Both are accessible by subway. The cook or another volunteer delivers the meal. Usually, weekday deliveries are near the dinner hour (5 pm or so). Weekend deliveries can often be earlier. Florence will send you details of delivery once you have signed up.

Can I prepare a meal if I am not able to deliver it?
If possible, cooks deliver the meal themselves (see when/how above). But, if you are unable to deliver, another volunteer can deliver your meal. As soon as you sign up, let Florence know if you need someone to deliver.

Should I make something that is frozen? Should salads be prepped?
For now, because Mooki and Stephen have very limited time and because freezer space is minimal, meals should be fresh, not frozen and ready to eat with minimal prep needed. Be sure to use disposable containers.

What should I prepare? Are there any dietary restrictions?
The whole family (kids and adults) have been very happy with chicken dishes, chili-type meals, stews, meatballs, fruit salads, soups. Because Yoni keeps kosher, please avoid pork and shellfish, and if possible, do not combine dairy and meat in the same dish. Ask Florence for further tips about what to prepare.

How much food should I prepare?
Enough servings for three to four adults is plenty. Some cooks choose to prepare a main dish and salad or side dish, while others like to provide an entire meal including salad, entree, side dish, bread and dessert. It is up to you. Wine is welcome.

Can I include a gift for Toby or a note for Mooki, Stephen and Yoni?
Of course. Notes from the cooks are very welcome.

“Thank you again, from our stomachs and our hearts.” ~Mooki

HopStop and hot spot

2007-08-18T20:20:00.000-07:00

Toby has a new go-to website called HopStop.

It’s an amazing online city transit guide that allows him to enter a start address in one field and a destination address in another. He can narrow his results by clicking on different transportation modes (bus or subway) and walking/transfer preference (less street walking/more transfers is his favorite). Within seconds he receives detailed stop-by-stop directions, together with maps and a 360-degree photo of the street destination.

Toby works the site like a pro, adeptly choosing addresses and categories. We take vicarious trips to the Metropolitan Museum of Art and Yankee Stadium, the Central Park Zoo and imaginary destinations. Toby thrills to the familiar iconic representations of the different train and bus lines (orange dot for F, yellow for N, red for 1, 2 and 3), getting more excited as he realizes that he can change the trains by simply clicking on “re-route.” An observer might think that Toby is reading the difficult prompts and links, but he has actually memorized the page design and is able to identify the different words by their first few letters. He has even started to add his own transit ratings to the different train lines. Make sure to check out comments by “Mr. T” on the F and G lines if you have some time to spare.

On Friday, after a week of exhausting full-body scans, anesthesia, fasting and injections, Toby told Dr. Kushner about HopStop. And Dr. Kushner told us about the one remaining hot spot on Toby’s body. We received some very, very encouraging news: Toby’s bone scan was normal, as was his CT, with no indications of bone lesions or metastasis. We are still waiting on the results of the marrows. The MiBG, which is obtained after injecting Toby with a radioactive substance over 24 hours, showed only one hot spot, in his left shoulder. All the other involvement in the spine and collarbone and hips and jaw and legs and arms seems to have resolved. We are so happy to be sharing this news with you! This does not mean that the neuroblastoma is gone; far from it. The cancer is still in Toby’s body and we still have a very long way to go with treatment, but it turns out that the 4th and 5th cycles of chemo were more effective on bone than we imagined.

There are some problematic lymph nodes in Toby’s neck, so surgery has been scheduled for Monday, August 27th. We met again with Dr. LaQuaglia to discuss what will happen. He told us that this surgery will be shorter and less invasive than the previous one… there are nerves in the neck area that can affect the diaphragm and hand function, but Dr. L has not experienced problems before, and has done many such modified resections. Toby will most likely have soreness and discomfort/swelling, but this surgery needs to happen before he will be allowed to move to the next phase of treatment.

Surgery will be followed by a 6th (hopefully final) round of chemo. And then, God willing, we will be able to move on to 3F8 antibodies and radiation, possibly around the beginning of October. Radiation will occur to the primary tumor site in the abdomen, as well as the left shoulder and possibly the neck.

There has been a lot of bad news lately and we didn’t realize how dark that cloud felt until we received the good news on Friday afternoon. Toby’s original MiBG scan in April showed neuroblastoma from head to toe. There were countless hot spots. Now there is only one. And instead, Toby is playing with HopStop. For the first time in months, Stephen and I actually felt giddy, light, playful. My father let out a whoop of exultation when we passed on the news. I hope you all feel it too. Your prayers and thoughts are working.

Love, mooki and stephen

Respite

2007-08-13T12:43:00.000-07:00

Toby had a really good week. Our bout with neutropenia was mercifully short this round, and his counts bounced back after just a few days. He did receive 3 platelets transfusions (thank you, donors!), but as of Friday, his platelets were in the triple digits, at 107 (normal range is 160-400). His hemoglobin held at 8.7 (normal is 13-17) and his white cell and absolute neutrophil counts were within normal range, holding steady even with no G-shot.

But enough with the medical, the bigger news is that Toby had a few days to be a normal kid, and I can’t tell you how much we relished each minute. We discovered the elevators at Rockefeller Center, and rode 70 floors up to a perfect panorama of the city. Of course Toby was more interested in the view inside the elevators. Another morning was spent at the botanical garden, where we found a magical bronze birdbath, with running water and inscriptions perfect for pencil rubbings. The water lilies were practically vibrating with color and sunlight, and we managed to coax Toby onto the gravel paths of the Japanese garden (he hates sand or pebbles inside his sandals) where the Shinto shrine became the backdrop for a story about a hermit wizard who mixes potions by the light of the moon. Toby has been jonesing for a return visit to the wizard ever since. His ailment? “I yawn like 25 times before I go to sleep, mommy. Maybe the wizard can make me a potion to stop yawning.”

Amazing Aileen came over on Thursday and spent two hours with Toby at the playground, while Stephen and I took measurements at our new place in Windsor Terrace. It was the first time in 4 months that Toby was able to separate from us and spend a chunk of time with another adult.

Perhaps best of all, was Toby’s early birthday party on Saturday. We decorated the house, had over a few friends from Beansprouts and thrilled to see Toby interacting, laughing, enjoying himself.

I’m posting a few photos so you can see for yourselves.

This is a very big week for us. Starting tomorrow, Toby’s entire body will be scanned using every available technology, to give his doctors a better sense of how chemotherapy has impacted the disease. Each day will entail anesthesia, drinking of contrast, injections and other fun stuff. On Tuesday we start with a bone scan. Wednesday is a CT, Thursday will be an MIBG injection, echocardiogram and audiogram. Friday is the MIBG scan and more bone marrows.

Once the scans have been interpreted we’ll have a better sense of what comes next: either surgery followed by more chemo or the unimaginable and wished-for next phase of treatment, 3f8 antibodies. We’ll see.

It has been so long since I thanked all of you. If you haven’t yet, I urge you to read the comments below each post. They are truly remarkable and I can’t stress enough how much strength we gain from reading your extraordinary words. In addition to the writers, there are whole bunches of people who provide us with a steady stream of delicious meals, wonderful care packages for Toby (some left at our door during the night, so that he has a little surprise in the morning!), donations of blood and platelets, financial help, visits to interact with Toby and us, emails, and a constant stream of love. You are incredible friends and we are blessed to have you in our lives.

Love, mooki and Stephen

A Letter from Aunt Anna

2007-08-12T20:55:00.000-07:00

Like so many others, I read Toby’s blog every day. The four of you are never, ever far from my mind. I think of you when I wake up in the morning and all throughout the day. You're in my prayers at night, and I've even dreamt about you. One would think that for all those thoughts, I would have words to put on paper, but each time I've sat down to write you, my heart has seized up, and I've been left with nothing but tears.

I don't know what to say or how to say it. Even after my visit to New York in July – no, especially after my visit in July – I am at a loss for words. Toby is beautiful. He is so unlike any other three- or four-year-old I have known. He is like a little Buddha come to earth to extend some unknown wisdom to us all.

There were so many moments during my visit when I was struck by just how beautifully different he is, but there is one moment that stands most clearly in my mind. I was alone in the outpatient room with him. It was Tuesday, I think, so he was still very much in pain from the surgery just a few days before. One of the nurse practitioners came in and, needing him off the bed, she helped him down. She moved a little quicker than was necessary, and I could see how much she hurt him. He winced and knitted his brow – but then I saw him look up at her, and he simply breathed out and let it pass. I couldn't believe what I had witnessed, but I could see exactly what he had done. He had, in that brief glance up at her, recognized that she hadn't meant to hurt him, and so, the pain having passed, he let it go. He just let it go. Every three-year-old I have ever known would have punished that nurse– maybe with an accusation, a scowl, a turned head, a tantrum – but not Toby. Striking back is not in his nature, forgiveness is.

I could write about a dozen other moments similar to that one. I witnessed that gentle, peaceful, empathetic nature many, many times during my short visit. But there is something else that needs saying. Not only did I witness a beautiful child with a beautiful soul, I also witnessed the parenting that has nurtured that little soul. Toby is a special child, but he is also the product of two people who have clearly surrounded him with lightness and love. You have – obviously by example – taught him to find the beauty and wonder in the world and in others around him. You are the reasons behind “it’s so beautiful here”. You are reasons he delights in the fact that the numbers on top of the taxi match the numbers on the back. You are the reasons he forgave the nurse. Yes, he came into this world equipped with a beautiful soul, but you two have kept it that way.

I’m not a numbers girl, either, Mooki. Dad tried hard to help me grasp the concepts, but it was no use. Those rules that made perfect sense to him were just words on a page to me, and it always seemed that just when I thought I had the right rule memorized, I had missed some other consideration that changed the whole equation. Who knows but maybe that coin toss that’s suppose to be 50-50 isn’t such a perfect equation after all. Maybe there’s a smudge of ice cream on one side that’s going to make the odds 60-40 instead. Maybe Toby has a little something, too, that will turn the coin in his favor. Maybe that’s the difference between the children – something we can’t see or grasp. Everyone who has had a chance to interact with Toby agrees that there is something wonderfully different about him. Who knows what part that difference is playing now?

I will continue to keep all of you in my thoughts and prayers.

Love,
Anna

The Numbers Game

2007-08-07T13:04:00.000-07:00

I bought Toby 5 scratch-n-match bingo lottery tickets a few weeks ago. The guy behind me in line thought I was a spender and made some jokes about regulation and my assumed addiction. I tried to explain that this purchase was an innocent act, meant to payout 10 minutes of entertainment for my hospital-bound son. It was all about the scratching and the simple activity of uncovering numbers, revealing something hidden beneath the surface. A monetary prize was completely beside the point. It was about doing, not winning.

The day we played with the lottery tickets we also rode the elevator to every floor in the hospital, keeping track of the numbers as we rose and fell. Toby likes the 6th floor, where the doors open onto a honey colored wooden wall decorated with circular artwork. The 2nd, 5th and 14th floors are also current favorites, but any number will do. Best of all is when the elevator is jam-packed with people who say, “could you push 10, please?” or “I need to get to 5.”

We count everything: floors in the hospital, steps to the IV room, milliliters in the syringes, systolic and diastolic readings on the blood pressure machine, rates of infusion on the chemo pumps. Numbers order Toby’s world, make the unfamiliar less frightening, give him a small measure of control.

I’ve never been a huge fan of numbers. This, coming from the daughter of an iconoclastic and brilliant historian of mathematics. I’m sure that others, much smarter than I, have found the connections between the beauty of narrative and the purity of mathematics. Maybe in the final accounting, there’s really no difference between the two disciplines. But I’ve always gotten lost in the world of math… too much reason and evidence and logic. Not enough passion or messiness or laughter.

One notable exception is The Dot and the Line, an illustrated love story between a sensible straight line and a voluptuous, perfect-from-every-angle dot. My father bought this wonderful little book for my mother, back in the late 60s. Its subtitle is, “A romance in lower mathematics,” and it is here that math starts to make beautiful sense to me.

Yoni is a math wiz who rarely uses formulas to help him with his work. Instead, he figures out problems in his own uniquely mind-bending way, and actually takes pleasure in difficulty. And Toby, chanter of numerals and lover of zero, proudly declares to my father upon emerging from the bathroom, “Saba, my poop looks like an octagon.” At the ripe old age of 2½. So I guess the love of numbers skipped a generation. Or something.

Until last week, with the most optimistic general numbers, Toby had a 50 percent chance of surviving this disease for 5 years. Imagine two children, standing next to each other. And then imagine that one of them lives and one dies. Those were Toby’s odds.

After last week’s devastating news, our numbers have shifted. With positive bone marrows after 4 cycles of chemo, chances of survival drop to about 20-30%.

Here are some other numbers, borrowed from an NB parent, that keep me awake at night:

Every 16 hours a child with neuroblastoma dies.

Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

Like I said, I’m not a numbers girl, but I can’t find the words to fill in the void that surrounds us at any given moment.

This is a numbers game I desperately want to win. I’ll do what needs to be done: watch as my child sets his jaw in pain, fight the beast that’s feeding off his body, offer him up to yet another surgery if necessary, be strong for him, play with him as if nothing’s happening, live our lives as best we can, act as if cancer is just an inconvenience, focus on the positive when I’m able, find hope when possible, say a million thank yous to the incredible people who are battling with us and giving us food, love, donations, care packages and blood. Unlike bingo, this game isn’t about the experience of doing, it’s about beating the odds.

We continue to draw so much strength from you. Thank you for being with us.

Love, mooki and stephen

Toby still needs blood and platelets.

2007-08-06T06:26:00.000-07:00

As so many of us are leaving town for vacations, I hope that anyone who is here, especially if your work schedule has slowed down for the summer, will consider heading over to the hospital to give blood. I just did it again today - platelets took just over 2 hours - not such a huge investment of time. Whole blood is even faster.

According to Mary in the Blood Donor office at MSK, Toby has had more than 100 people come to donate for him, many people more than once. This is an amazing blood drive for the hospital, incredible evidence of the strength and support of Toby's community, and obviously a vital and direct way that we can all help save Toby's life. The number to call to donate is 212-639-3335.

Thanks to everyone who has donated, and in advance to those who are about to.

Jessica

Toby, August 1st

2007-08-01T20:33:00.000-07:00

I arrived to Mooki, Stephen, Yoni, & Toby's in Brooklyn yesterday just as Toby had fallen asleep for his afternoon nap. Toby had a good day yesterday. In the morning he rode the subway to the firestation where he checked out the fire engine & inspected the gear each fireman wears as soon as Toby woke up he promptly informed that each suit weighs 70 pounds). Toby then had Italian ice at Smiling Pizza & for lunch he had rice & beans at Uncle Mo's. In the evening we went to Carroll Park. On the way home we stopped off at World of Pizza where Toby watched his dinner, a half cheese, half "salad" pizza (mozarella, tomatoes, basil) being prepared. With pizza & Toby's backpack of i.v. fluids in-tow we made our way back home where Toby had a playdate with Katie, one of his friends from Beansprouts.

Toby & Katie were great together. Toby hung out on the couch while Katie swarmed around him & adeptly avoided getting entangled in his i.v. tubing. While Mooki, Stephen, & Laura (Katie's mom) had dinner, I played with Toby & Katie. For my "efforts" I was well-rewarded; for nothing more than being a playmate, Toby rested his head on my lap several times & I got at least 5 hugs!

Today Toby was back at Sloan for blood & platelet transfusions. He's now 9 days out from cycle 5 of chemo. Yesterday's energetic & playful Toby was a only a fleeting memory, replaced by the grim reality that's become all too commonplace.
After waiting many hours, Toby took a nap while the blood trickled into his tubies & Mooki, Stephen, & I met with Toby's team to discuss the next step.

Once Toby recovers from this most recent cycle, he'll have a complete restaging workup. In about 2 weeks he'll have bone marrow aspirates & biopsies, CT & MIBG scans, & blood & urine tests to evaluate the neuroblastoma's response to chemo.
If there is no evidence of disease, then 3F8 antibody treatment is next. However, because the marrows done just before this cycle were still positive & the lymph nodes in Toby's neck were relatively unchanged after the first 3 cycles, the likelihood is that Toby will still have some disease present even now, which would categorize him as having refractory disease. If this is the case then Toby will have another surgery towards the end of the month, this time to remove the diseased lymph nodes in his neck, which will then be followed by a 6th cycle of chemo with topotecan & cyclophosphamide & vincristine.

Starting 3F8 is best when there is no or as little disease as possible, but according to today's talk with Dr. Kushner, even if Toby's not in a complete remission he plans to start with 3F8 after the 6th round of chemo.

That's all for now. Toby turns 4 on August 22nd. I hope that this year will be a better one. One with less pain, more time spent at home & with friends, & clean, disease-free scans & marrows. Happy early birthday Toby.

Yoram

(More) Bad News

2007-07-30T10:57:00.000-07:00

Toby has now completed five cycles of chemotherapy. These first five cycles are known as the induction phase with the goal being to "induce a remission," that is, to clear the body of any detectable neuroblastoma. Before starting treatment, the neuroblastoma was in Toby's adrenal gland, as well as in his abdomen, bone marrow, and in many of the bones throughout his body including several of the cervical vertebrae. After the third cycle of chemo, Toby had re-evaluation scans and bone marrows to determine how well the treatment was doing its job. At that time, the primary tumor in the adrenal gland and the abdominal tumors had shrunk significantly, but there was still some residual disease in the bone marrow and the lesions in the cervical vertebrae were relatively unchanged. The hope was that the remaining two induction cycles would successfully take care of the marrow and cervical involvement. Last week, before starting his fifth cycle of chemo, Toby had (yet) another bone marrow aspiration and biopsy done to see if the neuroblastoma that had metastasized there was now gone (the vertebrae will be looked at later to see how they've responded). Mooki and Stephen just met with Toby's doctor and unfortunately, there is still evidence of neuroblastoma in Toby's marrow.

What this means is that instead of being in a complete remission, Toby's disease is classified as being in partial remission. This has many implications, most immediate is that rather than proceeding with the next phase of radiation and antibody treatment, Toby now has to undergo an "extended induction" with another round of chemo. This sixth cycle will combine cyclophosphamide, which Toby got in previous cycles, with a new drug called topotecan. The idea is that because the neuroblastoma isn't responding as readily as hoped to first-line chemo, additional novel chemo is introduced in an effort to induce a remission.

Obviously, this is bad news. While many kids with advanced neuroblastoma need extra cycles of induction-chemo to clear the neuroblastoma, this is not what we were hoping for.

Toby is still recovering from this most recent round of chemo with all the usual potential bumps in the round (risk of infection, frequent transfusions, etc), but this is an especially big and devastating bump. In the next couple of weeks Toby will have the sixth cycle after which his doctors will take another look at his marrow and he will have a complete set of restaging scans.

Mooki and Stephen are distraught, depressed, and frustrated. It seems as if each small treatment-related gain is followed by an equally, if not harsher setback, forcing them to come to grips with a new reality. Throughout these horribly difficult days, weeks, and months Mooki and Stephen have continually reinvented themselves and have found new ways to remain strong for Toby. This is no easy task. Now more than ever, Mooki and Stephen need your continued love, support, and encouragement. Please write, post a response to the blog or send Toby a picture or card. I will be in NYC tomorrow for a few days and will send another update once there.

Yoram

A better day

2007-07-26T03:49:00.000-07:00

Thank you so much for your comments after my last post. Your words grounded and comforted me, and reminded me why we're doing this. Yesterday was also a better day for Toby: he ate a little toast, had some visitors and participated in the pediatric talent show, where he performed a magic trick to rousing applause. We leave in a few minutes for the third day of chemo.
love, mooki and stephen

Crying

2007-07-24T20:25:00.000-07:00

It is 5 pm and as i watch toby sleep, i cannot stop the tears. i've never written during chemo, because it's so hard to sort everything out. there's a huge amount of purely physical challenges and an equal amount of information to digest. there's the awful sights and sounds of the pediatric ward. and then there are the continuous waves of emotion, which are pushing me down today, no matter how hard i struggle to rise above the surface to take a breath.

this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.

There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”

Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.

Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.

And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.

Chemo 5 starts today and I am in a pit of despair

2007-07-24T03:53:00.000-07:00

Fifty

2007-07-22T18:52:00.000-07:00

Many years ago, before Toby was born, Stephen and I took Yoni to his first sleepaway camp and then spent the rest of the weekend nearby, at a small bed and breakfast. In the morning we took a 10-mile bicycle ride through the woods and found ourselves, unexpectedly, at a beautiful hidden pond. Ringed by tall trees, the pond was completely deserted and still. Tiny white flowers floated on the dark surface and small dragonflies dipped and shimmered over the water. We couldn’t quite believe our eyes when we sighted the rough-hewn dock and diving board. The board, completely out of context, slyly winked.

It had been a long, hot ride and we desperately wanted to swim. The pond beckoned silently. Stephen went first, stepping purposefully onto the board, then slicing through the water neatly and with minimum effort. I didn’t see the board move. And now it was my turn. I walked to the edge, looked down into the unyielding darkness, and realized that I wouldn’t be able to do it. No matter how many times I readied myself by saying “one, two, three, jump!” my knees buckled at the last minute and the board flabbily shook in embarrassment. I was scared of so many things: the color of the water, not knowing what exactly was at the bottom or how deep it would be, the squishiness of the mud, the possibility of pondgrass, water bugs, seasnakes or worse. I longed to feel the cool water envelop me and I knew it would be a formative moment, but I just couldn’t take the plunge. And so I sat on the diving board and cried bitterly over it all: my inadequacy, my inability to quiet a churning heart, my absolute knowledge that I had ruined a perfect day.

Stephen stayed in the water for an hour, waiting for me to fight my demons. He didn’t cajole or tease or lose patience. He didn’t engage in any convincing games, nor did he sigh and exit the water. Stephen never gave up on me. He let me come to my own place of fear, and he waited while I worked through it. I am sure that he encouraged me, but what I remember most was his presence: bobbing in the water, smiling, waiting for me to be ready. He did not leave.

And then I did it. I jumped right into his arms and laughed with relief. And then we jumped over and over again, relishing the coolness, the sweet smell of the water, and the perfection of the afternoon.

Stephen turns 50 tomorrow.

Before Toby got sick, I had planned to mark this day with a no-holds-barred celebration. It hasn’t quite worked out that way and I hope Stephen will forgive me for this very public display of affection. In the absence of an actual party, I’ve decided that everyone should know how I feel about my extraordinary husband.

He is the gentlest of men. He can calm the chaos in my heart with a simple, warm embrace. He has patience in spades. He maintains hope like nobody’s business. He has unparalleled musical sensitivity. He has fantastic taste. He's a brilliant artist. And we all agree, that when Stephen is around, everything is more relaxed, more open to possibilities and just more fun.

Stephen is able to make a conversation with Toby into the stuff of legend. And he is the most incredible father: patient, loving, playful, wildly imaginative. But these words mean nothing, without actually seeing what goes on between Stephen and Toby. My own father gets tears in his eyes as he watches them play. I have eavesdropped on Stephen-Toby conversations and felt like I was in the presence of God. There is something ineffable, perfect and beautiful that occurs when the two of them forecast the weather in Antarctica or talk about chipmunk, wally worm and the gastro-intestinal effects of baked beans and cabbage rolls. Through his love for Toby, Stephen has taught me again and again how to be a better parent.

During a recent inpatient stay, Stephen spent the night with Toby and shared the room with a Hasidic father whose 2-year-old son has sarcoma and was admitted for dehydration. The father was highly observant, dressed fully in black, with black hat and sidecurls, the whole gesheft. The following morning, when I arrived, the man stopped me in the hall outside the room. Usually Hasidic men do not talk to women outside of their immediate family, so I was taken aback and apprehensive. He looked at me, directly in the eyes and said, “I have to tell you that I have never seen such a good father as your husband. The way he talked to your boy through the night, the patience he showed, was remarkable. You need to know this. He is something special.”

A wise friend once remarked that Stephen is my tzaddik. At first I translated that to mean “my righteous man,” but I’ve since learned that tzaddik refers to someone who does what is right and just in his relationships. I cannot think of a better description of Stephen.

So, remember how Stephen helped me at the pond? It’s the same way he’s helping me now. We jump, together with Toby and Yoni, into the depths of the unknown every day. We don’t know what’s at the bottom… it may be unpleasant or much worse… it could kill us. Or possibly, it just might choose to swim by and leave us blessedly alone. There are moments when we notice the beauty that floats in our midst and there are many more moments that are cold, dark and frightening. But I never feel like I’m alone in this pond. Stephen is always near me, always ready to hold out a hand to me, always there. Happy birthday, my husband.

I love you,
m

“It’s so beautiful here”*

2007-07-19T19:55:00.000-07:00

*Said gloriously by Toby, as we hurtled down the service road under the highway, passing rusty playgrounds and sand piles, barricades and the backs of buildings. 6 pm, Thursday, on our way home.

And as the car got closer, sharing Court street with bicyclists and strollers, he said, “I’d like to spend a little time outside, mommy, and maybe after dinner we can go to that store for an orange-cream ice.” And then we arrived and he skipped across the threshold, delighting in each doorknob and light switch. And Randy’s cd was loaded and toby danced. And laughed.

And there were two strawberries and a pickle and three forkfuls of diced macaroni and cheese. And a bath and two stories. And chatter. And we saw that life is good.

*****

This is how toby falls asleep:
He turns on his side, extends his arm under his head, to reduce the weight on his neck, he sighs and then he whispers, “ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen.”

This is how toby meditates when he feels pain:
“Toby, if you could have your very own elevator, what would it look like?”
“It would have bright green doors on the outside and when it opened, the inside would be pink and furry. And there would be music. And stars on the top. And it would go to all the floors.”

This is one thing that Toby did two weeks ago:
We met with a nurse-practioner on the last day of chemo cycle 4, after Toby’s sodium levels were found to be dangerously low. I asked Angela why Toby’s fluids couldn’t be upped to the 9% sodium bags instead of the standard 5% sodium solution. Angela explained that high levels of sodium were also dangerous. She said, “When levels are too high, he might hold onto too much liquid. We need him to be able to release extra fluid, not hold onto it.” Toby was quietly inspecting the photos on the back wall. As we left the room and started down the long hall towards the elevator bank, Stephen and I noticed that toby was walking very slowly, without holding onto his IV pole or our hands. He seemed a little shaky and so I bent down in front of him and asked him if he didn’t want to use his pole buddy as a support. His lower lip quivered as he said, “No mommy, I don’t want to hold onto anything because then my sodium levels will be too high.” And then we saw the tears rolling quietly down his little face.

*******

My sweet Toby, who chants numbers in his sleep and charms the medical teams on their rounds, who laughs at fart sounds and can remember the lyrics to every song he’s ever heard… Toby, who can speak in a southern drawl, just for effect… Toby, child of mine, your daddy and I talk about you when you’re asleep and we repeat the amazing things you say and we laugh and shake our heads at the wonder of you. Welcome home sweetheart.

Love, mommy

Back on the Inside

2007-07-16T17:28:00.000-07:00

we're back in the hospital as of 3 am this morning because of a fever. toby is feeling pretty miserable, as are we. this will be his second course of high-impact antibiotics in a week. his weight is down again, so we may start TPN (nutrition via IV) tomorrow. his white blood cell counts are still at zero, so no discharge in the near future. i thought i would post some photos, in an attempt to lift our spirits.

thank you to all who continue to give us strength, comments, food, gifts and love.

Altered States

2007-07-12T20:31:00.000-07:00

Toby is beginning to read and one of his favorite activities is reciting the titles of books backwards. So “Clocks and More Clocks” becomes “Clocks More and Clocks.” 207th street becomes 70th-and-2nd street. Most kids go through this developmental stage of reversing language. The difference with Toby is that he engages in purposeful inversion. It amuses him to no end.

And I wonder whether he’s onto something. Backwards, backwards, our life seems so backwards. If only I could find some meaning in it.

These are the questions I asked Toby’s pediatrician in past years:
So, how’s he doing?
How tall? How many pounds?
What percentile is that?
When do we make an appt with the dentist?
Should we eliminate the bottle?

And these are the questions I asked Toby’s doctor last week:

Q: What is the tumor pathology?
A: neuroblastoma, adrenal gland; neuroblastoma in 32 of 34 excised lymph nodes.

Q: Do you have the results of the bone marrow aspirates yet?
A: 3 sites were negative, 1 was positive

Q: We noticed “foot drop” after the first few hours of chemo; is it permanent or reversible?
A: It “should” become less visible, although there might be nerve damage.

Q: What are the hva and vma levels now that the tumor has been removed? (hva/vma are metabolites secreted in urine and strong diagnostic markers for neuroblastoma)
A: Normal levels of VMA for Toby’s age are less than 10. Toby’s pre-surgery level was 223. HVA levels are normal when they’re lower than 22. Toby’s HVA was 269 prior to surgery. (this was the first time we actually heard these shocking numbers). Today his VMA is 9 and his HVA is 16.

Q: On the CT scan we notice that 3 rounds of chemo have had no effect on one of the lesions in Toby’s neck… it’s still almost 2 cm long.
A: We will see how it responds to 2 more cycles of chemo. If it’s still there, it might require another surgery and/or radiation to the neck area.

Q: How many of the 18-year-old graduates at last week’s MSKCC “commencement” were neuroblastoma survivors?
A: None.

And these are the questions I didn’t ask:

Q: How many pounds does Toby have to lose before you declare an emergency? Does he look transparent to you?
Q: How many disfigurements and losses do we have to accept as necessary and justified on this hellish road to “cure”? Does loss of hearing just not matter? What about sterility? Or growth loss due to radiation?
Q: Why do you have to poison these kids to within an inch of their lives before you can save them?
Q: Why do so many kids with neuroblastoma relapse?
Q: How can you do this to my child?
Q: Is Toby going to live or die?

Most days I feel like we are forced to ignore every normal impulse we have as parents and humans to fiercely protect Toby from danger, to shield him from pain, to keep him comfortable and safe and happy. Most days Toby and all children with cancer experience suffering and pain and discomfort and fear that no child should ever feel. I wish that this backwards existence would end for us and for them.

cancer is a rollercoaster

2007-07-11T19:08:00.000-07:00

a quick post to let you know that, unbelievably, we are at home in brooklyn, after being discharged at 6 pm today. right now the home health care nurse is in our kitchen, after hooking toby up to IV antibiotics that will run for an hour, until 11 pm. tomorrow morning it will be my turn to play nurse. and friday, we'll be back at the hospital outpatient clinic for transfusions.

in short, the attending doc questioned whether the hospital was a safe environment for toby, given that he's already fighting off a pretty rare bacteria called aerococcus viridans. quite a few of the children on the 9th floor have various respiratory infections, and though toby's counts have hit zero, this doc felt he would be better off at home. of course there are risks this way too, but we are praying for no fevers or further infections.

toby is neutropenic, so full-scale germ alert is on again. we will not be able to have any guests until toby's counts come back up, hopefully within a week or so. thanks to all who contacted us following yoram's awesome post of a couple of days ago. we want you to visit, but will need to postpone until it's safe.

tomorrow yoni turns 15 (!). we are grateful to be able to celebrate with our little family together.

love, mooki + stephen

July 9th update

2007-07-09T18:57:00.000-07:00

With the exception of a very brief, single day off late last week, Toby has been hospitalized now going on two weeks. During this time he has had surgery, followed almost immediately by a fourth cycle of chemo. For the past several days Toby has been back at Sloan because of a bloodstream infection caused by a bacteria. In addition to fighting neuroblastoma cells, the chemo that Toby gets cause his normal cells that fight infection to plummet to low levels, this in turn predisposes him to potentially life-threatening infections. Because bacterial bloodstream infections can be so dangerous, they are treated with i.v. antibiotics (usually 10-14 days), intially as an inpatient and then once under control, continued as an outpatien at home. Unfortunately, because Toby just completed chemo last week, his blood counts, especially the cells that fight off infection, are dropping and soon will be nonexistent. What this means is that it's unsafe to send him home (even on i.v. antibiotics) and that he'll have to remain hospitalized until his "counts bottom out" (hit zero) and then recover. Typically this takes about two weeks from the start of chemo to happen (in other words, Toby, Mooki, and Stephen are potentially looking at a month-long hospital stay.

Understandably, the three of them are frustrated, angry, and at their wits end. Mooki, much more eloquent and direct than I put it as, "we're imprisoned." Boredom only makes matters worse. How many times can Toby be expected to be uplifted by the prospect of another "tour of the unit."

Randy came by for music yesterday giving Toby a chance to experience something fun and different which he loves.

The upcoming days (weeks) will undoubetdly be difficult and trying for Toby and family. This will be aggravated even more by the fact that like most kids, as Toby's counts continue to drop, he'll have less energy, feel crappy, and likely will tend to withdraw. That being said, it would be great if any of you "Toby entertainers" are able to make a visit to Sloan to cheer him up. Please e-mail Mooki if you can make it to schedule a time.

A personal request, Toby isn't the only one who could benefit from some time with friends. For the past two and a half months, Mooki and Stephen's existence has largely been relegated to extremely long and stressful hospital stays. They take turns "sleeping" at the hospital on a fold-out chair and when they do get home every other night, they often collapse due to exhaustion and anxiety. Many of you have already visited, brought food, donated blood, shopped, organized, chauferred, etc... We are truly grateful. The road is long (if Toby's treatment goes as expected, it should last just shy of 600 days); during this current crisis, please try to stop by the hospital (e-mail Mooki for an appropriate time) so that at the very least, Stephen and Mooki can live vicariously through you.

Thank you,

Yoram

and it's not over

2007-07-07T04:44:00.000-07:00

i just got a call (7 am saturday) that toby's cultures are positive for bacteria. we are being admitted this morning. i'll keep you updated.

Neuroblastoma Sucks

2007-07-06T20:01:00.000-07:00

I have to be honest: the last week has been the most difficult since diagnosis and has left us feeling battered, despairing and terribly sad. Until now I’ve steered clear of military language when describing the disease and treatment. I am uncomfortable with the language of violence. I do not feel like glorifying our situation by using words that falsely ennoble, rather than words that simply lay things clear. I guess I’m a linguistic pacifist. But this week makes me feel like bursting forth with every military metaphor I can dream up. It has been war this week. And our little Toby is on the front lines.

Every night I’ve wanted to write an update, naming and witnessing the day, the medicines, the pain, the loss, the grief. And every night, after an 18-hour day, I’ve realized that there are no words on earth to describe what Toby is enduring and how deeply sad it makes us feel.

We have finished cycle 4 of chemo, one more notch on our collective belt, as we march inexorably toward the next grueling phase of neuroblastoma treatment. In a way this cycle was oddly familiar… I guess we’re already old hands at cancer. But this time we hit a lot of bumps that made us realize yet again how very little control we have over this disease. This was the first cycle that Toby spent in bed. The recent surgery to remove the tumor has taken a hard toll on his body and spirits. Usually Toby spends his time in the hospital in high gear, pushing his favorite piece of furniture, “blue cubie” down the halls, while pretending to be a policeman. Or he creates elaborate scenarios in the playroom with ninja turtles, dumptrucks and alphabet blocks. Or he chats up the nurses and tries out the equipment. Or he acts as ersatz elevator operator, asking visitors what floor they need. Or he does his “homework” on the computer and listens to books on tape. This week was different: he showed little interest in anything but the television and spent every day unhappy and wiped out.

This was our week:

Sunday at midnight, when Toby was still inpatient, we were told that he would start his fourth cycle of chemo the following morning. His IV fluids were increased to 60 mls an hour, readying him for the toxic effects of cyclophosphamide. By 10 am the chemo orders had still not been written. The surgical and neuroblastoma teams came on rounds and the nurses continued to monitor Toby’s fluctuating weight and stomach circumference, in effect waiting for the old fluid to drain while pumping him up with new fluid in preparation for chemo. We took longer walks around the unit and tried to gage Toby's pain level. By noon we were told that we could go home and begin chemo as outpatients on Tuesday. Good news, since starting chemo late in the day guarantees a late start for all ensuing days. We packed all our stuff: the rumpled clothes, diversionary toys, and untouched Toby snacks that had followed us from the surgical floor on Wednesday morning, to the ambulance, the Cornell ICU, the ambulance again, the POU at MSKCC, and finally to the inpatient unit. Five minutes later, word came that one of the docs had changed her mind about letting us go home. So we unpacked and waited for the chemo to arrive. It never did, and at 6 pm I was lobbying hard for one night of semi-normalcy and a discharge. Many, many conversations later we found ourselves in a car headed back to Brooklyn. Never mind that we had to be back at the hospital at 7 am, it felt like the most delicious of escapes to have one night at home.

Tuesday, and things had barely changed. By noon the chemo meds had still not shown up. Cytoxan is a 6 hour drip, so we knew we were in for a long day. Worse though, was the obvious pain Toby was feeling. Our regular nurses were both working in other parts of the unit and I spent the better part of the morning begging for pain relief for my child. I repeated the history, spoke to at least 5 different doctors and nurses and nurse practioners, explained the circumstances, all the while watching Toby quietly clamp his jaws and bear down. He couldn’t look at anything, but kept darting his eyes from me to the floor, to the walls and back again. No smiles, no conversation. He never complained, never cried, and so the new staff just couldn’t believe that he was really experiencing pain. I was the one who cried and finally convinced them that Toby doesn’t exhibit the usual signs of pain. Stephen and I have quickly learned that he generally gets very quiet and withdrawn. It was only when Toby pointed to the saddest face on the pain chart (#1 is a smiley face, #5 has no expression, and #10 has a big frown and 2 tears) that things began to change. If I could have I would have stormed the pharmacy to give him a moment of relief. But finally the order was written for morphine and within ½ an hour he was a different person, more comfortable and willing to be quietly engaged.

On Wednesday we gave Toby his first “bath” since surgery. As I’ve written before, a neuroblastoma bath consists of wrapping Toby’s torso with yards of saran wrap to protect his broviac central line, which juts out of the center of his chest. We fill the tub with about an inch of water, remind him not to splash and quickly clean him up. Wednesday’s bath was further complicated by the 20 lb backpack attached to Toby’s tubes, as well as the countless bandages all over his body.

It was our first chance to see our son fully naked in a week. And it wasn’t pretty. Toby’s entire lower back, from ribs to buttocks, is covered with queasy-looking, evil black-purple bruises. He has both old and new entry point scabs where the bone marrows were performed. There is a large, 10-inch long dressing that curves around his lower right side, and directly beneath is a puffy gauze pad that covers the site of the removed chest tube. In the middle of his back is an area where some skin was accidentally removed, probably due to excessive use of tape. And there are multiple scratches and abrasions where the ekg leads and catheter were adhered. I looked at my child and wanted to weep. If this is not a body engaged in battle, I don’t know what is.

Thursday promised to be a shorter day and we found ourselves at home while it was still light outside. Too tired to do much of anything we all sat on the couch watching Toby’s favorite cartoons and acting passably human. Stephen said that he felt like he had been sleeping in a bus terminal for a month. I laughed in recognition and then Toby spiked a fever. Two hours after we left, we found ourselves back at the hospital, this time in urgent care (MSKCC”s equivalent of an emergency room). Toby had blood cultures drawn, was monitored, and received a dose of intravenous antibiotic at 10 pm. And by midnight we were back at home, with the alarm set for 6 am the next morning.

And today, we realized that Toby’s eyebrows are gone.

I really don't mean to complain... I hope you'll forgive the rant.

Through this difficult week, we have been blessed by many acts of kindness. The blood transfusion Toby received today was direct from a donor. Delicious, lovingly-prepared food has been delivered every night. Drivers have ferried us back and forth from Brooklyn to the Upper East Side, even through insane july 4th traffic. Nurses have taken excellent, loving care of Toby. Doctors have answered our many, many questions with patience and candor. Hospital staff have gone out of their way to be helpful and understanding. We have been unable to say “thank you” to all of you, but please know that your acts do not go unnoticed. We are so grateful for your continued support of our family.

And speaking of family, Stephen’s wonderful sister Anna travelled from North Carolina to spend the week with us. Her presence, attention and love made the days bearable. Best of all, she confirmed our feeling that Toby is just a flat-out amazing little boy. He’s handling this situation with incredible pluck and strength. I have so many Toby anecdotes to share with you: the joyful things he says, the way he interacts with the nurses and docs, the jokes he makes and the way he sees the world. But it’s getting late and I’m nodding at the keyboard. I’ll tell you all about Toby tomorrow.

Love, mooki + stephen

chemo cycle 4

2007-07-03T19:03:00.000-07:00

we have just returned from a 12-hour day, filled with every possible frustration and marked by constant pain. toby has completed day 1 of chemo cycle 4. he's sleeping fitfully upstairs and i'll wake him in a few minutes to pee and get some anti-nausea medication. he is hooked up to a huge backpack of chemo bags and fluid that sits on the floor near his bed. one of the chemo drugs can cause bladder bleeding and kidney failure, so we have to wake toby throughout the night to empty his bladder. it was determined today that toby cannot metabolize codeine, so the pain meds we were discharged with last night did not work to keep him even nominally comfortable. he was switched to morphine today, but still seems very, very tender and miserable. i want to give you all the details, but am so exhausted that it will have to wait until after chemo is over this weekend.

Saturday Update

2007-06-30T18:51:00.000-07:00

we have taken the next step on toby's post-surgical journey and moved down the hall to the regular inpatient unit at mskcc. today the chest tube was removed and toby drank 2 bottles of milk, a cup of chocolate ensure, some strawberries and a hard-boiled egg. he didn't touch the french toast.

he's still puffy and his weight check today confirmed that he's retaining more than 5 pounds of liquid. we hope that he'll be more comfortable tomorrow. most likely he will be weaned from the iv pain meds on sunday and start oral morphine instead. dr. kushner and dr. laquaglia conferred and if all goes well over the next days, toby will start his 4th cycle of chemo on monday or tuesday.

we received a whopping 146 comments after my last post. and we have read them all, three times over. we are blown away by your love, friendship and support. your words have given us so much hope and the strength to carry on. thank you.

love, mooki + stephen

PICU, POU, French toast

2007-06-29T19:40:00.000-07:00

Post-op day #2

Toby is tough.

As I spent the past several days at my nephew's side I have become increasingly convinced of this almost four year-old's inner strength & resolve & repeatedly found myself asking where his strength comes from.

Within less than 24 hours following surgery Toby was breathing on his own, with only a little oxygen to help keep his "levels" appropriately high. When I arrived to the PICU this morning, Toby's NG tube was out, leaving "only" a chest tube, an arterial line (an "IV" directly inserted into the artery), an epidural & urinary catheter. The latter was particularly bothersome to Toby, but as long as the epidural was in the catheter had to stay. Even more difficult for Toby were his hunger pangs. The last time he had had anything to eat or drink was Tuesday night & despite his stomach having yet to fully recover, all Toby could
focus on was "french toast." Seeing & listening to Toby, his face creased in a half grimace, his torso wrapped in bandages, repeat time & again, "I want french toast," "I want french toast" was surreal. For Stephen & Mooki this was obviously heart wrenching. After their numerous attempts to explain, cajole, & distract Toby failed miserably, the only thing more present
then Toby's persistent pleas were the pained expressions on their faces, prompting Stephen to mutter, "what do we tell him now?"

As a doctor, I tried to remain objective & explain to Mooki the necessity of a graded introduction of food, starting first with ice chips, then clears (liquids that can be seen through like apple juice), followed by a soft, bland diet, & finally a regular diet so as not to overwhelm Toby's gut, but as a brother & uncle, seeing Mooki's exasperated & pained expression made me feel like running down to the cafeteria, finding the biggest piece of french toast with lots of syrup, & giving it to Toby no matter the consequences. I wanted to simultaneously feed Toby & hug both Mooki & Stephen, but instead I remained cool & logical.

In the midst of Toby's french toast tirade, we were informed that Toby was being transferred back to the POU (pronounced "poo") pediatric observation unit at Sloan. Toby's quick recovery meant that he no longer required intensive care.

Toby's toughness was tested again during the transfer to the POU. An hour and a half into the transfer, Toby was literally writhing in pain because his epidural had fallen out meaning that he was getting no pain medication. Toby was given a
nice big dose of morphine & within several hours, with epidural & urinary catheter out, his stomach grumbling (indicating greater awakening than his uncle the doctor credited him capable of); Toby was drinking milk (not a clear) & walking the halls of Sloan - tough!

Kids with cancer & their families face endless challenges like Toby, Mooki, & Stephen endured today. These challenges test a familiy's resolve, their faith, & force them to repeatedly reinvent themselves. Mooki, Stephen, Yoni, & Toby are all tough, but without the continued support of their friends & family their resolve is not nearly as strong. Please continue being the true friends & support group that Toby & his family have come so much to depend & rely on.

Yoram

Post-op day #1

2007-06-28T11:29:00.000-07:00

Hi Everyone,

I'm writing from Toby's bedside at Cornell. Toby had a fitful night to say the least. For whatever reason, the sedation medicines weren't working & as a result Toby was awake & fighting to have his breathing tube out. Neither he nor Mooki got much sleep.

Fortunately, this morning Toby was breathing on his own & the tube was pulled out! Right now he's getting a little supplemental oxygen through some nasal prongs.

The epidural seems to be controlling his pain & now both he & Mooki are taking a nap. Earlier, Toby was watching some DVDs & interacting with both Mooki & Stephen. He's pretty puffy from all the IV fluids he got while in the operating room, which should come off in the next day or two.

Toby doesn't like his NG tube that has to stay in until his bowel recovers from the anesthesia which likely won't be for a couple more days. He's been a real trooper despite all he's been through.

This moning, Jessica came by to donate platelets & dropped off some food & when Stephen, Merci, & I returned home late last night, we were greeted by another amazing dinner - thank you all.

Yoram

Surgery Update

2007-06-28T09:42:00.000-07:00

Hello All,

Mooki, Stephen, & I just spent several minutes with Dr. LaQuaglia, Toby's surgeon.Toby is now officially "post-op," after having undergone a "gross total resection." Between the bone marrow biopsies & surgery, the entire operation lasted about six hours. Dr. LaQuaglia was able to remove the primary adrenal tumor, which was surrounded by a capsule relatively easily. There were two additional large "masses" above & below the kidney that he also took out. The hard work of dissecting away tissue searching for cancer-laden lymph nodes followed & Dr. LaQuaglia said that he was "able to take out everything he found."The blood vessels to Toby's kidney & the kidney itself are okay.

Toby didn't bleed too much (400 cc) & on the whole, it sounds like things went as well as can be expected.What's in store for Toby now is that he's to be transferred to the PICU (pediatric ICU) at Cornell while he has a breathing tube & is on a respirator which will breath for him. This will probably be for a couple of days. He also has a chest tube (a tube which allows excess fluid to drain from the surgical bed), an NG tube (nasogastric tube) to keep his belly decompressed, & an epidural IV for pain control.

Once Toby's back at Sloan & recovered, he'll resume chemo (potentially as early as next week) for at least 2 more cycles followed by radiation & antibody therapy.

I'd like to thank Heather, Andy & Rachel, Carrie, Sonia, Monique, Fran, Mirm, Shana, Barbara, Martha, Jonathan, & Merci, all who spent time with Mooki & Stephen throughout this long & trying day. They talked, fed, & most of all provided a much needed & welcome distraction - thank you all so much.

I'll try to send another update in the upcoming days.

Yoram

Surgery + God

2007-06-25T19:20:00.000-07:00

We are less than 36 hours away from Toby's surgery.

Last week we met with our surgeon, Dr. Laquaglia, who impressed us with his warmth, directness and knowledge. He showed us some pretty amazing and sobering 3-d scans of Toby's body, with the large tumor immediately visible in the lower right abdomen. The mass encases several blood vessels and arteries and butts up against the vena cava (the main vein in the body) on two sides. It also completely surrounds a major artery to the right kidney, which puts that kidney at risk. Dr. Laquaglia termed the surgery "life-threatening," but reminded us that it reduces the risk of cancer cells growing back at that location, something that chemotherapy alone cannot do. Bcause of the tumor's location, it will need to be "peeled away" bit by bit from the surrounding areas. There's no margin for error. We asked Dr. L how long the surgery would last and he replied "as long as it takes." He believes he can remove the entire tumor and is committed to doing so, having performed 690 similar procedures over the last 10 years. He really is the best surgeon for neuroblastoma and we completely trust him.

Following the surgery, Toby will most likely be on a ventilator for 24-72 hours and will be in the ICU at Cornell medical center, across the street from mskcc, for observation. He will receive an epidural during the operation, to lessen abdominal pain. He will have lots of tubes and ivs as well as a catheter. We are told that he will be kept sedated until the breathing tube comes out.

These pre-surgery days have been very frightening and I’ve gone searching for neuroblastoma blogs (yes, they exist!) to help my anxiety. I’ve been continuously struck by how much faith these parent/writers have. Their children are going through a living hell... in tremendous pain or in incredibly debilitating circumstances. Hair, eyebrows and eyelashes have fallen out, immune systems are one small step away from collapse, weight is at skeletal levels, small bodies bear the full force of unimaginable quantities of poisons. and yet the parents manage to retain a belief in God, a sense that the world is good and just.

I myself have been having a hard time with God lately. When my parents were here, my father bought me a slim volume entitled "Yosl Rakover talks to God," which he inscribed with his customary passion and elegance: "For Michal, our beloved daughter, in dire need, a heart-tearing shout to the hiding God. With unconditional love, from Mom and Dad, Brooklyn 4 May 2007."

I've read the book twice now and wish that i could say that I find it helpful or inspiring. Perhaps I don't understand the nuances at play. And I admit that I haven't been able to muddle through the commentaries by Emanuel Levinas and Leon Weiseltier... perhaps those would shed some light. The narrator of Kolitz's story is just hours away from his own death. He has lost his wife and all 6 of his children in horrifying circumstances. His comrades in the warsaw ghetto have died around him during the previous night's fighting. Alone, he wrestles with God and proclaims his unyielding faith, even though God has veiled his face and turned away from the suffering of millions. There are passages of stark beauty, but much of the prose is tied up with vengeance and a strange paean to the nobility of suffering. Kolitz passionately believes in God, even though and despite the fact that God is absent. I have always loved this inverted kind of thinking, have felt myself pulled along and buoyed by its logic. But it hasn't moved me this time. It isn't easy to have unshakeable belief when my innocent, beautiful child is in the throes of a life-threatening disease. I'm sorry Daddy, but your inscription is the best part of the book.

I've been luckier with another small book, "When bad things happen to good people," by Rabbi Harold Kushner. Although the title rubs me the wrong way, it is most emphatically not pop-psychology, but instead a moving and elegant response to suffering.

I still feel that what is happening to Toby is tremendously unfair. I am scared almost every minute of every day, I worry endlessly, I ache for my child and I admit that I am angry at God. Yet I find great relief in Kushner’s idea that God is not responsible for human suffering, but can provide us with the strength to cope with our situation.

Kushner writes, “I don’t know why my friend is sick and dying and in constant pain. From my religious perspective, I cannot tell him that God has His reasons for sending him this terrible fate, or that God must specially love him or admire his bravery to test him in this way. I can only tell him that the God I believe in did not send the disease and does not have a miraculous cure that He is withholding. But in a world in which we all possess immortal spirits in fragile and vulnerable bodies, the God I believe in gives strength and courage to those who, unfairly and through no fault of their own, suffer pain and the fear of death.”

Kushner has also introduced me to an incredibly powerful line of reasoning: at a certain point I can stop asking "why has this happened to me?" and move to "now that this has happened, what shall I do about it?" This is the kind of thinking that I embrace.

We ask that you believe, that you pray, that you give us strength and that you think of Toby on wednesday, as he undergoes the major, invasive and 10-hour surgery that will remove the tumor from his body. We are fearful, but determined and hopeful. Our little boy needs your thoughts and your love.

Also, if you are so inclined, please, please send us a comment on the blog. You simply don't know how important it is for us to read your words and wishes. It connects us to all of you in an immediate way that we find very reassuring. I have changed the settings so that you can comment (click on the blue comment link directly below this post) without needing a google account. Simply write your message and click on the orange "publish your comment" to post.

We thank you for your continued prayers, care and kindness.

love,
mooki and stephen

Important Blood Drive Needs!

2007-06-20T08:06:00.000-07:00

Toby needs more blood products! Even without the surgery, he needs 2 or 3 units of blood and 2 or 3 of platelets every week. Right now he has one unit of whole blood and no platelets in his bank. And his needs will go up around his surgery, which is June 27. This means that we all need to make some time in the next week to get over to the hospital and donate. The donor room is open 7 days a week, and it only takes about an hour to give whole blood. Platelets take 2.5 hours and expire much faster, so if you have the time, please consider doing that.

I know that lots of people have tried to donate and been turned away for low iron. I am told by the Blood Donor rep at MSK that eating Total cereal for 2 weeks is guaranteed to get your iron levels where they need to be. So if you've been turned away but still want to give, get yourself some Total and try for next week.

The numbers to call to sign up to donate are:

Mary Thomas - 212-639-3335

Donor Room - 212-639-7648

It's summer, and everyone is vacationing, relaxing, going away. Think how much more you will enjoy your vacation knowing that you did something so concrete to help Toby during this time of increased need.

CALL NOW!

If you need any help navigating the process, feel free to email me.

thanks

Jessica

Details

2007-06-18T10:11:00.000-07:00

last week was a whirlwind, but we were rewarded with a 4-day weekend, our first extended break since treatment began on april 17. i can't quite believe that i've become accustomed to spending every monday, wednesday and friday at a cancer hospital, but it seems we can get used to anything, even the unthinkable. in a strange way, the triad of weekly visits is reassuring.

when ursula, toby's beloved nurse practitioner, told us that we didn't haveto return until monday, stephen and i blinked in surprise and mild panic. we realized that it would be impossible to reclaim a completely pre-disease weekend, but really tried to give toby a taste of normalcy, and found ourselves in the swings at the park, on a kiddie ride at coney island, at an outdoor table eating rice and beans, at the clinton street block party where we let the water from a fire hydrant run over toby's feet. and every minute we worried about him, wondering about his counts, eyeing the outcroppings of bruises on his legs, assessing the dark rings under his eyes, feeling his forehead for possible fever, washing his hands at every opportunity.

overall though, it was a lovely weekend and a much-needed respite. toby's energy level was good, with lots of outdoor activity in the mornings and quieter afternoons inside. we did go out for italian ice every evening, even in the midst of a rainstorm. and we moved today to our next sublet, which will take us through september 1, when we will need to move into a permanent rental. please let us know if you have any leads on a 3 br apartment with washer/dryer in park slope, cobble hill, carroll gardens, windsor terrace or surrounding nabes. we are very concerned about finding a place in time.

our temporary address is 66 1st place, brooklyn, ny 11231.

now, some details about last week:
on monday and tuesday toby received blood and platelets transfusions, from bags marked with small pink index cards. the cards are handwritten, in the style of old library catalogue cards and they let us know that this blood or those platelets were donated specifically for toby. due to privacy laws, the cards don't list the donor's name, but we have found out that more than 35 of you have come forward to donate for toby. we can't adequately express how powerful your actions are. it is indescribable seeing a friend's blood going directly into toby's body . thank you.

on tuesday morning, while on the way to toby's scheduled audiogram, i received a call telling us to report instead to the donor room, where toby's stem cells would be harvested during a 4-hour procedure. apparently, his white blood cell count was on the rise, after just two triple-strength doses of GCSF, the shot that stimulates wbc production. there's a small
window for collecting stem cells and the docs wanted to take advantage of the opportunity. toby had a surprisingly good time during the harvest, eating everything in sight and requesting pizza, peasoup, chips, icecream, muffins, yogurt and fruit salad. we haven't seen him eat so much in months.

his hemoglobin was very low during the procedure and while looking at all the pumps and tubes snaking out of his body and into the mainframe-sized machine, we couldn't imagine just how little blood he actually had circulating through his veins. late that evening we found out that 11 million stem cells were harvested (they needed a minimum of 7 million), which meant that we didn't need to return for another harvest.

wednesday morning toby drank his ct contrast dye/fluid and barely complained of hunger, even though he wasn't allowed anything by mouth until after the ct at 2 pm. he was cold and tired that afternoon, but still managed to simultaneously stuff 2 handfuls of pirate booty and 4 strawberries into his mouth. we'll hopefully have more details on the ct results this coming week. toby's audiogram has been rescheduled for tomorrow.

*************

i wanted to tell you how toby's play has changed over the last two months. he has created new games that don't require much movement and that use the bed as an imaginarium. on tired days we spend many hours lying down under the covers, as toby pretends to turn me into a cat, mouse, or bunny. he then proceeds to tell the "animal" exactly what he's feeling. i don't say much during these sessions, meowing or purring instead of using too many words. and this gives toby the space he needs to work through his new reality. he hugs and kisses the "cat" continuously, all the while explaining the different effects of medicine, or the way a g-shot feels. sometimes he asks the "cat" if her throat hurts and then says she has to take "zofran" (in actuality an anti-nausea medication). or he questions whether her stomach hurts and tells her very seriously that the "chemo medicine" will help (this one absolutely breaks my heart). occasionally he wrestles the "cat's" mouth open and pretends to force down a dose of medicine. this is followed by wordless, fiercely strong hugs, over and over again. i'm trying to adapt to these incredible play therapy games. they are a powerful, bittersweet and aching reminder of where we stand. i love being a foil to toby's imagination and i am constantly struck by his ability to synthesize the unexplainable into positive experiences of love and togetherness.

love to all of you,
mooki and stephen

CT Results

2007-06-16T10:06:00.000-07:00

we received a call from dr. kushner's office yesterday letting us know the preliminary results of the ct scan: the tumor is showing an "excellent" response to the 3 rounds of chemotherapy toby has undergone. no further details, but we wanted to share some good news with you. i'll try to post again soon. have a wonderful weekend everyone.

love mooki + stephen

Hospitals are boring

2007-06-13T14:27:00.000-07:00

In addition to everything else that Toby, Mooki and Stephen have to deal with during their long days at the hospital, there are long periods of time when Toby doesn't have much to do, or doesn't have much energy to be up and playing, or is sick of the options in the playroom etc. Then, like so many three year olds, he wants his parents to have endless amounts of energy to entertain him. This is getting really exhausting for them, and it's another way that we - those who want to support Toby and his family - can help. If you can make it to the hospital (67th and York) for even half an hour to read Toby some stories, play a game, do a puzzle, sing a song, do card tricks...pretty much anything that might be diverting, your help is needed.

There are a few caveats: Toby's schedule at the hospital is extremely unpredictable, so flexibility and knowing that you may get canceled at the last minute or something may come up is crucial. Right now, he is only at the hospital 3 days a week, but that can change at any time. You must be TOTALLY healthy to visit - no sniffles, runny noses, fevers etc. Like all 3 year olds, Toby may not be interested in connecting with a new person at any given time, so you shouldn't take it personally if he isn't as gracious as, say, a grown-up would be that you went out of your way for him. But an infusion of good play energy, even if it's only for a half hour or so, would give Mooki and Stephen a little slack in their very long days up there.

If you want to go visit Toby, call Mooki at 917-359-2989 or email her. As with everything else, even small things matter - a short visit will mean a lot. You should call right before you want to visit - like the day before, or even that morning. Mooki shouldn't be keeping a running list of who wants to do this. It's just got to be a fairly spur of the moment thing.

You can double your support by visiting Toby while you're at the hospital to donate blood or platelets, or by donating while you're there to visit.

thanks

Jessica

Toby's Upcoming Surgery

2007-06-13T10:10:00.000-07:00

Dear Family

Yesterday we began the initial steps in preparation for Toby's surgery on the 27th. The day began like so many others of late, but our destination was the donor room on the first floor of the hospital and not pediatrics unit on the 9th floor, we were there to harvest Toby's stem cells. In effect, we were saving some of Toby's stem cells for future use (hopefully we will not need them). The procedure is much like donating platelets, but instead of separating platelets from the blood, stem cells were collected.

Today, again, up to Sloan-Kettering, this time for a pre-surgery CAT scan, the scan this time is to determine how the 3 rounds of chemo have effected the tumor. For the scan Toby will be under "sleep medicine" for about 30-45 minutes. We are silently hopeful that the scans will show a diminished tumor and that the surgery will take place on the 27th.

We do not know what to expect in the days leading up to the surgery and the day of the surgery but we expect it to be difficult. The surgery as you might imagine will be invasive, lasting 8-10 hours, after which Toby will be in the ICU and then move to the in-patient unit until he is ready to come home. Unfortunately, once he is well enough to come home he will also be well enough for the 4th round of chemo.

As we are preparing for these next steps Mooki and I wanted to let you know that your support, e-mails, packages, prayers, donations of time and money have been very much appreciated. All of this said we will ask for something more- Yoram's schedule at Children's Hospital will limit his time here in NYC the week of Toby's surgery. Most likely Yoram will be here the day of the surgery, but we expect that he will need to be back in DC for most of that week.

Anna will be with us the for a week the first week of July and Catherine has offered to be here for a week beginning the 15th of July.We know it is very short notice but if any of you were considering coming to nyc the week of June 24th will be a challenging week for all of us.

much love

stephen & mooki

Toby Update

2007-06-11T04:31:00.001-07:00

we have a busy week coming up with a cbc scheduled for monday, an audiogram to test toby's hearing on tuesday, a neck/chest/ abdomen/pelvis ct scan with anesthesia on wednesday and stem cell harvesting on thursday and possibly friday. we will probably need more blood and platelets transfusions as well.

friday was a typical day at the hospital: a short visit turned into an entire day of procedures, waiting, and unexpected developments. we arrived early for a routine cbc (complete blood count, when blood is drawn and tested from toby's broviac port, in the middle of his chest). he was also scheduled to receive his 4th loading dose of pentamidine, a drug that wards off pneumocystis pneumonia. toby had been on an oral regimen of a similar drug, but we are finding it almost impossible to give any medication by mouth. toby cries, flat-out refuses, screams, and engages in talmudic-worthy discussions about why he can't swallow medicine. we cajole, beg, bribe, institute rewards via charts with shiny stars, explain, cry, insist, occasionally force the medicine down his throat, and generally give up in frustration. pentamidine, which can be given via iv directly into toby's "tubies," promised most of the gain with little of the pain. unfortunately, one of the side effects of the drug is vomiting and nausea.

we spent last week working with the nurses to finetune our dosing regimen: premedicating with aloxi, an anti-nausea drug, then adding in vistaril, another antiemitic. no matter what we did, within 30 minutes of receiving the pentamidine, toby would moan, slump and throw up miserably and violently. toby has barely been eating and was still vomiting from the cisplatin, additional vomiting from a different drug just added insult to injury. by friday we finally hit on the right combination, thanks to the perseverance of nurse kate: aloxi and vistaril, given simultaneously over a half hour. then pentamadine, set to drip very slowly over the course of 90 minutes.

when the counts came back from the lab we learned that toby's hemoglobin and platelet levels were both quite low and transfusions were necessary. so we waited for a bed, waited for the bags of blood products to arrive upstairs, waited for the premeds to take effect and started the 1/2 hour infusion of platelets. midway, toby developed hives, an occasional reaction, and we waited while consultations occurred, more labs were done, and eventually the decision was made to take him off the platelet transfusion. then 3 hours of blood transfusion and at 6:30 we were finally, blessedly, home.

*******

there have been days, mainly at the beginning, when toby's only comfort has come from his cd player and a constant loop of randy's music. initially stephen and i found the sight and sound impossible to witness without breaking down in tears. the combination of toby's curled-up little body on a hospital bed and randy's sweet voice singing about trains and sunshine and mosquitos was just too difficult to bear. but we saw how the music soothed toby and gave him peace. somehow we've learned how to listen on toby's level, without our adult associations, without the pain of memory, with open hearts to the moment. i was reminded of all this on thursday night when i had the tremendous opportunity to attend the toby benefit concert, organized and sponsored by beansprouts.

from the moment i saw the garden overflowing with strollers and families, i felt the tears coming on hard and without interruption. i didn't know if i would be able to handle the huge emotions: there are beautiful, healthy children everywhere, i don't know how to act, why can't toby be here, i'm afraid i will cry and won't be able to stop, if you hug me i might not be able to let go, i don't understand why this is happening, i don't want people to stare, how can my child have cancer? it was incredibly difficult, but i am so glad i stayed at the concert. every person i saw, every note i heard, has made a difference for me and stephen and yoni and toby.

a message to randy, victor+friends, joanne, hot peas 'n butter, beansprouts, friends: we are comforted by you. you remind us that we are not alone. you enable us to feel a part of this community and we are so grateful.

love, mooki and stephen

Scattered Thoughts

2007-06-06T04:45:00.000-07:00

i'm too tired and emotionally overwhelmed to put together an update, but do have some scattered thoughts that i want to share.

we've been living out of suitcases for the last 3 weeks, recycling the same 4 outfits over and over. in a way it makes life simpler, especially on those mornings when we have to leave brooklyn at 7:15 in order to make it up to memorial sloan-kettering in time for treatment. i've discovered that most of my clothes are totally inappropriate for the hospital... who can possibly wear pointy-toed shoes and sleeveless dresses while holding and consoling a screaming, hurting child? cute skirts just don't cut it when trying to balance 2 bags, a stroller, a portable urinal, a barf basin and an iv pole. this week, with the aftereffects of cisplatin lingering, our plain-jane tshirts have been put to good use as fluid collectors, face smoothers, vomit moppers.

a few weeks ago i asked some of you to help me get soft lightweight pants for toby to wear at the hospital. i was concerned that i didn't have anything appropriate in his size. as it turns out, i needn't have worried. toby is so skinny that the clothes that were tight on him last year are now baggy. i'm constantly retying the waistbands of his pants, so that they don't fall off in midstride. the collars of his tshirts look huge and loose around his little neck. and his underwear literally hangs off him. it's so disorienting to be going backwards, from size 4 to size 3. i know that we have only just started treatment... he will get even skinnier...

toby has eaten just a few bites over the last 5 days. all week we have tried every possible food and combination. his tastes keep changing because of the chemo... one day it's only crunchy foods, the next it's only mushy. add in nausea, mouth sores, exhaustion and neutropenic restrictions and feeding toby becomes akin to an act of prophecy. we're never quite sure what food will go over, but tonight we won the lottery with 6 ounces of ensure, disguised in his sippy cup as "chocolate milk."

i've been having a hard time falling asleep this week, alternating between despair and tears every night. we've made it through 3 cycles of hardcore chemo and that's a lot. what i'm having trouble with is the knowledge that there is still so much that awaits us. and it seems huge, frightening, insurmountable. a massive surgery is around the corner. and then 2 more rounds of chemo, but possibly more. then extremely painful 3f8 antibody treatments that can continue for up to 2 years, overlapping with radiation, and accutane. i see the effects that chemo has already had on toby... i don't know how many of you would recognize him. and i worry what the next stages will be like for him. i know we have to stay the course. i know that this treatment, with all of its horrible short-term and long-term side effects will ultimately give us the best chance of saving toby's life. i know that i can't keep comparing our life today with our life of just 7 weeks ago. and i know that i need to stop thinking about the numbers, about the kids who don't make it.

what i need to do: focus on my beautiful child, make sure that he is comfortable and happy. take it day by day or even hour by hour. play. be loving to my older son, who is such an incredible boy and is going through so much right now. be grateful to my friends and family who are helping in so many, many ways. and thank god for stephen, who is taking every step with me.

Another Way to Donate

2007-06-04T05:04:00.000-07:00

A Benevolent Account has been established in Toby's name at Washington Mutual Bank. Donations go directly to Toby and will be used at the family's discretion without restrictions to pay expenses associated with the support and well-being of Toby. These funds will be used for un-insured medical expenses, housing, food and Toby's care. Donations to the benevolent account are not tax deductible.

Donations can be made via a secure wire transfer directly into Toby's account at Washington Mutual. Please contact Stephen Pannone at svpannone {at} yahoo.com for account reference numbers.

Additional wire transfer information and instructions can be found at:

http://www.wamu.com/commercial/internationalbanking/foreignexchange/wiresdrafts/order/order_NY.htm

Washington Mutual Bank
700 6th Ave.
New York, NY
10010
www.wamu.com

U.S.-1.800.788.8000
International- 818.775.6420 (collect call) or
800.540.WAMU.1
bank swift code- WMSBUS66

First-hand from the MSK Donor Room

2007-06-04T05:01:00.000-07:00

On Friday, I donated platelets for Toby at the MSKCC donor room. I want to get the word out so that everyone can know how really easy and relatively painless the whole procedure is. And I'm completely nervous and ick-ed out by needles - I am not stoic about these things, really.

First - MSK does everything they can to make it easy to donate. You call Mary Thomas or the donor room to schedule an appointment. (Mary's # is 212-639-3335 and the Donor Room is 212-639-7648). They take donations every day, including weekends, and they keep track of what Toby's needs are so that you will only be scheduled when they know he will need something. This is pretty easy right now, as he is in pretty constant need of both blood and platelets. If you drive to the hospital (which only took about a half hour from Park Slope on Friday at 9:30 am), you can park for free in the MSK parking lot at 66th and York. They give you a parking voucher when you check in with the Donor Room.There's a link on the right side of the blog where all the info is easy to find. There is also lots of information about donating on the hospital's website.

Once you get there, you fill out some paperwork and they take a pinprick of blood from your finger to find out if your iron count is high enough. A number of Toby's friends have been turned away because their iron counts were too low, but if you eat high iron foods and/or take iron supplements (like liquid Flouridex) for a couple of weeks, you can try again. Once you get through the preliminary stuff, you go into the Donor Room - a room with about 8 dentist-like chairs with little TVs attached to them. You sit in one of them, they put the needle in your arm and take your donation. OK - so here's the deal with the needle: If you've ever given blood before, or had an IV put in before - you know what it feels like. It does hurt, but really only for about 10 seconds. Then you really don't feel it. You may not want to look at the tubes coming out of your arm, but you don't feel any discomfort once the needle is in. For anyone who has ever given birth, it hurts SO much less than even five minutes of your labor did. Even the most needle phobic among us can do it. I am in that group, so I can attest to it.

I gave platelets, which meant that my blood went into a machine that separates the red blood cells from the platelets. The platelets are collected for Toby and the red blood cells got mixed with a small amount of a short-term anti-coagulant and put back in my arm with the same needle that the blood was coming out through. It felt slightly cold around where the needle was and my fingers were a little tingly from the anticoagulant, but again - no pain. And for those who worry about the hygiene of the equipment that is putting blood back into your body, all parts that touch the blood are disposable and only used by one person.

The whole process once I was hooked up took just over 90 minutes. (Donating blood is much quicker.) I got a special treat, because Mooki knew I was there and she came to visit me for a few minutes, which was great. In the past when I have given blood, I have been extremely light-headed. Because they give you back your red blood cells, that doesn't happen with platelets. I drank a cup of oj and ate a cookie, and I was able to drive myself home about 20 minutes after I was done.

I think there's a good chance that the platelets that came out of my arm on Friday will go into Toby's arm on Monday or Tuesday. I can't imagine a more direct way to help him and his parents.

I hope that everyone who reads this will try to donate. If you are a different blood type than Toby, they will swap your blood for one in the general hospital blood supply and put your name on Toby's donor list. Almost everyone can do it (they will talk you through the list of who can't - mostly involving living abroad - when you call for an appointment). You can go with a friend to have company when you do it. It takes less than a whole morning. For most of us, this is the most important and direct thing we can do to help Toby and his family.

If you have any other questions, or need any help navigating this process, please don't hesitate to email me at jbauman {at} pipeline.com.

Make your appointment now! You'll be glad you did!

Jessica

Toby in the NY Daily News

2007-06-03T09:18:00.000-07:00

Found the article online here.

Excerpt: When folks found out that 3-year-old Toby Pannone had cancer, everyone wanted to help. It was the neighborly thing to do.

But the novel twist to the old-fashioned acts of kindness offered to Toby and his parents - Stephen Pannone and Mooki Saltzman - was that many of these neighbors lived in a virtual community on the Internet.

Some volunteered to cook meals, others offered to provide rides from Brooklyn to Memorial Sloan-Kettering Cancer Center in Manhattan. When they learned Toby's illness meant he couldn't be around the family's cats, neighbors took the two pets in. When mold was discovered in the family's home, other neighbors offered a new place to stay.

bone marrow results and chemo 3

2007-06-02T20:22:00.000-07:00

we received the results for the bone marrow biopsies late thursday afternoon, and we're feeling guardedly positive. one of the samples is clean, the other still shows neuroblastoma cells. while we would have been happiest with two clean biopsies, we are going to accept this as a small victory. the chemo is working. it will take more cycles to get the bone marrow totally clean, but we are determined to get there.

the biopsies were taken from toby's hip bones and i'll share with you the official language: 1. bone marrow, left posterior iliac crest, biopsy: metastatic neuroblastoma in multiple small foci. the uninvolved bone marrow appears unremarkable. 2. bone marrow, right posterior iliac crest, biopsy: normocellular bone marrow (approx 80% cellularity) with trilineage hematopoiesis the m:e ratio is normal with adequate maturation in all cell lines we see no evidence of neuroblastoma

i have to admit that it sounds better than the language that accompanied toby's first bone marrows, done during the awful week of diagnosis on april 20: "metastatic neuroblastoma extensively involving bone marrow."

we are still awaiting the results of the bone marrow aspirates, which test the blood/liquids from the front of the hip area.

the procedure itself was unremarkable and probably more difficult for us than for toby. we brought toby's boom box into the operating room and he received "sleep medicine" while listening to kermit sing a song about rainbows. stephen was holding him as he entered the land of dreams. 20 minutes later he woke up and demanded to hear the rest of the song which we had so rudely interrupted. the next day he realized that he had four 3-inch packed gauze dressings on his lower torso. although initially alarmed, he has become extremely protective of the bandages and refuses to let us remove them. since toby has no control over anything in his life right now, we are letting him hold onto his bandages until they rot off.

round 3 of chemo was exhausting for all of us, but again, toby weathered it amazingly well. we had very long days at the hospital, leaving the house at 7:15 in the morning and arriving home at 7:30 in the evening. the drugs in cycle 3 are particularly harsh, causing extensive nausea, vomiting and the possibility of significant hearing loss. and yet toby continues to amaze us with his energy, his smiles, his smarts and his incredible sweetness. he now accepts the 6-foot-tall IV "pole buddy" as a natural extension of himself and pushes it around, pretending to be on a highway. this week he started to help the nurses to draw his own blood, and to flush his "tubies" with heparin. and for the first time since the beginning of treatment he asked about his broviac tubes, "where do they go, mommy? what are they connected to inside my body?" there's something very sad about toby's necessary medical education. i would much prefer that he ask about frogs or fairies or sunshowers. on the other hand, we are in awe of the force of his personality, his inquisitiveness, his resolve in the face of a completely new life and environment. he is engaging with the world and we embrace the opportunity to teach, to learn, to be silly.

we are at home for the weekend, with a 72-hour IV backpack of fluids connected to toby and carried by either stephen or me at all times. toby's not eating much because of the nausea, but he has only thrown up twice. he is officially neutropenic, so we are again paranoid about every real or imaginary germ. neutropenia (when the white blood cell count bottoms out) requires a special diet and extremely cautious behavior from constant handwashing to limited contact with other people. this is what went through my brain as i was making breakfast this morning: make sure that i cook the eggs enough, did i wash my hands just now? i have to throw out the strawberries and blueberries so that toby doesn't ask for them. oh no the grapes too. what time did i give him the anti-nauseau medication? if grapes aren't allowed then what about the grape juice he had for shabbat last night? are these eggs dry enough yet? oh god i just noticed that the smoothie has strawberries in it. well he'll probably not eat any of it anyways. i have to get more purell. when was the last time toby peed? did i breathe on him this morning when we cuddled? what if i have a cold? what if i've cross contaminated him and we have to be admitted to the hospital again? ok maybe i should wear a mask. we need more tomato soup. i wonder how much toby weighs. damn the eggs are burnt.

on june 15 toby is scheduled for a ct scan, to see how the tumor has responded to cycle 3 of chemo and we are tentatively scheduled for surgery on june 27. i anticipate that stephen and i will need a lot of support that day, and in the week leading up to and following this massive operation.

speaking of support, tomorrow's (sunday, june 3) ny daily news will have a story about toby and the amazing support network that each and every one of you has created through your food deliveries, errands, financial assistance, blood and platelets donations, visits, gifts, phone calls, emails, stoop sales and more. i have said it before and i'll say it again, we would not have gotten this far without your love, your strength and your care. look for the piece in the brooklyn section.

love, mooki and stephen

If Toby had so much mucous, then why was it a better day?

2007-05-30T04:36:00.001-07:00

Last week, when toby was still in the hospital, i came home to have dinner and spend the night with yoni. toby had been admitted for the second time in two weeks, he was neutropenic and his intestinal tract was lined with painful sores all the way from mouth to bottom.

i rarely have any one-on-one time with yoni and we certainly don't have a chance to catch up on standard teen topics (he's almost 15). instead, yoni asks me how toby is doing and i report back something like this: "he's better, honey. he had more energy today and could actually watch tv. he had 8 spoons of broth. he didn't cry that much. and he only threw up once when we gave him medicine. what did he throw up? oh, the broth and about a quart of mucous."

yoni was quiet for a moment and then made this brilliant statement: "If Toby had so much mucous, then why was it a better day?"

It took my breath away. I laughed and laughed at the truth of his words. From the mouths of babes indeed. perhaps unwittingly, yoni had arrived at something very deep: an attempt to understand the enormous shift in perspective that cancer has wrought upon our lives.

six weeks ago a scrape or tumble was cause for alarm. now i watch as toby endures daily pain that most of us cannot even begin to imagine.

cancer has robbed my child of his softness, his innocence, his curls, his ease, his strength, his body, his endurance. It has also revealed some remarkable things. I have a little boy who says “please” and “thank you” and “excuse me” as poisons drip into his bloodstream. I have a little boy who has rediscovered the love of his older brother, playing catch together for 20 minutes after being released from the hospital. I have a little boy who sits on the stoop with his cousins and tells them that he is about to change their bandages and give them shots that will hurt.

cancer makes the world outside the hospital seem unreal and soft at the edges. I stumble into the light after days and days on the 9th floor and I can’t understand what I see. Every person, every tree and house and street and interaction seems so vulnerable and beautiful that I want to cry. Did I live like this too, before april 17th? Did I notice that even Brooklyn looks like a thomas kinkade giclee reproduction?

cancer makes words like “brave” and “courage” sound ridiculous. sometimes, during a particularly painful procedure, the nurses say to toby, "you're being so brave!" or a friend will tell us how courageous we are. honestly i don't know what those words mean. Maybe they are placeholders for feelings that are much, much bigger and unwieldy. They’re safe words, but they aren’t really true. Here are the words that speak to me: fear, numbness, why, desperation, intense love, sadness, more fear, exhaustion, hope.

Our perspective has shifted and I find hope in strange places.

Toby threw up a quart of mucous, but he giggled when we tickled him under his arms.

The pale, skinny, hairless children at the hospital don’t look half-dead to me anymore. I can identify them, I can match them to their parents, seeing them day after day is enormously reassuring to me. The children look half-alive now.

I sometimes find it hard to look at healthy children. They are so beautiful. I cannot believe how much they climb and laugh and run and whirl around.

and this: The children at beansprouts are studying insects: the ladybug sheds her skin over and over again, each time revealing new skin underneath. One day she feels very tired. She stops eating and curls up. And then she waits. When her new skin grows hard, it splits and she climbs out of it one last time. She is very, very pale. She waits. Slowly, slowly, slowly her color grows stronger. Her black dots appear. She is a ladybug.

We love you all. Pray for Toby.

mooki and stephen

Toby Weekend Update

2007-05-28T07:39:00.001-07:00

I've just returned (along with my wife Gila, & our 2 girls, Isabel & Ayelet) from NYC where we spent the weekend with Toby, Yoni, Mooki, & Stephen.

I haven't seen Toby in several weeks & this was the first time Toby's cousins have had an opportunity to visit since he was diagnosed (Isabel & Ayelet traveled to NYC a few weeks ago, but Toby was admitted to Sloan the day of their arrival so they couldn't visit).

Toby greeted us Friday afternoon bald & quite a bit skinnier, but still as sharp & inquisitive as ever. After a short "warm-up" phase, Toby, Isabel, & Ayelet were like the three amigos. Toby, sat on the couch & played DJ, adeptly manipulating his trusty boom box between various favorites, all the while grooving to the tunes. Stephen's "shake it, don't break it" was all the motivation he needed. Isabel, never one to shy away from an opportunity to dance, somehow managed to adapt her ballet moves to keep in step with Toby's eccletic tunes. Not to be left out, Ayelet (inbetween stealing bites from Toby's perfectly color coordinated, diverse, & healthy plate painstakingly prepared by Mooki) rolled between her cousins on Toby's Good Humor truck.

The cousins then made for the closets where Toby introduced the girls to one of his favorite games "elevator." They traveled between the various floors of Macy's with Toby acting as elevator operator, food deliveryman, & chef. By the early evening Toby was running(!) from room to room & while not nearly as chatty as Isabel, he held up his own. By dinner reality had snuck back in; Toby began to limp & while we cleared our plates & then some, Toby nibbled only at his food. While we were enjoying each others company, Sonya & Itamar were packing up part of the 13th St. Apt (& they returned today for more).

Saturday we headed to the Clinton St. park where the cousins played "train." They pushed their carriages around the circle at least a dozen times. We then tested each other's accumen imitating animal-calls based on Ayelet's choice of various creatures. Yoni & I played whiffle ball (he's very good) & then we all walked to Nino's Pizzeria for lunch. While Toby took a well needed 3 hour nap, Yoni & I went to Prospect Park where we played more whiffle ball & frisbee (he's pretty good at that too).

After a late dinner, Toby, Mooki, & Stephen went out for Italian Ices.

Sunday morning, Mooki took Yoni to Prospect Park where she filmed him launching rockets. Toby & the girls played some more & I got a chance to read Toby & Ayelet one of my favorite books (Bee Bop Express) about a train hauling jazz musicians from NYC to New Orleans.

As expected Toby left his mark on us all. Ayelet (2 years-old) has a new mantra, "Toby & Yoni my cousins, I love them." I feel very fortunate that we were able to enjoy a semi-normal weekend with Toby, which will probably be the last one for a while. Tuesday, Toby has reevaluation scans to assess how much his tumor has responded to the chemo. Later Tuesday he starts his 3rd cycle of chemo (this time with 2 different medications he has yet to receive). The idea being to keep the neuroblastoma from developing resistance to any one group of medications. One of the meds Toby will get (cisplatin) is especially nasty, in the immediate phase it can cause pretty significant nausea & vomiting & later it has the potential for causing hearing loss.

Following the 3rd cycle, Toby will have a repeat bone marrow evaluation (the results of Friday's marrows are still pending) & the surgery to remove whatever tumor(s) is/are left.

Please donate blood & platelets if you can.

I'll keep you posted as things develop.

Yoram

bone marrows

2007-05-25T04:33:00.000-07:00

i still haven't posted that update, but wanted you all to know that tomorrow morning toby is going in for bone marrow aspiration and biopsy, to see if his marrows have responded to the 2 mega cycles of chemo so far. on tuesday we will start cycle 3 of chemo.

when toby had his first marrows done on april 21, i remember the doctor coming out of the operating room with gallon ziplock bags filled with vials and vials of toby's soft spongy tissue. he told me that he could see tumor in the marrows with his bare eyes.

i can't even think about tomorrow. i am so scared. and i pray that toby's marrows are cleaner. our wonderful little boy who can tell you about every train in the subway system, who is beginning to add numbers, who loves tomato soup, who delights in birdsong, our little toby deserves to have clean marrows.

mooki

toby is home!

2007-05-23T10:57:00.001-07:00

just a quick note to let you all know that toby's counts came up during the night and we are now home on kane street.
i'll post an update later tonight. for now we are going to enjoy this beautiful afternoon back in brooklyn.

love.

Some more Toby information

2007-05-22T04:32:00.000-07:00

Toby was admitted today because of a known, but particularly nasty side effect of his chemo. In addition to wiping out his bone marrow, the chemo's not all that smart. By this I mean that in addition to targeting neuroblastoma cells, the chemo affects normal cells, especially cells that have a quick turnover rate. The cells that line the intestinal tract, all the way from the mouth to the bottom are especially susceptible to chemo. The result is that Toby's mouth, esophagus, stomach, & bottom are raw, tender, & ridden with sores. This obviously makes things like talking & swallowing very painful let alone eating & drinking (imagine trying to chew something salty or crispy with open sores).

Toby's weight is down & he's dehydrated, so his docs decided it was time he start TPN (nutrition that he'll receive through his iv). The hope is that as Toby's marrow recovers & his sores resolve, he'll be able to resume eating on his own.

I'll keep you posted.

Yoram

Toby is back in the hospital.

2007-05-21T12:30:00.000-07:00

He arrived to the clinic today and was immediately given i.v. fluids, as well as blood and platelet transfusions.

This weekend Toby was couch-bound; the energetic, playful, and active Toby of last week succumbed to the reality of chemotherapy. Toby's inbetween the second and third cycles of chemotherapy and his bone marrow is pretty wiped out. This means that he has very few white blood cells to fight off infections, hemoglobin to carry oxygen to the body (and a prime source of energy), and platelets which clot the blood and prevent bleeding.

Toby's skin is covered in crops of purple and black bruises (as a result of too few platelets) and rather than exert himself like a normal four year-old, he preferred to remain motionless on the couch (not enough hemoglobin).

Toby needs for as many of you as possible to donate blood and platelets, not only before his surgery (scheduled sometime after the third round of chemo), but now too. If you're able to please try to get over to Sloan and donate.

Thanks,

Yoram

Comment on 5/17 post

2007-05-21T11:00:00.000-07:00

Dear Mooki,

Your poignant account (5/17) of a 6 week struggle to find out what was wrong with Toby mirrors my 4 month trial to get a diagnosis- ovarian cancer.

You are so generous in sharing your raw emotions, and humanity. You invite us into the heart of your family- I love the scene of Toby running back and forth, while Yoni is belting out, "If I were a rich man." You express yourself so well- it's no wonder Toby is so articulate!

The reason I'm writing this on the public blog is so everyone reading it will learn from you how we need to advocate for our own health. Dr, Jerome Groopman, author of "How Doctors Think" (March '07), has been interviewed on national TV. He feels that doctors often think inside the box, and make up their minds about the diagnosis in the first few minutes of the visit, especially now with time-limited appointments. He says, "Doctors frame patients all the time using shorthand, and fail to question their (own) assumptions." So, "Doctors desperately need patients and their families to help them think...How a doctor thinks can first be discerned by how he speaks and how he listens; how he asks questions and how he responds....Emotion can blur a doctor's ability to listen and think."

And if we don't get the answers we need by polite conversation, we may need to "scream', as you did, or at least, become firmly and persistently aggressive, as I did. Shalom!

Posted for Aunt Blanche

Blood and Platelet Drive

2007-05-18T16:59:00.000-07:00

Dear Friends of Toby,

I know that many of us have hoped to be able to DO something that we know will be concretely helpful to Toby and his family right now. Perhaps one of the most important things that we can do is donate blood and platelets. Toby's treatment will include an ongoing need for both blood and platelet transfusions. Memorial Sloan-Kettering, where Toby is being treated, will accept donations of both blood and platelets designated specifically for Toby. Any donation that Toby does not use will be released for use by other patients, many of whom are children. Platelets are especially important - please consider donating platelets if possible. (The process takes longer and is slightly more involved than donating blood, and the shelf life of platelets is much shorter.)

GENERAL INFORMATION ABOUT DONATING BLOOD AND PLATELETS AT MSKCC:

Donated blood will be held in Toby's name for up to 30 days, then given to other patients before it expires. Any donation that does not match Toby's will be exchanged with one from the general pool and the name of the donor will be listed in his blood bank. Platelets are especially important for chemotherapy patients. Donated platelets are held for 5 days - first 3 days for testing, then 2 days in storage. Toby's doctors have said that he is likely to need 2-3 units of blood and 2 units of platelets every week for the next six months. The Blood Donor Room keeps track of what the supply and the needs are so that donors are scheduled to best meet Toby's needs.

All blood types are acceptable for all donations.

Donating blood takes about an hour, including filling out paperwork. Donating platelets takes about 2.5 hours, including paperwork. Products containing aspirin, ibuprofen or similar items cannot be taken before platelet donation. The process of donating platelets is similar to blood, except that you are hooked up to a needle for a longer time (60-90 minutes). Your blood goes into a machine which spins out the platelets and recirculates the blood back into your body.

INFORMATION FOR DONORS

If you plan to donate, please pre-screen yourself by reviewing the eligibility requirements on the website, www.mskcc.org/blooddonations; click on "general guidelines" to begin the review, then scroll to the bottom of the web page & click on "additional donor requirements" & review any section that is pertinent.

All donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center. To schedule an appointment or get more information, call Mary Thomas, coordinator of the Blood Donor Program at 212-639-3335 or email at thomasfm@mskcc.org. You can also call the Blood Donor Room at 212-639-7648. When you make your appointment, let them know that you are donating for Toby Pannone.

The Donor Room is located at 1250 First Ave (between 67/68 streets) in the Schwartz Building Lobby. The hours are Fri, Sat, Sun, Mon 8:30-3; Tues, Wed, Th 8:30-7.

There is free parking available for donors at the garage at 433 E. 66th St, at the corner of York Ave. You can get a voucher from the Blood Donor room.

If you want to donate, and are having trouble navigating the MSKCC system yourself, please email Jessica at jbauman@pipeline.com. I will be happy to do what I can to make it possible for you to donate.

As Mooki and Stephen know about specific needs for either blood or platelets, we will get that information up on the blog. Mary Thomas will also know what Toby's particular needs are.

Thank you in advance for this extremely important support to Toby and his family.

Toby Update

2007-05-18T04:31:00.000-07:00

today (5/17) marks exactly 1 month from the day we found ourselves at nyu medical center, scheduled for an xray of the spine, after i screamed at my pediatrician for not taking me seriously. we had been to the pediatrician 3 times over the course of 6 weeks, each time with the same complaint: recurrent neck pain that we felt couldn't be explained away as stress-related. and finally after begging for a ct or an mri or a referral to a specialist, we were given the prescription for an xray. 2 hours after the test, as we were on our way to a neurologist uptown, we got the call from our pediatrician that we needed to return to nyu for a scan of the abdomen. the radiologist had seen something on the xray: the spine seemed fine, but toby was "splinting away" from an area in his abdomen. there was something in his stance that needed to be reviewed. at 4 pm we found ourselves back in the xray room and at 5 pm started the longest ultrasound of our lives. we still had no idea what was going on, but after 90 minutes of scanning, i started to feel prickles of fear. and when the tech told us that the head of pediatric radiology was coming in to interpret the films, i couldn't imagine what the problem might be. at 7:30 pm, she told me they had found a mass in toby's abdomen and put me on the phone with my pediatrician. i don't remember a word he said except for "tumor." toby and stephen were standing behind me, and i started shaking uncontrollably, my hands flapping up and down in a crazy pattern of helplessness and disbelief. i handed the phone to stephen because there was no way in the world i could repeat the words i had just heard. they were gobbledygook, insane torrents of faceless, nameless data. and i ran to the other room and called my brother, screaming into the phone and begging him to translate my agony into something i could understand.

that night we were admitted to nyu and started the life we have today.

there are moments of surreal beauty. on tuesday we went to prospect park for an hour and sat on the hill, trying to whistle through blades of grass. a man jogged by wearing just his underwear and toby threw his head back and laughed. we took off our shoes and played hide-and-seek behind the tree. and that night the four of us went out for ice cream on court street and listened to our little flaneur's commentary on brooklyn streetlife.

last night toby inexplicably spent 20 minutes running (yes, running!) back and forth from bedroom to living room in an incredible display of pluck and sweetness. the smile on his face spread from ear to ear and his gait was familiar, healthy, the old gait. his little body seemed magically solid. for a moment i forgot about cancer. that night he slept in his own bed for the first time in days.

while toby was running, yoni was practicing "if i were a rich man" from fiddler on the roof. his classmates had chosen songs from grease, blood brothers, chicago. my amazing, almost-15-year-old boy picked my favorite, quintessentially jewish showtune as his performance piece. he was belting it out, all the yidle-diddles and the biddy bums, accented with full-body shimmying and tevye intonations. and then i heard these words coming from his room: "Lord who made the lion and the lamb; you decreed I should be what I am; would it spoil some vast eternal plan; if I were a wealthy man?"

and i realized that stephen and yoni and toby and i are rich indeed. we have been the recipients of an enormous outpouring of love, support and care from an incredible community that blossomed around us in a matter of days. we are being fed, we are being visited, we are being attended to with grace and feeling and goodness. i want you all to know that we are making it through this devastating time thanks to you. a month too difficult to bear, yet studded with moments of true compassion.

love, mooki and stephen

Little Toby

2007-05-17T06:15:00.000-07:00

from mooki: this comes from my friend judy, on her blog grandenchilada.
it was written last week, before we moved to our sublet on kane street:

My friend Toby is three years old and he has a very aggressive form of cancer, recently diagnosed. I baked a chocolate cake for his parents and his brother and brought it to his house. I didn't expect to find him and his parents at home. They were told by doctors that they cannot stay there because the environment can be toxic for Toby, who is extremely weakened by chemotherapy. But to my surprise, they were there and Toby was awake and feeling better. He was arguing, refusing (with good reason) to take his horrible, disgusting pink medicine (who do the medicine people think they are fooling with the pink color?) and demanding cookies and orange juice.

Toby is a beautiful, gorgeous little boy. His skin is the color of caramel. His lovely soft brown curls are starting to fall, and he has lost 8 pounds, but he still is very, very handsome. He is also strikingly articulate for a boy his age. He talks beautifully. He is very smart. His mother told him I had baked a chocolate cake, a feat that left him unimpressed. He told me he likes vanilla better. He has very definite opinions, and not only about cake. I gather he has strong opinions about subway lines as well. I'd love to talk to him about this topic in more detail when he gets better.

Toby got a video made by his teacher at school, with all his classmates greeting him through the camera and listening to wonderful, silly songs that the teacher made up. I don't know if I can describe Toby's face as he watched his friends. A smile appeared that belonged to someone much older, someone like a very wise adult. A skeptical smile. A knowing smile. What was he thinking, this brave little boy, whose life has become an inexplicable nightmare? There are my friends, their normal selves in their normal, relatively carefree lives, and here I am. My world turned upside down. My life completely changed, my days and nights plagued with sufferings of all shapes and sizes. For no rhyme or reason. How unfair it must seem. How incomprehensible.

Toby's parents are heroic. I have only seen them twice, but they seem to have a steady, defiant calm I don't think most people could muster under the circumstances. I hope with all my might that they will soon see better days, and they will play with Toby in the sunlight.

posted by judy mam on may 9

The Newspaper Article on Toby

2007-05-15T04:42:00.000-07:00

Stephen's sister, Anna, found the link in the Courier.

Toby Update

2007-05-15T04:33:00.000-07:00

just another day

today was supposed to be a low-impact day: no chemo, no long day scheduled at the hospital, no round-the-clock iv fluids or antibiotics attached to toby's central venous catheter by way of an awkward backpack filled with beeping pumps and bags of liquid. today was supposed to be a quick visit to the hospital and an afternoon spent enjoying our new digs on kane street.

i awoke early this morning in a state of anxiety about greg's departure. in addition to everything else he did this week (secure 2 sublets, drive us to the hospital or back each day, move our belongings, buy a new vacuum and deep clean the apartment, do laundry, take yoni to all his practices, buzz toby's hair, go to the yard sale, sit with us for hours during interminable hospital waits, and engage in hand-to-hand-combat with a renegade mouse) he managed to create an incredible bond with toby. we will miss him terribly.

so we arrived at mskcc at 10 am and waited in the iv room to get blood drawn from toby's "tubies." we had already told toby that this was the only thing on the agenda (reminder to self, NEVER make that mistake again). we were in a silly mood and toby happily submitted to tickling. it was only after the blood work that we remembered that today was monday, one of the dreaded bandage change days.

the nurses have recently migrated toby over to primapore bandages instead of the tegaderm bandages he has been wearing since mid-april, because his chest skin is severely irritated and in danger of breaking down due to frequent adhesive removals. (imagine a 5-inch square super-sticky "skin" applied and removed 3 times a week, right in the middle of your chest. the bandage needs to be peeled away with solvent to prevent skin tears and then, once the area is already nice and irritated, it requires cleaning with a burning cleanser for 30 seconds while applying pressure. suffice it to say that bandage changes are one of the worst aspects of being sick for toby.) the primapores are smaller and easier to remove, but leave a strong coating of very tacky residue that needs to be cleaned before the next bandage can be applied. as of today we're onto our third type of bandage, the tielle, which i hear costs $10 a piece. none of this was pleasant, but we made it through.

while we waited for toby's counts to come back from the lab, we played in the playroom with a remote control car. he was in a great mood, asking for food, relaxed, smiling. and then came the news that toby's white blood counts had dropped to .5 and his absolute neutrophil count was at zero. now officially neutropenic, toby needed to get an insuflon (an indwelling tube that is inserted under the skin of the thigh) and receive his first dose of gcsf, the shot that stimulates white blood cell production. stephen was at the pharmacy trying to get toby's oral medications flavored with cherry and watermelon since he has refused to take any medicine for the last week. and so i was left alone with toby and the knowledge that in just a few minutes he would have to undergo yet another painful, frightening and hated encounter.

and i think i quietly panicked. toby was hungry so we ate cheese and pickles and tomato soup and fries (amazing, really) and i explained that we needed to get the insuflon. recently we've been more straightforward with toby. he's not just "sick" anymore. we have told him that he has something called cancer, that he needs to get a medicine called chemo to get better. that the chemo medicine sometimes makes hair fall out, but that it will grow back. that he will sometimes have to be at the hospital to get better. i don't know if we're doing the right thing; there's no roadmap that i've found for how to explain this to your child. and today, i quietly explained that he was going to get the insuflon because he needed it to get well. he immediately tensed and asked why he had to get it again, for the second time (dear god, how can i ever explain that he'll need it many more times). but i think he would have been fine, had we not had to wait for another 30 minutes, during which time he got more and more anxious and overwhelmed. by the time stephen came back and we were called to the iv room, toby was completely hysterical, screaming "i don't want it" over and over again. he was so distressed that he threw up immediately after the insuflon was inserted. all those calories wasted.

but it was only 2:00 and the sun was shining and we were on our way back to brooklyn with a limp boy in the taxi. once we got back to kane street, toby regained some energy and went on an errand in his stroller with stephen. but then evening came and we needed to administer medicine and swab his mouth in preparation for the sores that fill his throat and tongue, and give the gcsf shot.

every time we begged him to take medicine, or restrained him while administering the G-shot, or made him scream while changing his bandage or held his arms while swabbing his mouth, i felt like i was violating my child and betraying his trust. mommy and daddy are supposed to comfort and protect. how must he feel never knowing exactly what's going to happen? are mommy and daddy going to hurt me again or can i finally hear a story and play with my cars?

i cried repeatedly today. and my heart broke a hundred times. as i lay in bed next to my exhausted child he whispered to me, "the G-shot will make my cancer go away and i don't like my medicine because it's watermelon not cherry and i want mouth sores because i like to eat cold popsicles in the morning and did you know that there's a B100 bus?" he kissed my hands and nuzzled me and thankfully, fell to sleep.

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i want to write about the amazing yard sale and the continuous outpouring of love and support that you have given us, but i'm just beat. hopefully tomorrow will be a quieter day and i will be able to let you know how grateful we are and how much your care means to us.

love, mooki and stephen

BEANSPROUTS: Benefit Music Concert for Toby

2007-05-14T04:29:00.000-07:00

Featuring

Randy Kaplan
Victor Lewis
Ryan Thornton
Special performance by
Hot Peas 'N Butter

THURSDAY, JUNE 7^th
5:30 to 7:00p.m.
Beansprouts/Park Slope United Methodist Church
6^th Avenue and 8^th Street, Brooklyn

$10 per ticket
tickets available at the Beansprouts office 453 6^th Avenue
pizza and drinks on sale starting at 5:00p.m. in the garden

Stephen and Mooki's New Address

2007-05-13T14:06:00.000-07:00

As of today (5/13/2007), Stephen and Mooki's new address is:

241 KANE ST
BROOKLYN NY 11231-4437

They will be at this address until 6/16.