Death and Cookies

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

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

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

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!

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

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

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

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.

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.

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

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

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

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

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

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

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...

Ambivalence

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