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