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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.


Posted by FriendofToby at 6:48 PM 11 comments: 
Surgery #2 is tomorrow Posted by FriendofToby at 8:59 PM 9 comments: 
Providing Meals – Frequently Asked Questions

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

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
Posted by FriendofToby at 11:23 AM No comments: 
HopStop and hot spot

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
Posted by FriendofToby at 8:20 PM 30 comments: 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
Posted by FriendofToby at 12:43 PM 14 comments: 
A Letter from Aunt Anna

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?

Posted by FriendofToby at 8:55 PM 4 comments: 

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.

Posted by FriendofToby at 1:04 PM 13 comments: 
Toby still needs blood and platelets.

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.

Posted by FriendofToby at 6:26 AM 2 comments: 
Toby, August 1st

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.

Posted by FriendofToby at 8:33 PM 5 comments: