"It will be a great day when our schools (and pediatric cancer research) get all the money they need and the air force has to hold a bake sale to buy a bomber." -adapted from Women’s International League for Peace and Freedom
Next week neuroblastoma parents, together with more than 200 volunteers, will begin baking 96,000 gourmet cookies in an attempt to fund new treatments for our children. You might find it hard to believe that no government or private foundation funds are available for this. You probably find it odd that parents need to sell cookies to save their children's lives. The reality is that the government classifies neuroblastoma as an "orphan" disease, one with fewer than 200,000 affected individuals. Diseases with a relatively small patient population are at a significant disadvantage in the competition for resources. So even though there are promising treatments in the pipeline at Memorial Sloan-Kettering, they can't go into the clinical trial phase without funds. And that's why we need you to buy cookies.
The delicious cookies come from renowned cookbook author Sally Sampson's recipes. The ingredients are all natural and every order will be beautifully gift-boxed. Best of all, 95% of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated, from ingredients to kitchen facilities and cold storage.
We know that many of you are about to begin the tireless search for the perfect holiday gift and we hope that you'll take advantage of this opportunity to give a gift that not only tastes good but feels good.
*stephen *an amazing community of family, friends and strangers who have come together to feed, strengthen and care for us over the last seven months *my brother, yoram, whose gentle, knowledgeable and loving presence continues to make a daily difference in our lives. he listens, guides, and explains with total dedication and love. he faithfully treks to brooklyn, leaving behind his own family and job to be with us + wash our dishes + parent yoni + run interference with doctors. we call him at all hours of the day and night. we badger him with constant, panicky questions. when i can't put two words together, he writes phenomenal posts for the blog. we can't imagine going through this nightmare without him and we don't think he will ever know what a huge support he is. *beansprouts *our older son yoni, who has been through so much, and is still a straight-A student, a loving brother and fantastic human being *park slope parents *the incredible adults who make playdates with toby, bringing music, stories, activities and normalcy *the dedicated and loving team of nurses, doctors and staff at mskcc *my parents yochi + shabtai, uncle greg, merci, aunt anna, cousin catherine and aunt betsy, who have all come to stay with us under incredibly difficult circumstances *psjc *the photographers who orchestrated the art of giving fundraiser *the countless generous souls who have donated blood, platelets and money *a great, understanding workplace *temple court and prospect park *the parents of children fighting neuroblastoma, who have inspired me with their courage and hope
and most of all i am so thankful for toby... that he is alive, and that i have the opportunity to watch, learn and laugh with him. toby my sweet boy, you make my life beautiful.
When Toby was eight days old, my father held him during the ritual of circumcision. We thought it would be a great honor, and my father readily agreed, but after the ceremony he told me that he was terribly shaken by the experience. I don’t remember the actual cut (I wasn’t in the room), but I do remember Toby’s awful, innocent screams, which propelled me into the kitchen, where I gave him my pinky finger to suck, an abysmal but temporary comfort. Stephen was crying in the bathroom and my father was completely white. A few minutes later we regained some equilibrium. Our family and friends wrapped us in embraces, I nursed Toby to sleep, and we felt the magnitude of welcoming our new baby into history and community.
But my father was still disturbed. Later that evening we spoke about pain, and whether it was possible that Toby would remember the trauma associated with circumcision. My father felt strongly that there had to be some remnant of pain hardwired into Toby’s synapses. The experience was too intense to simply slip away.
Circumcision seems like a walk in the park compared to last week. And after holding my writhing child for five days of 3F8 treatments, I wonder about pain and hope it’s not permanently etched into Toby’s pathways.
3F8 is a mouse derived monoclonal antibody that is injected into the bloodstream where it finds neuroblastoma cells, attaches to them and then signals the patient’s own white blood cells to kill the neuroblastoma. The white cells are boosted into “killer” cells through daily injections of GM-CSF. With time, as Toby’s own immune system recovers from chemo and becomes stronger, the 3F8 treatments may help his body learn to fight tumors on its own. The aim is to give repeated 3F8s for up to two years, on a cycle of one week on, two to three weeks off.
The main side effect of 3F8 is pain because it also attaches to a marker on nerve cells. And the pain is excruciating. I can barely describe it. And that’s the real reason why I haven’t been able to write in two weeks. All I wanted to do by Friday was crawl into a dark, quiet place, and not relive the experience by putting pain into words.
Before the infusion started Toby was premedicated to ward off fever, pain, and possible allergic reactions. He was unaware of what was about to happen, and lay on the bed watching tv. After about 15 minutes he started fidgeting and twitching, as if he couldn’t find a comfortable position. And in another 5 minutes the full force of pain bore down on him. The room was filled with medical personnel, who monitored Toby’s reactions to the infusion. Oxygen was started, a nebulizer was used to open his airways and pain “rescues” were pushed into his bloodstream every 5-7 minutes. His pulse climbed to 187. Over the course of 50 minutes, we went through boxes of hot and cold packs which we rubbed on different parts of Toby’s body where the pain was localized, mainly in the abdomen. We tried to soothe him, to hold him, to dim the lights and follow his lead, but he truly was alone in the land of pain. And then, exhausted, covered with hives and drenched with sweat, Toby fell asleep.
By day 3 we began to find a coping rhythm, although the pain was even more difficult to observe. Toby used fewer rescues and we crawled into the bed with him for the duration of the infusion. He needed to grip onto my shoulder during the worst waves. On day 4, he began keeping track of his blood oxygen numbers and refused oxygen and the nebulizer. I have no idea how it was possible for Toby to do this… imagine being in the throes of transitional labor and telling the obstetrician that you would like to discuss apgar scores. Toby also stopped screaming and requested that we not talk to him. He seemed to know what would happen and focused all his energy on internalizing the pain and taking deep breaths. Incredible, really. Other NB parents told us that the week would be very difficult, but get easier each day. I actually found the reverse to be true. The pain was shocking on day 1, but knowing that it would return each day was almost more than I could bear. Also, contrary to what the doctors told us, the heavy narcotics did not have an amnesiac effect; on days 3 and 4 Toby wanted to know exactly when the infusion would start, and he ordered us to get the hot packs ready for his tummy, the cold packs for his head.
The afternoons and evenings were a complete blur. Toby was completely knocked out yet restless. He couldn’t pee or walk, much less eat or drink. The soles of his feet and his entire groin area were intensely sensitive and he found it difficult to stand. And then morning would come, we would head to the hospital, give him the GM shot, watch as he ate a big breakfast, and wait for the pain to start.
By Sunday Toby had recovered enough to make a trip with me to the Staten Island Children’s museum and the Prospect Park Zoo. We had a fabulous day. And on Monday, he was permanently tattooed in 7 spots, to help guide the radiologists during radiation treatment. We are now in the middle of 24 rounds of radiation to the neck and abdomen.
I’m sorry it has taken me so long to post. Living with neuroblastoma is so singular, isolating and overwhelming, that I feel like my words don’t even come close to describing what is really going on in Toby’s life. We can’t thank you enough for checking in on us, sending supportive emails, delivering food, visiting if you have a chance.
The painful reality of neuroblastoma is that more than 50% of children will relapse, and the survival rate for children diagnosed with high risk disease like Toby is in the neighborhood of 20%. We have joined with other NB parents to act against these terrible odds. The Band of Parents, together with loads of volunteers, is making and selling gourmet cookies to raise money for research, development and treatment at Memorial Sloan-Kettering. The delicious recipes are from renowned cookbook author Sally Sampson’s recently released cookbook, Cookies. The cookies are $30 a dozen and almost all of the proceeds will go directly to research at MSKCC. You can purchase online at www.cookiesforkidscancer.org. We hope you’ll buy lots of these delicious cookies and ensure that Toby and all of the other children fighting neuroblastoma receive the future treatment options they so desperately need.
Today is the NYC Marathon. Three of Toby’s docs will be running and we plan to cheer for them as they approach mile 7 in Park Slope. Toby stayed up late yesterday, painting hand-lettered signs with each of their names.
I’m a huge marathon fan despite a complete lack of athleticism. I don’t quite understand the willingness to endure such physical punishment, but I love the enormity of the event. I am completely in awe of the strength and stamina required to run 26 miles. And I’m inspired and amazed by the runners.
Toby has been running the marathon each day, for more than 6 months. In that amount of time, he has had more chemo than most adult cancer patients (waaaaayyy more than Lance Armstrong), he has undergone 2 life-threatening surgeries, 14 rounds of radiation, countless transfusions, daily painful injections, monthly radioactive scans, disgusting medicines, and a complete upheaval of his life. He does not go to school. He has hearing loss. He grinds his teeth during sleep. He tires easily. And every day is a battle.
By his 4th birthday Toby had learned how to swallow pills, how to lay perfectly still for 90 minute full-body scans, how to restrain the urge to vomit until mom or dad locates the basin, how to don a mask and gloves during neutropenia, how to best position his leg when receiving the burning injections of “G,” how to walk on his toes when his heels are numb from the neuropathic effects of chemo, how to request that the anesthesiologist inject propyphol slowly before a procedure, how to still find joy and laughter and beauty even when restrained to an IV pole, with constant nausea, diarrhea and vomiting.
Toby runs the marathon with a remarkable group of children who suffer for months and years at a time. They are the faces behind the statistics and their stories tear my heart out again and again. Many of them have died, leaving behind aching families and pain that will never go away. I wish that Congress or Oprah or the drug companies would find these kids inspiring. It is simply unbelievable that only 5% of the total National Cancer Institute budget is allocated for pediatric cancer research and development. And to put it in even greater perspective, ALL of cancer research funding is equivalent to what is spent in Iraq in just a few days. Children are dying, and the world turns away.
Tomorrow the New York Times will devote pages and pages to the marathon. I usually love to read this kind of news, but I don’t think I’ll have a chance.
Tomorrow is the day we start 3f8 antibody therapy. It will be the most painful experience in Toby’s cancer marathon to date. The 3f8 rooms are where the screams come from, screams so prolonged and painful that it hard for an observer not to break into tears. The pain is so intense that no amount of pain medication can effectively block it. Toby will most likely be given heavy narcotics (3 times more powerful than morphine), but everyone has warned us to expect a very, very difficult day. And we will repeat 3f8s on Tuesday, Wednesday, Thursday and Friday.
Toby will endure, as he has until now. Please keep him and all the other children battling cancer in your thoughts.
Toby will be starting 3f8 antibody treatment on monday. After reviewing the scans with radiology, Dr. Kushner feels that they haven't changed since august and he is eager to forge ahead with antibodies and radiation. Toby still has disease in the humerus and 1 or 2 vertebral bodies, but Kushner feels that it is probably marrow, not boney. The MRI of the liver was clean. All four bone marrow biopsies are negative, as are the aspirates. While an area in the mid-abdomen did light up, the NB team feels that it is due to post-operative changes and not tumor re-growth. We had a very, very scary week and while there is still ambiguity, we will tolerate it. I will update again with the details, but wanted everyone to know that we are ok. love, mooki and stephen