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