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
Ed Clark, Christmas Guest
8 months ago