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.
love, mooki and stephen
Ed Clark, Christmas Guest
9 months ago