Tim's mother, Judy, corresponded with me almost weekly from September, 1996 until Tim's death. During this time, I got to know Tim through the eyes of his mother. Thanks to Judy, I received a picture of a wonderful young man, full of life, who fought his disease with a particular sense of abandon. Tim danced after chemo, partied after surgery, and clearly lived each day to the fullest. His untimely passing, caused by complications from a bone marrow transplant, saddened many. The account of Tim's medical history that follows was written using Judy's old e-mails as the main source. In this history, I have tried to give the reader a sense of Tim's spirit, as well as an account of his various treatments. Finally, Judy's comments on my draft helped round out the details of Tim's journey.
At the time of his diagnosis, Tim had multiple metastatic sites including: liver, spleen, pancreas, adrenals, a pelvic mass, cardinal nodes, mesenteric nodes, thoracic nodes, bone mets and, most unusually, bone marrow involvement. He could not lie on his side or stomach and required 60mg of long acting morphine every eight hours and an IV push in between the oral doses. Tim also had a long history (seven years) of Common Variable Immuno-deficiency for which he received IVIgG.
He began Dr. Kushner's protocol (See Kushner et al, 1996) at the Children's Hospital of Pittsburgh around the beginning of October, 1996. Tim experienced major neutropenia after the first treatment of adriamycin, vincristine, and cytoxin and nearly went into hypovolemic shock. He required substantial blood support (six units of packed red blood cells and 26 units of platelets).
Despite these difficulties, Tim showed a definite response after two cycles of chemo. He was now able to lie on his side and stomach and no longer required morphine. By the time Tim completed five of seven planned chemo cycles, his masses were shrinking. Shortly thereafter, his bone scan became nearly normal. (By March his bone scan improved to completely normal) He required some sort of blood support during the majority, if not for all, of these chemo cycles. He also experienced several more episodes of neutropenia.
He has this agenda for December.....Christmas dance at school, gotta date, must be home. Christmas, must be home. December 31, birthday must be home. Around this plan we must fit 2 chemo sessions, a predictable "crash" with hospitalization and MORE stem cell harvest because we didn't get enough in these 7 sessions. Somehow I think it may not work out but the kid is an eternal optimist and if anyone can convince the Docs it is he.
In the third week of March, 1997, doctors made a decision to perform debulking surgery prior to his stem cell transplant. Tim's bone scan was now normal, but small masses remained in his abdomen, liver, and pelvis.
Conditioning for the stem cell transplant began on April 14th. This time the chemicals of choice were thiotepa and carboplatin, given over a period of six days. The transplant took place on the 23rd.
Tim's playfulness surfaced even under the duress of this strenuous treatment. Judy described a late night incident to me in a phone conversation. One night Tim became hungry and mother and son left the transplant unit to go down to the cafeteria. It seems that Judy is not especially comfortable in an elevator. Preying on his mother's anxiety, Tim began to jump up and down in the elevator. He not only succeeded in scaring his mom, he also managed to get the elevator stuck between floors!
Sadly, Tim soon developed a severe infection with multi organ failure. He had cardiac and kidney complications previously undocumented in patients undergoing Kushner's protocol. Tim passed away at 7:30AM on April 30, 1997. He was seventeen years old.
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