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Max was a student at Kennebunkport School, ME, where he and (and my niece) Adison shared a comfort in knowing someone that understood some of their experiences in their own medical journeys. They both had feeding tubes, spent time in different hospitals, both patients at Boston Children’s Hospital and Maine Med. Max transitioned to 6th grade (Middle School) this past Fall and sometime later found out his cancer had returned and that he would need an alleogenic transplant, (the patient receives someone else’s cells) and spent the last few months preparing. His new “birthday” was May 15 when he still had a full head of hair and was not yet experiencing breadth of side effects from the whole body radiation cycle that was required. As is often true in life, things get worse before they get better. . . I’ve captured some of the last two days of postings to give you an idea of where he is at.
May 28, 2020
A portion of what his mom posted:
Max had an unrelated allogenic transplant. The radiation and chemo have left him with mucocitis, his mouth alone looks as if someone poured boiling water in it, and this extends through his entire digestive tract. It is incredibly painful, he can barely speak, he bleeds, he suctions himself. He is on adult size doses of dilaudid and ketamine continuously and is still in pain. He has not eaten for two weeks as a result. His anti rejection medications which include methotrexate (which has left Max very ill in the past) and cyclosporine have exacerbated this and also resulted in peripheral neuropathy. There are many more complications that could happen at any time.
May 29, 2020
Day +14 (day 21 of hospitalization)
It’s hard to imagine transplant day was two weeks ago, and how much the tables have turned. This continues to be really difficult. Emotionally and physically. Each day we go to bed thinking tomorrow will be better. Tomorrow WILL be better.
Received: June 1, 2020
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