Prophase and Induction are the beginning phases of treatment for ALL (Acute Lymphoblastic Leukemia). As soon as Sam was admitted to CHAM, he began the Prednisone Prophase which is a three day phase which immediately begins to reduce the amount of Leukemia in his body. Two drugs are given: Prednisone and Cytarabine, the latter is given in the spinal fluid to begin attacking any CNS leukemia. We heaved a huge sigh of relief when we were told Sammy did not have ALL presenting in his spinal fluid. Although we were scared out our wits..this phase was relatively easy. All we had to do was come to grips with the diagnosis!
Remission Induction lasts 4 weeks and Thursday, October 15th marks the last day of it. The purpose of this phase is to kill all detectable leukemia cells. The protocol consists of seven drugs, all of which are toxic and cause varying degrees of side effects. Sam, I am happy to report, did very well with the side affects...give or take a couple of vomits and a night of excruciating agony with leg, neck and back pain. Believe me...that is getting off lightly :)
Prednisone continues throughout Induction orally twice a day. This has been a challenge as Sammy developed an immediate aversion to medicine-by-mouth after being pinned down by six nurses (a seventh was needed as he threw them off)! We managed eventually to have him take about 12ml of liquids by adding chocolate syrup...an idea of Heather's, one of the clinic nurse practitioners. During the first 3 weeks, Sam took about 1.5 hours to sip down the concoction. This week he can do it in about 15 minutes, lying down, with plenty of breaks. He knows what works for him. He announced yesterday that he is no longer afraid of the medicine so long as it is chocolate.
The rest of the drug-fest includes Vincrisine...the one that makes the hair fall out and constipation; Doxorubicin, more hair loss, nausea, mouth sores; Asparaginase, which could have led to the pain on previously mentioned night of horrors, Hydrocortisone, another steroid; Methotrexate, one I fear; and Cytarabine which severely lowers blood counts (as they all do really).
The hospital provides a road map of when these drugs are taken and possible side effects. Sometimes I truly believe ignorance is bliss as agreeing to these poisons goes against all that parents believe in....I was ORGANIC for goodness sake! As I said, we have been lucky so far with the effects as I have read about much worse.
Sammy has come so far in this life-changing month. He fears sticky tape and bandages more than chemo, knows he has a tube in his chest (central line), and is fine with that now. He cannot stand the idea of long waits in the clinic and hates the nurses, but likes Kim, the Child Life Specialist who befriended him and helped him face so much early on. Most amazing is his ability to ask about his fears. We are still working on answering him in the best way, but we promised to be as honest as we could...leaving out gory details or procedures is not lying, and helping him become aware that this is long-term.
Next we face Thursday...the final Induction Phase spinal and bone-marrow to see if he has reached remission. The next phase scares me so much, but we will take it a day at a time.
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