We are currently in Cycle 6 of Maintenance, out of 11 or 12 (but I’ll get into that more later on). Just within this cycle, Charlie has had two adjustments in the dosages of his medications. During the first month of Cycle 6 the dosage of his daily 6MP medication was increased 25%. This change was based on Charlie’s increased Body Surface Area (BSA). He is, after all, a growing boy. For the second month of Cycle 6, Charlie’s methotrexate and steroid dosages were increased based on elevated ANC levels. The plan calls for Charlie’s ANC to stay between 750 and 1500 and if his counts are high for 3 month in a row, his medications are adjusted to get him within that range. He has done better than we expected with the increased dosages, though we have noticed some changes. He tends to get grumpier a little sooner in his steroid cycle and his bad mood sticks around a little longer, but we still get two good weeks out of every four typically.
Tuesday was the start of the 3rd month of Cycle 6 and his ANC was 722, which means the increased dosages are doing their job and keeping him closer to the appropriate range. While it is lower than the desirable 750, they don’t readjust medications unless he gets below 500. However, for us, the lower ANC means increased germ awareness and more diligent hygiene, especially with Daniel and Ana.
Charlie’s accesses continue to be a challenge though he is a lot better than he used to be. I can get him to settle down and sit still eventually, but it usually takes a couple of iterations, restarting the whole process after having to take him out of the room to calm him down. He does finally get the job done but it is exhausting. After his access on Tuesday Charlie fell asleep in my lap. That is something he hasn’t done in a long time.
The monotony that is this Maintenance phase has got me pondering what life is going to be like after Charlie completes his chemo. I expect I will have the nagging feeling that I am forgetting something after I don’t have to fix up his nightly chemo-cocktails before bed. How long will that take to go away? How will Charlie react when he doesn’t have to wake up to take said cocktails? I am also very curious to see how much different his disposition is going to be after the medications get out of his system. Sally said she is always surprised to hear the comments parents make after their kids finish up Maintenance. For the doctors and nurses, the kids in Maintenance are pretty normal, happy-go-lucky kids compared to all the other kids they see. But she says the parents always comment on much easier it is to be around their post-Maintenance kids and what a joy it is to “have them back”. We are very much looking forward to that moment.
Apart from the lack of daily medications, post-Maintenance life will be a pretty familiar routine. Charlie will still have his monthly visits for while. They will gradually reduce down to quarterly, semi-annual and finally annual visits until he is 18 or 21 or something like that. During Tuesday’s appointment, I wanted to find out how many more cycles Charlie has to complete in Maintenance. What I learned was that Charlie’s end date will be exactly 3 years to the day that he started Interim Maintenance, which was on June 9th, 2010. No matter where we are in his last cycle, if all goes as planned Charlie will end Maintenance on June 9th, 2013.
While it is probably a little too early to start a count-down right now, you should probably expect to see another ticker in the upper left hand corner of this blog on June 9th, 2012, 128 days from now. Not that I’m counting or anything . . .
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| June 9th 2013 here I come! |
