Well maintenance isn't all it's cracked up to be. I am not sure what I was expecting, but her multiple drugs she takes on a regular basis and the fact that one of them is steroids has proven to have some challenges. The moods, cravings and appetite she has while on the steroids, even though its only 5 days a month - is crazy!! And to think this is going to continue for the next 2 years!! I can't imagine what it will be like once she goes to school in September - the poor teacher. But although I complain about all of this, I have to say that my little fighter is doing well. Her counts continue to be where they should be, her hair is growing back ( blonder than before), she continues to grow and put on some healthy weight. We know alot of other little fighters out there who are going through much tougher times than Aly, so it sounds so strange to say, however I am grateful for the type of cancer she has and the fact that we have made it into maintenance with very few serious issues. Obviously I would prefer that she not have cancer at all, and when she was first diagnosed and I was told that she had the "good" leukemia - I was furious that anyone could call any form of cancer the "good" one ..... but now I get it.
We have however, had one hurdle while in maintenance - - Aly's port. I guess you could say that her port has been trouble since day one. The only times she has been admitted to KGH was for blood infections. Doctors could not truly pinpoint the issue back to her central line, however it was the only thing to explain why she lost the ability to move her arms back in the summer. She always complained that it hurt when they accessed her port, and although everyone said that it doesn't hurt - - maybe it did. She was always very protective of her port, would cover it with her hands often and at night while she slept she would also have her hand on it. About a month ago after her nurse removed her gripper following treatment, some icky fluids leaked from her port ( sorry for the details) so a swab was done and extra blood work was done to see if her blood was growing any bacteria. Results for her blood came back negative, but there did seem to be a pocket infection surrounding her port. As a result we were sent home with some oral antibiotics to add to her list of meds to take. The infection appeared to go away and Aly never developed a fever throughout this whole time. It wasn't until our last clinic visit (March 20th) where she receive IV chemo ( vincristine) that the same issue happened ( and I am always the one that seems to notice it first). Just as the gripper was being removed from her, more yuckiness oozed from her port. By this time this gripper was out and the nurse went to get the Doctor as Aly had a total meltdown in my lap. Its tough to even touch her chest where the port is, but at this moment I was holding her down while the nurse attempted to squeeze out any access "stuff". Once the Dr arrived a decision was quickly made - - IV antibiotics would start immediately, we would be admitted and her port would be removed asap. So we had to put the gripper back in for the time being and the nurses wanted to freeze the site again before accessing, but I figured since she was already in a state, we might as well just do it now so that she could hopefully relax a bit with no more pokes. We were placed in a temporary room in the clinic and the antibiotics ( vancomycin) was started immediately. At this time I went to get a coffee and attended a meeting at the hospital that I had with the pediatric oncology team ( I am the parent rep) while Granny stayed with Aly. Just as our meeting was about to end, Aly's doctor was paged and she came over to me and said Aly is reacting to the meds she is getting. She seemed rather calm about it and said she would be fine, but regardless I rushed back to the clinic to find Aly on her bed, playing on her ipod with a face the colour of a cherry! I guess it is a normal reaction and all they have to do is slow down the infusion of the anitbiotics. We eventually got to go upstairs to our room!
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