An Uneasy Triumph

Our youngest son has been in treatment for Acute Lymphocytic Leukemia for the last three years. Last night, on New Year’s Eve, he took his last dose of chemo. We now enter the wait and see phase. It is a great thing to be done with the chemo. But it is scary wondering whether he’ll relapse. And for him, there are other issues as well.

Prior to his diagnosis, he had muscle wasting, failure to grow (over the course of a year), digestive problems and coordination delays. At the age of 7 he could not push the pedals on a bike fast enough to keep the trainer wheels off the ground. He did not have enough strength in his legs to push them hard enough. He also had urinary incontinence, which he still has.

Once he started the chemo, the digestive problems, growth, and muscle problems improved. He is still uncoordinated, and in pull-ups. So it will be interesting to see what happens as he “normalizes” again in the new year.

His medical problems are one reason I have kept my business flexible. Because I never know when I’ll end up camping in the hospital. My business is all on my laptop now, so I can take it anywhere.

When he was first diagnosed, the only clue we had is that for about a week, his appetite just vanished, and he lost weight rapidly that week. It was so subtle, it really was a miracle we were able to catch it that early. So a possible relapse scares me, because I fear that I might miss it. If he does relapse, it will be a more aggressive cancer the next time around. So early detection is even more important. And Alex just does not show symptoms that are like other kids.

We have had it so easy, his treatment has been a walk in the park in comparison to most. He has had only three infections (two sinus, one tunneled port infection), and he had his appendix out in the middle of his treatment. I know that if we had to do this again, it would be a totally different picture. So I have to keep my business flexible.

This year has so many things that hold promise of great change.

UPDATE: Feb 15, 2010 – His muscle wasting is back – he is managing Crohn’s Disease with diet now. He has had two scares with blood counts that went off in the winter time, but is otherwise holding his own. We still expect a relapse, and live our life prepared for it – not paranoid, just wisely prepared.