Interim Maintenance – the 3rd stage of treatment for Acute Lymphocytic Leukemia

Tuesday night Serenity seemed to be in a lot of pain. She was crying and hysterical but wouldn’t tell me what was wrong. I think it was her legs hurting but I still am not positive. Finally, we gave her some oxycodone and she quickly drifted off to sleep.

Wednesday morning we had another clinic visit. She was a little crabby all morning. We had to be in Salt Lake at 8:30 a.m…..no easy feat! But we made it only ten minutes late.

There is always a little craft for her to work on while we are waiting for our turn to be seen.

We saw a doctor and a nurse practitioner we hadn’t seen before. I really liked the nurse practitioner. Serenity has been complaining about her eyes a lot. Again, I don’t know whether they itch, or hurt, or what. They haven’t been red and she can still see, but they occasionally water and she rubs them a lot. The nurse practitioner prescribed some liquid Claritin in case it’s allergies. I have really bad seasonal allergies but I don’t think that it’s that (because of the lack of redness, mostly).

Serenity was accessed via her port, like always. She screamed to high heaven, like always. It was over fairly quickly, thank goodness. They drew blood and everything came back fine. We took her down for another lumbar puncture. It took her a very long time to wake up. Maybe she was making up for last time. But she did wake up finally and it didn’t take her too long to get back to her old sweet self.

The dr told us that our next phase, Interim Maintenance, will be a little different than we had expected. The Children’s Oncology Group recently changed their recommendation so instead of oral methotrexate, they will give it intravenously. I confess I’m relieved. We have a hard enough time getting her to take her medicine. Also a friend of ours has a child with ALL and his oral chemo has really done a number on his mouth. He went nearly a week without eating anything because it was so painful. So although it means more trips up to Primary Children’s, and more gas money and time, I am glad we will be doing the chemotherapy intravenously. Apparently this is how they used to do it, then they switched to oral delivery, but about a month ago switched back after concluding that delivering intravenously lessened the risk of relapse.

So we are finishing up this Consolidation stage, then she gets a week off from clinic visits, and then we move to Interim Maintenance and I think our visits come every 10 days, rather than once a week. We are making progress!