Long term maintenance

We are in the final phase of treatment for ALL and it is so hard for me to believe. Maintenance lasts approximately 2 years and she will be getting daily chemotherapy for all of that time. But here we are at the point that I could not even imagine 6 months ago.

Last week Serenity had another lumbar puncture where she went under anesthesia and had methotrexate injected into her spinal column. She did well and woke up quickly. At the time her ANC and platelets were high, and her hematocrit was bordering on low but not quite low enough to transfuse. (I think it was in the low 30’s, if I remember correctly.) The doctor said that with the drugs she is on they usually don’t see the kids’ numbers crash like they do during Delayed Intensification. However, Serenity will need a CBC in another week so that we know whether her hematocrit has dropped, and if so she will have another transfusion.

If things go well we only have to go to the clinic once a month now! This is wonderful because for the most part we have been going once a week (or more) and a clinic visit is an all day excursion.

She is taking 6MP again every day, dexamethasone (steroid) for 5 days out of the month, and gets oral methotrexate once a week except for during the week that she will get it in her spine. This cycle repeats over and over throughout maintenance.

Serenity is doing well. She is walking again, albeit slowly and carefully. She has stopped throwing up and only needs Zofran on some days. Her eyelashes and eyebrows are just starting to grow back in. She has lost some weight, but not too much. She hasn’t complained about any pain for several days now. She has been running a low fever today, so we are just praying we don’t end up in the hospital over the holidays.

I am nervous about taking her out all day tomorrow and having her around a lot of family members. I know that I don’t have to worry most likely. Her ANC was very good (for a cancer kid) when she had her blood draw last week. But the last time we did a big thing with extended family she ended up in the hospital that night and we stayed for over a week. So yes, I am a little anxious.