Maintenance

Charlotte and I went to PCMC for a lumbar puncture and chemo. Today marks the start of MAINTENANCE! This means she only goes in monthly for IV chemo visits and lumbar punctures will only be every three months. The bulk of her chemo will be done by pill at home. We are looking forward to being done with chemo in November 2014. Yes, that's not a typo, it will be 2014 before she's done. 

I took off work to bring Charlotte in because I had questions for the doctor. It's impossible to ask multiple questions over the phone because it gets routed through the receptionist to the nurse, who sometimes has to go to the doctor. Then, when the nurse calls me back, I sometimes have a new follow-up question, which means another delay. I wanted to be sure I had a discussion with her doctor and get my questions cleared up. I was told that when Charlotte was on maintenance, she could go to school. I wanted to be sure she was cleared to go, and when precisely that would be - a few days more? another couple weeks? Also, the Rx for seizure meds to spray up her nose if Charlotte were to have another seizure expired after 6 months. I wanted to know if we still needed to carry the medication around with us, and if so, for how long? Dr. Maese, her resident, felt we were fine NOT refilling the Rx. He said he would consult with neuro, but he was certain that the seizure was from the medication, which Charlotte has since received without problem. We can stop carrying it about.

Then Dr. Maese pulled out the Rx to show me everything Charly will be taking. It's enough to make my head spin. Because they want to be very accurate with their measurements, her pill schedule is hilarious. As always, she is to continue taking an antibiotic on Mondays and Tuesdays twice a day. They have her back on a steroid for the first 5 days of every month. In the morning she is to take 2 pills from one bottle, and 1 from another. In the evening, she is to take 1 pill from each bottle. Then she is to take an oral chemo, Mercaptopurine, every day before bed. Monday thru Saturday she takes 1.5 pills. On Sunday, she takes 1 pill. She should not eat 1 hour before and 1 hour after she takes Mercaptopurine. Finally, every THURSDAY she is to take another chemo, Methotrexate, along with her Mercaptopurine, EXCEPT she's not to take it once a month on the Thursday she goes into the clinic for IV Chemo. Also, we are to give her an antacid the 5 days she's on the steroids, because it causes stomach issues.

Okay, if you've got that down, I'm impressed. Thankfully, they sent home a paper calendar with all this written down. They tell me after one cycle we'll be pros at it.

So, Charlotte is going to go back to school Monday. Hooray! We are going to work with the teacher about trying to keep her away from the snifflers and coughers. They have hand sanitizers ready to go. I strongly believe she will benefit socially from being back with her peers. She has continued to amaze me with how little the whole chemo has affected her. Her teacher has also commented about how energetic Charly has been when compared to the little girl she taught last year. Tuesday is her class field trip to the Zoo, so I thought I'd get the day off and take her separately from the group. That way if she's tired, we can leave early.

Naomi thinks we should have a party, and I think I agree. I know we still have a ways to go, but I'm told it's all downhill from here.