Interim Maintenance Phase

We started the interim maintenance phase yesterday.  We started the day off with a lumbar puncture at around 10:45 am.  Charlotte had to fast beforehand.  She had a banana at 2 am, and we could give her some water at 7 am.  She managed pretty well, asking for food a few times, but I managed to distract her. 

She just gets one new chemo drug this phase (along with a few others she has had before).  The new one she received is called high dose Methotrexate.  Even though it's called high dose, Charlotte's dose isn't too bad, some other patients can get more then double what Charlotte gets.  This chemo can be quite hard on the kidneys so it's given over 24 hours along with LOTS of fluids and she is closely monitored.  We are changing her soaked diapers every 2 hours which does not make for a good night sleep for Stefan, who does the night shifts.  The nurse described the Methotrexate to me as being like Raid.  Cancer cells LOVE folic acid, so this methotrexate disguises itself as folic acid and then basically nukes the cancer cells once they go after it - kinda cool for the science geeks out there. 

We don't know how long we will be in the hospital for - we have heard everything from 2 nights (Sunday) to Tuesday - your guess is as good as mine.  We will get to go home once the methotrexate is out of her system.  The phase calls for admittance to the hospital every 2 weeks for her chemo, but it's actually count dependent on when we come back in, so this phase could get stretched out to be quite a bit longer then the scheduled 63 days.

I'm a pretty proud mom - Charlotte is amazing - a very patient little trooper.  Last night as we left the clinic to head up to the ward - she started to get upset that we weren't going to the car, but calmed down and accepted the 'sleep over' at the hospital.  She's doing pretty good so far, the nausea probably won't hit her for another day or so.  The main side effect we have to be watchful for this phase is mouth sores which are very common with the methotrexate.

It's hard being back in the hospital.  The last time we were here was when she was diagnosed and it was a bit of a whirlwind.  I wasn't expecting it to be this hard, I guess a flashback to that week.  I'm looking forward to getting home.