Maintenance Phase

We started the maintenance phase on the 14th. It began with a spinal and some Vin-Cristine. Once again her back was pretty much butchered, but that is the way it has been the past 6 times. She is under a light anesthetic and they problems getting her body to relax enough to gain access to the spine. Each spinal is filled with screams, tears, and stress now. The only consolation is that Isabelle doesn't remember the ordeal at all. She will just instantly snap into reality and doesn't know why she is even crying.

At the begining of this phase Isabelle was on steroids the first 5 days. Isabelle + steroids = a very angry, hungry girl. She acts so different when she is on these medicines. The good thing is now we only have to go to the clinic once a month. Every night for the next 2 years she has to take 6 MP chemo pill. Has to be given at least an hour after eating and you can't eat for at least an hour after you take the pill as well. The later it is given the more effective it is. She also gets 5 pills of methotrexate every Tuesday. (That is a type of chemo as well.)

Isabelle has had many highs and lows with this phase so far. Some days she gets very tired, other days she is fine. She also has lots of mood swings and emotional outbursts. It is hard to tell at times if she is misbehaving because she is used to getting special treatment or if it is the medicine at times. She totally tries to use it to her advantage as well. There are obvious limits and boundaries that she knows she can not cross when she isn't feeling well, but there is a lot of gray area. For example, she gets nautious and throws up from the chemo. Sometimes she will say something makes her sick, but she just doesn't like it. Lots of gray area and I feel like I'm always guessing. I have to put my foot down a lot of times with other people.  People will just give her things like candy without thinking to ask if she can have it.

Anyways, 2 years of this maintenance phase and after that she is considered cured if in 5 years she doesn't relapse. She goes in next month for a spinal and more Vin-Cristine. From here on out, we have no restrictions. If she has a fever then we have to go to the hospital/clinic everyday that she has it for antibiotics, but she only has to be admitted if her counts are under 500. General rule, stay away from sick people!!