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!!

Past couple of months

It has been a while since I posted anything about Isabelle. We completed her hospital stays and they were brutal. She was accidently overdosed on a drug called adovan. It was a "safe" dose, but caused her to collapse, urinate everywhere, and have hallucinations. I had to hold her down because she couldn't stand up and she thought I was some kind of monster, so she fought me for about 2 hours. She then started to settle down, but had hallucinations for about 12 hours total. The mistake was not caught by the pharmacist or the nurse. The dose she was given was a dose they would give someone they were trying to anesthetize. (They gave her the drug for nausia.) I also gave birth while in the hospital with Isabelle which was pretty convenient. In one of our "off" weeks I had to take my son, who was 2 weeks old at the time, to the same hospital for a pylorectomy. He had whats called pyloric stenosis. That is when the pyloric muscle thickens and doesn't allow food to pass from the stomach to the intestines. It was a very simple procedure and he recovered quickly.

The next phase we began had a series of going to the clinic 4 days a week. It was a real pain, but we made it through that too. Right before we were supposed to start the maintenance phase we had a big scare. They thought Isabelle relapsed because her blast count in her blood started to elevate. (They noticed this because we were admitted to the hospital because she had a fever) Luckily all was ok and they did a bone marrow to double check. We were in the hospital 10 days just waiting for her white blood cells to build back up. It was a pretty brutal stay, filled with emotional turmoil as we waited to see if the leukemia was back. Everyone was expecting the worst, so we were shocked that she didn't relapse. We were very grateful as well. We ended up in the hospital the day we were supposed to move and we had to reschedule her birthday party.

Use Physical Fitness to Improve Quality of Life with Cancer by David Haas