Well Abc did not air Isabelle much to our disappointment. She just kept getting bumped. They even had a commercial with her on it, but no air time. Isabelle was sick with a fever last month and was on a chemo hold the entire time. We flirted with having to be hospitalized between having low counts no fever and then high counts fever. We never had to go, which was great. Since November she has had over 2 months worth of chemo holds. In the maintenance phase, if you lose chemo time then you do not make it up. Its very scary knowing she will never get that time back. It makes me wonder if this will affect her overall recovery and if she will be more likely to relapse because of this. I would not worry about relapse as much if we didn't have our big scare in November. This experience will forever leave me paranoid.
Our monthly spinal taps have been moved to the hospital, which is good and bad. The good thing is Isabelle is fully anesthetized. The bad thing is it takes a lot longer. Her next tap is scheduled in 2 weeks and her appointment isn't until 1:30. That is all day with no food or water. We have been going to the clinic every 2 weeks since she has been having a hard time keeping counts up. The doctors lowered her chemo dose 2 weeks ago. They are wanting to go back up on it slowly.
Isabelle has been sick for the past week with a stomach virus. She just stopped having diarrhea, but is not herself. She is sleeping quite a bit, is cranky, and has lost weight. When we went to the clinic today, her counts were still great.
Wednesday, April 18, 2012
Friday, February 10, 2012
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Thursday, December 15, 2011
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Monday, November 28, 2011
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!!
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.
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.
Tuesday, July 26, 2011
High Dose Methatrexate Hospitalizations
This next phase of Isabelle's treatment she has to be hospitalized. Since the last week of June, she has been going to the hospital every other week for about a week at a time to get treatment.
This Monday Isabelle had a procedure scheduled at 1030 am. I was about 2 miles from the clinic when I got pulled over and given a ticket for having windows that were tinted too dark. What the officer said she could "do for me" was drop all the charges if I corrected the problem by the time I was scheduled to go to court. I will still have to pay court fees that will probably be higher than the ticket anyway so it won't be worth it. On top of that I don't have time for it. I don't understand why they wouldn't tell us during our VA safety inspection that our tints were illegal. A warning would have been nice, but it was the start to a crappy day.
Isabelle's procedure did not start until 12:20. The procedure went horribly. The doctor could not get the needle into her spine because her body was too tense. To top it off, Isabelle felt it and was screaming her head off. The doctor gave her more of her "sleepy" meds, but it didn't seem to help. The nurse also curled Isabelle's knees into her chest to try to help make her back relax so that the doctor could get the needle in. She must have stuck her about 7 different times and they changed needles. I had to help hold Isabelles arms down, so that she couldn't touch her back and contaminate it. Finally they got the chemo in her spine, with what seemed like hours but only was about 10 minutes. She screamed and cried for about 20 minutes after the procedure was over, but did not seem to remember any of it once she recovered.
After her horrid procedure she recieved an IV drip of medicine that prevents prophylaxis. After her drip she then had a reaction to it and started itching everywhere. They gave her benedryl to counteract the reaction and she did well with it. Then she received VinChristine through an IV push. When we were done with that we headed over to the hospital to be admitted. She didn't get her high dose meth. chemo started until almost midnight.
The way the high dose methatrexate works is Isabelle has to be prehydrated for about 6 hours. Then she gets this chemo for 24 hours. After the 24 hours is up she is then given more fluids. She is not allowed to leave until she has less than .1 % of chemo in her blood. This can take up to a week for her body to clear it. She has been averaging about 4-5 days to clear the chemo.
7/26/2011 - Isabelle has had extreme back pain all day. At one point when I put her on the potty, she could not even hold herself up. It was very complicated trying to wipe her/pull up her clothes while she couldn't even stand. She has been getting tylenol and codeine between it to help control the pain. She has had pain due to the procedure that she had yesterday. It was nice that the art therapist came by today to do some crafts with Isabelle while she was in bed. Abel came by this evening and is staying the night with her on his 2 days off, so I can be home with the new baby. They are going to test Isabelles blood at midnight to see where her chemo levels are after it is done running.
This Monday Isabelle had a procedure scheduled at 1030 am. I was about 2 miles from the clinic when I got pulled over and given a ticket for having windows that were tinted too dark. What the officer said she could "do for me" was drop all the charges if I corrected the problem by the time I was scheduled to go to court. I will still have to pay court fees that will probably be higher than the ticket anyway so it won't be worth it. On top of that I don't have time for it. I don't understand why they wouldn't tell us during our VA safety inspection that our tints were illegal. A warning would have been nice, but it was the start to a crappy day.
Isabelle's procedure did not start until 12:20. The procedure went horribly. The doctor could not get the needle into her spine because her body was too tense. To top it off, Isabelle felt it and was screaming her head off. The doctor gave her more of her "sleepy" meds, but it didn't seem to help. The nurse also curled Isabelle's knees into her chest to try to help make her back relax so that the doctor could get the needle in. She must have stuck her about 7 different times and they changed needles. I had to help hold Isabelles arms down, so that she couldn't touch her back and contaminate it. Finally they got the chemo in her spine, with what seemed like hours but only was about 10 minutes. She screamed and cried for about 20 minutes after the procedure was over, but did not seem to remember any of it once she recovered.
After her horrid procedure she recieved an IV drip of medicine that prevents prophylaxis. After her drip she then had a reaction to it and started itching everywhere. They gave her benedryl to counteract the reaction and she did well with it. Then she received VinChristine through an IV push. When we were done with that we headed over to the hospital to be admitted. She didn't get her high dose meth. chemo started until almost midnight.
The way the high dose methatrexate works is Isabelle has to be prehydrated for about 6 hours. Then she gets this chemo for 24 hours. After the 24 hours is up she is then given more fluids. She is not allowed to leave until she has less than .1 % of chemo in her blood. This can take up to a week for her body to clear it. She has been averaging about 4-5 days to clear the chemo.
7/26/2011 - Isabelle has had extreme back pain all day. At one point when I put her on the potty, she could not even hold herself up. It was very complicated trying to wipe her/pull up her clothes while she couldn't even stand. She has been getting tylenol and codeine between it to help control the pain. She has had pain due to the procedure that she had yesterday. It was nice that the art therapist came by today to do some crafts with Isabelle while she was in bed. Abel came by this evening and is staying the night with her on his 2 days off, so I can be home with the new baby. They are going to test Isabelles blood at midnight to see where her chemo levels are after it is done running.
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