This past week has been a rough one for Isabelle. She has felt very sick to her stomach and has barely eaten anything. Today she had 1 string cheese, 2 fruit crisp bars which were 100 calories total, 1 small container of applesauce, and a croissant. She has also been throwing up a little bit too. She has had zero energy and has been very cranky.
At around 4 we noticed she had a fever, so off to the hospital we went! It was a miserable drive and it rained the entire trip. Once we got there we were brought back to isolation which was nice, especially since half the time they have us sitting out by the sick people for at least 10 minutes. About 6-7 nurses were in the room with us because they couldn't figure out what to do with her since she is a "hemoc" patient. I hate the fact that we have to use the ER because they dont deal with cancer patients that often and they aren't very experienced. All of the nurses were babbling back and forth trying to figure out what to do. Between the 6-7 of them, they finally got a plan going and were able to get Isabelle's tube in. A child life specialist was there entertaining Isabelle, which would have been nice had she not been sick. She washed her hands and wore a mask, but it really didn't make me feel that much better. They hooked her up to antibiotics and we waited there. They did lab work, but our nurse did not know how to tell if her counts were good. That was pretty frustrating. She didn't try to figure it out, she was just like I think they look ok. We had no call button in our room, so I had to leave to find our nurse whenever we needed something. The nurse seemed pretty bothered everytime I asked her for something as if I wanted to be at the hospital. At least she is getting paid to be there!
Isabelle was hungry so the nurse brought her crackers. Isabelle threw up it all up and then some. The nurse was no help and the pile of vomit on the floor sat there for well over 45 minutes. She said she called maintenance, but she could have at least put a towel on the floor or something. Isabelle accidently stepped in it once and it was between my chair and her bed. It smelt so bad in the room. I asked a couple times and finally asked another nurse. I told her the puke had been there for a long time and my daughter was already sick to her stomach without having to smell her vomit in a closed room. Finally someone came in and cleaned up the mess.
A different nurse had checked Isabelle out and said she had an ear infection. When the doctor came in she didn't even double check! While she was at the hospital her fever was 102 degrees. It took an hour before we got tylenol because the nurse forgot to put the order in. I was very relieved when we were released. We have to go to the clinic tomorrow for more antibiotics, but at least we were able to go home. I got home at 11 o'clock. Isabelle is exhausted and fell right to sleep. Hopefully once her ear infection is treated she will feel back to normal. Please excuse any run on sentences or crazy grammar I am exhausted. Unfortunately, I still have to give Isabelle pills in a half an hour, so must stay awake!
Sunday, April 22, 2012
Wednesday, April 18, 2012
The past couple of months
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.
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.
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.
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