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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.
Tuesday, June 14, 2011
6/12/2011 Hosptialized once again
6/11/2011 - Isabelle was not feeling well and had a fever. The doctor on call said to bring her to the er and they would give her some antibiotics and check her blood counts. Since her white blood counts were 1500 on Tuesday and they seemingly were going up, they expected her to be in and out. Abel took her since she was in a good mood and it was supposed to be a quick thing. When he got to the er side they checked her blood counts and started her on the antibiotics. As it turns out, her white blood count dropped to 50, so she had to be admitted.
While in the er, it took them 2 tries to access her port. (She felt it and it hurt, normally she doesn't feel a thing) She became so distraught that she threw up all over Abel and the nurse. The nurse got Abel some scrubs to wear. The physician wanted to give Isabelle medicine for the nausiousness that is NOT supposed to be taken with the nausious medicine that shes on. Abel let him know that she couldn't take it and why. Being on the er side is so annoying because they don't specialize in Isabelle's condition, so they really don't know what to do with her. They had it on her med chart what she was taking and they should have known that it couldn't be taken with that other medicine. If Abel hadn't spoken up, they would have possibly caused her damage.
They were able to get Abel a room with 2 beds on the oncology side which was nice. Isabelle was due for tylenol while Abel was waiting for me to get there so he had requested them to give her some. By the time I had gotten there, 2 hours later, they still did not have the tylenol. The resident doctor came over to speak with us and she said she would get the medicine for us. Meanwhile, Isabelle has a fever and feels HORRIBLE. Another hour goes by and I call the nurse. It is a new nurse, apparently they did a shift change and no one told our new nurse that Isabelle was due for tylenol. The new nurse then tells me that they are out and that it will take about a half an hour to get it because she has to get it from the other side of the hosptial.
They gave Isabelle an iv drip because she has not been eating. She ate one slice of bread all day and one cup of milk. She had an accident at like 2 am and she had to be wiped down, linen changed, and we put a diaper on her.
6/13/2011 -Isabelle woke up in a great mood. Her favorite nurse Amil was woke her up by taking her blood pressure. When he asked if there was anything he could get her she said, "yes, a toy." She was very happy to see him. Isabelles WBC dropped down to 30, but she hasn't had a fever since the night before. They told us that if her WBCs show that they are going up and she has no fever for 48 hours then she can go home. Sabrina is home with Abel and is sick now. That sucks because that means they can't come and visit us. Isabelle ate one piece of bread today and drank a cup of milk. They are going to start her on an appetite stimulant since she has not been able to eat well for a while. They said it will take a week for it to go into effect. She was sleeping on her stomach and when she shifted positions she accidently ripped her port out. She started screaming and grabbing her chest, then she yelled I've got to go potty. I then had to call for the nurse and drop her on the potty. After she was done the nurse's quickly took it out, cleaned it, and hooked a new one in. It hurt her because she didn't have time to be numbed : ( but at least it was quick. She is allowed to leave the room until tomorrow because she's quarentined due to the fever she had. The art therapist came by and played with Isabelle for a while, which she enjoyed. I have been enjoying the snacks that Michelle Christine brought me. It was nice to have a visitor today. At least I've been sleeping well. Isabelle made me switch beds because there are special wall stickers on the walls by the bed she was using. They are boy stickers and she didn't want to sleep on the boy side. I am going to have to figure out how to get some wall stickers for the hospital when she comes here to stay.
6/14/200 - Isabelles WBC has dropped down to 10.8. They did a special test called an IGG on her blood and she has a low protein count in her blood. (The protein isn't a protein that you get from nutrition, it apparently helps your blood build white blood cells. Her being low on this protein would explain why her counts keep dropping. It is considered a blood bi-product.) They are going to give her a transfusion of this special protein through an iv. The resident physician told me a lot of false information, which was aggravating. I have not spoken with the doctor that is here yet to find out what is going on. We will be here for another 48 hours at least. Isabelle has eaten 3 pieces of bread so far and hopefully will eat later. The cleaning lady came in and was cleaning up our room. When she got to mopping the dirty floors, she found an earring back. Instead of asking if it was ours, she picked it up from the dirty, wet pile with her dirty cleaning gloves, and set it on the table where we set our food trays. That is so disgusting. This room obviously has not been cleaned well enough for an immune compromised child to stay in and people like that are exactly why. I hate hospitals.
While in the er, it took them 2 tries to access her port. (She felt it and it hurt, normally she doesn't feel a thing) She became so distraught that she threw up all over Abel and the nurse. The nurse got Abel some scrubs to wear. The physician wanted to give Isabelle medicine for the nausiousness that is NOT supposed to be taken with the nausious medicine that shes on. Abel let him know that she couldn't take it and why. Being on the er side is so annoying because they don't specialize in Isabelle's condition, so they really don't know what to do with her. They had it on her med chart what she was taking and they should have known that it couldn't be taken with that other medicine. If Abel hadn't spoken up, they would have possibly caused her damage.
They were able to get Abel a room with 2 beds on the oncology side which was nice. Isabelle was due for tylenol while Abel was waiting for me to get there so he had requested them to give her some. By the time I had gotten there, 2 hours later, they still did not have the tylenol. The resident doctor came over to speak with us and she said she would get the medicine for us. Meanwhile, Isabelle has a fever and feels HORRIBLE. Another hour goes by and I call the nurse. It is a new nurse, apparently they did a shift change and no one told our new nurse that Isabelle was due for tylenol. The new nurse then tells me that they are out and that it will take about a half an hour to get it because she has to get it from the other side of the hosptial.
They gave Isabelle an iv drip because she has not been eating. She ate one slice of bread all day and one cup of milk. She had an accident at like 2 am and she had to be wiped down, linen changed, and we put a diaper on her.
6/13/2011 -Isabelle woke up in a great mood. Her favorite nurse Amil was woke her up by taking her blood pressure. When he asked if there was anything he could get her she said, "yes, a toy." She was very happy to see him. Isabelles WBC dropped down to 30, but she hasn't had a fever since the night before. They told us that if her WBCs show that they are going up and she has no fever for 48 hours then she can go home. Sabrina is home with Abel and is sick now. That sucks because that means they can't come and visit us. Isabelle ate one piece of bread today and drank a cup of milk. They are going to start her on an appetite stimulant since she has not been able to eat well for a while. They said it will take a week for it to go into effect. She was sleeping on her stomach and when she shifted positions she accidently ripped her port out. She started screaming and grabbing her chest, then she yelled I've got to go potty. I then had to call for the nurse and drop her on the potty. After she was done the nurse's quickly took it out, cleaned it, and hooked a new one in. It hurt her because she didn't have time to be numbed : ( but at least it was quick. She is allowed to leave the room until tomorrow because she's quarentined due to the fever she had. The art therapist came by and played with Isabelle for a while, which she enjoyed. I have been enjoying the snacks that Michelle Christine brought me. It was nice to have a visitor today. At least I've been sleeping well. Isabelle made me switch beds because there are special wall stickers on the walls by the bed she was using. They are boy stickers and she didn't want to sleep on the boy side. I am going to have to figure out how to get some wall stickers for the hospital when she comes here to stay.
6/14/200 - Isabelles WBC has dropped down to 10.8. They did a special test called an IGG on her blood and she has a low protein count in her blood. (The protein isn't a protein that you get from nutrition, it apparently helps your blood build white blood cells. Her being low on this protein would explain why her counts keep dropping. It is considered a blood bi-product.) They are going to give her a transfusion of this special protein through an iv. The resident physician told me a lot of false information, which was aggravating. I have not spoken with the doctor that is here yet to find out what is going on. We will be here for another 48 hours at least. Isabelle has eaten 3 pieces of bread so far and hopefully will eat later. The cleaning lady came in and was cleaning up our room. When she got to mopping the dirty floors, she found an earring back. Instead of asking if it was ours, she picked it up from the dirty, wet pile with her dirty cleaning gloves, and set it on the table where we set our food trays. That is so disgusting. This room obviously has not been cleaned well enough for an immune compromised child to stay in and people like that are exactly why. I hate hospitals.
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