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.
Tuesday, July 26, 2011
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.
Saturday, June 11, 2011
6/7/2011 - 6/11/2011
6/7/2011- Isabelle had an early appointment just in case she needed a transfusion. It took 2 hours before we were even seen!! All of her counts looked good, so she didn't need any transfusions. Her white blood count was in the normal range, so she has no restrictions either. She received a chemo push of vinchristine and had a doctor check up. Next week we start a new phase of the treatment. She has to go to the clinic at 8:30 am to get a spinal tap and vinchristine chemo push. After that we have to wait for a room at the hospital to open up because she will have to be hospitalized 4-7 days. At the hospital she will receive chemo through IV for 24 hours. Then she will have to be observed and hydrated to try to push it out of her system, which is why the 4-7 day hospitalization. This is to prevent kidney and liver failure. The name of this chemo is called high dose methrotrexate. She will receive chemo pills every day for the next 56 days as well. After the hospital stay she will go one day the following week to check on her blood. The week after that she will have to be hospitalized again. She will be hospitalized 4-7 days every other week for about 2 months. (This is including after the new baby is born.)
6/8-6/11 Its been a really rough week for Isabelle as far as appetite. Everything has been making her sick, even with all the meds she's on for the nausia. I've been syringing her pediasure, which makes her sick and spoon feeding her rice. I know shes tired of throwing up and she doesn't want to try eating anything.
6/8-6/11 Its been a really rough week for Isabelle as far as appetite. Everything has been making her sick, even with all the meds she's on for the nausia. I've been syringing her pediasure, which makes her sick and spoon feeding her rice. I know shes tired of throwing up and she doesn't want to try eating anything.
Thursday, May 26, 2011
Friday the 20th-25th
Friday Abel took Isabelle to the clinic around 3. When he got there they told him that she needed a blood transfusion and that it was too late to get it done at the clinic. They were going to send her to the hospital to get it done, but when they called over the oncology unit was full and didn't have room. They sent him home and told him that we need to watch for signs of her "crashing" and they made an appointment to come back on Monday. They said if she showed symptoms or her blood dropping seemed to get worse to go ahead and bring her to the emergency room. (That in itself is a risk since her immune system is completely compromised right now.) Luckily she made it to Monday without any problems, but it was a scary thought to know that she needed a transfusion and they just didn't have room to accomodate us safely.
Monday- Isabelle's appointment was nice and early to get the blood transfusion. When they accessed her port she put up a fuss. I guess as good as shes been, shes decided that shes had enough. The blood transfusion too a couple hours and she made a friend at the clinic. (the little girl doesn't have cancer, she has a platelet disorder and only has to come once every 2 weeks) She had a lot of fun playing with the princess toys on the train table. The nurse's asked if we could go ahead and get the chemo, so we would only have to go to the clinic 4 times this week instead of 5. The doctor said that would be fine, which was great news to me. She then got her chemo and we were able to leave.
Tues-Wed. - All she had done was her chemo push and there was no throwing up, Yay!! She also insisted on going in her dress-up Rapunzel outfit. She even wore the slippers, which I had to put sandals over so she wouldn't get them dirty. Once we were there, we had to go around the whole place to show EVERYONE her outfit. If people did not look at her, she would grab their attention so that they could tell her how beautiful she looked. It was so cute. She took her sandals off in the clinic so she could show them off.
She has a crush on this Asian man at the front counter named Jay. She is constantly flirting with him and she told him that he was sooooo handsome! It was so cute and funny. Of course everyone laughed and she kept saying it.
Monday- Isabelle's appointment was nice and early to get the blood transfusion. When they accessed her port she put up a fuss. I guess as good as shes been, shes decided that shes had enough. The blood transfusion too a couple hours and she made a friend at the clinic. (the little girl doesn't have cancer, she has a platelet disorder and only has to come once every 2 weeks) She had a lot of fun playing with the princess toys on the train table. The nurse's asked if we could go ahead and get the chemo, so we would only have to go to the clinic 4 times this week instead of 5. The doctor said that would be fine, which was great news to me. She then got her chemo and we were able to leave.
Tues-Wed. - All she had done was her chemo push and there was no throwing up, Yay!! She also insisted on going in her dress-up Rapunzel outfit. She even wore the slippers, which I had to put sandals over so she wouldn't get them dirty. Once we were there, we had to go around the whole place to show EVERYONE her outfit. If people did not look at her, she would grab their attention so that they could tell her how beautiful she looked. It was so cute. She took her sandals off in the clinic so she could show them off.
She has a crush on this Asian man at the front counter named Jay. She is constantly flirting with him and she told him that he was sooooo handsome! It was so cute and funny. Of course everyone laughed and she kept saying it.
Thursday, May 19, 2011
Quick clinic days 5/18-19
Past 2 days have been very hectic. Isabelle has been very sick the past couple days. Yesterday she threw up probably about 6-7 times, even with her medicine for nausia. She barely ate anything either. On the way to the clinic she threw up 3 different times where we had to pull over, change her clothes, and wipe her down. (We of course had to wear gloves and handle with care) When we arrived at the clinic it took longer than expected because we saw a nurse practitioner as well as the chemo. Isabelles weight has dropped again, but shes not the lowest that shes been, so they're not overly concerned. (They do want the nausia to stop though. ) She prescribed us 2 more medicines for nausia to try instead. One of them causes drowsiness which I'm not thrilled about since shes been very tired. She slept about 80% of yesterday, but she was also not feeling well. For her evening chemo she spit it all out, all over the place. Abel had to make more, we changed her clothes, linen, and wiped her down. (Had to wear gloves because of the toxicity) So exhausting.
Today Isabelle was worn out and did not eat much in the early day. After her first dose of her new nausia medicine, her appetite picked up. (this is the one of the 2 that doesn't cause drowsiness) When we went to the clinic, she threw up in the car, but she made it in the bag! Her chemo push actually went very quickly today, thank goodness! She did throw up the little bit of food she ate earlier in the day, but we left after only 20 minutes! We even beat traffic!! She ate a good sized dinner, which was nice too. Just when I thought the day was going well, Abel went to give her the nightly chemo and she spit it out everywhere. So it was pretty much a repeat of the night before. So tired, but tomorrow is the last day of clinic chemo until Tuesday!! Hopefully this new nausia medicine will make my baby feel better.
Today Isabelle was worn out and did not eat much in the early day. After her first dose of her new nausia medicine, her appetite picked up. (this is the one of the 2 that doesn't cause drowsiness) When we went to the clinic, she threw up in the car, but she made it in the bag! Her chemo push actually went very quickly today, thank goodness! She did throw up the little bit of food she ate earlier in the day, but we left after only 20 minutes! We even beat traffic!! She ate a good sized dinner, which was nice too. Just when I thought the day was going well, Abel went to give her the nightly chemo and she spit it out everywhere. So it was pretty much a repeat of the night before. So tired, but tomorrow is the last day of clinic chemo until Tuesday!! Hopefully this new nausia medicine will make my baby feel better.
Tuesday, May 17, 2011
5/17/2011
So Isabelle's appointment was today at 8:45 am today. We arrived they told us that she wasn't getting a procedure done today, they wrote it down wrong. The first chemo she received today was the cytoxin. Before she could get that she had to get an hour drip of IV fluids plus a "good" urine sample. Her cytoxin drip only took a half an hour, but its required that after the cytoxin, she needs 2-4 hours of after hydration. That is mainly because it is really hard on the bladder. Then she had to get her ARAC chemo in tube push. (thats the one that gave her the fevers) We were home by 4, which was nice and earlier than expected. She had a fun day at the clinic today playing with the nurses.
Isabelle has to get M6P for the next 2 weeks. (pill chemo) When Abel went to give it to her this evening she threw it up all over the place. He then had to get her another one and he had to put on his MOP gear pretty much to clean it up. Tomorrow and Thurs. her appts. are at 3 and its just a "quick" chemo push in her tube. Friday her appt. is at 2:30. She is basically getting her ARAC push and having her tube accessed.
Isabelle has to get M6P for the next 2 weeks. (pill chemo) When Abel went to give it to her this evening she threw it up all over the place. He then had to get her another one and he had to put on his MOP gear pretty much to clean it up. Tomorrow and Thurs. her appts. are at 3 and its just a "quick" chemo push in her tube. Friday her appt. is at 2:30. She is basically getting her ARAC push and having her tube accessed.
Tuesday, May 10, 2011
5/10/2011 procedure
Isabelle's procedure was scheduled at 10:15 and did not get started until 12. The good thing was everything went smoothly and she was ready to leave at 1:30. She is scheduled to start the 7 day a week chemo next week, (4 of the days we go to the clinic) but her ANC blood count will probably be too low and we will probably be delayed for a week or 2. Her ANC was 100 today, so shes back on all her restrictions as far as going out/eating. Her red blood count was also low, but the doctor said it should be going back up now. It was nice to have a quick day, but sucks that we are on restrictions again.
Numbing cream on her back, getting ready for her procedure.
Waiting for the procedure to begin.
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