Well today we were supposed to start the consolidation phase of Isabelle's treatment. Her ANC (total white blood cell count) wasn't high enough for them to begin. (They need her at at least 750, she was at 280) They want us to come back next Friday and they think her counts will be fine by then. We pretty much drove to the clinic and drove home. The good thing is that we have a week off! They did explain a little bit about this phase. It is a period of six months, broken into 3, 2 month sections.
In this first 2 month period she will be going under every Friday, as I explained before, to have chemo put into her spine. Abel will give her Cytarabine "ARAC" chemo every Sat. and Sun. (That is the one that goes in her tubes with a syringe push) Monday we will go to the clinic and she will get deaccessed and more chemo.
She will be on an oral chemo called Mercaptopurine "MP". They are pills that we will have to be crush. She will be on this chemo from the first day that we begin this new phase, till the 15th day. She will then have a break and restart it from day 29-42.
She will get a chemo called Cyclophosphamide "CPM" on day 29. (administered IV at the clinic) On days 15 and 43 she will be getting a chemo called PEG-asparaginase which is also administered IV.
Isabelle has been feeling great with minimal side effects from the chemo right now. One of her eyes has been drooping pretty drastically. The doctor said it was a side-effect of the VinCRISTine chemo that she got 2 weeks ago. The doctor also said that most likely will go away with time. She has also had some leg pain as well, but has been a lot more active.
Her ANC is still very low so there will be no Easter egg hunt at Ida Lee this year, no mall visit to see the Easter bunny, and no flower festival either. At least she is doing well and thats all that matters.
Friday, April 8, 2011
Monday, April 4, 2011
Remission
Well the doctor called with the results from Fridays biopsy/labs and Isabelle is considered in remission. That means shes right on track to start her 4 days a week chemo. We will still have about 2.5 - 3 years of treatment to get rid of the cancer fully. They say once she hits the 5 year mark since the diagnosis she is considered cured.
Friday, April 1, 2011
Day 29, Hopefully last day of the "Induction" period
Cranky girl, on the way to Fairfax
Well the day started off nice and early. The Horaces' and the Beisels' picked up Sabrina at 6:30 a.m. and watched her for us. We left the house around 7 a.m. to make it to Isabelles 8:45 a.m. appointment at the clinic. From the moment Isabelle woke up at 6 a.m., she started asking for something to eat and drink. I knew right then and there it was going to be a long day. (She couldn't eat or drink until after her procedure) They accessed her port and checked her "levels". Her white blood count was 290, which is the highest it has been. (Normal is 2500) They said from here on out, that her counts should be going up because she is off the steroids now and the kind of chemo she is getting is different.
The doctor went over a game plan, before we went to the hospital for the procedure regarding her chemo. If her results Monday are where they should be then she will start the next phase. This means every Friday for the next 2-3 months she will have to go in for a procedure where she will have to be put under to get chemo in her spine. They will leave her port accessed with a little tube in it and we will have to give her chemo at home through a syringe on Saturday and Sunday. We will also be giving her oral chemo on those days as well. Monday we will have to take her to the clinic to get chemo and have her port de-accessed. So a total of 4 days a week she will be getting some kind of chemo. From my understanding, these types of chemo don't have as strong of side-effects as the ones that she has been on. They will teach us about them when we go to the clinic next Friday. We will also have get the prescription while we are out there.
Her procedure went very well. She was super cranky. A combination of not sleeping well, being thirsty, and being hungry really had her in a mood. They took forever it seemed like to get her ready and they gave her the anethesia at noon. It was so sad because as she started getting loopy she started screaming, "mommy pick me up, mommy!" I hugged her and spoke to her, but you could tell that she was almost out. It was so sad. They gave her extra medicine, so that she wouldn't throw up after the procedure because she normally throws up a lot from the anesthesia. She woke up and she was cranky, but she was hungry and thirsty. She had no problem holding down the bread and water that we brought for her. They did a spinal tap, took bone marrow, and gave chemo in her spine. She has a big bandaid on her back and it doesn't look as bad as it did last time. Her platelet counts are higher now too, so thats probably why. We were able to leave the hospital around 2:30. Since we've gotten home she ate some rice and she's been laying down because she is wiped out. She is in good spirits though!
Waiting for her to wake up after her procedure.
As soon as she woke up she wanted to eat. She was starving!
"No mommy, you can't go potty!!" This is after we were discharged and we were about to leave.
Shes at 32 pounds right now, which she started at 36. She has gained some weight though because she was lower last week. (I don't remember what it was.) Hopefully everything will continue to go up and we find out Monday how many cancer cells are still in her body.
The doctor went over a game plan, before we went to the hospital for the procedure regarding her chemo. If her results Monday are where they should be then she will start the next phase. This means every Friday for the next 2-3 months she will have to go in for a procedure where she will have to be put under to get chemo in her spine. They will leave her port accessed with a little tube in it and we will have to give her chemo at home through a syringe on Saturday and Sunday. We will also be giving her oral chemo on those days as well. Monday we will have to take her to the clinic to get chemo and have her port de-accessed. So a total of 4 days a week she will be getting some kind of chemo. From my understanding, these types of chemo don't have as strong of side-effects as the ones that she has been on. They will teach us about them when we go to the clinic next Friday. We will also have get the prescription while we are out there.
Her procedure went very well. She was super cranky. A combination of not sleeping well, being thirsty, and being hungry really had her in a mood. They took forever it seemed like to get her ready and they gave her the anethesia at noon. It was so sad because as she started getting loopy she started screaming, "mommy pick me up, mommy!" I hugged her and spoke to her, but you could tell that she was almost out. It was so sad. They gave her extra medicine, so that she wouldn't throw up after the procedure because she normally throws up a lot from the anesthesia. She woke up and she was cranky, but she was hungry and thirsty. She had no problem holding down the bread and water that we brought for her. They did a spinal tap, took bone marrow, and gave chemo in her spine. She has a big bandaid on her back and it doesn't look as bad as it did last time. Her platelet counts are higher now too, so thats probably why. We were able to leave the hospital around 2:30. Since we've gotten home she ate some rice and she's been laying down because she is wiped out. She is in good spirits though!
Waiting for her to wake up after her procedure.
As soon as she woke up she wanted to eat. She was starving!
"No mommy, you can't go potty!!" This is after we were discharged and we were about to leave. Wednesday, March 30, 2011
3/30/2011
Today Isabelle had a great day. She played for about 20 minutes every hour to hour and a half. (It was nothing crazy like running, but she was in a good mood) She had quite a bit of stomach pain today, but the medicine def. helped. We got her new SPF 50 hats in the mail today, which she made sure that everyone had some kind of hat on. She didn't want to take her medicine today and she was crying the whole time. She just kept saying, "but it tastes like throw up!" It was sad and hilarious at the same time. Our friend Amy made us a shutterfly album of the family and Isabelle loved it. Her favorite part of it was the pictures of herself, lol. She also had some clothes come in that we ordered which she was excited about. I think she tried everything out at least once. (She is moving to size 5 now, which is crazy to me because shes only 3.5 yrs.) Isabelle told me that she had a great day today, which was so nice to hear. She has her leukemia story book, called "I'm Still Me" almost memorized. It is like she starts reading me the story. It is so cute. She is so strong and has been so brave through all the pain that she has gone through and is still going through. I am so proud of my baby...
Tuesday, March 29, 2011
3/29/2011
Today has been the best day that we've had all week. (For Isabelle this means she was in a halfway decent mood all day, and she was able to walk around a little bit.) We put about 15 stickers in her sticker book and she was very tired after that and had to rest. A couple hours later she walked around a little bit and looked through her cabinet that has all of our crafty-type stuff. She decided that it was time for me to take her nail polish off and redo her nails. I haven't had a chance to put the stickers on because she became tired from the exertion.
She has eaten almost a normal amount today, which was a nice change. I've been having to give her tylen. because she has been having a lot of joint pain. (Associated with the vincristine chemo.) She has also been dizzy.
Update from this evening: She actually got a burst of energy this evening and was playing ring around the rosy with Sabrina. She had this burst for about an hour! It was so nice to see. Hopefully it stays this way for the rest of the week. (Her Friday chemo is going to bring her back to a down.)
She has eaten almost a normal amount today, which was a nice change. I've been having to give her tylen. because she has been having a lot of joint pain. (Associated with the vincristine chemo.) She has also been dizzy.
Update from this evening: She actually got a burst of energy this evening and was playing ring around the rosy with Sabrina. She had this burst for about an hour! It was so nice to see. Hopefully it stays this way for the rest of the week. (Her Friday chemo is going to bring her back to a down.)
Sunday, March 27, 2011
3/27/2011
Isabelle didn't have the best day today. All morning she felt sick. She ate 3 pieces of bread today and drank 2 bottles of pediasure. She had a good half an hour where she actually wanted to do her workbook and put Easter window clings up. She then took a 5 hour nap. When she woke up she was feeling a little better and ate some pickles. It looks like we are going to have a late night tonight.
This is a site where I ordered Isabelle a doll that is bald. The doll has a wig too! Its supposed to help with self-esteem with losing their hair. I think she's going to love it!
http://www.komfykids.com/
This is a site where I ordered Isabelle a doll that is bald. The doll has a wig too! Its supposed to help with self-esteem with losing their hair. I think she's going to love it!
http://www.komfykids.com/
Saturday, March 26, 2011
3/26/2011
Today wasn't a great day, but it was good. Had many highs and lows for Isabelle. She didn't eat much and she had a lot of nausia today, even with her medicine. She was asking me a lot of questions today about her leukemia and about her hair. She thinks Abel has leukemia too because he shaved his head. She told me that she didn't want to taste her "tubey" medicine and that it was gross. When they put anything in her port line she sometimes will taste it and its not pleasant. The lotion and shampoo that I bought for her head has really helped. Its a brand of California baby for super sensitive skin. (it has no fragrance or chemicals)
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