Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)


Sunday, July 8, 2012

Nearing the End of Induction

Jordyn's last appointment took forever. We were at the hospital for almost 5 hours, and she just had her checkup appointment and her chemo. When they went to draw her blood out of her picc line, it would flush, but they couldn't get blood to draw back and they do blood counts every week to see where she is at. They tried to move her arm in all types of different positions, but nothing worked. Finally the nurse talked the doctor into letting her use tpa which helps de-clot the line. They checked it after a half an hour and it still wouldn't draw blood. It was about an hour and 20 minutes by the time her blood was actually drawn. Jordyn was able to order spaghetti while we waited since she was there for over 3 hours, and she feels like she is always pretty much starving because of the steroids she gets every day which are part of the chemo treatment, even though she is eating more than I am at the moment.

Her dressing on her picc line has to be changed once a week, and we knew at that point that we wouldn't be home in time for her scheduled nurse visit, so we asked if they could change it at the hospital. Jordyn was actually very brave going in and not terrified like she usually is, but by the time we got to the dressing though, she was really scared because nurses had been talking about her picc line not working and she was worried they were going to put her in the hospital or poke her with a needle or something. I finally realized why she was so scared, and I reassured her and told her more about what they were doing. She has really wanted to know pretty much everything that is going on throughout this process and she seems to do a lot better and be less scared as long as people are communicating with her.

We finally got her back into the big room where they do everyones chemo treatment, and she was a lot happier. We were told her blood counts. Her white blood cells are finally back into the "normal range" at 6.6. Her platelets are up in the normal range again as well at 282, and her hct is still hanging on in the low range at 27.1 and it has been typically around 28 so not much change there.

Physically: Her hair is starting to fall out a lot. I was left covered in hair after her appointment, and so was her car seat. I am noticing that it is really starting to thin out at this point, and every morning when we brush it lots comes out even when it isn't tangled or anything. I think she has thrown up once from the chemo. She is starting to get very puffy cheeks and looks a lot differently in her face than she did before and her belly is growing and both of these are things that happen with the medicine she is on. She even has an outie belly button at the moment and she usually has an innie. She is still super tired, but is starting to play occasionally and shows some interest in toys again but not much.

Her next appointment will be her usual checkup, and then she has surgery. She is going to be getting a bone marrow aspirate and biopsy as well as a lumbar puncture where they will also put some chemo in her spinal fluid, but she will not be getting normal chemo next time or the time after that I think. We will hopefully hear sometime next week if there are still cancer cells present in her bone marrow, and they will decide further treatments based on that.

2 comments:

  1. How sad about her hair. Poor little gal! The whole story just breaks my heart.
    Wendi Potter Jorgensen (I went to HS with Jacob)

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  2. Sweet Jordyn! We are SO rooting for you precious angel!! Don't worry about your hair; it will grow back...sometimes even a different color..wouldn't that be something! :) There's SO many people who love you and are anxious to see all your pictures, and hear about how you are doing! Our family is praying for you every night in our family prayers, and we know that Heavenly Father is sending your very own special angels to help you get better and not be scared! One of those angels is our little boy Brycen! He's 2 1/2 years old. He went to Heaven on August 17th, almost 2 years ago. He loves it there and sends us little messages all the time so that we know he is okay and happy. He is a fun little boy and likes to play a lot..so he might come play with you some time, but I know he will always watch over you while you sleep and keep you safe! We love you sweet girl! Be strong and give your mommy and daddy lots of hugs and kisses! Parents really love those things...you can even make them slobbery and that's even better! :) HUGS and SO much love from the Burrell Bunch! Johnathan, Alicia, Bailey, Johnathan Jr. Kenli, McKenzie, Angel Brycen and little Ellie.
    P.S. Did you get our blanket?

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