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.

Tuesday, July 3, 2012


We have been talking with Jordyn about her hair and trying to prepare her for when it will possibly fall out. This has been a very hard subject for her, and she is very sad to know she might become bald, but happy to know it should grow back when she is done with her chemo treatments, but sad that it won't be for quite sometime. She has been talking about doing a photo session with me before she loses it in her favorite outfit, and it has been something that seems very important to her. Tonight, when I ran my finger very softly and gently through the very ends of her hair, about 10 pieces of hair would come out every time. I decided tonight was probably the best time since she hasn't been feeling too yucky today, and had more energy than usual. We set up my studio and did some pictures. She was very sweet and told me she wasn't even going to stick her tongue out for them and was just going to sit and smile for the camera. It went well, and I will try to get those pictures up soon. Then she was ready for bed, but she was so concerned that her hair will all fall out before she got her first hair cut. She wanted to do it right then and there, so we did. Jordyn got her first hair cut of her life tonight. Here is the before and after. Not the greatest pictures ever, but you get the idea.