August 22, 2014

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Day 14: Chemo Day

Today was a big day for Scarlett. We left the house at 7:30 this morning so it was a long day too. We started her appointment by getting weighed (maintaining her 22 pounds very well so far).

Next was labs. She had a type and cross match to get her blood type as well as 2 more vials for her blood work. Surprisingly her labs came back really good! Her red blood cells (Hgb) went down slightly since Tuesday but still not enough to worry about. Her white blood cells were still in an OK range but are steadily going down. Looks like “house arrest” is coming soon! We came in early thinking she would have to have platelets again but even those went up. So no extra transfusions today!

During her physical exam, the nurse practitioner referenced a study that her original oncologists had sent. Apparently, during her first bone marrow, they did a chromosome analysis. She was found to have chromosome 11/13 inversion. T-cell ALL is a rarer form than b-cell ALL. In 10-15% of T-cell cases this inversion occurs. All in all, this occurrence has a positive prognosis. My eyes filled with happy tears when I heard this! Finally, some positive news!

After that was a long wait before her procedure. It wasn’t really long time wise but we had to hear the poor baby cry “I hungry” about a thousand times. Poor little Scarlett had to fast since 8:00 the night before! Lucky for me, she slept through the night. I’m not sure I would have remembered not to feed her if I had woken up at 3:30 in the morning. She finally had her bone marrow aspiration at 11:30. Even when being sedated this child fights sleep! She was sitting up playing a game and her eyes grew heavier and heavier but the nurse had to actually push her down to get her to lay down. She sure is a fighter! Her procedure went well. She hasn’t been in any pain since but they do give her a pretty heavy duty pain med for it. Unfortunately, we probably won’t get the results until Monday. At this point it doesn’t affect her treatment plan but we just really want to know. While she is still sedated she gets her dressings changed. Since she has been so sensitive about her mouth the nurse practitioner and anesthesiologist used that time to really check her mouth for thrush or mouth sores. To everyone’s surprise, they found three teeth instead! No wonder her mouth hurts!

After she woke up, she got to order lunch. She gets to eat while she gets her chemo. One of her chemo meds is just an IV push that is given over a minute or two. Next comes a heart protectant medication that is infused over 15 minutes. Lastly is the second chemo which is infused over about 20 minutes. Since she is so little the whole process doesn’t take too long at all. After that we get to go home.

She had enough energy to play a little bit when we got home. But by 4:30 she was getting pretty tired and by 6:30 she was asking to go to bed. She’s been getting more and more tired with each round of chemo. Her tummy also seems to bothering her a little more each time. This is normal as the chemo is building up. We are also noticing that her hair is falling out a little more each day. I’m hoping that it makes it another week as I have a special day planned before then. I’m not sure that we are going to make it but I’m sure as hell gonna try.

Scarlett is such a brave girl. She may be putting up more of a fight every day with her medicines, flushes, dressing changes, blood draws, procedures… But she does it all better than most adults. When she is not doing any of that she never complains. She just takes it as it comes. In the middle of a tantrum she will sometimes laugh or smile or so lovingly kiss her brother or sister. She makes it so much easier for us. How can we complain when she doesn’t?

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