Slow days are good days

So Jillian has finally accepted and fully understands the possibility of her losing her hair. I show her pictures of other children who have lost her hair due to cancer and we talk about how beautiful they are and that there is a very high chance that she will lose hers as well. The only thing that concerns her is that it will grow back. I tell her everyday that her hair will indeed grow back but it’s still heartbreaking to hear her say that she will miss her hair. Although this is a very superficial thing to worry about when your child has cancer, it is the one thing that really labels them as being sick. I know it’s going to be hard on her because other than feeling sick it’s the one thing that she will physically see that is changing her body. I am still holding hope that she will be one of the rare children who do not lose her hair! We are noticing it thinning a lot more but haven’t seen any falling out. Let’s hope!

We spent most of yesterday sleeping! It’s like she’s an infant again. We sleep when she sleeps. And she has been really tired lately. The meds are really doing a toll on her body but we are happy to not be seeing any major sickness. She went in for a full body bone density scan. They wanted to see if she was showing any signs of Osteoporosis. Her scans came back with no abnormal signs so that’s a good thing! She sat really well during the test, we were so proud of her. She was so exhausted but we managed to get through it. Here she is waiting for the test to start. She was a bit scared but was fine because they let me hold her hand the whole time. Her legs look super long here!

 

The rest of the day was spent resting and sleeping. We didn’t make it up to the play room, some days she just doesn’t feel up for it. She’s still eating ok. Her new favorite food right now is toast. She eats it for every meal now! Oh, we did get some results back from the spinal tap test and just like her first one it came back with no signs of Leukemia cells in her spinal fluid or brain. Hooray for good news! We still haven’t gotten any results back from the Ph+ recheck. I’m hoping we will get them before we start the Dasatnib (the experimental drug) which we are supposed to start tomorrow! I’m sure the test will come back the same as the first time but we can always hope there was a false positive! She’s been off her IV for fluids for a few days now. As long as we can keep her drinking throughout the day then she doesn’t have to be hooked up. I gave Daniel the job of documenting her fluid intake and making sure she drinks and man did he take it seriously! He makes her drink all day long and documents ever sip she’s taking. It’s awesome! One less thing I need to stress about too! We are hoping for another non eventful day today since tomorrow should be a big one. During rounds the doctors come in and just ask if we have any questions because there’s not much to report. No news is good news sometimes! Tomorrow we will also get to see where her numbers are at so we will see how much closer we are to going home! Send all the prayers you can send in hopes her numbers went up! I hope everyone has a happy Wednesday!