She's really missing home...

I wasn’t able to update the rest of our day last night, Jillian had a rough night. She cried and cried about wanting to go home. It was tough on us to tell her she was still sick and we needed to stay longer. Every time she takes her medicine she thinks that that is it and that is the medicine that will make her better. She doesn’t understand the concept of what cancer is and that it will be a long process. But what 4 year old does? We try to explain it to her as best as we can but all she wants is to go home and see her family.

She was giving her second dose of the strong chemo yesterday and she reacted to it really well. I was worried the chemo wasn’t working because she hasn’t gotten sick yet and we are not seeing any major side effects to it. But the doctors say that kids are usually really resilient and they handle chemo really well. So we are just lucky she is doing as well as she is! She is still having a hard time taking her meds because a few of them don’t dissolve as well as the others do and she freaks out when the crushed up medicine gets stuck on her tongue. The steroids dissolves really well so it’s easy for her to take and that is one of the main important drugs. She is also taking two other ones that settle at the bottom of the cup and she hates that! So we decided to think outside the box today and I tried crushing up the medicine and putting it in between two Oreo cookies. They were masked by the white frosting center and the cookie part allowed her to not taste it getting stuck on her tongue! Plus she gets to eat cookies in the morning. It worked so well and I am so excited to have a better way to get her to take her meds without fighting with her the whole time! Thank goodness!

So we have a little bad news today. Not anything super concerning but when they took her blood work last night her counts came back low. Her ANC is 110 today which means we are farther away from home today than we were yesterday! It’s hard to not feel discouraged by that but the doctors say it’s very common to have numbers go down when they are given chemo. So it’s a bit of a lose lose situation for us. We want her numbers to go up but we have to give her the chemo and the chemo makes her numbers go down! Sucks but I’m confident that her numbers will go up this week!

We will not receive any results from her spinal tap from yesterday until tomorrow probably. We asked them to double check her chromosome test to make sure she is indeed Ph+. It will be a simple test for them and they already have what they need to test it so it wasn’t a hassle asking for a recheck. Maybe we will get lucky and it will come back negative! Daniel and I have also been doing a lot of research about this new experimental drug and even though we have signed the consent to participate in the research study we still have a little hesitation on whether or not we should stick with the drug that is studied and more used or if we should go with the experimental drug. It’s a big decision and we want to make sure that we are doing what is best for Jillian. It’s exhausting!