Today was pretty uneventful. I stayed with the baby until about 9:45 am, knowing they wouldn't be starting chemo for Emma until tonight. I'm trying to figure out how to balance time between the two. Once Emma is feeling sick, I'm planning on staying with her, with little visits to see Ella (baby), until Emma feels better. So for now, I'm trying to see Ella a little more than I will be.
When I went over to the hospital, Emma was happily playing on her iPad. She's totally comfortable at the hospital and sleeping well. My sister has been staying the nights with her.
The hormonal imbalance thing caused by the removal of one of her ovaries seems to have been balanced out and the issue has gone away.
We've discovered Emma needs glasses and she can't see the tv very well. Netflix doesn't work on her iPad, due to the Internet or firewall, but it'll work on a laptop. So, child life brought a laptop for her to use to watch movies and be able to see it well. She loved it.
Around 6pm, they received the results of all the blood testing they did yesterday when they gave Emma a small dose of the chemo. That tells them what dose of chemo to give Emma from now on. They gave her a dose tonight at 8 pm. I'll have to pull out the schedule, when I'm not so lazy, and explain the schedule for chemo and what other ones she'll be getting.
The purpose of the chemo is to destroy her bone marrow. Since she has Fanconi Anemia, it means that Emma's body breaks down super easy. Kind of like someone who has had lots of radiation & has frail chromosomes that break really easy. She can't handle normal doses of chemo without it likely being fatal. Same with radiation.
So, all that makes transplanting a person with FA quite challenging.
They keep refining it and keep changing it. Now they've figured out how to avoid radiation and try to use the lowest doses of chemo as they can and it affects her more than it would a non-FA person.
She'll have chemo for...counting yesterday...for 7 days. That should totally wipe out her bone marrow. Then she'll have a day of rest. Maybe two. They said they will collect from the donor on Friday but we won't get them until Saturday.
Back at home, Tyler and Rhys are back home from visiting us, and he got our two kids from my sister's house about five hours away (they met in the middle). They had stayed there while he came to visit here. So, it's nice to have them back at home together. Rhys (3) and Violet (5) kept hugging once they saw each other again.
In the photo, while we were FaceTiming, TS (6) got a blanket and wrapped Rhys up in it and snuggled her in his arms to keep her warm. It was so sweet! I love it when siblings take care of each other. We miss them SO much. It was good to talk with them.
Sorry this update is so late tonight. I'm about to fall asleep so I hope it made sense. We had a busy night. I'm here with the baby again. I'll be heading back tomorrow. Auntie Ani is hanging out with the Emma tonight.
Day -6 Video:
Emma really wanted me to post this video and tell people about her hands. She was born with a rare genetic disease called Fanconi Anemia, and besides the health issues that it causes (bone marrow failure and cancers), there are often some physical abnormalities.
For Emma, and many others with FA, that means she was born with no thumbs (...and had a major heart defect that required open heart surgery, has only one kidney, has a repaired cleft of her soft palate and has moderate to severe hearing loss. At age 10 she is the size of a 7 yr old.)
She wanted me to tell you about her hands. She says she doesn't need thumbs. She wants them, but she likes her hands without them too, and she can do everything still. She says if something is hard, she just has to keep trying and she'll figure it out.
She also wanted me to say that if there is anyone out there that doesn't like something about themselves, she wishes they wouldn't feel bad about it. She also said that she knows that when we all die, Jesus will heal and fix everything that needs it.
Someone gave her a latch hook kit (thank you!!), which she LOVES! Here she is playing with it...no thumbs and all. ♥ She used to be so shy and is getting so NOT shy while being here. She cracked me up. She thinks latch hooking is pretty awesome.
DAY -6 (continued)
It seems deceptively innocent as it sits there quietly on the stand, almost hidden in the background, slowly going inside of Emma's body.
Watching Emma smile and laugh and play, it almost seems like she's unaware of what is going on. She seems unaware that poison is entering in and starting the process of destroying her bone marrow. But she's not unaware. She knows what is going on. We've explained it and discussed it, and she chose this, along with us.
As her mother, there's such conflicting emotions. I know logically that this will save her, but knowing what this is doing to her and how sick she'll get, I feel like ripping it down and karate chopping it on the head. Or maybe going all Hulk on it and everyone else that tries putting that inside of her (though, come to think of it, I'm not really sure I'm strong enough to rip my shirt off like the Hulk. Not to mention, it would be incredibly immodest of me to do so...so...I'll have to think about that).
How can you ever feel okay with poison going inside of your child's body? It turns my stomach. If I didn't know so strongly that this was the right thing to do, I don't know if I could go through it. But, I do, and for that reason, I will restrain my inner Hulk (at least for a little while, while I look for shirts that are cheaply made and would be easy to rip off...while also trying to solve the modesty issue...).
This part is really hard, watching it go in and knowing what is coming. It's so unsettling and evokes many emotions. Ani feels the same way. And, the waiting. Knowing that happy, bubbly Emma will not remain that way for much longer (but we'll enjoy it while we can!).
Sweet baby girl, I wish more than anything that I could do this for you. I really don't want to see you suffer.
Tomorrow starts two more chemos (fludarbine and cytoxin), as well as ATG. She'll have four days of those three drugs. On day -3, Cyclosporine is started. August 1 is a day of rest. August 2 they collect the donor cells. August 3 they give her the new cells. Just another week...and about that time, they predict it'll be pretty much misery for her.
But every day is a step closer to getting better, right?
Now I think I need to go cry. I miss my other babies and my husband. I wish they were here.