Wednesday, July 31, 2013

Day -4 & -3

DAY -4
Last night Emma ran a fever all night and still is. She slept pretty good but whimpered a lot in her sleep. She had to get up every two hours to pee. They had me wake her up to take her if she didn't wake up on her own. I know that migh
t seem kind of mean to not let her sleep, but the chemo can't sit around in her bladder or else it can make her bladder have bleeding and blood clot problems. Plus, they need to make sure her kidney is functioning okay and producing proper amounts of urine. Which, thus far, it is working fantastically. Luckily she woke up, peed, and went right back to sleep quite easily.

Her platelets came back at 8 (8,000), so they transfused her some platelets in the wee hours of the night. Her wbc is down to .6, but her ANC is up to 500 something. I think her body must be trying to fight off the ATG (animal antibodies that she's been given to destroy her WBC so that her WBC won't fight the new marrow when she's given it).

This morning I woke up to Emma looking at me really strangely. She was acting odd. I was confused. I saw her stand up, so I figured she was getting ready to use the restroom. I walked over to that side of the bed and saw she was standing on the floor barefoot, which she never does. Feet go straight into her shoes. I mentioned to her that she forgot to put her shoes on, and she jumped at me like I had yelled at her (which I hadn't). She was acting really odd. So I walked her into the bathroom, and she went fine, and then she forgot what the toilet paper was for and just put it in the garbage. I kind of stood there looking super confused. Then she laid back down. She kept jumping at everything I was saying like I was yelling at her, which I wasn't at all. When she would look at me, she looked different in her eyes. Like she wasn't totally there all the way.  (Pretty sure she was sleeping walking due to the Benadryl).

Her chemo and stuff shouldn't affect her mentally like radiation (and some other chemos?) can do. And she hasn't had any radiation. So, I wasn't sure what was going on. I told the nurse, and she wondered if it was the Benadryl. Emma had received it a few more times. I think that's what it is. Emma reacts really weird to Benadryl. Same thing with morphine. But it's why we asked to use a different medication instead of Benedryl because it messes with Emma's mind. But with her breathing reaction yesterday, they switched back to Benadryl since it works better...and we want Emma I am totally fine with dealing with weird thinking from her in the meantime.

I've since asked Emma, and she doesn't remember that potty trip at all.

Oh, and I also learned something I thought was quite interesting. It also surprised me quite a bit because I assumed it would be the opposite. But, to prep for transplant (with the chemo and ATG), it's a harsh prep compared to "normal" transplants. There isn't actually a normal, but compared to average, what they have FA kids go through to prepare for transplant, it's pretty rough. The nurse said she doesn't know why it's that way, but that it is. Same with MDS/AML kids and stuff (which makes sense considering FA kids are really prone to those types of illnesses too).

The doctors did rounds and checked her out. I have to say that they are really nice people. Granted, I do feel a little bit odd standing out among everyone and being the only one with a computer on a computer cart. I've asked them if they can get me one so I can roll mine out with my laptop on it and pretend to be like them. It's really tempting to the do "Doctor" nod at one "Doctor" nod at another, etc, etc, until I say it to all of them...even the ones that aren't doctors.

So, the plan for today is to give her Fludarbine, which she was also given yesterday. It's a chemo that runs for about 30 minutes. They are doing that right now. Actually, no, I think they have finished that. I'm a little too lazy to get up and look.

Then they'll give her...uh...I forgot. It's Mesna to protect her bladder from the next chemo. The next chemo is Cytoxin. After that they give Mesna again...and then again...and again...and again. The medication is supposed to work pretty good at protecting her kidney/bladder.

Then after that, it's time for the Liquid Evil (ATG) again. This time they are prepping her with Benadryl, Tylenol, and hydrocortisone (steroid). They are giving her a double dose of the steroid in hopes of helping her not have a repeat of the breathing problem. Then four hours into it, they'll give her all those meds again to ensure she'll be fine breathing. They are also running the ATG for 12 hours instead of 8 hours.

Dr Davies (our actual doctor) saw Emma and said she looks great! She's doing everything she's supposed to do. All of these (awful) things are the steps we need to take to ensure the transplant works. We have to get rid of her immune system, chasing down all the white blood cells (using the ATG) so there isn't much of a fight when the new marrow/cells are given.

I requested to be allowed to destroy the chemo/ATG bags, just for emotional reasons, and they all thought I was kidding...they mentioned something about it being toxic and all...whatever! (just kidding)

Anyway, time to snuggle with Emma. This photo is of them getting chemo going. They wear a special blue gown over their normal one and then eye protection. It's such a "great" feeling to see all that toxic stuff going in her.


Emma has had fludarbine and cytoxin, both are chemos, plus stuff to protect her liver and kidney/bladder, as well as meds to help with nausea.

She is currently on the Liquid Evil (ATG). They prepped her with Benadryl, Tylenol, and steroids in hopes of stopping any reaction. Yesterday, when she was having trouble breathing, they gave her steroids too to try to stop the reaction. So, this time they are giving it in advance and double the dose.

She's responding much better to it and hasn't had any issues. She has a low fever but nothing concerning. Her heart rate is much lower too.

She has a rash on her arms and legs...we think. They got super itchy for her and it seems they are turning red and splotchy, but it was a little hard to tell since she scratched all over it. A rash would be totally normal...though, it's still not fun to see.

She's been asleep 95% of the time, it seems. She whimpers in her sleep. When she does wake up, she's on the verge of tears and is always distraught. This could easily be because of the Benadryl. She often reacts to it in this way, which is why we tried that other medication instead (sounds like "ataracts", like "cataracts"). But it didn't work as well and is part of why she ended up having a reaction like she did. So, we're back to Benadryl.

She looks a little swollen and her skin isn't the right color. The swelling could be from the steroids and the fluids. The coloring could be a type of rash thing from the ATG.

She's thrown up twice today...I think. And she has so much fluid going through her that she wakes often to go. I'm afraid to leave her because last time I walked out for 20 seconds, I came back to her throwing up. (This causes issues, as I have to go to a different room to eat and use the restroom.)

All of these things are normal. I just keep telling myself that! I'm apparently really tired, so I'm going to take a nap. Emma has looked about like this for most of the day.

Emma has slept most of the day until around 6pm. It's definitely been a better day than yesterday. She woke up this evening and was really wanting to talk to family. She FaceTimed her dad and brother in TX. Then later, Kyrie (cousin) and Ella (baby sister).

Emma has been feeling pretty sick when she's awake. Prior to this video (of when she FaceTimed Ella and Kyrie), I'd been sitting by her for quite a while, trying to calm the nausea or at least hug her through it. 

This isn't the most exciting video. Just a little glimpse into what her waking moments are like today. She still tries to play through it.



Thanks for all the messages and questions about how Emma is doing. It's been a busy day with very little down time, but I've been trying to update and keep not getting it done.

Emma's felt crummy most of the day, with the exception of about two hours surrounding music therapy visiting her. She was happy and almost her little self again. But that wore off as the nausea kicked in again and she's pretty miserable right now. She's drinking some chicken broth, or "chicken bra", as she says (not on purpose).

This morning she ran a higher fever, but, last I heard, the fever is gone. She's doing the same as the two days before - fludarabine, then cytoxin, then ATG. Today they added cyclosporine, which is supposed to help with preventing GVHD (graft vs host disease). They also give meds to help with protecting her liver and kidney, as well as helping her deal with the nausea. She's still peeing really well - which is something they keep an eye on. The way they talk, I almost feel like I should get her an award for her high urine output.

She's been pretty angry today. We've decided we are going to go to Disney World when she's all better and allowed to return to the world of normal living (in at least a year). So, I use that as encouragement to help her keep her focused. It's where she went for her Make-A-Wish, and it would be special to go back there again. But, anytime she tells me she's angry, we talk about it, accept that's how she feels and that it's OKAY to be angry. (There's no way I'll be adding to her stress by trying to get her to not be angry. I'd be angry too!)

We're very homesick. It's hard to be away from our most favorite people in the world.

This hospital is fantastic. The people are fantastic. Pauly the clown facetimed with Emma yesterday because she really wanted to see him. Fingers crossed he'll be able to actually visit her here one day.

Today music therapy came in. If I have some time, I'll post some videos, but here's a photo of Emma listening to the awesome Beth singing and playing music for her. I almost cried through all of it.

It's hard to see her feeling so sick. We try to remember what the purpose of all of this is - it's so we CAN be together as a family again and so that we CAN have Emma here for a lot longer than we would otherwise with a HIGHER quality of life than she had before. It's just really hard to see her suffer so much through it. As I watch her little body, watching her tears, watching her sick, I think that out of all the moms in the world, I get to be hers. And for that, I'm forever grateful.

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