Today Emma had a couple appointments. She had ultrasounds on her liver and kidney(s) to start off the morning. Then we ended with an appt with the hematologist.
Here she is eagerly posing for a photo while we wait to be called back to have the ultrasounds done:
She laid like this the WHOLE time he did the ultrasounds. Not because I was taking pics either. She did this well before I pulled out my phone. She just wasn't in the mood at all to have doctor appointments.
We have no idea what the actual results are! He said he'd get the results to the doctor by tomorrow. They are looking to make sure her liver is okay from the androgens. They were also checking out her kidney(s) to make sure it/they were okay - just a routine checkup. No reason to think anything is wrong with it/them.
Speaking of which, when she was born, they told us she had only one kidney. When she was four months old, they said she had two kidneys that were conjoined on her right side. Then when she was a few years old, they said she only had one kidney. This time, I asked the guy, and he said she might have one or two kidneys. It's hard to say. haha! Either way, she for sure has one kidney. If she has two, it's completely stuck to the other one, making it appear as one large one.
Once we were done with the ultrasound, we stopped by the restroom, and there was this door in there, as seen in the photo below. It says, "Caution: Radiation Area". That would be the first time I've ever seen a door like that in the bathroom! Makes me (a) feel really safe, and (b) wonder if I am going to develop SUPER POWERS!!!
Here we are in the whatever-the-name-of-this-area-is-called, and Emma is eating. Actually she was hiding behind her sandwich baggy - her see-through sandwich baggy. Usually she doesn't mind having her photo taken, but a couple times today, she kept hiding.
We made it up to the hematologists about 30 minutes early. Here we are hanging out, having a party.
And, now her being silly. We're not really as shiny as the photos might lead you to believe we are.
So, now to her hematology appt:
She weighs 50 lbs!!!! Those androgens really do their thing. They give her an appetite, she eats like a little pig, and she's gaining weight. It's crazy how much she has grown since we started her on them. I used to think that means she'll end up taller than she would otherwise, but the doctors have said that it closes her growth plates quicker, so in the end, she won't end up any taller.
Katrinka, the awesome phlebotomist came in to do her blood work. I really didn't want to force Emma. I wanted her to feel like she could choose to do it...too bad there is no "or not", in the sense of choosing to do it or not. As I mentioned, Emma was really extra anti-doctor appointments today. She absolutely did not want to get a poke. She did not want to hold her arm out. It used to be that I could gently pull her arm out and hold it for her, while trying to verbally comfort her. But now she is so strong, that I seriously can't do it! I'd have to put my foot on her shoulder and pull with a whole lot of might to get her arm pulled out. And, putting that much effort into getting her arm out just doesn't seem right.
I tried to gently pull her arm, to see if she'd willingly give it, but she refused. Katrinka tried too. I think she thought Emma was a little bit stronger, like I'd mentioned, but she was probably thinking I'm just a wimp (I can look pretty wimpy) and that it wasn't too bad. So, she tried to pull Emma's arm out, and she responded, "Oh my gosh! She is really strong!" which made me start laughing. She wasn't having any better luck than I was.
Anyway, Emma finally grudgingly got her arm out. She was very upset, and then, of course, the poke didn't go so well. She got the vein right away, but then it stopped for some reason. So, there was digging and then another poke. Emma was not happy. None of us were happy! But at least it wasn't 5 pokes and lots of digging with each, right?
After this time, I seriously began wondering about getting her a port, and when an appropriate time would be to do that. I'm guessing closer to transplant? She's getting poked at least every four weeks, unless she gets sick, and then it's more often than that. It just seems like it would save her vein and save her from so much emotional distress.
Now on to the results...
WBC: 2.0 (was 2.0 last time too)
RBC 1.88 (was 2.06)
HGB 7.3 (was 7.8)
HCT 21.4 (was 23)
Platelets 19 (was 26)
ANC 700 (was 550)
MCV 113.8 (was 111.30)
Quick summary of what that means is that she's low on her red blood cells. They are in transfusion ranges. But since she is going to have a bone marrow transplant, they really don't want to transfuse because the body can start developing antibodies, which would causes issues with transplant.
It also means that her red blood cells are quite large, her bone marrow is stressed (MCV is kind of like a gauge for how stressed the bone marrow is...the more stressed, the higher the number. I think normal is under 90).
Her platelets are super duper low. They are also in transfusion ranges, but platelets only last for about two days and then are gone. Meanwhile, her body would be building up a resistance to them via antibodies that I mentioned before. So, we won't transfuse with platelets unless she starts bleeding.
Speaking of bleeding, she's no longer allowed to jump on the trampoline because it's too much of a risk of causing her to hemorrhage. She has to be careful with anything she does that she takes precautions to prevent herself from getting hurt.
He gave us some medication that I can't remember the name of. It's typically given to hemophilia patients to help their blood clot. If she starts to bleed (like a nose bleed or something), we should give it to her to help it stop.
He also said to keep an eye out from intense headaches, which could be a sign of her bleeding inside her head. Also, if there is any blood in her stools, it's likely she is internally bleeding. In those cases, we would need to get her transfused to stop the bleeding.
We don't have any new news on bone marrow matches! I am eager to know. Our local hematologist asked how many potential matches we had. I'm pretty sure they told us we had 30 potential matches (meaning, the testing was more basic, and now they need to do more detailed testing). He says he's almost positive, from his experience, that out of 30 potential that she'll for sure have a match.
I also asked him if we were to transplant Emma this summer, if it would be likely that we'd be able to get everything in order fast enough to get that done (like getting the donor to donate, getting insurance squared away, getting everything organized that needs to get organized) and he said that no problem we should be able to. He highly suggested we get going to visit the transplant center and have them check Emma out, so we'll probably be doing that soonish. I'm thinking we'd need insurance approval first. So, however long that takes.
We aren't sure when we'll transplant. We do have the option to increase the androgen dose. I explained the side effects to Emma, and since she is going to transplant, she'd prefer to just transplant instead and avoid any further side effects (which have been very minimal so far). So, if we don't increase her androgens, I'm guessing her counts will continue to fall. I don't think there's much choice in putting it off too much longer. We're still working on making a firm decision on when to do it. Plus, we need to talk to the transplant doctor about it all.
Anywho, so that was that. If there is anything interesting to share about her ultrasound results, I'll be sure to do that!
I hope everyone reading this is doing well! :)