It’s not really that exciting of a story, but I’ll do my best to make it sound exciting and last way longer than it needs to.
Today we left our hibernation and went to see Dr “Oldman” (Goldman) to have Emma’s routine blood work done.
In preparation for the 45 minute drive, I covered TS with towels since he almost always pukes after a very long drive. I encouraged him to look out the window if he felt sick in case it helped. I was excited when we got to the hospital and pulled him out that we was puke free!! YES!
But Violet wasn’t. She puked on her shirt. That’s the first time she’s ever done that. I think that proves that there is a puke quota that will be filled no matter who fills it. I was able to get her shirt off of her without getting very much of it in her hair, and we went into the hospital with a shirtless baby (which got lots of looks!).
When we got to the elevator, TS kind of spazed out. For some reason elevators scare him. He has a hard time actually stepping into it. Maybe he looked down that crack and saw all the empty space or something.
I had already gotten on with the baby. Emma was almost on when TS started going the other direction. A nice lady held the elevator open for us while I chased & grabbed TS and tried to get him on and make the elevator seem exciting. The lady helped too. TS seems almost convinced that it’s fun. It’s always fun to see how people around try to help little kids feel better!
Anyway, we got up to the hem/onc floor and Tyler was waiting for us. He took work off to come, which he hardly can ever do.
Emma weighs 26.5 lbs now. Amazing! Our little 7 yr old is going to break a scale soon. And she is 39 inches tall.
When the phlebotomist came in, she said it was just a finger poke this time. She let Emma pick the finger. Guess which one she chose? Yep, the middle finger, which she held up nice and tall as though she was flipping the lady off. It was funny. Emma has no idea what that means, of course.
She didn’t cry at all through the poke! Yippee! She still talks about how Wesley (her FA buddy) doesn’t cry when he gets pokes, so it’s fun that she thinks about that…and maybe that’s helping her get over her fear some.
Then we talked to the dr about some swallowing issues Emma is having. She always puts her hand to her throat when she swallows (has been going on for weeks) and holds her head a little odd as though it’s hard to swallow or uncomfortable or something. She does it without thinking. We might go see a specialist about that in case she’s having some issues (any of the FAmily reading this, if you have had similar experience please share).
We also talked about starting Emma on androgens (steroids) to hopefully help boost her blood production. Transplant is a very scary thought to us, especially since FA kids with lots of abnormalities statistically have a poor outcome from a transplant…so we’d like to try other treatments for as long as we can.
Her blood work normally takes 10 minutes to come back, but it took maybe 30 minutes. Turns out once platelets go under 40, it’s considered to hit a critically low number and the lab had to call the dr for some reason.
So, for all you other FA families who haven’t reached a critically low platelet count, it appears to do that once it goes under 40. Her platelets are at 39 now. We’ll be going back in six weeks to test again, and if they are lower, we’ll be starting her on the androgens right then. At 20 they generally will transplant. We’re wanting enough time to give the androgens time to work. Or if this specific one doesn’t work, then we want time to try other ones.
We’ll be trying Danazol which appears to have much fewer masculinizing effects than other androgens. That’s something we’re concerned about since Emma is a girl. We’d like her feel comfortable with herself. If we can, we’d like to avoid any of that for her. So, lots of prayers that when we start the Danazol that it will work so we don’t have to try another kind!
Here’s the rest of her counts (normal range is in parenthesis):
WBC 3.7 (4.5-11)
RBC 2.78 (4.00-5.20)
HGB 10.20 (12-16)
HCT 29.20 (39.2-46.00)
MCV 105.40 (78-102)
PLTS 39 (130-400)
ANC 1960
Then we got yummy Chinese food and went home. Emma said she actually had a good time at the doctors! The dr sat in there with us for a while and just hung out. He quoted “Where the Wild Things Are” to TS and just had fun with the kids. He doesn’t act like a normal dr. He’s so caring and kind. I’m so glad Emma has a dr like him. Their whole office is great. They seem to really care about the child and not about getting you in and out as fast as possible. Makes all the difference sometimes;-)