Macy

Macy

Monday, January 11, 2016

Bone Marrow Biopsy Results & other Appt's

I realized today that I never updated on Macy's appointments last week. (Oops).

On Monday Macy had her bone marrow biopsy.  She fought them putting the IV in, but was fine after that. The nurses did a good job getting the IV in on the first try even after blowing her vein. They had that newer technology where they can scan the arm and it shows you exactly where the veins are so they can't miss. Pretty neat! The procedure went well, and Macy was back to jumping around later that day.
We received her labs that day, and surprisingly her counts were better than they have been in OVER A YEAR!!!! For her they were excellent. 
WBC 6.25
ANC 1290 <~~~~~her ANC hasn't been over 1,000 in a year
Hemoglobin 11.9
Platelets ---they counted these manually so they estimated between 90,000-110,000 <~~~~they haven't been over 70,000 in a year 

Her counts are freakin awesome for her. I am hoping that since this is her second year in school where she is exposed to so many germs that maybe her bone marrow is stabilizing for a little while. 

Later last week we got her biopsy results back and it was also really good news. Most importantly there is no sign of leukemia at this time. With Fanconi Anemia Macy will go into bone marrow failure and need a transplant whether she gets leukemia or not. And having FA makes her highly susceptible to developing leukemia. However, children with FA that develop leukemia before their transplant have much lower survival rates; which is why it's important to transplant before this happens. Her cellularity is at 40%. Cellularity is the amount of blood that your bone marrow makes (how many blood cells you have that make up your WBC, platelets, RBC, etc.). In the typical person your cellularity is usually 100 minus your age. As you get older your cellularity gets lower (which is why the elderly have a hard time fighting infection or healing after injury). At 40% it means Macy's body makes the same amount of blood as a typical 60 year old woman's. And she's 5 years old. Normally this would be alarming to someone; but for someone with FA it is expected and we are happy with that number. Especially since it hasn't gone down at all from last year's biopsy. 

So this means (and I don't want to jinx it) that we should be able to put off Macy's transplant for another year. Or we atleast shouldn't need to worry about it until next fall/winter. Now if for some reason at her next blood draw her counts drop dramatically and continue to fall a lot things could change. But I really feel like she's stable for now. One thing you'll find with a lot of FA families is that a lot of us don't make "plans" more than 9-12 months out. This is because a year from now things could be entirely different. Your child could be doing ok still, you could be in Minnesota, Cincinnati, or New York in the middle of transplant, your child could have developed a tumor or have had transplant already, or have passed away. You just don't know. So you take the time you have and run with it!!! I'm pretty confident we are good for this year. So we will focus on that, and run with it!

On Wednesday Macy had a dentist appt. For most kids this isn't big news, but one of the main reasons that life expectancy is so short for those with FA, EVEN if they received a successful bone marrow transplant is they will get cancer. Not in their 40's, or 50's or beyond. But in their teens, 20's, and the really lucky ones in their 30's. I only say lucky because most do not make it into their 30's. We are seeing more FA patients reaching their late 20's and early 30's and this is awesome. But it's still not the majority. There are a few known people that have made it to their 40's and 50's + but it has only been a handful at best, and almost all of them are mosaic. (Mosaicism is when a person has FA cells but they also have normal NON-FA cells in their body too). Anyways, point being the majority of the time the cancer that FA individuals get is Head and Neck Squamous Cell Carcinoma (aka: head and neck cancer) and it almost always starts in the oral cavity as oral cancer. So dental hygiene is extraordinarily important for Macy. She is 5 years old and already uses an electric toothbrush, flosses, and uses a tongue scraper. Her teeth and mouth are looking great right now. Her dentist said she has her 6 year molars on the bottom already. And her two middle teeth on bottom are loose!!! My reaction was "wow, already? She just turned 5!"  But Mother Nature is gonna do what she's gonna do when she's ready, I guess. Macy is excited about the tooth fairy! 
Macy loves the fish tank at the dentist. They have a Nemo and a Dory in there too! :)

Macy's last appointment last week was with an ENT (ears, nose, and throat). In 2015 she had 3 ear infections. Which was weird because she's never really had one before; even as a baby. I'm wondering if she's getting them now because of her counts. But she does have chronic fluid buildup behind her ear drum which is causing mild hearing loss even when she doesn't have an actual infection. Her brothers have also had a bunch of ear infections this past year so they will be seeing the ENT on the 21st, then we will be making an appointment for all 3 of them to get tubes put in. Fun stuff! The tubes should help a lot with the difficulty she is having hearing due to the fluid, because it'll keep it drained out, and will also prevent infections. 
Macy getting her hearing test 

So that's pretty much everything for now. I am hoping Macy doesn't get sick again to where she ends up in the hospital so we can go until March without a blood draw. She will get put under for the ear tube surgery, but other than that she has no appointments until March. :)

Take care
Jenn