Friday, November 4, 2016


Last summer (in the last post) we ended up having to cancel Macy's stomach surgery because her ANC was too low.  ANC is the 'absolute neutrophil count' which is a special (and very important) type of white blood cell that fights infection.  The typical persons is over 1500, and when they get sick it goes up higher because their body is fighting the infection.  Macy's was 400 the day before her surgery (and she wasn't sick), so we couldn't risk her getting surgery and getting an infection from it. Anything under 500 isn't really high enough for your body to be able to fight it. That's why when Macy gets sick (those with FA's ANC typically goes down when they get sick) and her ANC is under 500 she has to be hospitalized and put on IV antibiotics. 

Over the summer Macy had a few ENT appointments and we found the tubes she got put in her ears in February are not doing anything anymore.  One is coming out already, and the other isn't functional.  (sweet!) So more than likely she will need to get tubes again. Also, due to her FA one of her ear canals is extremely narrow (pretty common in FA kiddos) so she gets a ton of earwax built up in her ear.  It starts to affect her hearing and her speech when this happens so we've been going to the ENT to get her ear wax removed with special equipment he has. 

Macy's counts have continued to drop as well.  I'll have to look back on here to see where they were in my last few posts, but it feels like they are much lower now.  Her typical counts now are in the 30's for her platelets and her ANC has been 600-700. This seems to be her new normal which is putting her within grasp of transplant.  The ideal time for transplant is spring.  This doesn't mean that's when hers will be, but if you had to pick the 'perfect' time of year for it that would be it.  It's the least amount of school missed, and not during cold and flu season. It also makes travel out of state a bit less stressful. She will be getting her next bone marrow biopsy to check for leukemia/pre-leukemic cells, and cellularity (the volume of blood/cells her marrow is actually producing) in the first week of January. This will tell us a lot.

Since her last surgery was canceled Macy's stomach has gotten much worse.  Basically what happened was a year ago from last Feb. (Feb. 2015) we were given the ok by Macy's GI doc and pediatrician to remove her G tube (feeding tube) for good.  We were able to do it at home, and they said in almost all cases it will heal and fully close on it's own. We thought that happened.  We didn't notice any problems with it for about a year. Then last winter/spring once in a while we noticed where it healed on the outside of her body (kinda looks like another belly button) was getting a little bit of blood on it.  It looked like it was getting rubbed and irritated. But it only happened once in a great while, and it was a tiny spot. Then it started happening more and that is when we went into her GI's office and scheduled the surgery originally. Since then it has gotten to the point where it squirts out stomach fluid mixed with blood on a daily basis. It's ruining all of her clothes.  We change the bandage every day, but by the end of the day it leaks through onto her shirt, and she ends up with a wet circle on her shirt that turns black from the gastric juices. I'm not really sure why all of a sudden it's getting like this after being ok for a year.  Maybe it's because of her counts being so low now.  I'm not sure.  But we were able to reschedule her surgery for next Monday, Nov. 7th and I can't wait for it to be over. I just hope she doesn't get sick between now and then. We will get her bloodwork on Saturday to make sure her ANC is 500+ and hopefully we will be good to go. We just need to get through school tomorrow without her getting sick from someone. (please!)

That's most of what has been going on for now which is a good thing. When we start our transplant journey I'll be posting pretty much every day.  Mostly for my own benefit in terms of remembering everything, but also for family and friends to know what is going on as well.  It's difficult to update so many individuals.  It's emotional and takes too much time when you're in the thick of things.  So right now, I'm very thankful I don't need to update that often.

take care,
                Emmet (2), Macy (5), and Reece (2)
****Macy has since turned 6 (Sept) and the twins 3 (Oct)

1 comment:

  1. We're thinking of Macy! (and you all of course). Hope all goes well.