Monday, August 19, 2013

The Ups and Downs while we “Wait and See”

Brad captured this great picture of Ryan at Lake Sawyer yesterday.

The last two weeks have been a series of ups and downs.  Twice, Ryan’s platelets registered over 40,000!  This was so exciting!!!  Until… his numbers took a nose dive to 14,000 at each of the appointments that followed.  However, we did get to skip platelet transfusions at each of the appointments where it was at 40,000. This means he may be trending toward platelets once a week instead of twice a week.

Last Thursday was the last 40,000 count, and Ryan got to skip a platelet transfusion (although he did get another red blood transfusion).  I expected at today’s appointment that his counts would follow the same trend as the last two weeks and be at 14,000.  Unfortunately, they were at 12,000.  I know it is only a difference of 2,000 but any little thing that feels like a setback is increasing my anxiety level these days.  The count is also only 4,000 higher than when he was initially diagnosed at 8,000 at the end of June.

I am starting to get impatient and I wish we were seeing better progress.  I know that this treatment can be very slow to “kick in”.  We really have to wait until about three months post ATG treatment to get an idea of whether it is working to put him into remission.  (Three months will be mid October for those who are counting.  Just in time for Ryan’s 5th birthday.)

Note: I have included graphs showing the trend of Ryan’s labs below.  I will try to include updated graphs about once a month.

It is so frustrating not being able to do anything but be patient and “wait and see”.  It is in my nature to want to hurry up and find something to fix this, but no matter how many hours I spend reading, researching online, quizzing the doctors, and analyzing the medical histories of other AA patients with blogs, I have to resign myself to the fact that I am probably not going to be the one who stumbles upon the cure for this dreadful disease while searching the internet or watching reruns of House.  I truly just have to be patient and take things a few days at a time.

We were finally able to get Ryan out of the house this weekend for a short hike.  He has been too fatigued this summer to do much, other than be a couch potato, do art projects, or have a few brief visits to school.  His doctor has decided to increase his threshold for red blood transfusions so that he doesn't get as exhausted and have other side effects in between transfusions (anger, loss of appetite, stomach pain, and mental changes).  This has really helped and, for the most part, he was full of energy this weekend.

We did a short hike down to Lake Sawyer and then walked the shoreline for about an hour or so before Ryan announced that he was tired and wanted to go back.  On the way back, as Murphy’s Law would have it, Ryan tripped and fell hard on his left knee.  He started crying and blood started trickling down his knee.  Within a few minutes, a large purple “goose egg” formed.  Luckily, the blood was from some surface scratches.  I could see it was watery from low platelets, but at least it wasn't gushing.  Ryan was a trooper and limped back to the car, where I cleaned and bandaged his knee.

I wonder if his knee injury could have burned up those 2000 platelets that I was expecting to have included in his count today…?  Last week, the doctor explained that platelets can get “burned up” doing their job, so I guess it is possible.  We will have to wait and see what next week’s counts look like…


  1. Hi there - connecting with your blog via Jen at Band of Mothers against AA facebook page. My son Julian was diagnosed with SAA in December 2010 at age 3. Happy to report that despite many ups and downs and too many tough days to count, he's two years post-bone marrow transplant and about to start 1st grade. (All thanks to a mismatched, unrelated anonymous donor from the national registry.) Please feel free to email me if you want! It's a long road, don't travel it alone!

  2. Hang in there! As another VSAA mom, I know we often hang on to those numbers like precious life lines. It is a long hard road. My son is 20 months post ATG, he is not a good BMT candidate so we continue to play the numbers game. We have just recently gone to 1x/month checkups. If you want to connect - I'm on facebook (Laura Anderson Mort)

  3. Hi my son has been recently diagnosed with AA