Wednesday, June 12, 2013

Looking For The Positive

I didn't get my 'catch up post' quite finished, but I decided I'd at least post the results from Mason's biopsy on Monday. 

I'll start with the positive..... 

*Mason's echo looked great! His heart function is good and does not appear to be affected at all by Mason's recent rejection these last few months.

*The rejection is not any worse then it was in March and April, with a very slight improvement in the cellular rejection.

*Besides a little drop in energy (most likely due to the recent Rotovirus) Mason seems just fine. You wouldn't know he's in rejection!

*(This doesn't have to do with the biopsy, but it's something positive) Mason's tummy seems to be much better and finally on the mend from the horrible Rotovirus.

And, the not so positive.....

*The biopsy results were the just about the same as the last 2 times :( ....for those of you who know the rejection scale, this time his results are "C2 V3 ISHLT 1R pAMR 2" and the last two times they were "C3 V3 ISHLT 1R pAMR 2"

*Basically Mason is still experiencing cellular and vascular (antibody mediated rejection).The vascular is slightly worse than the cellular. It is on the mild end of rejection, but still concerning.

* Mason's DSA's (donor specific antibodies) are still quite high. Most likely, this is what is causing the antibody mediated rejection.

*Since Mason will not be coming off the steroids..... he will not be allowed in any public pools this summer. (Makes summer time activities a little tough with 4 older siblings!)

What is the plan?....

*Mason will stay on a low maintenance dose of steroids. The Tx (transplant) team does not want to go back up on the high dose of steroids and then taper down again, because they feel that Mason is in chronic rejection and the higher doses of steroids may not help. Higher doses will just make him all the more susceptible to infections, which in turn causes his body to make more antibodies.....which he does not need right now! 

*The team will watch him closely with frequent blood draws to make sure he is on optimal doses of his other immuno-suppressants, Celcept and Prograf, and bi-monthly echos.

*Mason will continue his monthly IVIg treatments.

*Repeat biopsy in August.

*We are also consulting with Mason's Tx team at Lucille Packard Children's Hospital (Stanford). We are trying to get our insurance to cover a very specific antibody test that only Stanford has and that is what was used to follow Mason's antibodies for the first year post transplant.

For now we will move forward dancing in the rain during this storm, appreciating and enjoying life, praying for this rejection to go away. In fact, Mason has been able to join in a enjoy Strickland Cousin Camp this week, celebrating the friendship of 43 cousins!

SC = Strickland Cousins
 Our amazing 5 kiddos

Mason with Cousins Clayton and Rachel

The Strickland Cousin Clan

Look for my 'catch up post' soon about what we've been up to the last couple of months. Thanks for your contiued love, support, and prayers!  


Keri said...

Prayers from CT to Mason!! Hang in there, Miracle boy!
I think your kids are the only ones we know with more cousins around that my kids all summer - 25 under Jocelyn's age! :) And Kaitlyn looks the oldest. There is NOTHING like family and these kids are so stinkin cute.
love it.
and love yOU!!!

madelyn said...

You are in our prayers. This road is hard and filled with unexpected turns-just keep moving forward one day at a time with eyes firmly on God. We are praying you can enjoy the summer, even without the pool.