I'll start with a quick update on Mason. After finally kicking that awful Corona Virus ( which lingered for a few weeks, Mason has been doing great! At Masons last transplant clinic visit 2 1/2 weeks ago Dr E discussed with us her concern for Mason's chronic antibody rejection. After his biopsy in March showing antibody rejection again, she met with the pathologist that has looked at all of masons biopsies in the last 12 months, to have him compare them all. What they saw is that with this mild, but chronic rejection, there has been a slight bit of scar tissue building up around his heart. And, with each biopsy a slight bit more each time.
Concerning? Yes! We definitely don't want this to continue enough to cause Coronary Artery Disease and damage Mason's special heart. So what's the plan? At first we had discussed using an IV medication called Retuximab to additionally suppress Mason's antibody production. The up side? The hope of getting rid of this antibody rejection! The down side? Mason would be even more immune suppressed than he already is, and just one infusion could last two years.
We basically had decided this was a GO..... to deal with additional immune suppression, and conquer this chronic rejection. We were in the process of getting it approved by the insurance when Dr E came to see Mason and I during his IVIg appointment (a week after our discussion in clinic). about a change of plans. She had just returned from an annual transplant convention where she had visited with Mason's transplant doctor, Dr B from Stanford, and another doctor who is the head pediatric cardiac transplant doctor at Boston. She discussed Mason's situation with them and they both advised that we hold off on the Retuximab. They said they didn't see the need to further suppress him at this time, especially since the rejection hasn't affected his heart function at all. They suggested just to keep a close eye on his function (at least monthly echoes), keep doing his monthly IVIg, and re biopsy in a couple months (which we are already have scheduled for mid June). So, that is our plan for now. I'm so grateful she visited with those other doctors and they could all combine their great minds to come up with a good plan for Mason!
On a side note, Mason was supposed to have his next back rod expansion surgery in April.....but he's playing t-ball right now and that's absolutely more important!! We saw Dr. Smith (his orthopedic doc) at the end of March and he said we'd be fine waiting a couple months so that Mason could play t-ball and be a normal kid for once. And let me tell you, it is so fun and so great to watch him playing ball with his little team!! Just wait until next time when I post some pretty fun pictures!
Here's a little picture summary of our April.....
It is true, I officially now have 2 teenagers in my house!
Hard to believe my Preston turned 13 on April 5!
He is my easy going, always smiling,
lacrosse loving, ski addicted, friend to all,
fun brother, and my oldest son.
Thanks Preston for being a good example!
Happy happy birthday!
I love you,
A little birthday breakfast before a day skiing at Alta.....
and, a rice krispie cake (by request) with cousins
Christian and Peter, after a fun day on the slopes!!!
Preston continues to love playing and
mastering his lacrosse skills.
Go Strickland #15!!
But, he has had a hard time giving up some spring ski time
on the slopes, for lacrosse practices and games!!
If Preston is not playing lacrosse or skiing, then he's
probably out on the tramp practicing his flips and stunts!
After Mason's angel heart birthday, Preston's birthday, and
my birthday (shhhh, I like it to sneak by. I'm getting old!),
came one of my favorite holidays of all.....
I love Easter!
Easter brings a feeling of new beginnings, sun shiny happiness,
tulips and daffodils, family fun time, excited kiddos, egg hunts,
and most importantly; gratitude for our Savior's Atonement.
It is because of Him we have been given so much!!
We started out our Easter weekend with dinner, an egg hunt, and of
course an annual squirt gun water fight at Grandma SanDee's house.....
Then Sunday morning, the Easter Bunny brought
a few surprises for the kiddos.....
All dressed up and ready for Easter Sunday at church,
but it was too windy to take a cute picture outside.
(It's always quite a project to get a decent picture!!)
Easter evening we enjoyed some more family time
and dinner with cousins at Grandma Marilyn's house.
(And better whether for a couple more pictures!)
Easter is always a very special, emotional day for me.....
and even more so since the Easter 4 years ago when
Mason received his new heart! Such great symbolism of
Easter was the day he received his donor heart from an
amazing family out their somewhere. Their selfless act gave
our Mason a new beginning and second chance at life.....
Just as our Savior was resurrected to give us all the opportunity
to enjoy eternal life. There is no better Easter gift!!
I hope you and your family had a wonderful Easter together!
Thanks for checking in on Miracle Mason!