Wednesday, August 7, 2013

Biopsy Results

Honestly, because Mason's heart pressures were higher yesterday I was kind of expecting his rejection to be worse..... but it's not thank goodness. The Bummer is it's about the same. (The path score is C2 V3 ISHLT 1R pAMR 2.) It's mild rejection, mostly antibody mediated, but concerning because it isn't getting better and we've been treating it since mid March. The plan for now is to keep Mason on a low maintenance dose of Prednisone (steroid), to keep him on optimized levels of Prograf and Celcept (immune-suppression meds), and continue the monthly IVIg treatments. The team may change the plan when they get Mason's DSA (donor specific antibody) blood work back at the end of the week. If his antibody levels have gotten higher then the transplant may be more aggressive with his treatment.

I am grateful that with this rejection Mason's heart function has remained good, stable, and unaffected. Hopefully his body can get rid of the rejection soon and his little heart will be completely happy again. Thanks for all your love, prayers, and concern.

To go along with my post on Monday I just want to say PLEASE hug your kiddos a little tighter and  little more often because you never know what tomorrow will bring!!!

"Always kiss your children goodnight,
even if they're already asleep."
~H. Jackson Brown, Jr.

"People say you don’t know what you’ve got 
till it’s gone. 
Truth is, you knew what you had, 
you just never thought you’d lose it."
~author unknown

Monday, August 5, 2013

Today's Biopsy and A Mother's Full Heart

Mason and I checked in at 6:30am this morning at Primary Children's Medical Center for Mason's heart biopsy. This is a follow-up biopsy checking on his rejection he's had since March. We're hoping and praying the rejection is gone!!! Mason's been doing really well and has been having a fun summer (a post to come in the near future with lots of summertime fun pictures!). Now we just need a healthy biopsy!!! I will post tonight or tomorrow with biopsy results. 


The last few weeks I've had a heart full of emotions. It is a tremendous blessing in my life to be a part of the "heart world". I meet amazing strong courageous people who I learn from all the time. As I follow their journeys I begin to love these heart children as if they were my own. Some of their experiences are so similar to ours with Mason, but yet each very unique. Seeing what they go through and what they accomplish always hits so close to home and never ceases to tug at my heart strings.

I want to share with you a little about these two special little boys. With a heart full of bittersweet emotions and tearful eyes let me introduce them to you.....

Paxton served a miraculous 3 year mission here on earth 
and recently returned home to our Father in Heaven.
Paxton's heart issues were small compared to everything
else that made him special and unique. He was born with
chromosomal deletion 7q22.3-31.1. They say he is truly one
 of kind! He surpassed all scientific and medical expectations.
His story is absolutely amazing! Mark and I had the opportunity 
to attend Paxton's funeral, or rather..... his life celebration. I
believe it to be a wonderful gift in my life to have known 
Paxton and his sweet parents. I cried a lot listening to his 
parents talk about him at the service, because so much of it
 is just too similar to my sweet Mason's miraculous journey
and I know his family is going to miss him each and every day.
It made me realize once again just how delicate Mason's
life is and actually how delicate just life in general is!

Elder Rasband (Paxton's Grandpa) and Elder Holland (A dear
family friend),  general authorities of our church (Church of 
Jesus Christ of Latter Day Saints), both spoke at Paxton's 
life celebration. As they spoke about the promises of the gospel
that Paxton's family will be together forever and that all of us
are part of God's plan a spirit of peace and comfort filled the
room. I am so grateful to have been there and to strengthen
by belief that families can be forever. I know that Paxton 
someday will reunite with his sweet parents and brothers.
Please remember Paxton's family in your prayers that
 they will be comforted as they are missing their little Paxton.

Thank you Dave and Shannon,
 for sharing Paxton's life journey with us!

I saw this quote framed at Paxton's viewing
and love it:

“Promise me you'll always remember: 
You're braver than you believe,
 and stronger than you seem,
 and smarter than you think.
 But the most important thing is,
 even if we're apart... I'll always be with you.” 

~A.A. Milne, Winnie-the-Pooh

Also, Elder Holland said this
in his talk that day
( and I love this one too):

"Life is not measured by the number of breaths we take 
but by the moments that take our breath away."

(To read more about Paxton go here to his blog

Owen is a darling 5 1/2 year old heart hero who was born
 with Hypoplastic left heart syndrome just like Mason. 
He had been on the heart transplant list for almost
a year and then on July 17 he received a new heart! A
second chance at life, due to a very generous donor family.
Oh the memory of emotions from the day we received
word that Mason was going to get his new heart! 
Tears and emotions of joy came to me when I found
out Owen was getting his new heart. He and his family
had been waiting very patiently for a long time! 

At the same time though, just as I daily think of Mason's
donor family, my heart breaks for the family that had
to say goodbye to their sweet little one. With much
 gratitude I say "thank you" to all donor families!!!

Please pray for Owen as his body adjusts to his new heart.
(To read more about Owen's story go here.)


Mason's biopsy procedure went well, but his pressures were higher than his normal. Sometimes this can mean rejection, but not always. We won't know until tonight when we get the results of the biopsy.  Positive thoughts please!!!! We will be staying here the rest of the day for his monthly 12 hour Ivig infusion so hopefully we will get a good nap. 

Have a great day!