Saturday, June 29, 2013

What Have We Been Up To?

Life is so busy that time seems to fly by and escape me! I just haven't been able to keep up with blogging or much else lately besides Mason's "rotovirus laundry"! I spoke too soon, 2 weeks ago, when I said Mason's tummy seemed to be on the mend from that awful virus.....
At least 5 weeks now into this virus he still isn't completely over it. The docs believe he is no longer contagious, but his little tummy is just super off balance and messed up as an after affect from the rotovirus. He is better, but definitely not back to normal! Puking and diarrhea-ing still sometimes several times a day (some days are much better than others) he was down another pound at Tx clinic this week to 28 lbs. Poor LITTLE guy can't afford the weight loss! The good news is that his echo this week looked good and his heart remains unaffected by the rejection. So the docs' main concern right now is the weight loss. Mason's body just needs to kick these rotovirus after affects so he can gain some weight back!

I also heard back this week that our insurance has denied covering the specific antibody blood tests that we were hoping to do through Stanford. I won't give up though! Now I will be working on an appeal. In fact I will appeal it however many times it takes until they approve it! Insurance can be so frustrating!!!

Here's some pictures to show what else we've been
up to in our family the last couple of months.....

Since April was National Donate Life month Mason
and I participated with my Heart Mom friend Shuntelle
 and her beautiful daughter Kaidence in a special event
at Primary Children's. We visited, with 2 represtatives from
 Intermountain Donor Services, the PICU, CICU, and 
Cardiology doctors and nurses. We gave them Donate Life pins
to thank them for suporting organ donation and for 
taking such good care of all of our transplant kiddos.

Mason started to get his chubby cheeks back
for a short time while on higher doses of 
steroids earlier in the spring, but it didn't last
 long because he's now on a low maintenance
dose of steroids and he's lost weight from the
nasty rotovirus.

Chubby cheeks or not Mason is truly one silly boy.

He coninues to be very picky about what he wears
and gets attached to certain outfits for several 
days and sometimes several weeks. He will cry
when it gets wet or dirty and will sit by the washer 
until its done and he can put it back on!

This here is Mason's 'Hawaii Five-O" outfit. It started 
with the just the Hawaii shirt, but then each day he
added new things to his belt. And, each item had
to be in its place even while he was sleeping!

The collection of items hooked on his belt
included 3 squirt guns, 6 orange bracelets (which 
he said were handcuffs), and 5 highlighters (these 
were his flashlight laser guns). Creative little boy!

Springtime always means lots of sporting events
to watch and support.With soccer, baseball, and
 lacrosse we had up to 7 games a week to attend!

Ammon always makes soccer a fun and comical event.....

at times having to be reminded to focus on the game,

with sweet coaches and team mates who allowed him 
to join his team and have a great time! Thank you!!!

Mason of course was Ammon's #1 fan.

Mason also looks forward to Braiden's baseball games 
(his season still isn't over) each week. Here he is with
his sweet big sister Kaitlin and his darling cousin Madeline
enjoying a little time on the swings in between games.

When Mason follows all the other young children over 
to the sandbox during the games I'm always a nervous
wreck about germs. But he's got to be allowed to be 
a kid right? And, thank goodness for hand sanitizer!

Braiden continues to be a valuable talented player
on his Clutch baseball team. He plays catcher and
 pitcher a lot, but can really play any position
on the field.

For Memorial day Braiden's coach gave the boys new
jerseys. Each boy has a different name of a military jet 
on the back of their jersey in memory and support of
those who fight for our country.

His kind and thoughtful coach even had Memorial 
 day jerseys made for Ammon and Mason!

So I'm sure you can imagine what trumped Mason's
'Hawaii Five-O' outfit and became his new favorite!

With this "AH-6 Little Bird" (aka: little bomber)
I have spent many times, even several times at 2 or 3am 
sitting in front of the washer waiting for this special
jersey to wash because he got it dirty or threw up on 
it! Spoiled? I guess, just a little bit! It's usually just
a battle I'm too tired to fight!

Mason is also Braiden's #1 fan and gets 
very upset if we have to miss a game!

Go Miracle Mason and go Clutch Baseball!

Next is Preston's lacrosse, which is always 
super fun to watch!

Go Lone Peak Lacrosse and especially#15!

Preston loves lacrosse almost as much as skiing! Both
at which he's very talented. He scored many goals, attacked,
and helped make his team one of the top 4 in the state!

He also has rallied up many friends and neighbors
to join this great sport.

And can you guess who Preston's #1 fan is?
Of course! It's Mason!

As springtime has come to and end, Mason is
dressed and ready for some outdoor fun this summer.

And, look who already lost 2 teeth!
In fact he lost them both in 1 week.

This handsome 12 year old graduated from 6th
grade. It's so hard to believe that my second
kiddo is off to Jr High! 

Congratulations Preston!!!

It's hard to believe another school year has gone by!
Kaitlin and our neighbor Cason were more than
ready to start the lazy days of summer.... so like
  most Jr. high kids they skipped the last day of school.

But, Ammon would never skip the last day of school!
He was way too excited for the end of the year party!

Ammon and Mason started off summer vacation by
attending an outdoors community safety fair. There's
no way these 2 boys would pass up a visit with 
their favorite heroes! 

With the Life Flight helicopter, ambulances, 
fire engines, and police cars all in attendance
these 2 boys were in absolute heaven!

Mason shocked us all by letting the firefighter
dress him up in his gear! All though Mason is
obsessed with firefighters and police officers
he usually likes to watch from a distance!

Kaitlin, my niece Natalie, and I had a fun girls 
night out at the Taylor Swift concert!!! 

As I posted about briefly 2 weeks ago, 
our kids started off the summer with a 
super fun cousin's camp. We are grateful
for Aunts and a Grandma who take the time
to plan this and make it all possible!

With the cousins all numbered from 1-43
our kiddos are numbers 8, 12, 18, 24, & 31.
Good times!!!

I ran my 2nd annual American Fork Canyon 1/2 half
Marathon on June 15. It felt so good to cross the finish!!!
I love this race because the theme is Live, Survive, Thrive 
and its proceeds go to help those fighting cancer. 

I dedicated my efforts that day to my own super hero
 and fighter, Miracle Mason (Heart Transplant Survivor),
all of our Heart Buddies, and my new little friend Adler 
(and his parents, Jaime and Sara Utley ) who is fighting 
against cancer at this time. Never give up HOPE!

Now, after a few very busy months, we are headed to California for a fun week at the beach for the 4th of July. The drive is always long and exhausting with all the kiddos, but much worth it once we get there. Here we come Cali for some much needed sun and sand!!!

 My quote of the month:

"But first, you must believe."   -Peter Pan

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!  

Monday, June 10, 2013

Biopsy Today

Today we checked in at 6am to Primary Children's same day surgery for Mason's heart cath/biopsy. This is a follow up biopsy because of the rejection detected at his March annual heart cath/biopsy. (Which was still the same 3 weeks later in April when he had another biopsy to check if the rejection had improved from the steroids and IVIg treatment.) Since the last biopsy, Mason has stayed on a low maintenance dose of steroids and had an other high dose IVIg treatment. Hopefully.... with fingers crossed, toes crossed, prayers, and positive thoughts this biopsy will come out clean and Mason can have a fun steroid free, not as immune-suppressed, summer vacation!

Mason is in the cath lab at this moment and after he is done we will be staying all day for his 10-12 hour monthly IVIg infusion. My plan today while we are here is to due a 'catch-up post' of what we've been doing over the last 6 weeks since I last posted. That's if the cath goes smoothly and Mason allows me some time be on my laptop!

Besides prayers for a good news cath, Mason could also use some prayers for his tummy to feel better. He has had a yucky tummy bug for a over 3 weeks now and we just found out over the weekend that he's had roto-virus. We tested for roto-virus 2 weeks ago but it came out negative then.  When we re-tested on Saturday and it was positive.....weird! But, at least we know the cause.  And yesterday he finally seemed to be a little better of this yucky tummy bug. I guess it just has had to run its course. But the poor little guy has lost about 2 1/2 lbs the last few weeks putting him at only 29 lbs. 

I will post with biopsy results and a 'catch up post' very soon.

Happy Monday!!!