Keep Calm and Carry On.... (Biopsy Results)

I'll make this short and quick today. Mason's biopsy results were not what we'd hoped for.... not that zero rejection that would have been so very nice, or even just better than the mild rejection he's been hanging out with since March. His biopsy showed the rejection is slightly worse. Big bummer! (His results for those who understand Primary's scoring scale for rejection were: C2.5 V3 ISHLT 1R pAMR2) So, his cellular rejection is slightly worse and his vascular (antibody mediated rejection) has remained the same. This is still on the mild end of rejection, but has now become a chronic issue and over time can cause damage. 

On the BRIGHT side, Mason's heart and body still seem to be handling this rejection just fine. During the biopsy procedure the cath doctor measures the pressures of the heart and his heart pressures are within perfect range. In fact they are lower (better) than they've been since last year. Also, Mason's echo showed that his heart function is great and unchanged. I'm so very grateful for this!!! 

What's the plan of action? Mason will continue to receive monthly IVIg treatments which helps kill of the naughty antibodies fighting against his heart. He will stay in the higher dose range of his immunosuppressants Celcept and Prograf. And, here's the change..... that magical but awful medicine that I have a love hate relationship with, his steroid dose will be upped quite a bit. He started a Prednisone Pulse last night. Super high doses for 5 days and then slowly taper back down to the low dose he's been on since April. Mason also did this in March when we found the rejection, and then has stayed on a low maintenance dose since then. Mason is just not a happy kiddo on high doses of steroids. But, a month of grumpiness will be worth it if it will kick this rejection!

(Mason is showing off his Intermountain Healing Heart's

Heart Walk t-shirt! So appropriate!)

We've been through worse. Much worse. We've seen worse. Much worse. We all know Mason is a fighter. He's shown us and proven it to us many many times. He'll fight through

this! Hopefully this round of high dosed steroids will be the trick to finally get rid of this rejection. For now we will KEEP CALM AND CARRY ON. Taking one day at a time. Enjoying our Miracle Mason and watching him enjoy life. Not worrying too much about this rejection or reading too deeply into it. For this precious angel heart beating in him will still bring him many more years to come! 

With such high suppression on the steroids Mason will have to skip preschool for a few weeks. This makes me sad, because he loves it! But, it's not worth the risk of him getting sick. After discussing it with Dr W, or great and amazing pediatrician, I decided to let him go to preschool this week because it will take a few days for the steroids to build up and fully suppress his immune system. Then Mason will pretty much be home bound by this weekend. This way he will at least be able to go to his Halloween party at school. 

Thank you for all of your prayers, positive thoughts and wishes, concern, and love! Have a safe and happy Halloween!

“Come what may, and love it.”

~Elder Joseph B. Wirthlin

(This quote is from one of my most favorite talks.

Which I went back and read last night to deal with

 my frustration and disappointment of this biopsy!

To read the talk go to HERE.)

The Best Sister Ever

***First of all, Mason's heart biopsy that was scheduled for today was bumped until Monday. The transplant team called yesterday and asked us to change because they needed to get a couple of kiddos with more emergent cases into the cath lab today. I had actually worried all week if we should go forward with the biopsy because Mason has had a yucky cough for two weeks, since his back surgery. Although, our pediatrician checked him out earlier in the week and said his lungs sound clear (which is of course great news!!!), I was still a bit leery to send him for another round of general anesthesia. So, hopefully an extra three days will help in clearing up the cough before his biopsy on Monday. But I do not want to bump it any further out because its been 10 weeks since his last biopsy and we've been following this rejection since March! Please think lots of positive happy healthy heart thoughts and remember Mason in your prayers that his rejection will be gone!

I am a month late, but wanted to honor our September birthday girl and post a little about Mason's big (and only) sister...... THE BEST SISTER EVER......Kaitlin!

  

Our beautiful daughter Kaitlin

turned 15 on September 16.

It's so hard to believe she is 15!

My baby girl has grown up!

Where does the time go?

Kaitlin is definitely one of Mason's favorite 

buddies to hang out with! You know for sure

that Mason has a teenage sister because he loves to

 sing and dance to Taylor Swift and One Direction.

In fact Kaitlin and I took Mason to see the late

night showing of the One Direction Movie.

He danced and sang through the entire movie!

Kaitlin was so sweet to choose to go with Mason

to the movie instead of a bunch of friends.

It is a rare occasion to catch Kaitlin without

a smile on her face, (especially now that her

braces are off)! She is a bubbly happy girl 

that is loved by so many!

Kaitlin will always be my shopping buddy and

my fashion consultant! That's what daughters

are for right?! And, now that she's 15 with a 

driver's permit my chauffeur she has also become!

(Driving?? That's right!!! Kind of scary huh?!)

But, most of all I am so very grateful for

 our friendship and that I can call her mine!

(Kaitlin with her cousins Brooke and Nicole)

Kaitlin loves to spend time with her cousins, 

who are some of her best friends!

(Kaitlin with her cousins Elise and Nicole

at  a wedding reception at Alta ski resort)

(Kaitlin with her cousin Natalie at 

Temple Square in Salt Lake City)

Kaitlin also loves to do anything outdoors.

I must also say, she is quite the amazing wake surfer!

On the Saturday before her birthday she chose to 

take some cousins and friends to the lake 

for a day on the boat for her birthday celebration.

As a family we also celebrated her actual 

birthday with an evening at the lake.

Mason and I took Kaitlin and two friends

out of  school for a fun birthday lunch as well.

Mason loves to be a part of any celebration and

Kaitlin and her friends are always so sweet to him!

Kaitlin, 

I'm sorry this post is late, 

but please know how very

much I love you!

I hope you had a great

birthday and I wish you 

a wonderful year to come!

May you always remember 

who you are and know

we are so proud you 

are our daughter!!

Thanks for also being

THE BEST SISTER EVER!

(I will try to post Monday night or Tuesday Morning with  Mason's biopsy results.)

Back Home After Rod Expansion Surgery #3

It's no wonder why Mason loves hospital stays! Wouldn't you if you got to drive around in a police car?! Mason also loves to meet up with some of his heart friends and their mommies while we are there. He loves that the childlife specialists will supply him with all the play-do and toys that he wants and that the nurses will get him root beer or sprite at anytime of day or night. According to Mason, hospital life isn't so bad, because he didn't want to go home today after just a one night say! He asked me this morning, "Can we stay 'til tomorrow Mom please?"

As for me, I'll take a one night stay anytime, because that means all went well with no complications to keep us there! Which is exactly why we are back home tonight snuggled up in our pj's on the couch watching one of Mason's favorite TV shows Flashpoint.....because, all went pretty well yesterday. Hooray! 

I will say though, that this back rod expansion was tougher on Mason than the other two were. He had some respiratory distress after the surgery, most likely because he recently had a cough and some respiratory junk, the breathing tube used during surgery must have stirred things up (even though he has sounded clear for over a week now) and he came out super congested and needing O2. He continued to need O2 the rest of the day and night, but today he's doing just fine without it. He has also been in quite a bit more pain with this expansion, which made him super fussy and uncooperative yesterday when he needed to have an O2 cannula on. But, after the right cocktail of pain meds he was feeling better by last night and even better today. 

In fact this morning, he was feeling well enough to put on his Halloween costume, a SWAT police officer, (that of course he had to bring with us to the hospital), and cruise around the hospital in a Little Tikes police car. Mason is one brave little boy and not much ever stops him from enjoying life, even a 3 inch incision in his back! I learn more from him each day!!

We also got his monthly IVIg treatment done over night so now we don't have to go back to Primary's for two weeks when he has his biopsy. We are hoping for a quick recovery and a healthy couple of weeks so that Mason will be ready his biopsy on the 25th. 

Thanks for all your love and prayers!

Today's lesson from Miracle Mason:

Upcoming Dates & Summertime Fun Replay

Wow it's already October and I 'm just now finishing up my Summertime fun post! Where does the time go? I wish there were more hours in a day! I just can't seem to ever get everything accomplished that I would like to. Some day I guess! But, then I'm sure I will miss the craziness of having 5 very busy kiddos at home. 

Just a quick update on the little Mason man: He's loving school, but he did already miss a week in September with pneumonia. Thank goodness we caught it in time and it was a mild case. After two rounds of antibiotics I think it's all cleared up. (Except that the antibiotics and the diarrhea caused by them have really messed up his Prograf level. Thus requiring 2 blood draws a week lately! Yuck!) Besides two days of preschool each week he also continues to have in home therapists for speech, PT , and OT. He's one busy little guy! 

Upcoming dates: Tomorrow, Thursday, October 10, Mason is getting his 3rd back rod expansion. Yes it's already been 6 months since his last one. The plan is to stay over night at Primary's for his recovery and also to receive his monthly IVIg infusion. Then, on Friday October 25 Mason has his next heart biopsy. This is to follow up on the rejection he's been in since March. I'm very grateful he has remained asymptomatic with this rejection but I do pray this long term rejection is not going to cause damage to his Angel heart.

Now for a replay of our family's summertime fun.....       

On June 28 Mason, Ammon, and I were invited to attend the 

grand opening of the new music therapy room, Sophie's Place,

at Primary Children's Medical Center. It was a very special event!

A few of our heart transplant buddies were also there that day.

(Ammon and  Mason with our heart transplant buddy Matthew)

(Here they are with heart transplant buddy Kaidence.)

Mason absolutely loves hanging out with these special friends!

(He was also glad he wasn't not the only one having to wear

the big blue mask! Because Primary's is under going some

remodeling and construction the transplant kiddos have to 

wear these big blue masks instead of the little white ones

while they are there. Mason does not like them! )

The music therapy room was named in memory of a girl 

named Sophie who used to volunteer at Primary's. Above are

her siblings who entertained us at the grand opening.

Steve Young's Forever Young Foundation played a big

role in the opening of Sophie's place. Sophie's Place is 

connected to the the Forever Young Zone play room,

(which was recently enlarged and remodeled also), that has 

been at the hospital and enjoyed by patients and families 

for many years. Since Steve and a few other celebrities

were there we of course had to snap a few pictures!

Steve and Barbara Young spoke as well as Chester Bennington 

from Stone Temple Pilots and Linkin Park. (Chester and the

Stone Temple Pilots also performed at this celebration!) They

 announced that the next Sophie's Place will be opened at

Lucille Packard Children's Hospital at Stanford. Our other

home away from home. Such exciting news!

Also there to take part in the grand opening and 

celebration was dancer and choreographer 

 Derek Hough from Dancing with the Stars.

Click here for a news article on the new music therapy room, 

Sophia's Place at Primary Children's.

.....And here for one more article.

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And then off to Cali for a week at the beach.....

Fun family time

Relaxing in the sunshine

Or in the shade

Catching some waves in Dana Point and San Clemente

Visiting Balboa Island

Celebrating the Fourth of July

Playing a little smash ball

Enjoying the beach life

(And we were even lucky enough to have Sammi

our Super Nanny join us for half of the week.

Kaitlin was glad not to be the only girl for once!)

Watching some fireworks from 

above the Dana Point Harbor

Playing in the sand

 

Golfing on the beach Mason style

Hanging out with some cool birds at the harbor

And of course one of my favorite parts of 

our annual beach trip is catching up with good

friends from my childhood. Thank you to those

who we got to visit with this year!!!

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After a fun week at the beach we headed home

to watch Braiden and his baseball team.....

win the Tournament of the Champions!

Way to go CLUTCH!

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Then Kaitlin got to go to BYU Idaho for AFY (Adventures for Youth).

with four close friiends and she met many new friends.

They had a great time and made many memories!

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Ammon, Braiden and Preston visited cousins in

 Cokeville, Wyoming and had great time!

They rode horses, fished, rode four wheelers and much much more!

They had so much fun they didn't want to come home!

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We also spent a lot of time out on the boat this summer. 

Since Mason is still on steroids and public pools are

not allowed the boat was a great place to hang out.

Lake water isn't necessarily allowed either, but we have 

a big 4 person tube that Mason could go on (sitting on 

someone's lap) and we'd take him really slow so he hardly 

 got wet. But, he felt like he was still taking part in the fun!

We went boating at Utah Lake, Deer Creek Reservoir,

Jordanelle, and even Lake Powell. Usually our kids

brought cousins and friends along to join in on the fun.

Cousin Nicole came along with us to Lake Powell for some....

cliff jumping,

sun tanning,

wake surfing,

 and wake boarding! 

Kaitlin, Preston, and Braiden even tried

some double wake surfing at the Jordanelle.

 Ammon enjoyed being the flag boy.

Mason liked to drive w/ Daddy,

pretend to take a nap,

or hang out on the tube.

(Preston and baby Cousin Ty)

(Mason, Braiden, and Cousin James)

(Cousin Peter, Braiden, and baseball buddy Easton)

Utah Lake tubing

(Cousin Samantha, Kaitlin, and Cousin Madeline)

We certainly had a fun and healthy summer vacation!

For that we are grateful!!!

Now let's hope for a great fall and winter as well!

***Please remember Mason in your prayers that all will go well with his back rod expansion surgery tomorrow. I will try to update tomorrow night. Thank you!!!