Thursday, December 25, 2014

Merry Christmas

Merry Christmas to your family from ours!
May we all remember the real reason for 
this special season today and always. 
May our hearts be filled with more hope, 
charity, and love as we recognize our  many
 blessings from Him, our Savior, whose 
life we celebrate this Christmas day.
We send you love and best wishes for a 
healthy and happy new year!

Saturday, December 20, 2014

Change of Plans

Mason came down with a high fever of 103 and a nasty cough the night before he was scheduled for his back rod expansion surgery. Such bad timing! He hasn't been sick all fall! We were supposed to check in at 6:30 am to same day surgery on December 10, but instead I called at 6am to cancel after being up all night with a pretty sick little guy.  The fever lasted three days and the cough has lingered, but is much better than it was. We probably won't re-schedule his back surgery until January, giving him time to completely get over his cough. Its just not a good idea to mix anesthesia with a cough, especially with how prone Mason is to getting pneumonia after being on the breathing tube for a surgical procedure. Although it certainly would have been nice to do it before the end of the year, since we've already met our max out of pocket with our health insurance for the year. I guess we will just meet our deductible and max out of pocket really early next year instead!

As for the IVIg infusion treatment that he was also supposed to receive during December 10's hospital stay, we canceled that as well because of being sick. Since he's feeling much better we are at Primary's right now, Saturday night December 20, staying the night while he gets that IVIg infusion.
He's such a funny boy..... he was super excited to come stay the night at the hospital! Only a frequent flier kiddo like Mason would be excited to go to the hospital!

I talked to the transplant team this week about the results from Mason's immune-assay test that we drew at clinic two weeks ago. This test looks at how your body is responding to immune suppression treatments/ medicines. Mason's results showed that he is very immune suppressed. The team does not want to treat him with Retuximab (an additional immune suppression iv medicine) at this time. Although it is possible that it would help get rid of his chronic antibody rejection, it would not be good for his little body to be more suppressed. It is one of those 'fine line' decisions. If his heart function was down because of the rejection then it would be worth taking the risk of increased infections, but since his heart function remains strong and healthy even through this rejection we don't want to suppress him any more than absolutely necessary. With these results though, we do know how very immune-suppressed Mason truly is, and how important it is for him to stay away from anyone who is even the slightest bit sick.

Thankfully Mason was feeling well enough to return to school this week,
because he was so excited to sing in Westfield's Christmas program and to
 participate in his class party! And, I am just so grateful for all the  'normal'
 kiddo experiences Mason has been healthy enough to enjoy this year.

Now we just hope and pray for some healthy holiday fun for
Christmas is just a few days away! 

Sunday, December 7, 2014

Happy (Belated) 7th Birthday Miracle Mason!

I will start with just a brief update on how Mason is doing and where we are at on treating his rejection.  5 days after his biopsy we got the results on his donor specific antibody blood work. The goods new is that one of the antibody types that had been strong back in June is now undetectable. The bummer is that he still has several others that remain strong, but at least they are not any worse than before. With those results the docs decided to taper him down over three weeks down to his regular maintenance dose of steroids (so for 2 days now he has been back on his regular dose). That being said, since he didn't have to continue on the extremely high doses of steroids for more than 5 days, I let him stay in school. Which has still been risky with him being extra immune suppressed, and it takes awhile to get the higher steroid doses out of his system, but he LOVES school! And, his Kindergarten teacher has been extra sensitive about germs, hand washing, and the importance of keeping him healthy. He only missed school one day, because he was feeling so crummy on all of the extra meds. 

Thursday I took him to transplant clinic for a checkup to make sure from a heart stand point that he is okay to have his back expansion surgery that is scheduled for next week on December 10. His echo and routine blood work looked good, so basically he remains asymptomatic from this chronic rejection (Which is great news!!!). With that, along with being back down to his lower steroid dose, the transplant team feels like going forward with his back surgery is just fine. We will stay in the hospital just one night and while we are there he will also get his next IVIg treatment. The other thing we did at clinic was an extra blood test called an immune-assay test. It will look at Mason's level of immune suppression. With the results (we will get them next week) the team will decide if they want to add another IV treatment called Retuximab to help conquer this chronic antibody rejection. If he is already too suppressed then they will hold off for a couple months, if not then we will probably start it a couple weeks after his rod expansion surgery. Lastly, as long as he stays healthy and asymptotic of this rejection then he will see the team once a month for clinic, continue his monthly IVIg, and re-biopsy in March or April (which is when his annual cath is anyways) to check the rejection.

Now for the fun stuff...

Happy Birthday to our Miracle Mason!
He turned 7 on Sunday November 30th!
We are so grateful for the blessings
 he has brought our family.
His love of life, sparkling smile, contagious laughter,
braveness, silliness, and kindness,
definitely brightens any room he enters!
We continue to be very thankful for Mason's donor family...
Because of them Mason celebrated yet another miracle birthday❤️!


Mason loves to have his picture taken....

 and loves to take 'selfies' too!!!
(I love finding his selfies on my phone!)

(Kaitlin and Mason)   

 (Braiden and Mason)

He's always ready for a silly picture!                                            

Mason absolutely loves school! 
He has definitely made a lot of friends.
When I dropped him off an hour late to school
the other day, because we'd been up to Primary's 
for an early morning transplant clinic, all the kids
 cheered when we walked in, "Yay Mason is here"!
It absolutely melted my heart!

This was at the school walk-a-thon. Mason was super
excited to participate it in, but when I got there to cheer 
him on and walk it with him, he suddenly was too tired to
walk (I actually think he was fine, the silly boy!)...
so I carried him for the last mile and 1/2! 
Next year I will for sure bring a stroller!

In October Mason had a great time on his first field 
trip of the year, to HeeHaw farms . I loved going too!
It was so great to do a 'normal child' thing with him!


I think his favorite thing  at the farm that day was 
laying down in a bed of dried corn kernels. (I will 
admit all I could think about were all the germs he 
was laying in, but I let him enjoy it!  I just bathed  him 
and put him in clean clothes as soon as we got home!)

On Mason's birthday he woke up to a room full of
 balloons and streamers, thanks to the Birthday Angel!

After church he was super excited to
 get home and open some birthday gifts!

That night we had cake and ice-cream with the Grandparents.

The bigger celebration came two days later...

Mason and his friends had a very special visit
from three fire fighter and there fire engine!
(Indeed Mason was in his fire fighter gear as well!)

Mason felt like the luckiest guy on Earth!

Mason and each kiddo even got a turn holding the fire hose!

A big shout out and thank you to our dear friend Paul and his crew!

Mason was showered with fun gifts from his friends!

What would a birthday party be without a piƱata right?!

The fire engine cake and a birthday wish completed a very fun party!

Mason actually ate a couple bites of cake too!
(Which is great for this little guy who 
still doesn't eat very much!)

This has been a great year for Mason, besides the reoccurring
and chronic mild rejection... he has been super healthy! 
He's had only a few hospital very short hospital stays which
is a record for us!! He's been able to enjoy more 'normal'
little boy things like tee ball, family vacations, and school!
And for that we are so extremely grateful for this year!
Mason brings so much sunshine and joy to our family...
We are certainly thankful to be part of his journey!

Mason is so loved and adored by his siblings,

absolutely loved and adored by Daddy,

and undoubtedly, very loved and adored by Mommy!

Dear Mason,
I love you so very much. I feel so blessed to be your mommy.Each day I thank our Heavenly Father for you and the miracles he has shown through you. I am certainly grateful he has allowed you to celebrate more birthdays than the doctors would have ever imagined. Thank you for your incredible strength and example. I love you to the moon and back... and more! Happy 7th Birthday!

Saturday, November 15, 2014

Every Cloud Has A Silver Lining- (biopsy results)

Mason and I checked in yesterday at 7 am to same day surgery for his heart biopsy. Silly boy was super excited to be there! It's like a home away from home for him where lots of nurses and doctors know him, he gets fun prizes, and  he can order any food or drink that he wants..... maybe his view of a fun time is just a bit distorted, but I'll take the good attitude any day! He happily went into the cath lab for his biopsy, until he remembered I'd be leaving once he was almost asleep, he then got just a little nervous. But, he is certainly one brave boy!

After his biopsy we stayed in a post-op room for his monthly IVIg infusion. It was a long day and we didn't get back home until after midnight, but it's always nice to get everything done in one day. 

We got the results from Mason's biopsy last night while we were still there. It sadly wasn't the results we'd been praying and hoping for. Apparently that stormy rejection cloud has made a return. It has been lingering over Mason off and on for the last year and a half. In June, the last time he had a biopsy, it was just a very slight mild rejection. Now, it is still mild, but worse than it was. It's about the same in severity as it was in October and March of 2013, For those who understand the way Primary's transplant team scores there biopsies it is a C2 V3 ISHLT 1R pAMR2. His rejection is mainly antibody mediated. Which it usually is with Mason! 

The plan of action right now is going back up on the high doses of steroids (prednisone), which I definitely have a love hate relationship with. They can do wonderful things such as getting rid of the bad antibodies fighting against Mason's special heart, but at the same time turn my cute little happy guy into a restless grumpy pants! I know prednisone hurts his little tummy too, because today he's had trouble just keeping all his meds down. But, the worse side effect of all is how much more it suppresses his immune system. I believe it's about 50% more than his normal suppression! 

So I have a decision to make about whether to send him to school or not right now. It is a fine line decision! We got him his heart so he could enjoy life right?! But I also have to decide how far I go with protecting his fragile life from all the germs and sickness that could take his life. Errr! The transplant team has left it up to me! It get harder the older he gets, because he now realizes what he's missing out on. And, he absolutely loves school!!!

I will be talking to the team again on Wednesday to discuss the rest of Mason's plan. They want to get back his DSA results (blood work that checks for donor specific antibodies) back to to see if they are higher or lower than the last time we checked (which was in June). This will help them decide how long they will keep Mason on the higher doses of prednisone and if they need to add another anti -rejection med (Retuximab) to his treatment routine. So I'll probably wait until then to decide how much of an 'at home lock down' I need to keep Mason on! 

After I got the biopsy results last night I spent quite some time pondering about "what is the silver lining in all this?" First and foremost, Mason is happy and thriving! He loves life! The rejection also could be much much worse! He already experienced severe rejection four and a half years ago soon after his transplant. We've been there, done that... and I will take this lingering mild rejection over that any day anytime! Additionally, his heart function remains great and his heart pressures were good and normal yesterday. Amazingly his special heart continues to handle the antibody rejection. Hopefully his heart can just remain resilient! That is my prayer through all of this, that we can control this mild rejection allowing Mason to continue enjoying life. We are also grateful for great doctors who are knowledgeable and experienced. It is because of them and our Heavenly Father that I can find the silver lining in this storm cloud... there's always hope that we will get through it!

Someone recently asked me if all of the rejection that Mason has experienced since his transplant is normal. I believe it is not necessarily normal, but always possible. We went into Mason's transplant knowing rejection was a great possibility for him. He had a very high antibody count before transplant. He received some IVIg treatments at Stanford prior to transplant which lowered his antibody count about 30%. This widened his donor pool significantly, and he got his heart after being on the transplant list only 4 weeks! 

Although, we knew that there was the chance of the donor heart reintroducing some of the antibodies the IVIg treatments had wiped out, which would then caused rejection. And that's exactly what happened! We for sure saw this with his severe rejection in the beginning. Aggressive treatments and medicine made his new heart happy, wiping out most of the bad antibodies. But, overtime the antibodies continue to slowly return and fight his heart again, even through his daily anti-rejection meds and his monthly IVIg treatments. 

On the flip side, we could have chosen to avoid all of the antibodies Mason had ever had, even those that the pre-transplant IVIg treatments had gotten rid of, when the docs at Stanford were trying to find him a heart match. And then maybe he wouldn't ever have experienced all this rejection. But, Mason was too sick and weak to wait for that! Avoiding all of those antibodies would have extremely narrowed his donor pool, most likely making the wait for a new heart too long for Miracle Mason to have survived! So again, what's the silver lining of this rejection? Mason is still with us, and loving life!

"Even if you cannot always see that silver lining on your clouds, 
God can, for He is the very source of the light you seek."
~Jeffrey R Holland

Thank you for your continued support, love, and prayers. Please pray with us at this time that Mason can conquer the rejection once again. Love to all!!!

Wednesday, November 12, 2014

Halloween Fun, Braiden's OCD Elbow , & Mason's Biopsy This Friday

Halloween sure seemed to sneak up on us this year!Maybe because we seemed to have a warmer fall than usual. Which I won't complain about! We drove up the canyon a couple weeks ago to see the beautiful fall colors, and I sure wish the fall leaves would last just a little longer!

Pumpkin carving, Halloween parades at school, and trick-or-treating are a few of our fun fall traditions. This year my cute kiddos dressed up as a fire fighter, Elf on the Shelf, Willy from
Duck Dynasty, a baseball player, and a skier on crutches. (Preston should have been in two walking boots for this picture, because he's still recovering from his foot surgery, but he had just taken them off for a break . He skipped trick-or treating this year and handed out our candy for us. I wouldn't want to trick or treat on crutches either!)

Did I tell you that I have the cutest kiddos ever??
Okay, maybe I'm a little biased....
but they are great kids and I dearly love them!

Mason was quite proud of his 'Giants' jack-o-lantern!
We even carved our pumpkins before the winning game!

Braiden (or Willy the hunter) is such a good big brother!
He took Mason and Ammon trick-or-treating around the 
neighborhood, while Mark and I slowly followed behind.

Ammon came up with the idea to be the 'Elf on the Shelf'
all on his own. He loves Christmas! In fact he loves to watch
Christmas movies and listen to Christmas music all year long.

Mason has worn his fire fighter costume at least once
a day since the middle of September. I'd say he was just
a little excited to be a fire fighter for Halloween!

We also took Ammon and Mason to visit our fire fighter friend
at the fire station the weekend before Halloween. They wanted 
to show off their cool costumes! (At that point Ammon hadn't 
decide if he was going to be Elf on the Shelf or a fire fighter. 
Got to love indecisive kiddos!)

October always means red ribbon week and dress up days
at school too. Here's two very cute boys on crazy hair day!

If you ask me, these boys have some pretty awesome hair!

Besides all the fun we've had this fall, 
we've also had a few doctor's appointments to keep us busy.  This cute baseball player of mine has a had soar elbow for several months. We had him take a break from fall baseball to see if that would help, but his elbow has continued to hurt him. After an X-ray and MRI on his right arm (his throwing arm) we found out he has osteochondritis dissecans (OCD) in his elbow. We took Braiden (age 11 1/2) to see a specialist (a orthopedic hand and elbow surgeon) at Primary Children's last week to learn more about this OCD and to see what can be done about it. Basically it's is an erosion of cartilage and underlying bone his elbow. Over time, OCD may lead to bone chips in the joint. What causes this condition? In Braiden's case, most likely over use at a young age. Braiden just loves playing baseball and has quite an amazingly strong throw, but we had no idea this could happen! What can be done for it? He could get it scoped to remove any fluid or loose bone chips, but this is can be very invasive and there's always the chance of damaging some very important nerves during the procedure. A less aggressive treatment would be a cortisone shot to help with any swelling and then to lessen the  usage of his throwing arm. The doctor also said that he shouldn't pitch anymore (So sad!! I love to watch him pitch!) The latter option is what we chose for now. Hopefully this will do the trick without needing to scope it! We also hope that Braiden will still be able to play baseball, but we will need to be careful about what positions he will play and how much. Hopefully we caught it in time so   this baseball loving boy can play for years to come!

And lastly, my cute little firefighter has a heart biopsy this Friday, November  14.  (I had said in a previous post that it was on November 13, but I had my dates  confused!) It is a routine scheduled biopsy to follow up on his lingering rejection. It has been 4 1/2 months since his last one, so we are certainly praying the report is good!  It'd be nice if the rejection was all gone, but I'll take ' not worse'! He has seemed so healthy and strong lately , that I hope this means his heart is happy and healthy too! That special heart of his that beats because of his generous donor, for which I don't go a day without being extremely grateful!   We love our Miracle Mason and  are so thankful for the many miracles he has been given and continues to be given  from our Father Above. 

"Family love is wonderful. 
Nothing is as specific as the love of a baby for its mother. 
Nothing is as predictable as the love of children for their parents
 or the love of parents for their children."
~Russell M Nelson