Tuesday, June 21, 2016

Back Surgery or Not?

Just wanted to update where we are with Mason's back surgery and his low platelet issue (or ITP) .... (Mason was supposed to have new rods put in his back for his scoliosis in March, but his surgery got canceled at the last minute because his platelets were too low. A week after that we went to see a doctor in Hematology and found out that he has a condition called immune thrombocytopenia or ITP. At that time we started treating it right away with high doses of steroids.)

Mason had been scheduled for yesterday, June 20th, to finally get his back surgery.  We had scheduled it about 2 months ago when the blast of high steroid doses (40 mg a day vs his normal 1.5 mg a day) seemed to be doing the trick to get rid of the antibodies that were causing the ITP. The key was to try and decrease the steroids and still keep his platelets up. At first the steroids increased the platelets a lot, but then as we started to go down on the steroids his platelets would drop too! So the key was to find a balance of decreasing the steroids slow enough to still keep his platelets up.   We finally thought we had found that happy balance of how slowly we could decrease his steroids and still keep killing off the naughty antibodies. The goal was to get him down closer to his normal low maintenance dose of steroids for the back surgery. The higher the dose of steroids the higher the risk of infection at the time of surgery. 

Then he got a nasty cough in mid May (probably due to the extra immune-suppression from the wonderful but awful steroids!) with some possible pneumonia junk in his left lung.... So we thought we would have to post pone surgery because of that, but after two rounds of antibiotics his cough and lungs were much better! So all of his docs ( hematology , cardiac transplant, and orthopedics ) decided we should go forward with June 20 for back surgery because his platelets had remained around or even above 100 (100 is the number of platelets our orthopedic team feels comfortable with him having at time of surgery, even though normal is 150-400) for a few weeks in a row (and he was finally closer to his normal lower dose of steroids.... so right on track with our goal in mind ). We even took a quick trip to Lake Powell on June 8th, because his platelets on the 7th were 128!!! 

Now for the curve ball.... Last Tuesday I started to notice he had new bruises everywhere and then Wednesday when he woke up covered in more bruises and a bloody nose I called his hemoc and transplant docs and had his platelets checked.... His platelets had dropped to a rather dangerously low number of 14 ( the lowest he'd ever been) ..... So probably needless to say, his back surgery was officially canceled!! For some reason I'm now thinking he's just not supposed to get this surgery, at least for awhile!! One of his transplant nurses when she called me with his platelet count said to me, "14 is very low, so please just keep a close eye on  him and make sure everyone is super careful with him. If he got hurt it wold be really difficult to stop the bleeding!" My reply was, "should I just wrap him up in bubble wrap??!!"

We immediately bumped his steroids back up (this time up to 20 mg a day .... but we had gotten down to 4mg a day). And then yesterday we spent all day at Primarys. We met with Hematology and decided that the high steroid doses were only going to be a temporary fix for Mason's ITP condition and it's not healthy to stay on them for too long. So they started him on a new infusion med , Rituximab (a type of chemo med which will wipe out his immune system, but it will not make his hair fall out) to try and fight this platelet issue more aggressively (it will be once a week for 4-6 weeks but the extra immune-suppression can last 6-12 months)! Please Remember miracle Mason in your prayers that this will do the trick ! 

As for the back surgery? Well, maybe we will try again in 2-3 months! Only time will tell I guess!!

Mason is one very brave and strong boy 
that know how to rolls with the punches! He just takes
what life throws at him and enjoys the journey!

This picture was taken at Lake Powell 2 weeks ago.

Mason decided to catch a little cat nap during his Rituximab infusion yesterday. Such a good boy, not one complaint about our sudden change in plans! I'm so grateful for him and his great attitude!

Wednesday, March 30, 2016

Back Surgery Canceled Because Of Low Platelets

Mason was supposed to have back surgery on Monday March 21. He was going to get new rods in his back (Magic magnetic ones!!) for his scoliosis. But, we ran into a bit of a speed bump which changed our plans! I posted a few things on Facebook and Instagram that day, but haven't sat down to update the blog... sorry to those of you that only look to the blog for updates!

(Facebook and Instagram post at 7:00 am on March 21, 2016)
"Patiently waiting with a smile on his face to go into the OR for back surgery. (He is having new rods put in his back for his scoliosis.) Mason, "you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you'll ever know." ❤ Please remember him in your prayers that surgery goes well and his recovery is quick! #bravestboyiknow #miraclemason #hearttransplantsurvivor #donateforlife"

(Facebook and Instagram post at 5:00pm on March 21, 2016)
"Back home playing basketball already!?!? Thank you everyone for all the prayers and sweet thoughts!! We ended up having to cancel his back surgery just minutes before they took him back to the OR. Mason's platelet count is too low for surgery. This could cause problems with controlling the bleeding during and after surgery. We aren't exactly sure why. This could possibly be caused by his immunosuppression heart transplant meds. He's never had this problem before though!! We are trying to get in ASAP with hematology for a consult to hopefully find a cause and treatment. #neveradullmoment #miraclemason #hearttransplantsurvivor #donateforlife"

Thank goodness for a great anesthesiologist who had 'done his homework' prior to the surgery and noticed that Mason's platelets had dropped significantly from end of January to end of February. So he wanted to draw a cross a match to have blood on hand in case the doctors had trouble controlling the bleeding during surgery and he needed a transfusion, but he also decided to draw a CBC to check his platelet count (because the last time we checked was 2 weeks prior). Mason's count came back even lower than his last blood draw, which was too low to safely do surgery. I'm so grateful he checked because Mason could have dangerously bled out during and after surgery!!

The transplant team had told me the day of his biopsy (February 29) that his platelets were lower than his normal and that we should just keep an eye on his levels and to let them know if he started having nose bleeds and/or bruising easily.  They also rechecked a CBC a week later just to make sure the results on February 29 had not been inaccurate(and the results were about the same a week later). But I had no idea how drastically they had actually dropped! I do wish I had been a little better informed! Although, I also could have asked for exact numbers when they told me about it in February, but I didn't!

Here is what his platelet counts have been...
*January 30, 2016: 350 (thousand) which is about his normal 
  (normal for most people is 150-400)
*February 29, 2016: 62 (thousand)
*February 7, 2016: 64 (thousand)
*March 21, 2016: 32 (thousand) 
Surgery is not safe under 50 (thousand). Spontaneous bleeding can happen at 10 (thousand or below), but 30 (thousand) or below is not safe for sports or any where he could fall down and get hurt! 

We waited for for several hours after his scheduled surgery time to try and get into a hematologist (blood specialist) for a consult, but they were too busy!! I wasn't very happy!!  I was told his surgery was 'elective', therefore it wasn't an emergent case they needed to fit in!! And, it actually took us a whole week to get into them... needless to say I felt like I was the only one worried about the drastic drop in his platelets!

 We spent all day (basically from 9am-5pm) this last Monday at Primary's with Dr Afifi  (she is the doctor who saw Mason a few years ago when he had the parvovirus that was destroying his red blood cells) and her hematology team. 

This is what we learned...

Mason's platelets had dropped down to 20 from 34 in a week! Yikes! So they gave him a platelet transfusion. Not only did he need a transfusion having dropped that low, but it was also to try and determine what is destroying his platelets, the likely possibilities she said were that it could be antibodies destroying his platelets or possibly 1 or 2 of his immunosuppression meds destroying them. (This was important because the way to treat which one it is, is different) The plan was to check a platelet blood  count 15 min after the transfusion on Monday and again the next morning. (but the blood sample right after was ruined by the lab, so we didn't get the results!) If they dropped again super quickly (almost immediately)  then we would know that it is most likely antibodies that are doing it. If the platelets did not drop quickly, then it could be one of his medications slowly destroying the platelets. 

Here's what his platelet counts have been this week:
Monday March 28: 20 (thousand)
Monday March 28 after his platelet transfusion: ? (they were probably 80-90 thousand)
Tuesday morning March 29 8:45 am: 30 (thousand)

From the transfusion and platelet count the next day this is what we learned...

 The docs believe he has ITP (idiopathic thrombocytopenic purpura ) which basically is when you have an extremely low platelet count because as soon as the bone marrow makes the platelets they are getting destroyed by certain antibodies.  How he got this we aren't sure. Possibly as a side affect from a virus he may have had in the last couple of months. (And ITP is not contagious, so no worries there!! We won't be spreading this condition around!! ) The way to treat this is with very high doses of steroids😩.... Which we started Tuesday night and he will be on them for at least 2 weeks. 

The hope is that the steroids will get rid of these naughty antibodies! (I love and hate steroids all at the same time!!) He is taking 24x his normal maintenance dose of steroids (for heart rejection)! This will suppress his immune system significatly more than his normal suppression 😫.... So please keep your distance from Mason (and our family) if you are sick at all! Also if this condition doesn't improve quickly, he will not be able to play baseball this season. It starts mid April, and we has scheduled back surgery when we did so he'd have a month to recover before baseball started!! It's the one team sport our little heart warrior can play and he loves it. I do not have the heart to tell him because of this platelet issue now he may not be able to play. Please remember our Miracle Mason in your prayers that the steroids will fix this most recent speed bump, and quickly!!

For now we will probably post pone back surgery until June. Giving his body time to make plenty of patelets for a safe surgery and also so he can play on his little league baseball team (hopefully!) 

Next week we will see hematology again to follow up on his platelet count and while we are there we will also do his monthly IVIg infusion... Because of Mason's health issues and his extra immunosuppresion right now we will be staying home for Spring Break, so wish me luck with lots of bored kiddos!!

(I've been working on a post for Febrauary... we had 2 birthdays, a baseball tournament in vegas for Braiden, and more! Hopefully I'll finish it soon!)

Thanks for checking in on Miracle Mason and our family!

Tuesday, March 15, 2016

It's Great To Be 8 and A Great Way To Start The New Year

(Trying to get caught up! I'm so far behind! This post is for January...)

January 2, 2016 was the best day ever! Mason reached a wonderful milestone, one that we honestly thought was a pretty far off dream his first several years of life... He was baptized! To have thought he would've made it to his 8th birthday and old enough to be baptized, for so long seemed very unrealistic! We are forever grateful for all his doctors, nurses, and of course his donor family for making this special day a reality! Such a special day and a great way to start of the new year!

We love you Mason and are so proud of you!

Mason had quite a crowd at his baptism!
And this was only some of it!
He is one very loved little boy!

He was asked to choose someone to give a talk at his baptism.
He chose big sister Kaitlin and she did a great job!
Oh how he loves KK!!

A day off of school...
A sweet family in our neighborhood invited Ammon and Mason to visit their little farm one day that there was no school. They had fun! Mason is a little unsure around animals, but Ammon absolutely loves them! Ammon wants his own farm someday he says!

Cub scouts...
Turning 8 meant Mason got to start going to cub scouts with his neighborhood and church friends. He really enjoys going and being a part of it, just like he's seen his big brothers do! 
This was at his first pack meeting and he'd already earned some awards!

Which meant he also got to pin an award on Mom!

Junior Preference....
Kaitlin, as always, looked stunning for her Preference formal in January!

She a great time with her fun date and darling group of friends!

Oh to be 17 again!!!

BYU Basketball...
Mark took Mason on a special date to a BYU basketball game. He absolutely loved it and talked about it for days! Mason is definitely a big sports fan. It's so cute to watch how into he gets as he cheers for all the players!

 Yesterday is a memory, today is a gift, tomorrow is a hope!
Wishing you the best new year ever!
Happy 2016

Thanks for checking in on us!

Thursday, March 10, 2016

Reason to Celebrate....( biopsy and CT results)

Mason had a routine heart biopsy and CT scan last Monday (February 29), and I got the final report on Thursday (March 3). (Sorry I'm just now posting results!) 

Monday ended up being about an 18 hour day for us at the hospital, but Mason as always was a good sport. We had to check in at 7:30 am for his CT (I'll explain why he got a CT next) and then we were supposed to go to the Cath lab at 9:30am for his partial heart cath and biopsy, but they had an emergency case (a very sick heart transplant kiddo) that got put in front of us... so Mason didn't even go to the cath lab until almost 2:30pm. We have been that emergency case a few times, so I totally understood, it just made for an extra long day! Poor Mason was fasting that whole time too, because he was put under anesthesia for the heart cath. Mason did rather well waiting, just got a little 'hangry' towards the end of our wait! After that we did Mason's monthly Ivig infusion and headed home around midnight. I'm all for doing 'two-for-one' visits to the hospital, so that's why we timed it with his IV infusion.

(Waiting for his CT)

 Why did Mason get a CT? Once a year it is routine to get a good look at a heart transplant recipient's coronary arteries, because coronary artery disease is the most common cause of a failed heart transplant. Normally this can be done during a heart cath, going through the femoral arteries (on pediatric patents) and injecting contrast die with the catheter into the arteries so X-ray pictures can be taken. But, (those of you who have followed Mason's journey for a long time already know this) a year post transplant it was discovered that both of Mason's femoral arteries are completely occluded! Since then he's been been getting cardiac stress MRI's annually to look at his coronary arteries. This time we switched to doing a CT instead because Mason is going to get new rods in his back in 2 weeks (for his scoliosis) which will be magnetic. With those new rods an MRI will not give a clear reading, so the transplant team wanted to make sure that a CT would give us a good enough look at his coronaries from now on. The good news is.... the CT did give us good pictures and the even better news is that his coronaries are wide open and look very healthy!!

(The coolest pirate ship CT machine ever!)

What about his biopsy results?
The results were not as good as the last one he had in August ( which was the best he'd had in 3 1/2 years!!) but it wasn't terrible either.  We've had much much worse though , so we will take these results!! (For transplant families who understand the score it was C2.5 V1  ISHLT 1R  pAMR 0) Some slight cellular rejection (which isn't as bad as antibody-mediated rejection.... the type he usually has struggled with). The plan for now is to optimize his immunosuppression meds Prograf and Imuran (going up on the doses a little) and stay on his maintenance dose of steroids, but nothing major. I am kind of glad the team doesn't think it necessary to do higher doses of steroids right now, but I sure hope it is the right thing to do! It is a hard balance to keep his heart happy (out of rejection), but not be so immunosuppressed that he's always sick with new infections or illnesses! 

Mason's DSA's (donor specific antibodies) were also elevated from last time, but oddly his antibody mediated rejection was a little better this time!! He will continue his monthly Ivig infusion treatments to keep the antibody rejection under control and the transplant team is going to keep an eye on his heart with monthly echoes. If no rejection symptoms pop up sooner he will go 6 months before his next biopsy. 

(Braiden and Mason celebrating hover board style!)

Even though his biopsy results weren't his personal best, we will take them and run! We are celebrating that his coronary arteries are healthy and that the only rejection found is mild! We continue to celebrate and be grateful for his special heart each and everyday... for because of his thoughtful donor our Miracle Mason loves life and brings joy to our home!

On March 21 Mason his scheduled to get new rods in his back. They will be magnetic, which means no more surgery procedures twice a year to expand them with his growth! He will simply be seen in the orthopedics's office every 6 months and they will expand them by putting a little magnetic widget up to his back. Modern medicine and technology is absolutely amazing!!! We expect to be in the hospital for 3-4 days to recover from the surgery. Please pray with us that it goes smoothly and we will really go home that quickly!

Love this quote:

"It is your reaction to adversity, 
not the adversity itself, 
that determines how your life story will develop."
 ~Dieter F. Uchtdorf

Sunday, February 21, 2016

Best Christmas Present Ever

As every month passes by I seem to get further and further behind on updating our blog! My intentions are always good, each month I get started on a new post, but just can't seem to sit down and finish it!The good news is that we are busy doing normal kid things and normal family things, not spending lots of time in the hospital (which in years past always gave me lots of time to blog)! That having been said, I've got some fun pictures to share in this post of our surprise Christmas trip to Hawaii.  I will say I was crazy busy getting everything done for Christmas 9 days early this year while packing for our trip, but it was so worth it! Once we got to the Norths Shore we were able to enjoy 8 straight days of quality family time without stressing about all the normal last minute Christmas errands and to-do lists.... it was absolutely perfect!! It was at the best Christmas present ever for our family that Mason was finally healthy enough to go on trip so far away from home. It was like a dream come true!

Mason and Ammon were most excited about the plane ride!

The airlines had messed up our seat assignments,
so we were spread out all over the plane. On the other
side of Ammon sat a young Mac make-up artist going to
Oahu for work, and oh that poor girl... Ammon was so
excited that he talked her ear off for 5 hours straight!
Good Times!

Our first day on the North Shore we went to
the Billabong Masters surf contest at Pipeline!

There were some huge waves and amazing surfers!

One of our favorite things we did was going to the
Polyenisian Cultural Center.

(Polyenisian Cultural Center's famous surfing santa)

This was our canoe ride that took us through a live nativity.
We loved being there at Christmas time!

And of course we couldn't miss a ride 
on the Hawaiian Polar Express.

Mason got to try out the Tahitian drums!

(Ammon was a bit camera shy that day and 
wouldn't get in the pictures, the stinker!)

The boys learned how to make fire from the Samoans.

And Mason made a new buddy from Samoa!
In fact, his new friend asked if he could take a picture
with Mason and wanted me to tag him in it on Facebook.
(The islanders at the PCC were all so attracted Mason,
and they didn't know anything about his special heart!)

These boys got all cleaned up on Sunday to go
 to church and to visit the Laie temple grounds.

Such a beautiful place to visit on the Sunday before Christmas!

I love my family! Families are Forever!

Mason is such a little ham, always posing for pictures!

Ammon found this beautiful nativity statue at the temple

(Mark, Ammon, Mason)

Snorkeling was a big hit! We snorkeled at 
 Shark's cove, Lanikai Beach and Hanauma Bay...

(Kaitlin and Preston)

We spent a couple days at Waimea Bay jumping off the big rock,
rope swinging, playing on the beach, relaxing and catching some waves...






(Mason, playing catch of course!)

Ammon still is not a big fan of getting sandy,
so this was the only day the whole week that
he actually played in the sand! Silly boy! 

Kaitlin and I doing a little relaxing in the sun!

(Preston and Braiden)

Kaitlin found a turtle at a little beach near Haleiwa.

We had a yummy visit to the Dole Plantation.

We went on a beautiful hike up to Waimea Falls...



Kaitlin and I went in to the water fall and it was freezing!
(It was cold from the recent rain)

Mark, Kaitlin, Preston, and Braiden went 'free diving' (meaning they were not in a cage) with a professional diver out of the Haleiwa boat harbor. They said it was a very cool experience! (Mason and Ammon were my excuse though... I was a little too scared!)


And look who we found on the North Shore... Santa!



Thank you Santa for a wonderful Christmas trip to Hawaii!
It was definitely a wonderful dream come true!

Mason and Ammon made a couple of cute little hawaiian friends!
Their mom works at the hotel and became Ammon's buddy while
we were there. In fact Ammon knew all the employees very well
before we left! They even made him his own employee name tag!

Good bye Hawaii!! Thanks for having us!!
We hope to visit you again soon!!

Ammon was invited to sit up by the pilot for a few minutes.
And in those few minutes he probably asked 100 questions!
He loved it! It was awesome!

We had so much fun in Hawaii, and the kids were 
all exhausted to prove it! The flight home was great!



We made it home just in time on Christmas Eve to put on our 
new pajamas and hop into bed, so good 'ol St Nick could come!

 And that big guy in the red suit came through for us!
We woke up Christmas morning to find out he somehow 
knew we were back home from the North Shore!

(Ammon and Mason)

(Mason and Preston)

(Ammon, Braiden, Kaitlin, Preston)

These two boys sure make Christmas feel Magical!
Their excitement for life is contagious!

Christmas time usually means lots of extended family time too...

(Mason and baby cousin Finn)

(Kaitlin with cousins Nellie and Rachel)

 And of course there's always the annual
Strickland roller hockey at Classic Skating...

(Mason and cousin James)



Then there was Grandma Marilyn's New Year's Eve party
with lots of cousin fun, games, a piñata, treats, dancing,
and the annual send off of the Chinese lanterns...

Mason and cousin Thompson showed up  to the 
New Year's Eve partying in matching shirts!

Ammon is the family baby whisperer!
Oh how he loves all babies!

~piñata fun~

~game time~

~dancing the night away~

The sending off of the Chinese lanterns means
 lots of wishes for a healthy and fun new year!

We are so grateful for wonderful family and friends 
to spend our holidays with every year!

"Dreams that you dare to dream
really do come true!"
~The Wizard of Oz

***Mason has a routine cath/biopsy and a CT scan (to look at his coronary arteries) on Monday March 29, 2016. Please remember him in your prayers! We would love a 'good news' report! Thanks!