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!

Thursday, March 31, 2016

For the Love of February Birthdays, Baseball tournaments and More... (February and March)

Braiden's Birthday-

On February 8 Braiden turned 13! It seems like just yesterday he was my little 3 year old rascal! My kiddos are growing up too fast! Anyone know how to freeze time?! Seriously!

(These pictures of Braiden and later in the post of Ammon also
were taken by one of my favorites...

I Posted this on instagram and Facebook on Braiden's birthday:
"Happy 13th Birthday to one very handsome, hardworking,
entertaining, determined, talented, and kind hearted young 
man! I can't believe you are 13! Love you forever Braiden!"
#threeteenagersunderoneroof #wheredoesthetimego 

Ever since Braiden was a little boy he has always wanted curly hair... so he finally got it! He grew his hair out long enough to get a perm! Silly boy! All he really cared about was having curls come out of the back of it baseball hat!

After about a month he decided he'd had enough of the curls though and
got hair cut! But, now he at least can say he's had curly hair before!

Braiden had asked for a hover board for Christmas, but finally got one
 for his birthday! I think he'd kind of given up hope, so he was thrilled!

Braiden and these two cute boys, Andrew and Easton, have
been friends since they were babies! They are like 3 peas in a pod!
Such fun boys and glad they are great buddies still!
They came over on Braiden's birthday to help us celebrate!

Officially a teenager!

Continuing to celebrate a day later with a little family birthday dinner at Tepanyaki!

Braiden is always our boy who adds a lot of humor to our lives!
He picked out this shirt at the Abc store in Hawaii over Christmas
 break, because he said the girls would think it was "hot"!

He is also one very talented skier.....look a this back flip!!

And of course, Baseball should be his middle name because he is definitely our super league baseball boy who loves the sport! You've got to love it if you play about 90 games a year right! There's never a lack of baseball games to go watch for our family, that's for sure! 

We love you!!  Hope you had a great birthday,
and that being a teenager treats you well!
 (Or should I say that you treat us well as a teenager!) 
I'm proud to be your mom and am grateful you are mine!


President's Weekend-

Over President's weekend Braiden had a tournament in Las Vegas... He and his team played great! And it was so nice to get out of the Utah cold and soak in some warm sunshine!

And you can't go to Vegas without visiting the M & M factory!

Or riding a roller coater on the strip! (Kaitlin and friend Keylee)


Valentine's Day and CHD Awareness-

I Posted this on instagram and Facebook on Feburary 12:
"Ammon and Mason were so excited for their Valentine's Day parties 
at school today! Mason proudly wore his 'heart hero' shirt in honor of
 CHD (congenital heart disease) awareness week! We are so blessed
 that he has beat the odds and conitues to enjoy life to the fullest!
#chdawareness #1in100babiesarebornwithchd #hearttransplantsurvivor
#happyvalentines #lovethesesweetboyssomuch"

*CHD is the most common birth defect:  
Approximately 40,000 babies are born with CHD each year.  In the U.S., nearly twice as many children die annually from CHD than they do from all forms of childhood cancers combined.  Estimates suggest about 1,000,000 Americans have a congenital heart defect.

Knowing how true these statistics are make me so grateful that 
our Miracle Mason is one amazing fighter and CHD Survivor!
His journey helps give hope to new families joining the CHD world!


High School Basketball Games-

I posted this on Instagram and Facebook on February 26:
"Mason has loved going to the LPHS basketball games this year!
Today he was invited to watch the varsity practice and to meet the
 players! Oh was he ever in heaven!! Thank you to the coaches
for such a special invite!! #lphsbasketball #miraclemason"

Mason talks about that day often! It was a 
special day that he will always remember for sure!


Ammon"s Birthday-

To finish out our busy month, Ammon turned 11 on February 27! Talk about growing up too fast.... Ammon has grown about a foot this year! He soon will pass me up! And, his sweet smile continues to be as contagious as ever!

I posted this on Instagram and Facebook on Ammon's birthday:
"Happy happy 11th birthday to our kind hearted, fun loving,
 adorable, always smiling Ammon..... who is friends with 
EVERYBODY (the young, the old, and everybody in between)!! 
He is dearly loved by ALL who meet him! I love you Ammon and feel 
so lucky to be your mom!! Hope you have the best birthday ever!!
#cantbelievehes11 #growinguptoofast"

Depending on the day and if it's his idea or not...
Ammon loves to have his picture taken!

He learned the "hang loose" sign when we were in Hawaii,
and since then this has been his favorite thing to do in pictures!

Ammon is really good at taking "selfies"...
So if you ever loan him your phone you might 
end up with a 100 or more pictures like this!

(This was on the Front Runner. One day when there was no school
Mark road with these boys up to Salt Lake to meet up with Kaitlin
I shopping at City Creek mall. They loved it! Ammon would ride
the train everywhere and everyday if we would let him!)

For Ammon's birthday celebration all he wanted to do was go out to dinner 
with his two favorite families, the MacPhersons and the Coberlys (Sammi the 
super nanny)! So thats exactly what we did....  at Texas Roadhouse!

Afterwards we went back to our house for some cake and presents...
It was a nice and simple birthday celebration, and just how he wanted it!

What a cute happy boy! Sometimes I sure wish I could read his mind
 (and his wishes), but he sure keeps us all on our toes at all times! 

He wanted a hover board for his birthday just like Braiden, so his wish
 was granted, AND I got an instant vacuuming hover board helper too!

We hope you had a great birthday!
We love you and feel so blessed to have you in our family!
Life would definitely not be as exciting and loving without you!
Thank you for being such an amazing and special boy!


March Madness Baseball Tourney in St. George

In the middle of March we headed down to St George for a fun
weekend get-a-way of watching Braiden play some baseball!

I posted this on Instagram and Facebook on March 20:
"Thanks St George for all the warm sunshine ☀️ this weekend!! 
  • The Clutch had a great Tournament, they played amazing ⚾️!! 

    Good job @braiden_strickland and @e_whitt_3 and all the rest of boys too!! 

    As usual, Mason (#miraclemason) was the best dressed fan there, 



    #lostbyonepoint #goclutch"

    As always thanks for checking in on Miracle Mason and the rest of the Strickland clan! Next up will be Easter, April birthdays, prom and more....

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!