Getting closer........

.........to going home, but not quite yet! That being said, you've probably already guessed that the biopsy results did not come back with that big fat "ZERO" we were all hoping and praying for. But, very close. Mason's rejection level is "1a". The same as it was 4 weeks ago. The is very very mild rejection and as you all know Mason's little body has experienced much worse than that, so......I'll take it. At least it wasn't a 2 or 3 which would have put us several steps backwards!!

Since clinically Mason is doing so well, even with a 1a, we're still making steps forward. He's gaining weight, energy level is great, echo this week looked wonderful, blood pressure is well controlled with his meds, getting stronger each day........so,I can't complain! Mason does still have a cough (from last week's sickness), but it's getting better and it has not affected his O2 sats at all. Still satting 97-98% on room air, even with a cough! Love it!

The plan: tomorrow Mason has an IVIg infusion treatment (He'll continue to have them every 4 weeks for several months and we'll be able to do this a Primary Children's once we go home.) We will be there all day, a long 14 hour day!!!! This is a treatment used to wipe out the bad antibodies that can cause rejection. After his treatment they will run DSA and HLA antibody blood tests to check for specific "naughty" antigens lingering in his blood. With the results of this (probably won't get results 'til Monday or Tuesday) Mason and I will sit down with the transplant team and discuss if and when we can go home.

There is a possibility the team will let Mason return to Utah w/ a "1a" if his antibody tests come back looking good. Good would be: no specific "naughty" antigens seen in his blood or maybe 1, but at a very low percentage. As much as I am very ready to go home, I also want Mason to be ready to go home.....so I'm putting my trust in those who know best, the doctors and our Father Above.

I'm tired. It's been a crazy day. Mason and I are officially moved back into the Ronald McDonald House. Well I don't know if you call it moved back in w/ suitcases lined up across the floor along with grocery bags of all of Mason's medical supplies, diapers, toys, and everything else we've accumulated over the last 5 months.....I can't see the floor......I don't even know where my pj's are......but we're here.......and I am going to bed!

Ps....Happy 31 months Birthday today to our Miracle Mason!

Biopsy 6 tomorrow & Mason's Native Heart

(Kaitlin and Mason when we visited the beautiful

Stanford campus 2 weeks ago with our family)

*** TOMORROW MASON HAS HIS 6TH BIOPSY. THIS IS A REALLY IMPORTANT BIOPSY. THIS WILL BE THE MAJOR DECIDING FACTOR ON HOW SOON WE GET TO GO HOME TO UTAH!!! PLEASE JOIN OUR FAMILY IN PRAYER THAT MASON'S RESULTS WILL BE A "ZERO" (FOR ZERO REJECTION)! WE FEEL SO BLESSED THAT MASON HAS A HEALTHY NEW HEART AND THAT THERE HAVE BEEN NO ISSUES W/ HIS LEFT LUNG WHICH IS AFFECTED BY PULMONARY VEIN STENOSIS! WE FEEL SO BLESSED THAT HE IS DOING AS WELL AS HE IS, ONLY 12 WEEKS POST TRANSPLANT! AND NOW WE WANT TO REUNITE BACK HOME WITH OUR FAMILY AGAIN......HOPEFULLY SOON!!!!

___________________________________________________

Mason's Native Heart

While our whole family was here (2 weeks ago), we had the

opportunity to see Mason's native (born with) heart. We met

with the pathologist who had dissected and ran lab work on

Mason's very sick heart post the transplantation of his new

healthy angel heart. It of course was not pink/red any longer,

and didn't look like what you imagine a heart would look like

but.....it truly was Mason's heart. It seemed very surreal.

Here is the a dissected view. On the bottom left is where

Mason's left ventricle was very under developed.

Usually your heart should be about the size of your fist.

Mason's heart was so sick that his heart was very enlarged

and swollen. His heart was about the size of Kaitlin's fist.

Thus, it was the size of an 11 year old's heart not that of a

2 year old! Who did it fit?! No wonder he didn't feel well!

As soon as the pathologist pulled out the blue gloves

for all of us to put on, prior to seeing the heart, Mason

began to completely freak out! Poor little man thought

we were all going to give him "owies". Blue gloves to him

mean blood draw or some kind of "owie"! He was so

upset that I finally took him out and missed holding or

even touching his native heart myself. Little stinker!!

Preston, Kailtin, and Braiden teach got to hold Mason's

old heart. They were very fascinated! You might say

it was a very "hands on" science lesson!! Mark(Daddy), and

Sammi (nanny) also held Mason's heart, but Mason, Ammon and I

left to go for a little walk so they could hear what the Pathologist

was saying. What an awesome "once in a lifetime" experience!!!

*** I will post hopefully by Wednesday night with Biopsy 6 results. Also, just to keep you updated with our mailing address, we are returning back to the Ronald McDonald House this week. A big THANK YOU to the Brand family for allowing Mason and I to stay in their Mother In-law apartment since March. You have been more than wonderful to us!!!

% Mason Strickland

Ronald McDonald House at Stanford
520 Sand Hill Road,

Palo Alto, CA 94304-2001

A Grateful Heart

My heart is full of gratitude.

Mason's Celebration and Benefit Night was fabulous!

Over 200 people attended.

The auction items were amazing and plentiful.

The entertainment was very heart felt, spiritual, and angelic.

The love and support of community, friends, neighbors, and family was abundant.

The fundraising was very successful.

I couldn't have imagined a more perfect night.

Except..............

Mason and I weren't there in person!

I guess we'll just have to do it again sometime so we can be there too!!!

(The Skype only worked partially. I was able to see and here most of the concert and program, but they weren't able to see me. Mason and I had gotten all ready to be up on the big screen and say hello to everyone......sending our love and gratitude to all in attendance. Bummer! Of all nights for the connection not to work. We Skype our family all the time and have never had a problem.)

A FEW PICTURES:

I like this one: "Mason Strickland Event".

He is one famous boy at such a young age!

Tables were stacked w/ donated items for auction.

With beautiful homemade quilts, Hoven sunglasses,

Blue House Skis, season passes at Cowabunga Bay,

1 hour massage certificates, hair removal laser treatments,

IKON treadmill (worth 3,ooo- I'm jealous of this one!!!),

Ogio golf bag, signed sports memorbillia, homemade

heart suckers, gift basket from Rod Works, and much

more..... there were items to bid on in every price range!

There were cute pictures of Mason on display as well

as a video of him playing on the big screen through out the evening.

I will post the video on the blog as soon as I get a copy.

A very crowded room full of support and love for our Miracle Mason.

Angie Larsen from Channel 4 News and Good Things Utah was the MC

for the evening. Here she is introducing Mark (Daddy), and siblings

Kaitlin, Preston, Braiden and (as she said) "Super Nanny" Sammi.

Here are the performers of the evening. I must add that their music

was purely angelic and had many of us crying. And, ironically these

4 people have been truly God sent angels in my life (along with many

more of you out there reading this). They have always known the

right thing to do or say to give me the "pick up" and the

endurance when needed to carry on and not give up HOPE!

My dear friend Camille and her group Providence

sang , "You have Been Good".

Maddi Bishoff (who volunteered at least 80 hours the last

year and 1/2 to help me after school), played and sang

our theme song "Ordinary Miracle".

My sweet friend Corrine sang "What Faith Can Do".

Our hero and fellow heart transplant recipient Paul Cardall

played two very beautiful pieces," Gracies Theme" and

"My Heavenly Father Loves Me". He also gave a sweet and faith

inspiring message directly to little Mason. (More tears for me!!!)

I do have a very grateful heart and tear filled eyes this day for the many people; friends, family, and strangers who rallied together to help lighten the financial burden Mason's heart journey has placed on our family. I want everyone who has donated to Mason's Fund to know that every penny counts and WILL be used to pay for Mason's bills and medication.

I want to keep this post on a positive note, but just so you have a greater understanding of why our friends gave us this fundraiser:

When you have medical insurance there are always fine print details that you think you'll never need to read because they'll never pertain to you. We have learned a lot about those unread fine print details on long the way since Mason was born and diagnosed with his congenital heart disease. We knew going into this "transplant chapter" of our journey about $40,000 (part of that fine print) that our insurance would not cover for the harvesting of Mason's donor organ, but since the bills have started coming there is another $20,000 fine print item of the transplant that they won't cover either (exceeding pharmacy and laboratory costs the day of transplant). In fact, on Tuesday I got a statement in the mail from our insurance that showed us responsible for $107, 380 of the hospital bills just for the day of transplant!! Yikes!! That's outrageous! I have talked with our financial social worker here that said a lot of that we will fight, but not the $60,000 "fine print" items I talked about above.

We have applied and reapplied for disability medicare and SSI and continue to get denied. ( A family of seven gets denied in Utah if their monthly income is more than $1800!!) Our pharmacy coverage is pretty sad too, especially w/ Mason taking many expensive name brand medications. Just this first year we will spend $14,ooo -$21,oo0 out of pocket for his meds. It will get better after the first 12-18 months, because he will come off of or come down on several of his meds. And then, there is his lifetime max of $2.2 million that we have almost exceeded. I spoke with our case manager at our insurance company this week and we are just $300,000 shy of his max. But, they haven't even received any of his Bills since April 15th! When they do receive the rest we will most certainly go over $2.2 million. Then what? Honestly, I am not sure!! I've tried seeking the answer to that, but have yet to succeed.

I took a huge leap of faith bringing Mason here to Stanford for his transplant. Thus far, everything has fallen into place and has felt so RIGHT, I will not let myself (or our family) lose the faith now. I know it will work out....somehow.......it will!!! Mason is healthy with a beautiful new heart and that is what is important. We had an amazing turn out at Wednesday's fundraiser and what was earned has definitely lightened the load!!!! THANK YOU!

Many people have contacted Mark or I letting us know they were unable to make it, but would still like to donate. Donations are always welcomed!!! On the right bar of the blog at the top there is a donate button. Also I heard a few items didn't make it to the auction that were supposed to, so we could post them on the blog and let people bid on them through the comment section. Just leave me a comment or e-mail me (sumstrick@gmail.com) if you'd like to do that.

Many many thanks to everyone who has donated to Mason's fund. And many thanks to those who continue to pray for our Miracle Mason. Miracles do happen if we have faith in the power of prayer! To that I testify with all my heart!

A NIGHT OF CELEBRATION

TONIGHT IS THE NIGHT!!!

SEE YOU THERE!!!

I Love Short Stays

Mason already got discharged!! Wow! Very hard to believe with Mason's history. This was Mason's SHORTEST hospital stay for being sick. We both were very happy to head back to our "home-away-from-home".

After looking at yesterday's echo, Dr. Chin ( 1 0f the 2 transplant team dr's) doesn't think this is rejection! Yeah!! Normally w/ rejection there would be a change in function, but Mason's new heart continues to have great function w/ no apparent changes. I love GREAT NEWS!!

Last night Mason got one dose of IV antibiotic because the radiologist who read his chest x-ray said there was some pneumonia on his left lung. But......this morning when Dr. Chin looked at it he said his left lung looked fine. Without knowing Mason's history of having the Glenn surgery (re-routing his superior vena cava artery) and his lower left pulmonary vein stenosis it could appear like a mild pneumonia. So, more GREAT NEWS......stopped the antibiotic and Mason has clear lungs!!

Mason also stopped vomiting for 24+ hours. Yeah! That also would have kept us there, because he needs to keep ALL his meds down.........they all are very important for fighting off rejection.

The conclusion: Mason has some nasty little viral bug, but better off out of the hospital so he doesn't pick up an additional sickness! He's still not feeling wonderful, but definitely happier to be sleeping at home tonight. (Me too!)

Thank you for all your kind thoughts and prayers.

See you tomorrow night (by SKYPE at the fundraiser)!

MASON IN THE NEWSPAPER

Friends plan fundraiser for 2-year-old Highland boyHIGHLAND"-- Miracle Mason got his new heart.

Now his neighbors are seeking help so the heart won't cost his family everything they have.

The Strickland family of Highland has been living in two states for months, ever since 2-year-old Mason and his mother, Summer, went to California to get the toddler on a list for a heart transplant. Mason was diagnosed with hypoplastic left heart syndrome shortly after he was born and has spent his short life in and out of hospitals.

But he was home enough for his neighbors to absolutely fall in love with him. So, when they realized the family had thousands of dollars in medical bills not covered by insurance, Erin Goff, Susan Bland and Mandee Grant took action. They've planned a dessert bar, live auction and concert for 7 p.m. Wednesday at Blue Lemon Restaurant in Highland." ...............to read more go to:http://heraldextra.com/news/local/north/highland/article_a854151e-d8e2-5adb-b629-2fe153e48d56.html

*click here for a MAP to "Mason's Charity Event with Special Performance by Paul Cardall"

Infection or Rejection ???

Yes, that's right.....we are back in the hospital as of this afternoon! Bummer!

Mason was admitted this afternoon because he got sick over the weekend. I guess we wore him out having so much fun with the whole family here!!

We do hope he did just pick up a yucky bug and that his symptoms are not because of rejection. It is hard to tell the difference between an infection and rejection w/ heart transplant kiddos. Symptoms can be very similar.

He has thrown up his meds and some of his feeds since Saturday morning and then last night came down w/ a nasty cough and fever. The doctors want to make sure he is staying hydrating and keeping his meds down, while monitoring him for any more signs of rejection.

So far in the last couple of hours since we got here Mason has had an echo, chest x-ray, blood cultures and other labs drawn, urine sample taken, seen by 3 doctors, and I think that is it......enough don't you think!!! They take these symptoms very serious! But, I do not have any of the results yet!

PRAY with us PLEASE that this is just a simple little harmless infection and not rejection. PRAY that this will be a short hospital stay and not delay our return to our home in Utah. Thank you for your love and support! I will update when I have news.

*****Don't forget Mason's Celebration Fundraiser Night*****

This Wednesday, June 23, 2010

7pm

Amazing Concert

(Paul Cardall, Camille Aagard, Corrine Selk, Maddi Bischof)

Great Auction

(One night stay at Park City Hotel with dinner at Ruth Chris,

signed balls by Chad Lewis, Steve Young, and LaVell Edwards,

IKON Treadmill, lots of gift baskets to local establishments, and much more.)

Yummy Desert

(by Blue Lemon)

Raffle for Flat Screen TV

PS.........I will post pictures of our fun family week soon.

BIG SMILES

"A child's smile is one of life's greatest blessings."

Mason had some very big smiles when 3 very special people drove all day Sunday to come visit us. When Kaitlin (11 year old sister), Ammon (5 year old brother), and Sammi (our "life saver nanny") walked in Sunday to our 'home-away-from-home' Mason was very excited, and happy! He greeted them each with a big hug. Mark and our two middle boys (Preston 9 and Braiden 7) stayed behind for baseball, but will come join us on Thursday also!! We will spend Father's Day weekend all together. Mason and I have been a bit home sick so we've been looking forward to this week. Plus, we haven't seen Ammon since Easter week (9 weeks ago) and have missed his big smile very much!!

Mason's medical needs and hospital/clinic visits continue to keep us very occupied and busy. He is doing extremely well though. Knock on wood! NO jinxing please!!

He is still having issues getting his Cyclosporine level where it should be, as well as balancing out his diuretics. About 2 weeks ago his potassium was way too low so Dr. B cut his Bumex (1 of the 2 diuretics he takes) dose in half , thinking he was ready to come down on it. Because of the high doses of steroids Mason takes, he takes diuretics to help with the side effects of water retention and swelling.

When this change was made Nancy, the transplant team nurse practitioner, told me to watch for swelling in his face, because this can be a sign of effusion (fluid around the lungs). I said "How can I tell? His face is already so round and puffy! (from the steroids and Cyclosporine)" and she giggled. But, I was serious. Poor little guy's face is so so chubby, plus his cheeks get red and hot several times a day. I imagine it's got to be uncomfortable! ( To our post transplant friends: Is it?)

Well, back to the dose change. Over the next week and 1/2 I noticed his breathing getting a little faster and louder. I couldn't tell any difference in his face, but he was starting to cough while sleeping. We discussed it at clinic yesterday and decided to do a chest x-ray. It was a good thing we did! He has a small effusion on the left lung. So back up on the Bumex. He was not ready for that switch yet. Getting Mason off diuretics will be a tricky one, because he was on a pretty high dose of Lasix for a whole year before transplant to help with his heart failure.

The good news is that he also had an echo yesterday and it looked BEAUTIFUL. Of course, I LOVE that kind of news! Mason's Angel Heart continues to be very strong and healthy. I will never go a day without thinking about how grateful I am for this priceless gift from our donor family. Nor do I or will I go a day without thanking my Father Above for the many miracles that have touched our lives along this journey.

Off to spend the day with my kiddos! As always...no news is good news and I will try to update again soon!

"A smile from a child is packaged sunshine and rainbows"

"Thank You" To Many Wonderful People

Over the last 2 months since Mason's transplant, many wonderful people have sent us some very special gifts of love. Each time Mason and I have received a gift I have cried tears of gratitude and happiness. I am truly in awe of how many hundreds of people have been touched by Mason's story. It is all of your prayers, love, and support that have carried me through this tough journey. THANK YOU!!!

Here are pictures of a few of our special gifts:

This a poster (front & back) Mason received from all the children

from church back home. Upon it are very sweet notes personally written

by the children and pictures of each class. The nursery aged kids

(Mason's age group) included their handprints and a note from their

teacher that says they pray for Mason by name every Sunday in class.

This is so special to us, to know how all these kiddos pray for our Mason!

This one really made me cry!!! Thank you!

A very kind blog friend from New York sent Mason

2 new shirts to celebrate our discharge. They are just perfect!

Thank you!

A fellow "Heart Mommy" (Mommy to Cooper) sent me two

darling charms. She also sells these Hopeful Hearts charms

and gives a portion of the proceeds to a local heart foundation.

I love these charms and wear them all the time!! Thank you!

The next 2 pictures are from a FREE photo shoot we were

gifted from the Littlest Heroes Project. This a is a very

large group of Photographers worldwide that donate their

time and talent to children with life threatening illnesses.

Oh how I love pictures! They are absolutely priceless!

A very big "thank you" to Michelle Riddle from Santa Cruz,

who was our photographer. She did a wonderful job!

I couldn't have asked for anyone better! Please click on her

name and it will link you to her blog. You can see additional

pictures of Mason, plus more of her beautiful work.

We've also received toys, flowers, get well balloons, cards, books, music cd's, treats, meals, gift cards, sky miles...and more from Utah, New York, Conneticut, Philidelphia, and California! Many, many thank you's.

These sweet surprises definitely help on days when we are homesick or going over some of Mason's "speed bumps".

And thank you to those who continue to take meals to my family at home and to our neighbor hood watchers who make sure my kids all make it home before midnight!!! (Okay, not really midnight, but close sometimes I think! Dad's just don't believe in bedtimes like Mom's do!!) Thank you to Mark (Daddy) and Sammi (Nanny) for doing ALL YOU DO to hold down the fort while I'm away!

-----------------------------------------------------------------------------------------------------

A quick update:

Mason had his transplant clinic today (Wednesday) and the doctors continue to be very happy w/ his progress. His echo showed that his heart still has perfect function! Yeah!! We are having trouble geting Mason's Cyclosporine level correct though! They want it around 300- 350 (the amount found in his blood 12 hours after the last dose) and last week his was 450. So they slightly lowered his dose and now Monday's blood draw showed a level of 250. It is just all over the place! Too much can cause high blood pressure and other problems, too little isn't doing enough anti-rejection. After going back up on his dose Monday night we will go again Friday for another blood draw. Eventually we will get it right!

Mason doesn't have another catheter or biopsy until June 29th! Yeah! A well deserved break for my little guy. When we get to go home will depend a lot on this next biopsy! Please pray with us for a ZERO.

----------------------------------------------------------------------------------------------------One note about Mason's Celebration Night fundraiser:

Several people have asked me if there will be food at "The Celebration". I have been told that the night will consist of dessert , an auction, and a concert. Thank you to those who are planning on attending! Please spread the word!!

A NIGHT OF CELEBRATION

Here is the long awaited official announcement for Mason's Fundraiser!

Just click on the flyer to enlarge it.

To donate something for the auction please contact Erin, (erin.goff@comcast.net)

and to RSVP please contact Michelle Hiles, (mhiles@serveutah.com) .

I know all those involved have planned a very special evening. I was also just told that a special guest from Channel 4's "Good Morning Utah" will be emceeing the program and auction! Don't miss out and please spread the word around to your friends and family. Even better, post the flyer on your blog!!!

We are truly grateful for this fundraiser. We have health insurance, but it is not wonderful. It is paying a great portion of Mason's transplant bills, but for certain is leaving us responsible for about $60,000 before this chapter of our journey is all said and done! Yikes! AND.....Mason's meds are costing us between $1200 and $1800 a month out of pocket (that's after the insurance pays their portion). We still have not received all the bills, but we are pretty sure Mason's bills will exceed his lifetime max! That being said, we are very grateful for every donation made on our Miracle Mason's behalf.

If you cannot attend the event, you can donate through pay pal to Mason's trust fund. There is a link on the right side of the blog. You can also donate at any Wells Fargo branch.

Mason is doing very well. I am amazed everyday to see him with pink lips, fingers, and toes........and to watch him breath without the help of O2......and to play with him and not have him be exhausted after just a few minutes.......to know his special angel heart has given him NEW LIFE! Thank you Donor Family, and thank you Heavenly Father for making this all possible.

Happy Happy 30 Month Birthday!!!!

Miracle Mason is now 30 months old (as of May 30th)! Wow! Is he really already 2 ½ years old? This little guy has sure been through a lot in his 2 ½ years of life!

Although it feels like I have run many many marathons in these last 2 ½ years (but actually not even 1 since he was born) and parts of this journey seem like a decade ago, it seems like just yesterday that I held 5lb little newborn Mason and had NO idea of the journey we were about to begin nor that our family’s lives would change forever!

At 3 days old when Mason crashed and ‘flat lined’ in front of my eyes I had NO idea of the trials, the joys, the fears, the blessings, the prayers, the tears, nor the mountains we would climb during the journey we were entering to fight for the life of our very special child.

I wouldn’t trade all the lessons I’ve learned or the faith I’ve gained during these last 2 ½ years for ANYTHING!

Happy 30 months Miracle Mason! Cheers to you and all the mountains you have climbed!! Thank you for teaching all of us so many lessons about life and HOPE!!

Here are a few pictures from the last few weeks:

Busy making messes!

A visit from Daddy and Big Brother Preston

Having lunch in Half Moon Bay

Taking over the driver's seat.......watch out!

Fell asleep talking on his toy phone.

Cute smiles!

Playing peek-a-boo with his favorite blanket!

Not liking 'blood pressure time'!

Cute pictures in the backyard!

So happy to be outside!

Loving walks to the parks and enjoying the swings.

A Sunday picnic at the park with Mommy.

A cute little tid bit: Mason was very sad when the home health care company came and picked up his O2 concentrator and tanks the other day. He had real big alligator tears!! Poor little guy! He must have felt like they were taking away his toys or something very important. He should have been jumping for joy like the rest of us to know he doesn’t need extra O2’s anymore!!

Dear family back home,

Oh how we miss you and wish you were here to celebrate 30 months with baby brother. I miss how you make him laugh better than I ever can! I miss watching him scoot around the house following you. Mason and I both miss your smiles, hugs, and kisses. I’d even come home to all the messes and piles of laundry if I could just to be with you right now!! Soon. Soon. Soon we will be together again!

Love,

Mommy and Mason

THANKS TO ALL OF YOU WHO FOLLOW MIRACLE MASON'S BLOG, CONTINUING TO LOVE AND SUPPORT US!