Miles for Mason Update

The following e-mail was sent out to our neighborhood/ ward and then I forwarded it on to my e-mail contacts:


The Miles for Mason Bike Ride is coming up soon.

Saturday October 10

But we have some great news!!!! We have added a "Kids/Family Walk"!!!!
It will be a 1 mile walk through the neighborhood of Dry Creek, so it will leave the parking lot of the Stake Center and end at the same spot!!

The suggested donation for the "Kids/family Walk" is
$5.00 per person

Registration for the Bike ride and for the Walk is 7:30am - 8:45am

There will be tee shirts for sale
$8.00 for kids
$10.00 for Adults.

Please join us for this Fundraiser

***If you have questions about this event please contact: "Alejandro Vargas" AVargas@dialogue-marketing.com


***The Charity Dinner in honor of Miracle Mason will be on Thursday November 5th at the Alpine Country in Highland. I will post the flyer with more details as soon as I recieve it. With donations for the silent auction during the dinner please contact Scott and Susan Bland at: 801-310-6864, 801-369-0952, or sbland@pmidirect.com

Miles for Mason

We have some wonderful neighbors and friends who have put this together for our Miracle Mason:









We would love to have you all there! Also, look for upcoming details for a charity dinner in honor of Mason sometime in November.
If you or know someone who could donate something to the silent auction that will take place at the dinner I will post soon who you can notify about the donation. Thank you!


PS... Thank you for your continued prayers. Mason continues to do well at home. He has even come down quite a bit on his O2's.

Comfort

(This picture was taken in our front yard on a love sac the kids had just received from Grandpa and Grandma. They rolled into the yard before it ever made it into the house. It was the jumping bag /entertainment for the day!)

I want to thank each of you who have sent comments, e-mails or texts, prayed, fasted, brought by cookies, flowers and many other ways of showing your love and concern to our family. Through all of this I have been able to find the necessary comfort and strength to continue to go on with life, to take care of my family, and to find joy in each day I have with Mason. Though even with this comfort, I'm not trying to fool anyone. I still cry each day, several times a day, as I think about the day of Mason's Heart Cath, Dr. Everett coming out of the Cath Lab with red teary eyes saying she needed to talk to me, and the devastating news about Mason's failing heart unable to receive a transplant. This broke my heart, shattered my hopes, and left me numbering the weeks and days I have to spend with my baby. But I can't even imagine going through this alone, without the comfort of wonderful family and friends, a loving Father in Heaven, the Gospel of Jesus Christ, and a supportive "heart" community.



After fasting and praying along with everyone who joined us (and still continue to...thank you!!) I feel comforted with our decision to send Mason's medical information on to a few children's hospitals who specialize in heart-lung disease for their opinions and advice. As a mother I need to know I did everything possible to give my baby a chance at life. Maybe, there is another miracle out their for our Mason. Or, maybe I just need more information to know and accept that we've done all we could to optimize our baby's quality of life. Although I feel like my hopes were shattered and I am trying not to get my hopes up once again as we seek more opinions, hope and faith are all I have to hold onto now. As I go forward with this faith and hope I am comforted knowing there are so many praying for Miracle Mason and our family.



The good news is Mason is doing really well. He has seemed much stronger the last two weeks.Watching him scoot around the house and continue to get into all the cabinets and drawers with a big smile on his face, it is hard to believe how truly sick his little heart and left lung really are! He is trying to crawl up stairs and pull himself to a stand. He needs a bit of help, but will now put weight on his feet and actually enjoys it. He will also scoot on his bum all the way down the stairs. Not just a couple of steps, but 17 steps from our upstairs to our main floor, and then again down another 15 steps to the basement. He laughs with each step! It is sooo cute! I need to get in on video. These little things, which are actually huge things for sweet Mason, give me comfort too!

Thank you again and again for all your love and support! I will continue to update as needed. Dr. Everett has been out of town, but we will begin this week to send Mason's information on to other hospitals.

Back to School

Just a little late, but I wanted to post some cute pictures of Mason's big brothers and sister (since they are 4 of his greatest fans) on their first day back to school. The three oldest started on August 20th and Ammon started on August 27th.

Ammon (4 1/2) returned back to the same full-time school he has
been at the last year and a half. I am very happy that he is still
able to go to this certain preschool class, because his teacher is absolutely
wonderful and her program has helped his progress tremendously!
And the other bonus is that bus picks him up and brings him home
right from our house! This is a huge blessing and he loves the bus too.

Braiden (6 1/2) is now in first grade. He loves going to school
all day with the older kids. He hasn't complained once about the
school day being to long. He also loves lunch and recess now
because he gets to hang out with his big brother. Braiden eats lunch
with Preston and his friends and then they all go out and play football
together. I love that those two like to hang out!

Preston (8 1/2) is now in third grade. A month after we had moved to
our home here in highland he started kindergarten. I can't believe how
time flies. Preston, like most boys, has two favorite things at school...
recess and p.e. ! I am proud of Preston for including his little brother
at school with his friends. Football practice and games are the motivation
I use right now to get him do do his homework. Thank goodness for that.

Boys, boys, boys!!!

Kaitlin (turns 11 this week) is in 5th grade this year.

Because she is our oldest, she seems much older than this!
Kaitlin takes on so much responsibility in our family and I'm
so thankful to her for all her help. As usual, she is all about
fashion and friends, but manages to be a great student too!

I must say even though I dearly love all of my kiddos, I am very grateful to have them back in school at this time. With the heart breaking news about Mason being ineligible for a transplant I want to spend every possible minute I can with my sweet baby. This is the first time in many years that I only have 1 baby at home with me during the day (except for Mondays, Ammon doesn't have school). Usually I've had three kiddos home, because part-time preschool and half day kindergarten don't count! Time is a blessing right now. I am cherishing every moment my Miracle Mason and I have together.



Thank you to all of you for you prayers and dear thoughts of love!

A Broken Heart

It has taken me 24 hours, since the news of Mason's Heart Cath, to pull myself together enough and to pick up a few of the pieces from my shattered heart to be able to post about my sweet Miracle Mason. Thanks to Shauntelle (Kaidence's Mommy and dear heart friend) who fortunately happened to be there for a cardiology appointment yesterday, was there for me to cry with and hug when I was told Mason was not going to be a candidate for a new heart. Mark was coming up to be there when they were supposed to finish the cath, but they called me to the cath lab an hour early. Thank you to everyone who has sent comments and e-mails in response to Shauntelle's post yesterday.



So what were the results? Mason has pulmonary vein stenosis. Which I am still learning about myself. But, basically there are two pulmonary veins on each side of the heart going to each lung which bring back oxygen rich blood from the lungs. Stenosis is when there is partial or total obstruction in the vein. Both of Mason's pulmonary veins going from the left side of his heart to his left lung are totally obstructed. Thus he can not have a transplant without at least one of those flowing from heart to lung. You need at least 3 of the 4 (his two on the right side are fine) veins open and working to receive a new heart. This also means he has a very sick left lung along with the high pressures in his heart causing the low function.



What can be done? They only other option presented to us is a heart-lung transplant. But that would have to be somewhere else like Boston or Stanford.....and he may not even be a candidate because of how progressed the stenosis is.... and usually the risks out weigh any positive outcome of this type of transplant. We have not yet decided on getting a second opinion or not, because we do feel the cardiac team at Primary's his highly qualified. We are praying for guidance.



Although I had expected to hear from his cath that "yes" his pressures are high and he does for sure need a transplant I am taking these results with faith that our Heavenly Father does have a plan for Mason. Definitely a different plan than we had hoped for with a new heart bringing him a higher quality of life, but we can still pray for miracles along the rest of our journey with our sweet baby.



At this time, we plan to optimize Mason's quality of life the best we can with his heart meds and oxygen (as well as still avoiding sickie germs) keeping the broken heart he was born with. He will continue to see cardiology every 4 weeks, or more often as needed, for check ups and to up his meds as he gains weight. We will enjoy our Miracle Mason as long as we are blessed to do so.


Thank you for all your sincere concern and prayers. We will be doing a special prayer and fast on Sunday for Mason and our family. We would love any or all of you who follow our story to join us as well.

FAITH, LOVE AND SUPPORT FOR THE STRICKLAND FAMILY!

Dear Friends and Family,

Summer has asked me to give a quick update regarding the Heart Cath that little Mason had this morning. Mason seems to be doing fine. However, Mark and Summer did not receive the news that they had hoped for from the doctors after the procedure. Due to some issues, Mason will no longer be eligible for a heart transplant. Their hearts are broken.

As far as I am aware, they will be bringing Mason home this afternoon. Please keep Miracle Mason and his family in your prayers. Also, this Sunday we will be having a special fast for Mason and his family. Mark and Summer have many hard decisions to make in the weeks to come and I know that through fasting and prayer they will be given the guidance and peace needed.

Mark, Summer and family........We love you and will do whatever we can to help carry you in the days ahead. Our thoughts and prayers are with you, Mason and all of your family.

With Hope, Faith and Love,
Shauntelle

Look At Me! I'm 21 Months!

On Sunday (August 3oth) Mason turned 21 months. Every month, every milestone, is a miracle and a great celebration. Mason may be tiny ( a whole 17 1/2 lbs) but he is always over flowing with love and happiness. Even when days are chaotic and crazy with 5 kids going all different directions, all I have to do is look at Mason's constant smile to remember life's true meaning....to remember how special it is to be a mother.....to remember what is really important.

Here are a few cute pictures from August:

Mason in his favorite evening hangout spot, the back deck,
watching all the neighborhood kids play.

Mason is trying to climb the two steps from the
family room into the kitchen. He figured out how
to get down (scooting on his bum!) but is still
working on going back up. And he put big brother's
hat on all by himself.

Mason actually sleeping, this is a rare occasion!!
And not in his crib of course! Why would he sleep there?

Scooting around the kitchen on a lid to a pyrex cake dish
and attempting to empty out one of the kitchen cabinets.
Mason has this silly fetish for sitting on something.....
a paper plate, a book, a toy, a lid, a hat etc..
and scooting around the house on it.

Happy 21 months Mason! We love you! Thank you for filling our home with sunshine.

Antibody Test and Pre-transplant Consultation

We had a very long day up at Primary's yesterday! Sweet little Mason was so exhausted he fell asleep in his high chair at dinner time when we got back home.

I'll start with the good news first......which is the kind of news I needed at this point in our journey with Miracle Mason. The results of his antibody test (or PRA- panel reactive antibodies) were great! His class I antibodies (these are the strongest type of antibodies which would cause his body to reject a new heart) came back at 0% !!! His class II antibodies came back at 98%, (being the very weak antibodies) and I was told the class II don't matter much. (I 'm not too clear on the class II, but when Dr. Everett said this is good news I'll believe her.) They will test his PRA levels every two weeks, because they can change. We will hope and pray they stay in the "good news" range!


With these antibody levels Mason can receive a heart transplant at Primary"s! Yay! Otherwise we'd have to take him else where, like to Stanford where they do extensive treatments to lower antibodies, and be away from our family. We are so happy about this!


On to the all day consultation and evaluation.....this isn't necessarily the bad news, it was just a lot of information to take in and swallow!! The truth of how tremendously expensive this transplant will be does create just a bit of financial worry!! But, how can you put a price tag on the value of out Mason's life?? That's why I say this isn't the bad news, just the reality. Just the heart transplant procedure alone will cost $300,000! And that does not include the hospital stay before and after, the surgeon's bill, the anesthesiologist's bill, or the pharmacy's bill! So the total could be between 1 and 2 million

Another topic presented was all the medication he will be on post-transplant. He will be on about 12 to 15 meds for the first 6 months and slowly wean off of several of them. The main 2 immunosuppresants he will be on for life. And for the first 6 months he can have very little contact outside of our home (or the hospital) because he will basically have no working immune system to fight of illnesses. All the immumosuppresants are to hopefully prevent rejection of his new heart. Talk about 24-7 care! Wait, more than he already is right now? Wow! Here's the other catch in our insurance...they don't offer the best pharmacy benefits (and pharmacy is not included in our yearly out of pocket either). So, even with insurance our out of pockets costs on all his medicines will be $1,600 - $ 1,800 A MONTH! ( And that's on top of our $800 monthly premium.) Did I already mention a fundraiser?!


My other concern is the wait. The average wait is 3-6 months once on the list, but in all reality it can be anywhere from 1 day to 1 year or more (if his little heart doesn't fail before.....I try not to think about that!) I also asked Dr. Everett what is the possibility of Mason waiting at home until a heart which matches is blood type and weight becomes available for him? She said it is possible, but she has never seen a child as young as him not get so sick while waiting for a heart that he has to be admitted to the hospital and be on IV heart meds until his heart comes! Ok, I hope Mason has another miracle waiting for him, because waiting for months in the hospital would be so tough on our family. For the week long stays we've had this year he would never let me out of his sight! And a week was hard enough on my other kiddos and Dad at home, but what about MONTHS?!


What's next? Mason will have his pre-transplant heart cath next Thursday Sept 3. This is a very invasive procedure which definitely concerns me , but it has to be done before he is listed for a heart. The last time he had one pre-Glenn (his 2nd surgery) he didn't recover very well and he ended up spending the night in the PICU, but normally you go home the same day. We will pray for a better recovery this time.


Usually after the cath , like the following week, Dr. Everett presents the child's case at two different meetings for full medical approval of listing him for a heart. The first is with the Utah Board of Heart Transplants (for adults and pediatrics) which includes all transplant Dr.'s, social workers, financial social workers, pharmacists etc. Then the 2nd is the "care conference" which includes the entire cardiothoracic team and cardiology team. One very important person at the care conference who needs to approve Mason's need for a transplant as well as agreeing that he is a good candidate is Dr. Kouretas, the heart surgeon who performed his other 2 open heart surgery. Because Dr. Everett will be out of town the entire following week she will present Mason's case this coming Tuesday and Wednesday right before his heart cath on Thursday. She is doing this in case the decision is made to list him right after his cath!


This means Mason could be LISTED for a NEW HEART as soon as THURSDAY or FRIDAY!!! This seems so unbelievable and amazingly surreal!


I've probably left out some information, but I think I covered most of the important details. My my mind is overloaded and tired. My heart is over flowing with emotions. My body feels like I'm in the middle of running an ultra-marathon. But most of all I am still at peace with making this step forward with our Miracle Mason! We are excited about the new and more fulfilling life a new heart can bring our sweet boy! Please pray with us that his medical teams will be inspired about what is best for Mason, that he will recover well from his heart cath, that Mason's heart will hold out while waiting (and even waiting at home would be optimal!!!), that our other children will feel loved and at peace during this trial, that his antibodies don't strengthen, and also that he will remain healthy, well... as healthy as a kiddo with only half of a heart and in failure can be (if he gets a fever, cough, runny nose, etc,,he will be taken off the list until better). Oh, and one more thing he needs to gain more weight!!!! (not to be listed but make him stronger)



Thank you, thank you for your prayerful help, your love and support, and all your care and concern. Together we can help our Miracle Mason continue to fight for his life!!


p.s. Mason weighed 17 lbs 8 oz on Thursday. That's a whole pound and a half since July 10th!


p.p.s.s. We along with some friends do have a couple fundraiser up our sleeves so we will keep you posted. Also at the top of the right column on this blog there is a donate button....ever penny will go towards Mason's medical care...so even a few dollars will help. Thank you!!!s! We do have insurance which will pay 100% AFTER our $3,500 medical max out of pocket (per person in the family) per year is met. But there are 2 catches in our insurance policy.... 1)Mason has a 2.2 million $ life time cap and since he was born his bills have already reached almost 1.2 million

Moving Forward

By the logo I have placed in today's post you have probably already figured out how Monday's ECHO and checkup went! With the results of Mason's ECHO showing absolutely no improvement, his liver being slightly more enlarged (another sign of heart failure), and my description of how poorly he is doing at home with eating, sleeping, energy level etc........ I didn't even need to tell Dr. Everett our desire to speed things up and do the Cath sooner. (Click on "Cath" to learn more about heart catheters.)



She told us she would like to have it done in the next couple of weeks to start the 'work up' to get him on the transplant list. She did ask me if this is for sure what we want to do.... and of course my answer was "YES". We are definitely for Mason getting a transplant! This is the only choice we have, to give him an opportunity to live longer. His failing heart will take his life eventually, in fact probably much sooner than I care to imagine! This all seems like a dream, a bad dream,....one you hope never becomes a reality for you or a loved one!


Then on Tuesday I got a call from the cath lab to schedule Mason's cath. When the lady on the phone said she was "calling to schedule Mason's pre-transplant catheter", my heart sank! It seems so surreal!


We scheduled it for September 3rd, the day he is already supposed to get the 'button' put in his tummy for his G-tube. So Dr. Everett asked the cath lab if Dr. O'gorman (the GI doc) could just come do the GI procedure in the cath lab while he is already under anesthesia....and it was ok'd by everyone involved. I'm so glad they will do that for us, because it saves me another trip up to Primary's.


On Wednesday, Michelle, Dr. Everett's N.P. called and said they would like to meet with us sometime before the cath to do the entire transplant consultation. This involves talking with a social worker, a transplant financial worker, a pharmacist, and the transplant team. Michelle told me that Dr. Everett said she wants to have everything ready in case the results of the cath show that he needs to be listed for a heart right away! Okay!!!!That took me by surprise!!!! Honestly, I was not quite ready for all this but am glad we are moving forward! Anyways we will meet with them next Thursday August 27th.


Mason had his blood drawn on Monday to check his antibody level. We will get the results next Monday or Tuesday. Please pray with us that his level is not too high to complicate getting him on the transplant list. He does have donor tissue on his aortic arch which was placed there to build it up during his Norwood(1st heart surgery) which can cause an increase in antibodies....but hopefully his level will still be within the "ok" range.


As I contemplate about Mason's transplant I am at peace knowing this is what he needs. I am also at peace knowing Mason is one of Heavenly Father's very special and choice children and that he has a plan especially for him. Although, I am still very scared and nervous for Mason's new medical path, I am trying very hard to focus on the blessing and miracle he has been everyday to our family. I love his cuddles, even when he wants them all night long, and I love when he smiles at me even when I know he doesn't feel good! I love my Miracle Mason more than words can express and I Pray he can get a new heart so we can cuddle for many more years to come.


PS....the good news of the day.....I should have put this at the top of the post...even with all his vomiting lately and not eating much orally......Mason put on another 7 oz! On Monday he weighed 17 lbs 2 oz! Yay for the G-tube!!!

Sleepless Nights

As we all know Mason has never been a good sleeper. Lately it had gotten even worse! Is that really possible?! This week there has been at least three nights that he got a whole hour and a half of sleep!! The other nights his average has been 3 hours! Usually in the early mornings around 6:30 I can get him back to sleep, just in time for Preston to get up for football (yes, 3rd grade football at 7am 5 days a week! Crazy!.....at least when school starts it will be in the evenings), and then if I try to lay my head back down for a little more sleep Ammon gets up and wants to wake up everyone else! I try to occupy him so little Mason can get some more sleep.


First of all...he NEEDS more sleep, second of all...you'd think a little guy in HEART FAILURE would sleep all the time, third of all...I NEED more sleep too!! I know most days I feel exhausted, but some how (and I believe with angels holding me up) I manage just fine to go on with my day and take care of my busy family. Okay, so in all reality my kids sometimes tell me I'm grumpy, and I know I am, but I try really hard not to be. (Usually I'm grumpy according to them when no one wants to do their chores!! But I need their help!!) And my secret to survival this summer....I am lucky enough to have a sitter come most afternoons to help w/ my other kiddos so that Mason and I can take a nap. (Thank you to Lyndsi and Torie, and to family and friends who cover for them when needed!)


As for Mason, I have a few theories on why he may not sleep. 1) Scared to go to sleep because of bad memories of waking up in the hospital. 2) His arrhythmia medication which he took for his first 15 months of life caused restlessness, and now even though he's been off of it for almost 6 months he has really bad habits of thinking Mommy needs to hold him all night 3) Due to his heart failure he just really doesn't feel good. Poor little guy at night lately tosses and turns, while crying and breathing quite hard:( To me it seems like he's got a bad tummy ache! So it could be one, all, or, none of the above! I pray my sweet little Miracle Mason can get some better sleep for his health and my sanity.


As for me, even when I finally get Mason to sleep, lately I have trouble falling to sleep. My mind wanders to Mason's future. I sometimes see him go through all the stages of childhood my other kiddos have, think of sending him to kindergarten, see him running and playing with his siblings and friends, see his sweet personality shine upon those he meets throughout his school years.....then I tear up and wonder am I in denial? Is his mission in life shorter than I desire? What would I do without him here? Will he get a new heart in time to fulfill my hopes and dreams? I worry for my sweet baby!


Mason seems to be getting sicker rather than better this last month. He now refuses almost all foods and drinks! Thank goodness for the G-tube. He went from being a really good eater to not wanting anything. This makes me so sad because this is a true sign of heart failure! He will still breastfeed but tires out much sooner than he used to. He looks paler and some days is quite lethargic. It is very sad! We go for an echo, blood work to check his level of antibodies, and his last dose change of the carvedilol this coming Monday. We are going to talk Dr. Everett about doing the heart cath sooner than in another month, because Mark and I feel we don't have much time to waste. We feel he needs to get on the transplant list sooner than 3 more months!


Please pray for our Miracle Mason! It comforts me knowing so many wonderful people are praying for out broken-hearted baby. Thank you!