Wednesday, August 9, 2017,

8:30 am on Alaska Airlines

Post-transplant 4 months 5 days. 

Jason here.  It has been months since I have updated.  As many of you know, I usually do my blogging while flying to Calif.  Well today we are flying but NOT to Calif, this time we have our entire family with us.  For the first time in years, we are going on vacation!  More about that later.

This summer has been a busy one.  We have worked hard to get caught up from the Calif experience and prepare to take off on this vacation.  Both of those together equals some very busy days.  Buts it’s all good.  Still, so nice to be home.  Gage and the crew are all doing well, nothing to report there.   On our way back from our vacation, the plane has a layover in San Francisco.  Gage and I will get off and head to Stanford for a biopsy.  Stacy and the rest of the crew will finish the flight home and get back into life.

This summer our family has done quite a bit of farm work in addition to the regular office work I have.  We had a lot of hay that needs to be cut, raked, baled and stacked.  Our goal was to have it all done before leaving.  We started back in late June and finished the night before we left on this trip.  It was a good experience for our family.  Always good when there is good work for our kids to do.   

Stacy and the kids have also been doing some serious de-junking in the house.  Two years in Calif and created a lot of ‘stuff’ in the house.  With Stacy leading the charge, they started in Lindsey’s room and then worked their way from room to room.  So far there has been at least 12+ bags to the DI (or Salvation Army) 2 heaping truck loads to the dump and I load to recycling.  And we are still not done!  Feels good to clean out!

On a very personal note, we have had to deal with some ‘attitudes’ in our family. (Very lousy rotten spoiled attitudes to be frankly honest).   There has been some lazy, entitlement, selfish attitudes that we have had to deal with.  Stacy and I think it might be a product of the small confined RMH we lived in with too much idle time on our hands.  It has been tough trying to teach our kids to work, clean up after themselves, do chores, and be thankful for what others do for them.  I am pretty sure we are the ONLY family out there that has to deal with this kind of thing.

Now for the fun stuff.  We have boarded a plane in Portland and are now flying west… to the islands of Hawaii.  Aloha!  Stacy’s mother Renee and her step father, Randy are serving a mission at the PCC in Oahu.  So we are going to see them for a week and all the sights we can get in.  Then, we are going to hop a flight to the big island, and see Stacy’s sister Kelly and her family for a week.  Kelly son, Stetson, is leaving on a mission and his farewell happen while we are there. Since our kids are healthy enough (for now) and Sierra is a senior in school this was a good time to go for it. So we did….  

That is it for now.  Pictures to come.

Jason

9:02 pm. Fun day on the beach in Laie. Boogie boards and playing on the beach. We are all pooped and ready for a fun today tomorrow.

To California for Biopsies

This week was time to return to California for routine biopsies for Gage and Lindsey.  Lindsey had her annual biopsy.  Her coronary arteries look great and she received a ZERO!! Gage had his routine monthly biopsy and he received a 1A (essentially a ZERO)!!  We will take that.  Both of their pressures were great.  It was a long day yesterday.  Lindsey had her annual biopsy where they go in through her groin.  Afterwards she has to lay flat for 4 hours.  While she was recovering, she started bleeding, so her 4 hours had to be started over.  Instead of leaving at 7:30 PM we left at 9:30 PM.  Needless to say, we were tired and ready to go.  Our morning there started at 9:00 AM with an appointment for Sierra then Gage checked in at 11:00 for his biopsy, Lindsey at 11:30 for her biopsy.

Today was a much funner day.  Lindsey had her appointment at 9:00 AM for follow up of an exercise study her and Sierra are participating in.  While she was at her appointment, we had a fun morning visiting friends in the hospital.  Six of our friends received their transplants this month, most in the last couple weeks.  They are all doing great and it is fun to see their waiting time finally end.  After our visits and appointments, I took Lindsey to her good friends Kirtana and Sierra to her BFF Nori, while Gage and I met our dear friends Mrs. Blazinsky, Miss K and Fiona.  We played at the museum and zoo then went to the park.  Ending our evening going to dinner with all of us (Miss K, Fiona, Mrs. B, Sierra, Lindsey, Gage and I).  It is nice to come and  "visit" our friends in California.  We do miss them and it is nice to have a reason to come back and catch up.  We feel so very blessed to have so many wonderful people in our lives.

So our plan now is as follows.  Gage will meet with our doctor in Boise in 2 weeks, then return to California at the end of August for his next biopsy.  Lindsey will see our doctor in Boise in October and return in January for her next biopsy.  She has been doing so well since her transplant.  No rejection or issues.  It has really been a great blessing.  Sierra sees our doctor in Boise in September and returns in October for her biopsy.  Gage has monthly biopsies until October then he will go every 3 months if they continue to look good.  It will be nice to space our visits out a little bit.

Jason, Megan and Hunter stayed home and are working hard at getting ranch work done.  It has felt great to all be together and eat meals as a family! We could ALMOST get used to it.

 Fun with Mrs. B, Miss K and Fiona.

 Aunt Tiffany came to visit before we left for California.  The girls had a fun night of makeup with blindfolds on.  They looked stunning in the end!!

They even held down Megan and decorated her face for her.

 Lindsey and Gage at biopsies yesterday.

Home and LOVING it!

Gage and I arrived home in the late afternoon of the 29th of June. Since then, we hit the ground running and have been enjoying and taking in our time at home ever since.  We have had the pleasure of attending 2 reunions and started the "cleaning/dejunking process" of our house.  This includes weeding garden and flower beds, staining fences and decks, ranch work and visiting with family.  It finally feels like summer!  The kids might think they have been admitted to a work camp, as there is a lot more for them to do, but our new motto is, "work hard play hard."

Gage is doing great.  I will be taking Gage, Sierra and Lindsey to California next week for biopsies and appointments.  It has been really nice having a couple weeks to have a break from biopsies, clinic and blood draws.  We are taking each day in deeply.  Always walking tentatively not knowing how long this will last.  I have enjoyed watching sunsets, being able to see the stars at night and the good feeling  being home all together.

So far, we have thrown out 7 bags of "stuff" from 2 bedrooms and one bathroom.  We still have a lot further to go, but it is great to be home where we can do that. We are slowly making our house feel lived in again, inside and out! Tomorrow, the 5 kids and I are heading to Boise for appointments.  Sierra, Gage and possibly Megan will check in with our pediatric cardiologist there.  Megan just for her annual echocardiogram.  We will then leave there and head to 4 orthodontist appointments.  It should be a fun day.  Hope for some shopping somewhere in there as well.

Our first stop when we got home was to say "Hi" to dad at his office.

 Tour of Grandma Bingham's (Jason's mom) old stomping grounds. Then on to Bear Lake.

Next reunion, having fun hiking in the mountains near our house. 

 Enjoying some tin foil dinners in our fire pit in our yard.

The reward for a hard weeks labor.  Hiking in to a mountain lake and cliff jumping. 

 No, we did not let Gage jump from the high cliff.  He just jumped in from the rocks in the picture. 

 Today Gage was baptized.  We believe in baptizing at the age of 8.  He could never be baptized because of his VAD.  It bothered him a lot.  BUT, today he was finally able to be baptized.  It was a very special day and he was definitely ready.

My wonderful family who came to help with it all!!

Day 600, June 29, and Heading Home

Figured it was about time ole Uncle Jason did an update.....providing Stacy is on the road and headin' home!!  Gage got a big fat ZERO, so they made a run for it.  We are all so excited to have them home (or at least on the road).

Frankly, it's been a long week for the kids here on the ranch.  I have been working late nights baling hay and up early irrigating, not to mention the office tax work I am doing.  Kids would really like to have their mother home so they don't have to clean up after themselves or cook their own meals.  It has been really good for them to see just how much their mother actually does for them.  Hopefully this will be a good lesson.

Stacy and I have both felt a bit sad for leaving California.  This is an emotion I was not expecting.  As excited as we are to be home and reboot our lives, we are leaving a huge network of wonderful people in California.  Yes we will be back, many many times we will be back, but hopefully they will be visits, not for years at a whack.   Anyway, we are just a little sad to be leaving such good and often challenging memories.  But we will be back.... in 3 weeks to be exact.

Hey, guess who just walked in my office here in Oregon.  After 12 hours, Gage Aurelius just walked in.    Time to go... till next time (at there will be)

Jason

Last Monthly Biopsy

So, after my last post, I sat here and fretted for 2 days.  Not feeling great about heading home for a week.  Then, on Sunday morning, I decided I would pack for only a couple days.  If it still didn't feel great, I would not go.  I think going more short term gave me a better peace of mind.  Sierra, Gage and I loaded up and headed home to Oregon.  We made it home in time to spend the evening of Father's Day with Jason and most of his family.  It was REALLY nice to be home and together.    It was a good time to return home, as some of the kids were having meltdowns.  The weight of us being apart and single parent families is beginning to take its toll.  Again brief, but enough to reset and get strength to finish off this last week for everyone.

Gage and I drove back on Thursday, in time for his clinic on Friday.  There really are no changes they made.  Everything has seemed really stable.  IF his biopsy is a zero or 1A tomorrow, we have been given the okay to return home for good! Who knows how long that will last, but we will soak in every minute of it. In the meantime, we have been finding ways to keep busy.  Gage went with one of his good friends, Efraim, from the RMH to a trampoline park.  We all had a great time! He jumped and rock climbed and enjoyed those activities he wasn't able to do on a VAD.  Thanks for going with us Melissa and Efraim!

Sierra's halter monitor came back looking completely normal.  So far, all of the tests they performed have come back normal.  I asked Sierra if she thought it was because of stress and some anxiety.  She simply replied, "what am I stressed about?" Okay, then I guess it isn't stress.  She is so funny,  I would love to see the world through her eyes.  The plan for now, is for Sierra to keep a journal and see if there is a pattern to activities she is doing, stuff she is eating or what exactly is causing the chest pain. They have dulled a little in their intensity and she is not having them every day.  So that is encouraging.  

I will update with Gage's results later.  Wish us luck, here is to finally going home for good!!

 

Biopsy Results and Going Home

Drum roll please, biopsy results are in and .................. Sierra finally received a 0 (yayyyy) and Gage received a 1A (which is considered a 0).  All good we will gladly take those results.  On Thursday, we asked the doctors again if we could go home since Gage is doing so well and his biopsy results were good.  Our wonderful Dr. Rosenthal called us himself (which is usually not for the reason your wanting) to tell us his concern with Gage leaving before his 3 month mark.  It was not what we wanted to hear, but after talking with him I couldn't shake the uneasy feeling I had inside.  After lengthy discussion with Jason and trying to decide what to do, I decided to sleep on it.  I woke up early this morning and packed up our Ronald McDonald room and put everything by the door.  I decided if it was the right thing to do, I would know after Gage's clinic appointment this morning.  After talking again with a different doctor today, the uneasy feeling wouldn't go away and I just couldn't put our stuff in the car and hit the road.  As badly as I wanted to go home, I know the doctors have Gage's best interest at heart.   Their concern was a rejection that can happen without symptoms and suddenly.  They have seen it in patients usually within the first 3 months of transplant and their biopsies, labs and echo look great one day and a couple days later the kids come into the ER and are placed on ECHMO.  Our hospital is not equipped to place him on ECHMO.  With his severe reaction to his first rejection they are all nervous for him to be too far away.  Lots of kids get 3A rejections, but rarely to they have to go on dialysis like Gage did.  So, I really couldn't argue with them.  Our stuff still sits packed by the door and I haven't felt motivated to unpack.

I know, we are only 2 weeks away, what is the big deal? We are starting our 3rd summer here.  Our 3rd summer apart as a family, a 3rd summer of restricting our trips to a 2 hour travel radius from Stanford. A 3rd summer of keeping our home in Oregon going and supporting kids in California. I don't know how many of you that read this have children, or possibly understand what I am beginning to understand, that the time with them is so short.  Sierra will be a Senior this year in high school.  Our opportunities to spend summers camping, Bar-B-Qing and family trips while our kids are young and at home are coming to an end.  It makes me almost desperate to spend any window of opportunity that we have, together and making some kind of fun memory.  Not to mention the uneasy feeling that accompanies that time that we are home.  The questionable feeling of how long will this last?  How long until there is a problem with one of the kids and we have to go back?

The question was asked why we don't move to California?  That is a great question.  When Lindsey was diagnosed and we were told there were more transplants than just Lindsey in our future, we asked the doctors if we should move.  He assured us that we didn't need to and these things could be cared for from a distance.  For one thing, the cost of living is so outrageous here, who could afford it.  The most important thing however, is we LOVE where we live, we love the lifestyle we have chosen to raise our kids in.  We love the community and family and the wide open beauty that surrounds us.   We have asked ourselves multiple times if we should move, but it has never felt like the right thing to do.

Sierra is still having her chest pain. It comes on 1-2 times per day.  Sometimes it really hurts like a sharp pain and other times it is dull.  Her echo looked fine, they did blood work to check the gallbladder and liver and those were fine.  She also had a chest x-ray done and it looked normal.  The plan for her now is to keep a journal of when the pain hits, how long it lasts and see if they can find some sort of pattern. She is free to return home, so we will have to figure out how to get her there.

Had the fun privilege of going to lunch with our favorite Mrs. B.  Gage was loving his pepperoni pizza!