Friday, June 16, 2017

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!


10 comments:

Angie said...

My heart just aches for you guys. It is SO hard to be living in two places and we've never had to do it for as long as you have! I know that you guys are inspired and will do the right thing for your family. You guys are amazing, such an inspiration to us!

Heidi said...

Stacy, that must be so hard to have to wait after SO much waiting! I am in constant awe of all your family has to go through and how you keep your spirits up and your smiles bright despite it all. We will be praying for good news soon! We will miss all of you but we are excited that you will finally all be in one place soon! xoxo

Sister Gilbert said...

The level of your faith continues to be an inspiration. We continue to keep your family in our prayers.

The Reading Nook said...

Wonderful that both Sierra and Gage had good biopsy results! It would be really hard to have wait longer to be able to go back home.

ReNae Coelman said...

Stacy, thank you for your great faith and endurance. You are an example to everyone. I have learned to trust in those uneasy feelings, as you have. Hopefully these two weeks will be filled with fun things to do and see, and they will go by quickly. THEN you can finally go home. Who knows, maybe the garden will already be planted and you can start weeding it!! Love you so much!

Bina said...

So sorry you are going through this limbo phase, sooooo hard to not know and to be juggling family in two places. We would LOVE it if you ever decide to come back to the Bay and stay long-term. Housing is crazy but little miracles do happen. Hugs to you all at this crossroads, and healing wishes to Sierra.

The Martins said...

I'm so happy for great biopsy results!! So sorry your family continues to be split. You're amazing and continue to be in our prayers.

Karen W said...

So glad to hear the great biopsy results. I know it's got to be so hard for you to not be home and all together. But like you said...what's best for Gage. I'm just so glad the time is coming soon. Thanks for the update.

Unknown said...

I'm new here, just saw 48 hours episode with your amazing journey, I researched more about your family expecting to find good news and I can breathe again with hope seeing all your kids being strong and creating good memories... Thank you for facing life in such a wonderful way, what a life lesson I found on your way of finding happiness every day. You are an amazing family. You nailed it! You know how to appreciate a good moment, and you enjoy it and record it as a good memory even when there are other moments in your day that are not ideal. That is so amazing, you are my héroes.
That is having a good life... When one day at the end you look back and you can realize that in all your days what was always present at all times was love.

jennifercav said...

Hope you can celebrate our independence day by actually getting your independence back and can go home for the summer!!!!! Sending some positive thoughts that this actually happens. Love and prayers from Central New York. Jennifer Cavanagh