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!