Friday, February 19, 2016

Help for Care Packages

Hi all! Day 11 and she's still here. Unfortunately this will actually be one of the shorter stays. 

Many of you have asked what they could send, what are things that Abby would enjoy doing while she is sitting in the hospital? One of our friends, who's child also had a lot of hospital time, suggested making an Amazon wish list for this purpose.  So, here it is. If this is helpful, please take a look.

We have loved all the cards, stickers, and especially the words of encouragement! So please know you are loving on us big time even if you don't use this link. 

Thursday, February 18, 2016

BMT Here We Come

Well, I am sitting here by the sunny window in Abby's room at the hospital listening to "Good Good Father" by Housefires.  I have had my doubts these past months if I'm honest.  No one would blame me.  It's been a rough few months.  But there have been a ton of things I've experienced during this time that have also strengthened my faith in God's character and his love.  I don't have any answers but I have my relationship with God and for that I am very thankful.  There is hope, God is still in control even though brokenness seems to be winning out in Abby's body right now.

But....I didn't start this post to talk about the big questions of life.  I wanted to update you all on what's coming up pretty quickly.  On Tuesday this week Mark, Abby, my folks, and myself sat in this room for 4 hours in front of a white board and Dr. Craddock hearing about all that goes into and comes out of a bone marrow transplant.  It was fascinating and frightening all at the same time.  It gave us all hope and filled us with fear.  It was a long and full 4 hours.  The procedure itself is a bit anti-climactic.  It's just like a blood-transfusion.  It takes about an hour.  Getting the cells from Anna or Lily is a bigger deal than it is for Abby to receive them.  We will know soon which sister gets to donate.  Lily has been asking God to make it her.  And then we wait for the new cells to engraft. Before the procedure Abby will get total body radiation and a big chemo drug to wipe out her bone marrow.  She gets 3 treatments of the radiation.  We aren't too excited about that.  As you all probably know, radiation has a lot of lasting side effects.  Margaret Feinberg likened cancer treatment decisions to being placed before a table with a knife, a gun, poison, and a bow and arrow and being told to pick.  Not which one but which order.  Of course, without the treatments, cancer is deadly on it's own.  So, we walk the fence of a love/hate relationship with cancer treatments.   Dr. Craddock was almost giddy that we have two matched sibling donors.  There's about a less than 1 percent chance of that.  God is good.  When Anna and Lily were being formed inside of me, he made sure their chromosome 6 had all the same protein markers as Abby's.  Amazing. That's a sobering thought for me, that he knew then what we would go through now and provided what we are all hoping will be the thing that saves Abby.  Matched sibling donors mean that all the graft verses host issues that come up should be lessened.  There are a lot of those.  Stuff I don't even want to list.  We'll just stay on the side of being optimistic.  So the big things to come are the radiation and chemo before and all the side effects of those that will make her feel crumby going into the transplant, and the risk of infections (viral, fungal, bacterial) that will stay with her for a year after but be extremely high for the first 30 days post transplant.  There is still the possibility that her body will reject the new marrow so you can pray for that as well.  Feel free to leave comments if you have any questions or encouragement for us!  The whole thing is scheduled to start March 7th with two weeks of work-up testing to see if there is any infection or potential for infection hiding out in Abby's body anywhere.  Then the radiation is scheduled for March 22-25 and she will be admitted on Friday,  March 25th.  The procedure is scheduled for March 30th.

Monday, February 15, 2016

RE: Schreiber's - How they're really doing -Delete if not interested.

A lot of people ask, "How are you all doing?"

Some follow up with, "But how are you really doing?" -this second question often causes a dilemma for me.  How do I fully explain this situation when we are still trying to wrestle through it ourselves?

Sometime in my head I answer back, "Well, how much time do you have?"  Time is a factor to answer this question and we live in a time-crunched feeling life.  Facebook, Twitter, unending emails all take up our energy.  

At ASIJ, I would often see emails from people with items to give away, or non-work life information.  As a courtesy, they would put "delete if not interested", in the subject line. I think this post is probably similar. So, if you want an inside view of "how we are really doing" follow along.  But don’t feel compelled to -I am completely fine with leaving it at, “We are doing ok, one day at a time.” if you don't have time right now.

So, as we said at school in Japan-
RE: Schreiber's - How they're really doing -Delete if not interested.

Yes, the last 3 months have been really hard -a tiring (emotionally, physically, spiritually) and demanding journey.  And it's right on the heels of another very tiring journey to and from Japan. A journey that started more than a year ago and took a lot of energy.  We gave up one whole life: job, friends, church, town, school, driving, mountains -craft beer.  We packed, had lots of tearful good-byes, parties, “last of” experiences, said our farewells and flew (by way of Hawaii -where Tiffany got painful shingles) to start our new life in Japan.  We started new jobs, got bikes, train passes, met great new people, started a new church plant, and went to IKEA way too many times. The girls got adjusted to not just a new school, but for 2 of them, the only school that they had ever been in (before they were home schooled).  Abby walked through a month of painful swollen legs and a sore back (walking, in the rain, on the train, through crowds, to multiple Japanese doctors and hospitals, with lot of needle sticks, and a final bone-marrow test) before we finally packed up eleven suitcases and flew back to our Colorado house that didn’t fully feel like home.

It was like we were running a marathon, almost got to the finish line when someone told us to turn around and do it again. Sometimes, that’s how we really feel.

Oh, and then there is the relapse-cancer thing too.

We are now 3 months into that new marathon, I have 3 more months of one-second-a-day videos and now.  The title says, “The Schreibers in Japan” but what it shows instead is 90 seconds of hospitals, drives, and my daughter losing her hair.  No job footage, no school, no biking, no new adventurous footage of Japan subways, no IKEA,  -such an abrupt change of direction.  But, if you stay there too long, it can really bring you down.

So we try not to stay in that place.  Instead we pray.  Honest prayers. Sometimes feeble, sometimes mad, but we still choose to pray to a God, that I don’t understand but I still trust (even though that can be really hard).

And with that said, I guess the next logical question is,” how is Abby really doing?”  Unfortunately I don’t really know that question.  She doesn’t share much about this all. I can only guess what it would have been like for me as a 7th grader to have gone through our last 6 months of change only to end up living most of the last 3 months in the hospital.  How would you feel? 

No really, how would you feel? Put yourself in that place for a minute, go back to your 7th grade year, give yourself cancer, all this change… feel that for a minute.  

Now, will you pray for my daughter out of that heart?  Please.  She needs your prayers. We can't just strive to just save her physical body, we need to save her heart, her mind, her spirit -and her beautiful smile too.

I know I didn’t have it in me as a 7th grader to go through this type of suffering, you probably feel the same way, and I'd guess that she probably does too. So, even if you’re, "not the praying type", would you try? Pray that Abby’s faith would grow.  Pray that her immunity would rocket up so she could come home for a few days.  Pray that she won’t just grunt through this, but instead find freedom in the midst of it.  That she will find some way to have a purpose during these hospital stays.  Maybe even that she would find a way to embrace this journey, even during the toughest of times. -These are spiritual requests.

All I can think that is left to say is, "Thank you". Thank you for taking the time to try glimpse into how we are all really doing (or at least how we feel sometimes).  

And yes, this is all heartfelt and true, but it is also true that we are just taking it one day at a time -walking out each day as it comes. Still taking one-second-a-day videos and trusting that we can find the blessing, if even only for that 1 second, in each and every day.

Abby’s unhooked today.  Doing well.  Bored but in good spirits.  Has 1 blurry eye from one of the treatments.  Wants to go home though.  There are only so many crafty things to do and Netflix videos watch while you’re stuck in the hospital room.  And, unfortunately this will be one of the shorter stays.  Bone Marrow Transplant will mean she is inpatient for at least 6 weeks and then in Denver still until day 100 or more.  One day at a time.

Here's our last 90 days.  Enjoy and thanks for journeying through this with us.