Saturday, November 21, 2015

Maybe tomorrow

Just a quick post to let everyone know Abby may be able to go home tomorrow but not today. Her phosphate levels are too high. As cancer cells die they give off phosphate so it's a good thing on that sense. She is also not eating much and not taking her medicine well today. Prayers she can start eating and drinking and taking her medicine would be appreciated. She just wants to be done with this. It's a lot to take in and deal with. 

Friday, November 20, 2015

Not gonna lie- Today was tough.

Today was a tough day for Abby.  I don't want to sugarcoat these update but I don't want to depress people either.  I guess all I can do is update: the good, the bad, and the ugly.

The Good-

  • She got to go for a walk to the gift shop without her IV pole with the family when she was feeling ok.  
  • She ate dinner and played Uno with Tiffany tonight.
  • We had lots of support from friends and family and are feeling very encouraged.
  • She is in good hands of the doctors and nurses.

The Bad-

  • She reacted to one of the chemo drugs last time (PEG) and therefore can't get that shot again... unfortunately (is there a bigger word than just unfortunately?) she has to get 6 shots for every 1 shot of the PEG that she would have gotten. 
  • This therapy had 2 PEG shots for each 30 day block... that means 12 shots in her legs
  • She sobbed in fear for a large block of time today and finally we got some anti anxiety medication for her so that she could get those shots.
  • There are a lot of fears of pain that are ruling her emotions, I think a lot of them are based on the subconscious fears from her last treatments... please pray against those fears.

The Ugly-

  • Sorry, I can't share much of that.  It would just get us all down.  In a time like this you can't really look more than 1 day in the future, it's too hard, too many "what ifs".  
    • So, let's just leave it at this: watching your kid go through this, and not be able to do much to be able to help, is one of the hardest things I've ever done... twice.
Positive note to end this post:  She might be able to come home tomorrow!  Oh please let her come home.  I honestly don't know how people get through this without faith... I'm having a hard enough time with it!  

Thanks for all of the practical help, prayers, cards, thoughts, and email notes.  We appreciate them all more than we could ever convey in a blog post.

Thursday, November 19, 2015

Can't believe shes doing it again

I really don't want to post right now.  I'm sad and mad but mostly sad.  I can't believe we are doing this again.  I can't believe she is doing this again.  Almost 8 years after we took everything out and said goodbye we say hello and put it all back in.  I don't want to have to watch my little girl suffer again but that's the only option we have right now.

Overall Abby is doing ok.  She's sore and nauseous and it's only going to get worse on those fronts. We went over the treatment roadmap last night with the doctors.  She handed us sheet after sheet of chemo drugs printed out with names and side effects listed for each.  She told us what the 1st block (cycle) of treatment would be for this month and it's pretty intense.  She is on a relapse protocol that has had good results in the past.  It has some new chemo drugs in it and a lot of the old ones that we know about all to well. The goal is to get her into remission by the end of this cycle, test, and then we can decide where to go from there.

The reality of how much we may be at the hospital, and how sick Abby might be, hit me like a truck last night.  It's a hard place to be.  I so long for a nicer set of drugs that can cure these cancers but we don't have those yet.  Chemo feels a lot like using leeches, or maybe a gun, to get rid of an infection on your leg.  It's a really hard thing as a dad to stand by and let someone "heal" your daughter in this way.  I guess this is why people tore their clothes so much in the old testament writings.

So, I'm overwhelmed, Abby is sad, we are all tired.  We will all hit the wall at some point.  And, at that moment we have a choice, either get bitter and mad or rest in our faith in God's plan for our lives. Fortunately and unfortunately, we don't have the choice to insulate ourselves from the harder realities of this world any longer.

To live means you also die.  To really smile you must also cry.  Pray that we will all rest in a peace that is not our own.


Wednesday, November 18, 2015

Update: port in, tap done, sleeping

Just a quick update. Abby is all done. Port went in well, spinal tap and chemo, went well. She's sleeping now.  That will be good for her as she hasn't had much sleep in the last couple days. 

Tuesday, November 17, 2015

Bedside Posting

I remember this life.  You can't sleep so you start to think.  And thinking turns into the need to write and so you start to type.  They you figure that you shouldn't keep these thoughts to yourself so... you post.  It's kind of being in a coffee shop. Nice windows, free coffee, comfy chairs that turn into beds, clean sterile floors, lots of fun bells ringing.  Well, I guess the coffee and chairs are the same.  I wonder if they would let spruce it up a bit more.  Maybe let me bring a laser cutter in here? -I could cut our a really cool room sign for everyone!

Anyway, Abby is finally asleep.  It has been a rough re-entry.  I think she just has so many fears that get brought up from her past experiences, fears that she doesn't even know are in there.  Today her main emotion was fear and anxiety over what will be the next painful procedure.  Jet lag doesn't help either.  I'm wide awake at 10pm and I don't have an IV in me.  They moved her IV yesterday and put it in her other arm but still she says it hurts.  Her back was also sore but that seems better now with tylenol.  Basically she has been in some sort of pain for the last 5 or 6 weeks since her legs first started being bruised and swollen.  Chronic pain just wears you down, I hope she can get some sort of relief soon.

They did the bone marrow test today and got the preliminary results in a format that they can read, in English this time too, which also helps with the readability.  Acute Lymphoblastic Leukemia (ALL).  We will know what type it is tomorrow but the Japanese tests already showed that it was pre-b, the same type she had last time.  She will also go into surgery for 2 procedures: a spinal tap + chemo, and she will also get her med-o-port which allows them to access her veins without having to give her an IV.

It's weird to be here again, last time I wrote about her first treatment I was wrought with fear but this time I'm not.  I just want her to get going so that she will start to understand that fear has no power over her.  My prayer is, that her fears of the unknown will be replaced by a kind of peace that can't be taken away by these new circumstances in her life.

Have a good night, or day... depending where you happen to be in the world.

Monday, November 16, 2015


Abby is checked in at Children's Hospital.  They haven't done much yet because the Japanese test results are a bit hard to read so we are going to repeat them tomorrow.  Also in the mix is the fact that her blood counts are pretty good right now and they didn't see any blast cells in the blood today.  So before we move full steam ahead with treatment, we are going to pause and make sure we are heading in the right direction.  Several doctors have stopped by and taken a look at the bruising and Mark's well documented pictures from the beginning until now.  Way to go Mark and the school nurses!  Abby is doing well. With two new owls to keep her company and shrimp for lunch what else could a girl want? The first of the bone marrow test results will come tomorrow afternoon.  The rest we will have to wait a bit longer for, Tuesday night or Wednesday morning.  Thanks for the prayers and love sent our way, we are feeling it all and appreciate it more than we can say!  We will keep you all posted.

Abby Has Relapsed

This week, we pulled the eject lever, and rapidly came back to Colorado to start treatment for Abby's Leukemia.

Below are some excerpts of emails that I've sent this week to my friends and family from both sides of the globe.  We leave in 30 minutes to the Children's Hospital in Denver and we will once again have a better view of what this journey will look like soon.

From Wednesday night after diagnosis to some great guys in my life:
"Well, it looks like this will be our 2nd time that we get to walk down the road of Leukemia treatment.  But right now I'm in Japan so I need your wisdom and I have about 2 days before I need to make preparations.

Basically, our big fear came true today, when I took her downtown to St. Luke's (the International Hospital).  They did another blood test that I requested and detected blast cells (they shouldn't be in your blood stream though).  So to get the definitive answer, they asked to get a bone marrow sample.  They got the sample and 90% of her marrow is blast cells (that means she has Leukemia again).  They will know the specific type of Leukemia tomorrow. "

And to our Colorado Friends once we had made the decision to fly home for a bit:
Colorado friends,

I had lots of catchy subject lines for this email.  Like, "Dusting Off the Old Abby Update Page"  or "What are the Odds?"  But, in the end I decided not to even do an executive summary and just put the news right in the subject line.

Yes, Abby was just diagnosed again with Leukemia.  

8 years off treatment she has relapsed.  This is very very rare, kids don't normally relapse like this... but when has our family ever been normal.  I will find out what type of Leukemia it is in a couple of hours when the results come back. So yes, we are dusting off the old "Abby Update" blog from 8 years ago and I'll be recording some new entries. Or maybe I'll do a Facebook page but those are kind of the least of my concerns right now because I'm still in Japan.  I definitely didn't see this coming.

So here is the nitty gritty.  We are coming home for a bit. Abby is doing remarkably well.  We caught this really early.  She still has an ok immunity and we are praying for that to hold up for another week or 2.  She has a bit of time before she has to get on treatment, probably a week.  We've talked to a lot of people and prayed a bunch and both the people here in Japan and our doctors in Colorado agree that we should get treated in the USA, especially for the first month.  So, we will be flying back to Colorado with 10 suitcases this weekend or early next week. 

I'll post info on Facebook as I know and send out links to other ways you can keep in the loop in the future soon.

On to the heart stuff.  This is hard.  It's going to be a bumpy road again and we are all ready pretty worn out from all of this transitions that we have just gone through.  I am optimistic that Abby will be cured again.  And I also know what the treatment will look like.  It will be long and tiring, there will be days again when I don't think I can do another day.  And then I will do that day, and the next and the next.  This time Abby is a teenager, she will also face this struggle much like Tiffany and I will.  It will leave some marks on her, some more battle scars, some more physical scars too but we all need to continue to remember that our life is not our own and that we are not in control.  That illusion of control has once again been stripped away for the Schreibers and I'm going to trust that we will experience God's freedom in new ways as we all walk this out together.

~The Schreibers

More info will be posted here soon.  From Tokyo to Colorado, we love you all!