70 mile commutes

Still in the hospital.  At least she is starting to decorate the room though.

The 70 mile oneway trip is getting a bit tiresome though.  Usually one of us goes down sometime in the late morning, hangs out, stays for any procedures (i.e. shots), and then the other person drives back home before rush hour.  We've been doing this for a week now, that's over 1000 miles this week.  It doesn't seem as long as it did the first couple of times but still I'd rather have Abby back at home.

Unfortunately her ANC is still low, actually lower now (down to 30 today).  We were hopeful that the ANC boost from the steroids last week would peak at 100 and we could leave before it dropped again but it didn't happen.  So, now we are planning for another week down in Denver.

Maybe she'll have a great immunity building night and wake up with an ANC of 100... but I'm not holding my breath right now.  Only time will tell.

So, more shots tomorrow and then again on Monday.  Wednesday is her bone marrow test and hopefully the results of that will be awesome.  We are praying and hoping that the chemo is working extra good (should be given her counts) and that the test results will show the cancer is gone (or at least under 1 in 10,000 cells).

Pray that she can come back home soon.  Obviously it would be so much nicer to do this all at home instead of as a commuting family.

Doing good but still here

Abby is still in the hospital. Basically waiting for her immunity to get strong enough so that they will let her leave. It has to be above 100 and right now it's only 50. It was 80 yesterday so hopefully it'll move up sooner than later.

For now we are trying to find ways to keep her for getting too bored or watching movies all day. She has a felting kit so that's been fun. She's making a felt sushi. They also brought in a star to paint today. 

We'll take some walks and just keep waiting it out. 

Have a good day.

Still Here

Abby is still in the hospital.  Her ANC is 30 and needs to be 100 before we can leave.  Also, she needs to be fever free and no blood infection for a couple of days.  Those two things are happening so far but the ANC needs to come up.  We could be here awhile.  However, her spirits are good.  She has some familiar faces now and has been able to replace our first week here's experiences with some positive ones. She had a blood transfusion which helped her energy level since her hemoglobin was so low.  Her nausea comes and goes. She's still pretty pale but her really bad headaches are now just now and then and she's not dizzy anymore.  They continue with chemotherapy while we are here, the priority being staying on the roadmap so we can hopefully see good results on the 16th when they test her bone marrow again.  She gets to go shopping today with the Make-a-Wish people downstairs.  She did this when she was 4, it's a great event! She gets to get Christmas presents for 6 people.  They help her pick them out and wrap them for her, and I think there are christmas treats at the end. So, it sucks to be in the hospital but she has been blessed by lots of fun things to do and great people. Yesterday she got a visit from a nurse who was her primary nurse last time around.  It was so great to see her.  We hugged and cried.  She has had a picture of herself and Abby on her desk for years.  She brought it and gave it to us.  She is here in the clinic so we will see her again. Abby doesn't really remember her but she was a huge gift to Mark and I!  She's a wonderful lady.  Abby also received a "bag of fun" from an organization that puts backpacks together with fun things to do for hospital stays and chemo treatment stays.  There are some amazing things in the backpack, including a Kindle Fire.  Wow! We are still blown away by it.  Thanks for all the texts, emails, gifts, meals, and prayers.  We still feel shell-shocked but know God is walking with us through this and when we look up from the pain, we see his hand all around us from beautiful mountains out our window to all of you letting us know we are not alone.

Spiked a fever- back to the hospital we go.

We were just about to leave the clinic, she had done great with her shots and all. The unaccessed her port and just as we were getting her shoes on, we felt her head... Hot. 

So close.  They just hooked her back up, drew some blood for cultures and are giving her some heavy duty antibiotics. She'll have to be admitted tonight, and possibly for a while. Her ANC (infection fighting blood count) is 10. Mine is about 2000 so she pretty bottomed out. 

So close but at least we were already here.  She'll also get a blood transfusion to bring her hemoglobin back up as it a bit low today too. 

Treatment Roadmap

Things have been pretty quiet since Thanksgiving and it was nice to not have to update the blog since things were going good.  I guess no news is still good news.  We did get our roadmap (treatment plan for the month last week so I thought I'd share what I know about this plan with you all.

Basically, right now our Monday, Wednesdays, and Fridays are a bit full since we have to take Abby to Denver on each of those days.  These extra trips are primarily for the shots that she has to get.  I think today is #6 in the 6-shot series of Erwinia.  She gets 2 simultaneous shots in her legs each time so she hasn't really been enjoying these days (to say the least!).  We are hoping and praying that she will find that place of strength that she has often shown in the past when she gets flu shots or other needle sticks.  Unfortunately right now she hasn't found that strength very often and the shots are producing a lot of anxiety for her prior to the appointments.

Today she will also get another chemo drug today in her port and then start the second round of Erwinia shots on Friday.  That round will finish out right near her Day-29 bone marrow test.

Here's the basic roadmap as we know so far:

• Nov 19th- Officially started Block 1 (28 days of an intensive 6-drug rotating chemotherapy)
• Dec 16th- Will be the Day 29 test of bone marrow to find the MRD (Minimal Residual Disease) 
• Dec 17-23rd -Treatment break and MRD test results back.
• Dec 24th or Dec 28th- Start Block 2 (28-day intensive chemotherapy)
• End of Jan-  MRD bone marrow test and 1 week break for counts to recover. 
• After that... we don't know yet. 

Based on results of both Day 29 bone marrow tests (but the first test is the most important) she will either: 

1) Continue chemo (still don't have a good roadmap of what this would look like)

 OR 

2) Start the process for a bone marrow transplant.

So, we are very hopeful (and praying hard) that the Day 29 test shows that the cancer cells are gone.  If that is the case, we have a lot more options on what our future looks like in terms of here treatment and where we might be able to get that treatment done.

Off to our appointment.  I'll try to most more often this week too.

Thankful

In August I started capturing our life, day by day, in 1 second clips.  My thought was that it would be great to post it all over on the web on Thanksgiving Day.  Show off our new life in Japan, a way to remember all that we are thankful for in this new life.

Everyday, I would capture a quick moment. It was a fun to look over the ever-forming video from time to time, especially on those days when I was worn out and missing Colorado.  It was a video highlight reel of our new life.  On November 14th at Narita Airport I posted the video with this message, "Well, I've been making this 1 second everyday for a while. I think this is probably a good chapter break for now. A new chapter begins when we land."

I thought that would be my last 1 second a day video clip.  Why would I want clips of the Children's Hospital, of chemo drips, hard times or bald heads?  At that moment, the Japan clips seemed less-than-realistic, just all the high points of our new Japan life.  I had omitted all the clips of Anna crying about math homework, or people missing our Colorado home.  I didn't have clips of us taking the kids to the Japan Drs... in the rain... on bikes... with bronchitis.  -so why start now?

I told my good friend this same story,  that I was done with "1 second everyday", the chapter break would be the end.  But he's a true friend and he wouldn't let me quit. He challenged me to not stop the clips, not to stop looking for the good in the midst of challenging times.  He said that the Japan clips weren't fake, they were real, they were about finding the blessing in a hard transition.  Sure, it's a bit manicured, but we all do that to some extent.  

Manicured... Or, it's called looking on the bright side ,or counting our blessings  -And that's what I'm going to continue to do.  I had to go back and fill in the few days that I didn't want to capture but I think that's ok.

So, here's the video of the beginning of our new chapter, a chapter that will most likely be a challenging journey, but one that I will capture and find things to be thankful in nonetheless.

All of are home today, Abby is doing good as are all of the other other kids.  Thanks for walking with us in this journey and Happy Thanks Giving to you all!

Hopefully staying home for some turkey

Well we went down to Denver today for a treatment, spinal injection of chemo, shots and another chemo via her IV.

They checked her counts and her white counts are super low. Good and bad at the same time. She's severely neutropenic (means her body is very low on her infection fighting cells, neutrophils.

If she gets s fever we have to rush her to the hospital and admit her so we are praying she doesn't get a fever!  Please pray for that as well. Thanks! They want her to eat more as she lost 6 lbs in the hospital last week, that's a lot for her.  So, I guess we'll see if she wants to eat lots of cheese or maybe a Whopper.  Or a Carl's Jr. burger.  Or a cheese cake, the whole thing... that would get the weight back on her huh!?

Other than that she is good. It is so nice to see her here at home.  Ahhh hopefully we have  a little time to relax now.  Enjoy your turkey day and hopefully we will too!

Abby's coming home.

They are packing up and driving home. Praying for an extended stay here at home and that she doesn't have to get readmitted for any fevers or such.

Thanks for all of you words of encouragement. 

Still in the Hospital... maybe tomorrow?

Well,

We are really hoping and praying that Abby will get out tomorrow.  Try as we might, they still didn't let her go home today.

To be honest, it was a rough day.  She really wanted to go home.  She had more shots and she was on a big combinations of anti-nausea as well as anti-anxiety.  The effect of them all was not the best, she was super emotional and repeated the same thought over and over and over, all day long.  She is tenacious and just wanted to go home.

To be with her was hard.  As a parent you just want to unplug her, throw her in the car and leave.  Yet, at the same time, we know they are all trying to get her better and are looking out for her so we just have to trust that the Dr.s and nurses are doing the best that they can.

So, she is still there.  Vicky is staying the night with her and it sounds like she has calmed down and gone to sleep.  They will take her vitals again later tonight and if all is still good, they will release her tomorrow morning.  It will be super nice to have her back in our Colorado house again.

Have a great night.

Not quite yet

Well, Abby isn't quite ready to go home.  Her phosphate levels are too high without the help of IV fluids to keep them down.   If her nausea gets better, she may be able to drink enough liquids to keep them flushing out of her body.  Her uric acid levels are too high as well.  She is too nauseous to eat anything and hasn't kept anything down yet today.  So, all of those things together mean she needs to stay in the hospital a bit longer.  We will see how the week unfolds.  She has more chemotherapy tomorrow and Wednesday and Friday (all of which include those nasty shots in her legs).  Hopefully we can find a good combo and/or plan for the anti-nausea medicines so that she can get more on top of it.  Her port sight is getting less tender so that's good.  Her spirits are low.  She is trying to work through so many things right now.  We had a wonderful visit from her previous oncologist, Dr. Smith, and his nurse Sara, that were as good for Mark and I as they were for Abby.  As Sara sat and talked to Abby she emerged from her shell and for that we are very grateful.  Sara is a very special lady.  She saw Abby through the whole ordeal last time.  She and I were pregnant together with our third babies.  She has the rare gift of being able to gently assess what's going on, take charge of the situation, and stay on a heart level with you the whole time.  She is very perceptive and has a ton of experience with cancer kids and a ton of experience with Abby.  Dr. Smith (deemed "Dr. Sniff" by Abby back when she was 3) is wonderful too, we are so glad he is on the team to fight this with us. So, right now Abby is sleeping, with the help of some medicine. Mark and I went out to dinner last night while my wonderful mom stayed with Abby.  So many lovely people on this road.  We couldn't do this without each of you.

Pictures

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. 

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.

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.

Thanks.

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. 

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.

Waiting...

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!

Dusting Off the Old Abby Update- Makes it real

Writing helps me think and process.  While we were in the Japanese hospital, St. Luke's in Tokyo, I wrote this while waiting to get the bone marrow procedure and test.

November 12th-

Well, I guess we'll have done this twice now.  Wow.

When you walk into a room with 4 doctors that is never good. That's what I just did.  There are some things that transcend the language barrier huh?!  Lots of doctors in a room after a longer-than-normal wait time is one of those things.

I will remember this day for the rest of my life, just like the time that Dr. Samuelson told me the first time that Abby had Cancer.  I remember that vividly too.  I'll remember this in the same way.  I will remember walking out to the little garden area, calling Tiffany and telling her that, “we need to talk.”  But this time it is in Japan, on my Japanese phone, I took a crowded rush hour train here not a car.  How will we do this cancer thing here?  Oh, how your life can change with 1 train ride. Yet, at least this time I know the potential road ahead.  Blood cell counts are abnormal, but you shouldn’t have 12.5 % Blast cells in your blood, you should have 0.  12.5- I will now have another number burned into my brain.  Last time it was 70,000 total white count, this time it’s 12.5.  -oh how numbers can have such significance.

But 50%.  It could just be a scare.  I used to have the mug that said, “reaching for 50%”, I wish I had that now.  It would be good to carry around. 

That's all I got to write that day.  The rest is a blur.  Leukemia in Japan.  The taxi ride home was worth the full cost.  We sat in the quiet and I thought about how my life was once again going to change.  I don't know what Abby thought about she is often pretty quiet.  She is a strong kiddo but I don't want her to have to be so strong

Abby's still doing great

Well folks, I figured I should post here even though nobody really follows this anymore. (that's a good thing)

Anyway, Abby is doing great. She has a nasty cold right now and the initial symptoms did get us a little concerned and anxious but in the end it's just a cold. We like that. I've been up the last couple nights at 3am or so to give Abby some medicine for her cough and I'm beat. I really don't know how we did it during those years of being woken up all the time. Especially with Lily being born and Abby on treatment! Only by the grace of God.

So, that's it. Abby's good. Anna's good, Lily... well she's just your normal 2 year-old right now (loud, energetic, cute as can be) basically good.

Till next time I post.

The Dad