Necessary Risk: A car crash, a rocket launch or a cannonball

J
I love analogies and visual examples. I’ve been trying to find a good one for this phase of Abby’s journey but the perfect one has been eluding me. At first I likened it to putting your kid in a car, checking all of the safety devices, closing the door and hurling her toward a wall -in order to smash out all the cancer cells.  But that just felt mean -why would a dad do that to his kid? But if feels like that, there sure is a lot of prep, safety checks, infection checks, and scans -so what else is it like?

A Launch. Yep, I think the better analogy is that of a rocket launch… or maybe a human cannonball.

You see, we’re in countdown mode here in Schreiber World (yes, that’s a real place).  T-Minus 13 days to be exact.  Yet, that too is a bit of a misnomer, Abby actually only has 1 more appointment on Monday, then starts 3 days of Total Body Irradiation (TBI) on Tuesday.  After that starts, there’s no abort button to press, we’ll just be holding on and praying, “God speed”.

In the last 2 weeks we’ve ran Abby through the gauntlet of appointments.  Eye exams, CAT scans, organ function, radiation simulations, final marrow test, meetings, consents, consents, and more consents. She took learning tests, talked to the Phyciatrist, drank some tracer liquid and went to the 'hot lab'. Yesterday she had another surgery, they put a new central line in called a Double Lumen Broviac that will be used during the bone marrow transplant. The preflight workup is almost complete.

Anna also got some hospital time. Had a finger prick, donated a unit of blood, (to give back to herself later) and we signed forms, forms, and more forms. She also had an exam and got to talk to some of those “childlife” folks who all wanted to make sure that she knew that she wasn’t being forced to do this, it’s her choice. She cried a bit from the blood draw, but got to order off the hospital menu! I think the French Toast made it at least 25 percent better, maybe.

The TBI appointment was the most disconcerting to me.  We got to visit the big lead-shielded room and see the machine that will shoot X-Rays at every inch of my daughter, in 6 sessions, over 3 days. We got to hear about all of the other potential side-effects that this therapy can cause. Short term like nausea, to longterm, like other cancers, infertility, brain/memory issues and cataract -to name a few. Out of all of the appointment though, I really appreciated the frankness of this radiation doctor.  I asked her to help me be more at ease about this procedure (after that list of side effects who wouldn't be agitated). I said, “For some reason I’m ok with chemo, but radiation makes me uneasy.”  After lots of questions, and even more answers, she responded, “Yes, we all should limit our exposure to radiation.  But, this is the best chance for Abby.”  And then she said a phrase that I’ve been mulling over ever since.  She said, “We wouldn’t do this unless it was her last option. Yes, there are risks and we should limit them for everyone else, but it’s a necessary risk for her.”

A necessary risk.

There is a scene in the movie “The Martian” that this makes me think of.  If you haven’t seen it, Matt Damon plays Astronaut Mark Watney who gets stranded on Mars and has to survive until the people back on Earth can figure out a rescue mission. He sciences his way out of a lot of problems and finally has a chance to get off Mars… but in order to do so, he has to take a ride on a stripped down rocket -with a tarp as a nose cone.  He follows the rescue plan, strips all of the heavy parts off the rocket. He gets in his space suit, straps into the rocket and is ready for launch. He has no controls, they were removed to lighten the load, so the rescuing astronauts in orbit remotely fire the rocket propelling through the thin Martian atmosphere and hurtling him at extreme velocity into space.  On the ride up, he blacks out. The ship shutters violently. Pieces fall off the rocket. He's going so fast. At last he regains consciousness and finds himself in space.

https://www.youtube.com/watch?v=z1KC60TqNjo

If that’s not a good enough analogy then I give up.  

For 2 weeks we’ve prepped.  We done all of the safety checks that we can.  But this isn’t a safe thing that we are doing.  It’s a bone marrow transplant.  It’s a necessary risk. We wouldn't do this if there were other good options. At this point we’re just trying to get Abby off of Mars. If that takes some risk, then that’s what you do. If that means getting rid of the windows, the controls, and even the nose cone, that's what you do. If it takes strapping your daughter to this rocket and trusting a bunch of amazing doctors and some risky technology to save her, then yes, that's what we'll do.

“Spoiler Alert”  -In the end, Matt Damon’s character gets home safe and sound. Back on Earth we see him teaching new astronaut trainees lesson from his time on Mars.  He says, “...you just begin.  You do the math.  You solve one problem, then you solve the next one, and the next.  And if you solve enough problems, you get to come home.”

https://www.youtube.com/watch?v=mDYCLFE86Po

We are all praying, I know you all are too, that Abby’s journey will bring her safely back to our house as soon as possible.  I’m sure there will be problems, but we are praying that each will get solved, one at a time, and when they solve them all, she too will come back to this little pocket of Schreiber World that we call home.

Stay tuned in the coming weeks.

-I’m sure lots of launch updates will be hitting this page soon.  

Thank you all for all of your prayers and encouragement.

CT scans, lung tests, finger pokes and an ER trip

So I'm sitting in an exam room waiting for Abby to come back from her lung tests. She gets to sit in a glass box and breathe a lot into devices. Later today we have A meeting with the dietitian to go over what she can and can't eat during transplant. Then we have a palliative care meeting. And then she meets her child life specialist who helps her process two different procedures before and after they happen. She's doing really well and feeling pretty good considering our week started pretty roughly with lots of nausea after Monday's chemo. We had to go down to the ER at Children's on Tuesday afternoon because she was vomiting blood. They did lots of checking and it was nothing serious, probably just some tears in her esophogus from all the vomiting. She's been doing fine since. She and Mark got stuck in Denver Wednesday because of a surprise blizzard that hit early Wednesday morning. They drove down in it and it took about three hours to get to the hospital for Abby's appointments. When they were all done with the appointments parts of I-25 had been shut down and there were no hotel rooms left so thankfully, Mark was able to stay with a friend's parents who live close by. They took great care of Mark and Abby and we were so thankful! Yesterday we did a lot of CT scans and nuclear medicine blood tests. We had a long neuropsychology appointment as well.  This week is about checking  all of her major organ functioning and everything looks great so far. 

Anna and I came down yesterday as well so that she could have some blood tested and some blood drawn to save and give back to her after the procedure. She also met with a child life specialist to talk about what to expect. She had a history and physical exam also. She was a trooper. She was all geared up for the blood draw and was holding it together pretty well until they came in and said they were going to do a quick finger poke before the needle stick. At that point the tears started flowing and all the nurses were surprised because a finger poke doesn't seem like a big deal. However, Abby has mentioned before how difficult finger pricks can be because they have to squeeze and squeeze to get enough blood out for test. At that point the nurses started talking about how it was a new device and didn't hurt at all and started pricking each other's fingers so that Anna would calm down. She got through it eventually and was able to order some French toast and enjoy that before she went to her next meeting. The other two appointments were just for information and an exam. Although we tried to reassure her there were no more pokes, Anna was skeptical- especially when they started trying to get to know her and ask her about the stuffed animals she had brought. I think she's starting to realize that when they try to get to know you they may eventually poke you with something. Overall a character building day for her right? That's what we tried to remind ourselves when we were collapsed on the couch from emotional and physical exhaustion later that night. 

We have the weekend off and then we do another week of appointments. Thursday Abby will have surgery to get another port put in. Enjoy your Easter weekend. We hope to just enjoy some family downtime, cook a ham, do some Easter egg hunting, and hopefully connect with with the holiday means. 

And the donor is.....

Anna! We've had a full week. I'm sitting here with Abby in radiology right now about to go for another scan but I wanted to let you all know. She is with Mark right now going through her donor appointments.

Day 1 of Work-up Week

Abby and I headed down to Denver at 7:30 this morning after our usual stop at Starbucks for a coffee for me and a cheese danish to tuck away for later for her (she can't eat until after her spinal taps and bone marrow biopsies).  She did average for nausea on the drive down.  It's been a great past week of no nausea and no anti-nausea medicine.  She hasn't been sleeping very well but having her feel better during the day than she has to date is a huge blessing.  We got there a little early so they loved us...until I told them I had let her have almond milk to take her morning meds.  We had to move her procedure an hour and a half down the road.  I felt so bad.  She had to wait until after her (now)1:00 procedure to eat.  She did pretty well.  They had her going on fluids through an IV all day to help.  During our wait, she had about 30 blood tests done.  They didn't need to take all her blood for that but  it looked pretty close.  The counter was lined up with test tubes.  These BMT folks are very thorough.  In one of those tubes was the test to see if Abby really does have lasting antibodies for the CMV virus so that we will know if Anna or Lily will be the donor.  We should know Wednesday morning, maybe afternoon.  Whoever it is goes down Thursday for their orientation and a one more blood draw.   They will also take some of the donor's blood and save it to give back to them after the procedure.  The transplant is scheduled still for the 13th of April.  The rest of the morning was spent going over the schedule for the next three weeks with the bone marrow transplant coordinator and meeting with Dr. Craddock (our bone marrow transplant doctor) for a quick exam and to ask questions we have.  Abby's procedure went well.  She was able to get about an hour of sleep which was good because she hasn't slept well that past few nights.  Our recovery nurse was very sweet and took very good care of Abby.  She got two warm blankets and extra time to sleep.  So....we are home now.  Abby is resting in her bed.  Her back is sore but her nausea is under control.  We can anticipate high fevers from the chemo she got but were asked to give her tylenol round the clock to help keep them at bay.  Yes, round the clock means we have to get up every four hours for the next two nights to wake her up to take a tylenol but it will hopefully keep her out of the ER with those high fevers.  We have a few other things to take care of before we back Wednesday.  I couldn't help taking a picture of the supplies we brought home.  I'll leave you guessing what it's all for.  The espresso maker in the background is definitely going to get used in the coming days!

Home but sick :(

Well, I guess it makes sense.  You run this hard for this long and someone is bound to get sick.  Well, that someone happens to be everyone... except Abby right now.

Pray that Abby stays well, especially this close to her transplant. We've had to basically keep Abby in her room now and we all wear masks and wash our hands a lot.  I emailed the BMT coordinator to see how germaphobic we really need to be and she said, yes, we need to be germaphobic and diligent with hand washing to hopefully keep Abby well.  I guess colds can become infections and that would definitely push the transplant back further.  So, please pray for protection for her and for quick healing on the rest of the family.

We did have some family time this weekend and a bit yesterday before the colds really took hold.  So, hopefully next weekend we'll be able to hang out in the same room again.

Thanks for checking in!

We are home

Abby got to come home Saturday afternoon. Since then we've been enjoying some time with Mark's parents who are in town for a visit. It's been springlike outside so we've been trying to soak in the nice weather. We have this week off and then Abby starts her bone marrow transplant workup two weeks. Hoping it's a low-key week with nothing eventful happening.

It feels like ruins

I have been thinking a lot about ruins lately.  I read a blog post on finding God in the ruins of life.  I read an article about Kay Warren commenting on her son's suicide and a sermon she had heard called "Glorious Ruins" by the pastor of Hillsong in Australia.  I listened to the sermon.  

As I sit here with Abby, who is sleeping now after a hard day of throwing up and being exhausted from a 36 hour chemo infusion, I keep thinking of la Jolla beach and the hours I walked with her as a new baby in the baby bjorn while Mark worked his network job and I learned what it means to be a mom.  All those hopes and dreams for Abby's life were just beginning.  And now here we sit.  It feels like it's all in ruins.  

God has a lot to say about ruins in the bible.  He's into them.  He is a God of hope and redemption.  I plan to dig deeper into those stories and see what God might teach me about himself.  I wanted to share a song with you written by the guy who wrote the book "Finding God in the Ruins".  I haven't read it yet, it just came out.  I plan to.  He and his sister, who has cancer, sang it with their mom.  It really touched my heart, met me in my pain.  Maybe it will encourage you too.

https://www.youtube.com/watch?v=C-ZQZQ3C1Ic

Possibly the last week of chemo

Abby and I checked into Children's yesterday morning for her week of chemo.  She had a lumbar puncture with chemo which she's had before.  The chemo is called methotrexate.  She is also getting it through her IV for 36 hours.  It's the one that most likely caused the GI sores that gave her so much pain last month.  This dose is a bit lower and her ANC was 1400 yesterday when we started so that's all in her favor.  She is napping now since she was up last night with some nausea.  We are still on isolation from the C-Diff but it's not too bad.  She just can't leave her room but hopefully we aren't here past Saturday.  She gets her last Erwinea shot Thursday morning so that is a celebration! She has come a long way in being able to stay calm with those.  When I think of where we were at the beginning of all of this in terms of her anxiety, I am so thankful that she has come this far.  Every day is something different, something new.  No day has been like we thought it would be so we have just stopped having expectations (as best we can).  I am sure there is freedom in that but I'm not quite there yet! I'm so thankful for Mark, his personality does much better with constant uncertainty.  I am often amazed at his ability to stay laughing in the midst of this.  It's so good for our family.  Many nights, after dinner, he will spend time just being silly with Anna and Lily.  He jokes with the doctors and nurses and is a light in this dark place.  We are both scared, of course, but the lightness in Mark reminds me that I can let go and relax, be present.  I'm not in control anyway so being hyper-vigilant does nothing but negative things.

Hopefully we will all be home together by Saturday and enjoying a visit from Mark's folks.  Next week will be the bone marrow test that will tell us if we go forward with the BMT or look at other options to try to get Abby's cancer cell percentage to zero.  We'd love prayers for that test.  Hope you are all having a great week, enjoying the coming of spring!

Daddy-Daughter Dinner

Mark took the girls to dinner since they missed the annual Butterfly Kisses Dance. They are going for japanese, of course! Abby passed her counts today so she is ok for chemo tomorrow. It's a 4-5 day inpatient stay starting tomorrow. Hopefully it will seem like a breeze compared to February's long stay.

We are heading home!

Smile!

Abby's enterococcus bacteria.  For those of you who like this stuff! 

Homeward Bound!

So Abby gets to come home tomorrow.  We are so excited and know you are celebrating with us!  She will be on an IV antibiotic once a day.  They had to find one that was compatible with methotrexate, which she will be getting next week, and is effective in killing the enterococcus bacteria in her blood.  There's only one, and it is only given through the IV.  So a home care company will come with an IV pump and the antibiotic and show us how to do it.  If you look way back on this blog, we did this a lot back in the day.  Of course, we don't remember any of it it's been so long but we are hoping it comes back to us and that she doesn't unplug herself out of curiosity during the night like she did when she was 3.... kind of funny now but still gets my heart rate going.  She is bringing home a couple of respiratory devises to keep working on her lungs.  Her stomach issues are almost resolved.  Most importantly, she can keep up with her hydration without IV fluids.  Celestial Seasonings teas are our heroes right now, she is downing copious amounts of it since water tastes funny to her right now.  She will come back to the hospital for a few days starting next Tuesday for her, hopefully, last doses of chemo.   Then we get to rest for the weekend and start all the BMT workup tests the 14th.

On the BMT note, Anna and Lily were tested Friday for blood types and some viruses to help the doctor decide who might be a better match.  So.....drum roll please..... they are all exactly the same blood type (O Negative) and they have all had all the same 20 or so viruses, EXCEPT one.  Anna tested negative for the antibody and Lily tested positive.  Here's where it gets interesting! Abby tested negative last month but positive this month.  Hmmm.... it's a respiratory virus you get as a baby.  So, there thought is two possibilities.  A)She has the virus now since her immunity is so bad or B)she just has the antibodies from one of the blood transfusions.  They tested her further today (saliva, urine) to see if she really has the virus now or she's just borrowed someone else's antibodies.  Makes me a little weirded out to think of but it's the least of our concerns.

Things we are thankful for after 26 days of February spent with her in the hospital....
1. Children's Hospital factuality and staff
2. Sisters who are ready either way to donate, one if Abby has the virus, the other if she doesn't.
3. My folks heling out in person
4. All of you helping out from farther away.  Meals, cleaning, encouraging, supporting, listening....
5. Bath time
6. Abby is STILL smiling and shining God's light in all of this.
7. BBQ Pork sandwiches at the hospital
8. Panera when we get sick of hospital food

What are you thankful for as we head into Spring? We'd love to hear.  It's good for our souls!

Abby's doing better

Just a quick update to say that Abby is turned a good corner.  Off most of the monitors, off of oxygen for now, and her fever is gone without tylenol.  Rough few days but she seems to be on the mend again.  She's coughing a lot but I'm sure it's helping to clear the fluid out of her lungs.

She's praying that we can get out of her soon. If she can get to 100 on the ANC she can hopefully come home and remain on oral antibiotics.

Thanks for all of your support.

Saturday Update

Abby is doing a little bit better today. Her fever has come down a few times but it keeps going back up to 104. We know what bacteria is causing the blood infection and they tested it in the lab with the anabiotic she's on and it does kill that bacteria so that's good news. She's been really nauseous and had a lot of other stomach issues that led them to do a test for C Diff which came back positive. C Diff is a bacteria that lives in most peoples' intestines and keeps in check with all the other bacteria in there. However, when a person is on anabiotics for a long time and they are the broad-spectrum type like she's on, and that person is immuno-compromised, the C Diff bacteria can overpopulated. Ironically, The treatment is another anabiotic. So, hopefully she will start feeling better soon. 

As I write this, I am sitting outside of the hospital enjoying some sunshine. Two life flight helecopters have landed on the hospital roof as I've been out here. It's always sobering to see. Makes me thankful that we are in such a great facility was a great staff taking care of our Abby.

4:30 update

I'm sitting here with Abby and her 104 degree temperature. The bacterial infection is streptococci and most likely came from her gut. The second IV antibiotic will take care of it but it takes some time. So, she's feeling pretty bad right now but at least we know what is causing it and she's getting everything possible to make her comfortable. 

Anna and Lily were brave today and got their blood drawn. They let us do it early so we could be with Abby during an X-ray. They had gelato after with Nana and played outside the hospital in the sun with their Barbies. They headed back home with Mark a bit ago and my mom and I are staying the night.

Spiked high fever -ANC still 0

Abby is going on day 17 of this hospital stay. She's been on an antibiotic and anti fungal for the whole time. Last night she spiked a fever and they cultured the blood to see about infections. She had one so now she is on a second antibiotic and they are doing more blood cultures. She wasn't feeling good at all. The ICU. Doc came up to assess her and said she didn't need to go down there yet. 

-(Morning now) He's coming again soon since her fever is 103.9. Hopefully they can bring it back down and keep her out of ICU. 

Tiffany drove down in the middle of the night to be with Abby. I'm going down with the girls now. Hopefully they can get this infection under control quickly and hopefully her immunity come back soon to help fight it too. 

The girls get their blood drawn today (we'll see if we can still do it) to see who's the better match as well. Hopefully Abby's fever comes down and she can get some rest. But she probably won't feel like coming off the floor to see her sisters today :(. More video calls in the future will have to suffice until we get to bring her home. 

Still at the Hospital

Hi everyone.  Abby is dong really well, considering.  Her ANC is still zero and not showing signs of coming up yet.  However, she has been nauseous  much less.  She has been needing periodic blood and platelet transfusions and is still on the IV antibiotic and anti-fungal medicines.

Her spirits are up, as you can see from her photo.  She is holding a batch (clutch? brood? pack?) of felted dragons she made.  We took them for a walk on the floor to show them our favorite picture, Owls in Bowties.  We think the one with the purple tie just arrived at the hospital and is feeling a little overwhelmed with his new life here.  We can relate.

So, there's not much to report.  It is wonderful to have her feeling so well, eating, gaining weight, doing school, walking around, and making lots of creative things!  She still has a week of chemo to get in as soon as her ANC is 500 and then it has to come up again after that to 500 again before we can start the 2 week BMT workup.  So, we may be looking at the first week in April for the actual BMT.  Abby was making some cards yesterday from a kit that came from a sweet lady at my folks' old church in CA and she found a card with this quote on it, "She stood in the storm and when the wind did not blow her way, she adjusted her sails." (Elizabeth Edwards)  We hung it in the room to remind us that life is about change and not being in control but we can choose to accept and adapt as best we can.

Anna and Lily will be coming down on Friday for their follow-up blood tests to see if one or the other of them would be a better donor for Abby.  They are nervous but stepping up to the plate for Abby.  Children's is great.  They will have a Child Life Specialist meet us before the blood draw so that they have someone with them, besides us, to help it go smoothly.  Lily is still hoping she gets to donate.  Hopefully, the next time we blog Abby is home!

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.  

http://amzn.com/w/BZO2G3JFWKCZ

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. 

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.

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 7^th 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 7^th 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 7^th 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.

Day 3 Inpatient

Abby went into the hospital on Tuesday morning and started with the chemo that's in this next week. It's the same chemo she had last week. They anticipated she might get high fevers this week since it's the second go around and they were right. She's been spiking some pretty high fevers but last night and today so far she's been normal. She needed some more red blood cells which they gave her. They also give antibiotics and an antifungal in her IV once she starts with a fever just in case it's not chemo induced. She slept off and on yesterday but today she's a little more chipper and not as sore everywhere. Mark has been down with her the whole time because I'm sick and can't go to the floor until I'm better. My mom flys in today and will head to the hospital to take a turn hanging out with Abby.

     We had planned the big bone marrow transplant consultation meeting tomorrow but our doctor is also sick so it's been rescheduled for Tuesday. We were able to get a little bit more concrete information about when things will roll with that. It looks like the end of this month she will start all the pre-testing if her counts are up to certain places. Then  the week of March 14 she will have the transplant. Big steps ahead. We are daily hanging onto truths that God loves Abby and has a good plan for her life, even though it hasn't gone how we'd like. It looks so spiritual when you put it down in letters on the page. Truthfully, it's a wrestle. But, we've enjoyed many blessings on this journey even though it is been really rough. Abby is dealing with things most people don't have to deal with until they are much older. She's also wrestling with her own faith in a way that most kids don't have to do until they're older. We are hopeful that God will redeem and make new and beautiful things out of these ashes.

Home

Abby got home Thursday afternoon.  She's doing pretty well.  She's on a high-dose steroid pulse which makes her really emotional.  Her mucositis is healed so that is a great thing.  She enjoyed painting some calendar pictures while she was in the hospital and I thought you all would enjoy seeing February's page.  We are refreshing and getting some much-needed family time before she goes in for a couple of weeks on Tuesday.

On to Block 3

Abby is doing the inpatient thing for a few days as she starts the 3rd block of her treatment.  She checked in (no bellhop here!) Tuesday morning early (she and Mark drove to Denver through 14" of snow) and had her bone marrow biopsy and some spinal chemo and is now comfortable in her room getting more chemo and the high-dose steroid we like to call "the grumpy pill".  Teenage hormones and steroids are not a good combo. This week's chemo gives her irritated eyes so they are giving her eyedrops every 4 hours to help.  She may develop an infection in her eyes also and this chemo can give high fevers in addition to the nausea that comes with most chemo.  So far, she doesn't have a fever.  If that continues, she can come home Thursday late afternoon.  If she does get a fever, they will do a blood culture and keep her 24hours after the blood culture stays negative.  Her GI mucositis is just about healed up and the chemo she will get in a couple of weeks that caused it last time is a lower dose so hopefully she won't run into that problem again.  So....that's the medical details. It's always hard to know how much you all want to hear on that front.  The long list of procedures, medicines, and side effects gives you an idea of how she's doing but it doesn't give the full picture, of course.  Abby is a trooper.  The hospital stays are challenging because the sleep isn't great, the food is so-so, and she feels crumby most of the time.  She loves being home, hanging out in her room, reading, playing with legos and her sisters on Minecraft. But we have enjoyed several chunks of time at home with her and we are so thankful.  This month involves a lot of hospital time, most likely, but we are hopefully that there will be a couple of long weekends to enjoy as a family.  My mom is here helping out which is a huge blessing. She is amazing!  We are so grateful to my folks for doing this.  She is planning on staying off and on through the bone marrow transplant.  On that note, we have the consultation probably next week when we are in the hospital again for a repeat of this week's chemo.  We will get lots of information from our new bone marrow doctor, get to ask all our questions, and Abby will get a full exam.  Then, as we understand it, once block 3 is over, we wait for her counts to come up to a certain point and then we start doing scans and tests to check out how her whole body is doing, looking for any possible infection before the bone marrow transplant goes forward.  You can join us in praying for all that this month has in store and for Abby's heart as she processes all of it.  She is weary, we all are.   We need wisdom on how to help her walk through this.  We need strength to care for her, comfort and support her and each other.  Thank you so much for your prayers and support.

Abby's Birthday -a restful fun day

Today was Abby's birthday.  We had a small family birthday at lunch and then a few friends over for pizza dinner, ice cream Sunday dessert and lots of giggles in the living room.

It was a fun party, and unique too.  We had everyone wear hats since Abby now has no hair -she's still a bit shy about that.  So, to make her feel comfortable, they all wore hats.  Great friends.  We had lots of sanitizer and masks on hand to keep the germs at bay as well.  It's not exactly the party that we'd all want, but we have to adapt and so we try to have fun with it.

Overall, Abby has had a good week since she came home.  The pain quickly subsided, her ANC is moving higher and once she hits 500 for her ANC (immunity count), they will start the 3rd block of Chemo.  That will probably be on Tuesday and will start with a bone marrow test, 5 days of Dexamethasone (the grumpy pill), some chemo in various forms (including the dreaded leg shots) and an in-patient hospitalization.  Hopefully this will be a short time in, maybe a couple, or 3, days.

Then some clinic visits to make, a Bone Marrow Transplant team meeting on Friday, some more clinic time and then a long hospitalization for what might be the remainder of the month.  Hopefully this will be less intense than the last hospitalization but I won't be holding my breath.

Regardless of what is to come, this little relaxing week at home really was a super nice little calm before it get going again.  It was a great, and much needed, break.  I took some bike rides, Tiffany and I saw a movie, we had some time with friends and some fun nights as a family too.  Still not the same, but I'll take it.

So, here we go again.  Probably starting block 3 Tuesday so we better make tomorrow count.

ANC 120 = On her way back home!

Well, they finally let her out!  She was at 10 for a long time, then 40, 70, 90 today. They won't let you out till you get to 100 so they decided to do another blood test today at 3pm (instead of waiting till 1am like normal) and she passed!

So, she's on her way back home as I type. It'll be nice to be together as a family again. That was a long stint in the hospital. She still has some pain but I think it's more manageable now and she's off most pain meds except Tylenol. Hopefully now that her immunity is coming back up she'll heal up quickly before we start the next chemo round. 

Have a great day!

She's a Match + Legos, and updates

We got the match results today and have a match... actually 2 matches!  Yup that's right both Anna and Lily are matches for Abby's bone marrow type.  Very rare that both siblings are matches.  The bone marrow transplant (BMT) team will do some further blood tests on both girls to see who might be a better match and then we'll go from there.  We have an appointment with the team in early February to get all of the details and hopefully have a better understanding of the timeline too.

In other news, Abby is still in the hospital, still in some pain (but much less, just depends on the day), off of the morphine, and still has an ANC of 10.  We have to wait until her ANC is 100 to leave and I think they want her pain to be manageable with oral medication too.  Hopefully we will continue to move in the right direction.

We watch a lot of movies, do some crafts and she has built a few lego kits that friends have brought in.  The legos have been a nice distraction and it is great to see her actually use her brain a bit more than just watching the cooking network.  Since we are probably here for a while longer I decided to buy her a big kit for her to work on.  It has 1600 pieces so that should keep her busy for a while!

Today was a busy day actually.  Abby finally got her head shaved as the hair loss was ramping up again and she was getting tired of the mess of hair.  We also changed rooms to a room with a tub so that she can take some baths now.  That is a huge help for her right now so we were very happy.  We actually have the same room that we had for the initial stay and it is a very nice room with a great view.

Tests, Tests and an Update

So, lots is going on this week.  On Thursday morning, before we had to rush Abby down to the hospital, we all did our cheek swabs and sent them in to the lab to see if any of us will be a bone marrow transplant match.  I don't know when we'll have the results but at least it is all sent off.

It was nice to be able to do it at home but it was a bit stressful too.  I just kept wondering if I was doing it ok or not.  I didn't want to mess up for sure.  Lots of pressure on those cheek swabs. I almost dropped one of Annas but caught it mid-flight before it hit the ground.  I had 4 swabs for each of us so it would've been ok but still, a bit stressful.

The 2nd MRD (minimum residual disease) test will be sometime this week.  It was suppose to be on Monday but since she has no white blood cells to test they will need to move it to later in the week.  We should have the MRD result and our bone marrow match test results soon too.  At that point, they will be able to make some decisions on what the rest of the winter and spring will look like for Abby.

We do hope that one of us is a match and that her MRD is a lot better than last time.

On the hospital front, Abby is doing better.  Still on some pain meds but she can go for longer in between the doses now.  She's also eating again, at least a couple meals today.  I'd say she is 50% better and we just hope things keep moving in the right direction.

Pain meds and recovery

So, Abby's having a hard day but better than yesterday. Without going into too much detail, Using the bathroom is very painful. She was on morphine yesterday and has a standing order for it if she needs it. They almost gave it to her again today but the oral pain med finally kicked in. They think it is probably sores, like a canker sore, in various places down her digestive system. Just part of how chemo works, targets rapid dividing cells, and can be indiscriminate.  

It's so hard to not be able to take the pain away. But she's in good hands here.and I'm glad they have pain meds that help her tolerate the pain. Once her blood counts get better her body will be able to start to heal again. Hoping and praying that that time is soon. Her ANC is still at 10 so she has a ways to go. 

Thanks for reading, for all the Facebook comments, texts and for everything else you all are doing to help our family through these trials. 

Rough go in the hospital.

I should be an early warning system. I knew she was having a rough go today and by 2pm she was in the car to the hospital. 

She was in lots of abdominal pain and had a fever. They put her on morphine. She just had an X-ray and it looked ok. 

Please pray that she sleeps well. And gets better soon. These types of nights are tough ones indeed. 

Thanks. 

One day at a time.

It's really not fair to you all reading this, we either post when things are hard or we don't post at all. I guess the fact that we hadn't posted much lately was a good sign.  But I'm sure we'll be posting more soon as things are getting pretty tough right now. 

Abby is still home and that's been nice. Actually last week, though we drove dailiy  to the clinic, 1.5 hours each way, wasn't as bad as we thought. Abby tolerated the medicine pretty well and we enjoyed having here home in the evenings. It takes about a week for the medicine to fully work: drop your blood counts, give mouth sores, digestive issues, and kill the bad cancer cells too. So, that's where she is now, at the bottom. 

It's a tough place, the bottom. It's tough on her physical of course but emotionally too. She cries a lot about her sore everything and just wants it to go away. I just want to take it all away. But standing by her bed, rubbing her back is about all I can do for her right now.  I want to take it away but I can't. 

As a parent, this is one of the hardest tensions that I've ever encountered in life. What do you say to your crying little princess with cancer in a time like this?  The answer is, 'nothing'. You say nothing and instead you cry with her. You rub her back and wipe her tears. You run your fingers through what's left of her hair and you pray words for her that she can't pray for herself. 

At the beginning of this I wrote an email to some of our friends in Colorado. I said that this is the hardest thing we every had to do, twice. That's true. But, as my friend reminded me the other day, I often also say that I'm, 'just taking it one day at a time.'  I think that is God's grace in this week too. 

So, through the joy, the pain, the good days and bad, I'm just going to continue to fight for myself, my family, and especially Abby to just take it one day at a time. 

Just wanting to say thanks...

Ok, so I had the best of intentions.  I have a stack of thank you cards that I sincerely would love to sit down and spend time on, thanking each and every one of you for the gift cards, meals, blankets, craft supplies, slippers, hats, coloring books, stuffed animals, notes, cards, money, and many other wonderful heart-felt gifts you've all sent to help Abby and us through this.  However, as you can imagine, it's been a challenge just keeping food in the fridge and the laundry done.

I know no one expects a thank you card from us right now, but we want to make sure each person knows how much we appreciate your thoughtfulness.

So we say a very sincere "thank you" to each of you who have reached out to us with a gift, even if it is a simple card with words of encouragement.  It helps tremendously in the practical sense but also in knowing we aren't alone in this.

There's a cool story in the bible where Moses is trying to keep his arms and staff raised up so that the Israelites can remain victorious in battle.  Eventually, his arms get too tired but every time he lowers them, the battle turns and the Israelites start getting beaten.  His two friends, Aaron and some other guy I can't remember right now, stand with him and each hold up an arm.  Although Mark and I  can't compare ourselves to Moses, you all are our arm-holding friends.  When we feel like we are being defeated by despair and exhaustion, one of you steps in to hold us up and help us toward victory.

1500 Miles.

I've been trying to figure out how to summarize what life has been like lately.  But seeing the odometer roll over to 1500 miles since we've owned it seemed to fit the bill.

This is the clinic infusion week.  Abby is tired and a bit emotional.  She really just wants to feel better and play with her sisters.  We've had a couple good talks with her to see what we can do to help her out but you know what it's like to feel sick and depressed... unfortunately that's kind of where she is right now.  For a girl that doesn't express her emotions very readily, that is probably an ok thing.  She needs to wrestle with the reality of this life just like the rest of us, unfortunately a big part of that wrestle will be centered around being a 13 year old with cancer.

So, we're plugging along. Trying to help her the best we can.  Overall the week has gone ok so far.  We get up at 7am and drive for an hour and a half to the clinc, get her hooked up.  Fluids, chemo 1, flush, chemo 2, anti-nausea meds, food, ipod games, videos, coloring, a bit of online math, and then drive home by late afternoon.  

We have 2 more trips down this week and then hopefully we can keep her from getting a fever somehow -not very likely but a guy can hope right?  If no fever, she stays home for most of next week.  If a fever... we drive her to the hospital and stay there again until her counts get to the prescribed level.

In the meantime we are waiting for the insurance to approve the bone marrow swab test for the girls and then we'll get to see if any of us are a match (25% chance for Lily and Anna, 5% chance for Tiffany or I).  The rest of the extended family has the same chance of being a match as anyone who is reading this.

Once we know if they can find a match, and once we have the 2nd MRD test in mid-Jan, then we'll have a bit more of a timeline as to what our spring may look like.

One day at a time.  Thanks for all of your support.  We appreciated it more than we could ever express on a blog post for sure!

Home Early

We got a pleasant visit from the oncology doctors this morning asking Abby if she'd like to go home today instead of tomorrow.  She said, "Huh?" We were planning on going home tomorrow because it can take a bit of time  to clear all the methotrexate out of your system.  They had drawn a level this morning, however, and she was already low enough to go home.  We were thrilled!  So right now Abby is playing monopoly express with Anna, thanks to the Alvarados who lent it to us, in her room. Lily and I are trying not to fully succumb to whatever cold virus is trying to infect us.  Thanks to Aunt Linda, we are doing the OnGuard oil thing, taking "KickAss Immune" from Whole Foods, drinking lots of water and drinking copious amounts of Nonnie's lemon-honey tea.  Hopefully one of those things helps keep this cold away.  I plan to go to bed at 8:00 tonight, though I haven't told Mark that yet... 

Thanks for all the prayers for Abby this hospital round.  She did well.  The nausea seems to be the biggest challenge right now.  Next week she gets 4-5 hour daily infusions in the clinic with chemo she hasn't yet had.  There are two different ones and they both cause a lot of nausea.  We are also starting a more full-time homeschool schedule next week with Anna and Lily.  We'll see how this all goes!  

As the new year begins, I am feeling a lot of things.  The obvious things like confusion and sadness are there.  I am also trying to release a lot of the things I can't make sense of, like most of what we are going through right now.  There are so many questions, so many unknowns and possible scenarios that I can easily get dragged down to anger, despair, hopelessness.  But I get up each morning and I do the next thing and amazingly, God meets me there with a thought, a bible verse that is profound, a word from someone who cares, or some small but big gift like snow crystals on our kitchen window that remind me that the God who created crystalization is with us through this and his love is steady, his plan is good, even when I can't see how.    

Noodle Bowls and Bingo

The hospital has lots of lovely artwork

waiting for a procedure

doing Legos in her room

playing BINGO, she won twice!

36 hour high-dose methotrexate

Abby has been the hospital for the last couple days. She checked in Tuesday, had a spinal tap with chemo (went under for that one). Then she started her 36 hour high-does methotrexate infusion. She should be done with that in a few hours. Then she'll get a single does of the PEG (the one that they gave her shots instead of last time because of a possible reaction). They've looked into that minor reaction from when she was 5 and a going to try it today instead of 6 more Erwinia shots. I'm happy with that. Those shots were rough!

Next week Abby will get 5 days of other chemo agents. 4 to 5 hour infusions each day. These will probably make her very nauseous and will drop her counts back to super low again by mid January (1 week later).

This is quite the opposite of what we were planning on doing during this Christmas and Bew Years break. We actually have a rental in Hawaii that we were suppose to be enjoying. I removed all the phone reminders but I still flipped over to check the weather in Estes Park yesterday (10 degrees) and saw that it was 70 degrees in Hawaii. Such a contrast. Snow here, sun there. Hospital infusions here, beaches there. It's hard to not grow bitter in my sadness about the change of our circumstances with these contrasted of what could've been. Hopefully we'll be able to redo some of these things, that we have put aside/missed for now, at sometime in the future. 

Abby is in good spirits. Hospitals make everyone tired but other than that we are doing ok. Have a happy New Years!

MRD results "I don't wanna write that blog post"

We finally got the call with the MRD results on Christmas Eve from Dr. Smith.  Not the Christmas present we were hoping for though.

After lots of talking Tiffany said, "Well, who's gonna write that blog post?" Neither of of really wanted but it has to be done.

Basically the MRD ( results weren't as promising as he had hoped (translation: chemo alone isn't going to work.  Secondary translation: Abby will need a bone-marrow transplant or more).

They wanted the MRD (minimal residual disease) to be less than 1 in 10,000.  Abby's test showed 2.8% or 280 cancer cells out of 10,000.

We don't have much information on the future but here is what we kind of know.  Abby will continue the Block 2 protocol and probably the Block 3 cycle of chemo to get continue to kill her cancer.  Then somewhere this winter or spring she'll be transferred to the bone marrow transplant team.  Once they have a matched donor they will do a set of intense chemo and x-ray treatments.  The bone marrow will then be infused into her like a blood transfusion, it will make it's way to her bone marrow and graft in and then start to produce new blood for Abby.

One pro is that a bone marrow transplant is a significantly shorter process then 2.5 years of chemo but it will be intense.  6 or more weeks in the hospital is all we know at this point.  But if all goes well, she'll be done by the fall, maybe earlier.  Children's Hospital in Colorado is one of the top bone marrow transplant centers so I know we are in good hands.  They might decide something different when the leukemia team meets on Wednesday but it seems like the bone marrow transplant is the most likely.

We are just trying to take it 1 day at a time right now.  I don't have enough brain and emotional energy to look much further ahead than that.  We had a good Christmas morning and have 2 more days here at home before we have to check back in to the hospital for a 5 day stay.  The week after that are clinic infusions for 4-5 hours each day and then we'll have another little break (though she may spike a fever in there and have to go back to the hospital again).  Either way, we are going to enjoy our next couple of days at home!

Hopefully you had a good Christmas and are looking forward to the New Year.  Take care and we'll post more as we know more.

Block 2 and Still Waiting for MRD

So the initial bone marrow test was negative, 0% leukemia cells out of 100.  The more in-depth look (MRD-they look at 10,000 cells) is still in the works in Seattle.  We made another trip to Denver today to the clinic for the first round of chemo on block 2.  It's another 29 day block with a bone marrow test and another MRD at the end.  They compare the two MRDs and decide if chemo is working or if we need to go the bone marrow route.  Block 2, as Mark mentioned yesterday, has another 5 day hospital stay in it, followed by a week of 4-5 hour days in the clinic.  Then we get a week off in terms of chemo.  Her ANC will be really low by then so we may end up in the hospital again if she gets a fever.  We also took a peek at the chemo roadmap for the next 6 months.  Block 3 is even more intense than block 2 in terms of hospital stays and types of chemo they give.  Obviously, we want to follow the doctors' recommendations since she is a special case, but it's a lot of chemo.  It was a long road last time too but it seems like we have more on our plates now with older kids, a whole life to pack up in Japan, and a this sudden u-turn in our life journey.  I was talking to a wise friend today who reminded me that gratitude keeps us afloat.  It keeps us from sinking into hopelessness.  There is always something to by grateful for.  Yes there is a lot of pain in our journey right now, a lot of loss to grieve and a lot of hard things ahead.  There is also a lot to be grateful for.  It's Christmas and we have a God who loves us beyond what we can wrap our minds around.  He shows us how much he loves us by giving us daily gifts.  Leaves with frost on them on a morning walk that reminded me the beauty is all around.  People caring for us at the clinic, at home, at church so that we don't have to shoulder this heavy load alone.  Cards, emails, texts, gift cards, words of comfort... we are so grateful for the knowledge that we are not alone during this trial.

Block 2 starts Monday.

It's been so nice to be have everyone in the same house again. Abby's been feeling ok. Mornings are a bit tough with nausea but she's still eating pretty good overall, she just eats more at night now. 

Block (or cycle) 2 starts on Monday with chemo and the grumpy pills (high-dose steroids) through Christmas. Then she'll be admitted again for a week or so starting on the Tuesday after Christmas for a higher dose prolonged infusion. 

We don't have the full test results of the bone marrow test back yet but the initial results look promising. The Dr. made the analogy of a garden where plants and weeds grow for her bone marrow. Basically they just used Round Up on her garden and they killed it all, good and bad. The results right now show that not much of anything is still alive in that bone marrow garden and therefore the chemo is working well. 

It's nice to see Abby feeling good enough to go outside a couple times in the last days and I'm not looking forward to this next pulse. Hopefully each pulse will be a little less intense as we move on through this treatment. Monday's results will define that path more clearly. And as we all are, I'm praying for the easier of the 2 paths as well. 

More info once we have it. 

They are letting us leave!

Not much time to blog right now. They are letting us leave!

Gonna make a break go it!

Here. We go!

Day 29 test today

Well, it's here.  The Day 29 test.  

Seems weird that it has already been 29 days of treatment.  Japan feels so distant and yet so strangely close.  We still haven't settled back into Colorado, still feel split between to places.

This day has been looming over us since we left.  It was basically the "third option" as Dr. Smith called it.  Come back for the first treatment, see how she responds and then we can decide from there.  It was a great option, without it I would've had to decide if we were going to start treatment in Japan (knowing that she might not be healthy enough to leave on a plane for a while), or if we were going to just fly home and leave everything be had just built in Japan -that's a hard decision to make in 3 days.

So, we took the 3rd option which gave us time to think it all over, to let the reality of what this new road would really look like sink in.  Time to be honest with what we had already lost.  Yet, we have already lost our life in Japan, the way it was.  The bike rides to school as a family, the smiley visits and hugs from Abby and Anna during their passing periods.  We've lost the dream of being together each day as a family.  We'll have to grieve that.  It'll be a process but we'll walk it out together, as best as we can.  So, the reality is, that things have already changed.

I was hoping that the Day 29 test would somehow make it all magically clear, we would know if we should stay or should we go back to Japan?  However as we walked out the last couple weeks it has already become clear.  We will be staying in Colorado for the rest of the treatment.

Here are a few paragraphs that Tiffany I wrote to convey our sadness to some friends and colleges at ASIJ:

"The Schreiber family will not be able to return to ASIJ while Abby is undergoing this treatment. 
-that sentence has brought many tears with it, and is hard to write.  Oh how we wish it was different in so many ways.  But it's not, and so we'll walk this new path out in faith and hope and see where it leads us.

We did want to come back, we've been holding out on having to make this decision, hoping to wait until the 30-day test are in.  Unfortunately, the test result timeline put the school in a hard place for potential re-staffing.  I had a candid and honest conversation last week that it was very unlikely that our family would be able to walk out this treatment in Japan, especially in the short-term.  Even if the test results are good, and she only has to do the chemo route, it would still be several months before we would even have the possibility to return and at that point who knows what our needs may be. 

So when we look at it that way, we see that unfortunately things have already changed, we can't go back to the way it was in Japan, and that is what we really are longing for. 

Though it's only been a semester, ASIJ feels like a big part of our family.  We know you and all of the other staff would've supported us in more ways than we could even imagine.  We know that the ASIJ community would've rally around our family, around Abby.  However, when I really think about what Abby needs, what her little 13-year-old personality can take, I just can't see her walking this out in a Japanese hospital. I know the medical care would be great (and I'm sure she would learn Japanese extra quickly there). However, I don't see that road as a road that would really build her up, something that would encourage her faith. Even with all of the support that would be rallied around her, I see it being a very lonely place for her.   

We moved to Japan to do life together as a family, and we did.  We loved getting hugs from the girls whenever we could see them, the beginning of the day, at lunch or anywhere in-between. Through the good and the hard, we were grounded as a family. And now, with this radical change of events, we are striving to be in this together as well.  We just wish we our extended ASIJ family could be here with us along the way. 

So, it's day 29 and we don't have to wait for the results.  Either way we are staying here and re-starting our new life.  More changes to come but we'll walk this out just like we always have -in faith and as a family.

Have a great Christmas break everyone.

-The Dad.

Same old same old

Just a quick update that we are still in the holding pattern here at the Hospital.  Abby is a trooper for sure.  She has a great attitude about having to be in the hospital for so long.  We are hoping that she'll be able to go home soon but you just never know.  Today the ANC was at 60 so maybe it will keep trending up.  I would think she'd be out of here by the weekend, hopefully sooner.

Have a great day.

Haircut

Day 10 in

Well, we are still here.  Tiffany, Vicky (tiffany's mom), and I have all been taking turns staying overnight and keeping Abby company.  One of us drives down in the late morning, hangs out for a bit, then the other one drives home before rush hour traffic.

I know this drill all too well and I also know about the record keeping for medical.  I just dug up one of my old spreadsheets to use as a template for expenses. This morning I entered our mileage since the start of this and we have already hit 3300 miles of commuting since her first appointment.

Overall Abby is doing good.  She's a real trooper and has a positive outlook on this whole hospital stay.  Still it isn't fun all of the time and we've had some tears together over various realities.  The reality of her hair coming out is probably the biggest one right now.  It brings the reality home when your hair starts falling out.  I'm sure the bald head thing will be a challenge for her more this time than last time.  Did you know that they make a bald Barbie with wigs and such?  Yep, Abby has one now.  I actually think she is excited to play Barbies with her sisters (for the first time in her life).

Tiffany's mom is going to come up and cut it a bit shorter today so that she won't have as much to loose as it come all out.

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.