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.