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!
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.
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.
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.
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.
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.
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.
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.
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.
Abby is still in the hospital. Her ANC is 30 and needs to be 100 before we can leave. Also, she needs to be fever free and no blood infection for a couple of days. Those two things are happening so far but the ANC needs to come up. We could be here awhile. However, her spirits are good. She has some familiar faces now and has been able to replace our first week here's experiences with some positive ones. She had a blood transfusion which helped her energy level since her hemoglobin was so low. Her nausea comes and goes. She's still pretty pale but her really bad headaches are now just now and then and she's not dizzy anymore. They continue with chemotherapy while we are here, the priority being staying on the roadmap so we can hopefully see good results on the 16th when they test her bone marrow again. She gets to go shopping today with the Make-a-Wish people downstairs. She did this when she was 4, it's a great event! She gets to get Christmas presents for 6 people. They help her pick them out and wrap them for her, and I think there are christmas treats at the end. So, it sucks to be in the hospital but she has been blessed by lots of fun things to do and great people. Yesterday she got a visit from a nurse who was her primary nurse last time around. It was so great to see her. We hugged and cried. She has had a picture of herself and Abby on her desk for years. She brought it and gave it to us. She is here in the clinic so we will see her again. Abby doesn't really remember her but she was a huge gift to Mark and I! She's a wonderful lady. Abby also received a "bag of fun" from an organization that puts backpacks together with fun things to do for hospital stays and chemo treatment stays. There are some amazing things in the backpack, including a Kindle Fire. Wow! We are still blown away by it. Thanks for all the texts, emails, gifts, meals, and prayers. We still feel shell-shocked but know God is walking with us through this and when we look up from the pain, we see his hand all around us from beautiful mountains out our window to all of you letting us know we are not alone.
We were just about to leave the clinic, she had done great with her shots and all. The unaccessed her port and just as we were getting her shoes on, we felt her head... Hot.
So close. They just hooked her back up, drew some blood for cultures and are giving her some heavy duty antibiotics. She'll have to be admitted tonight, and possibly for a while. Her ANC (infection fighting blood count) is 10. Mine is about 2000 so she pretty bottomed out.
So close but at least we were already here. She'll also get a blood transfusion to bring her hemoglobin back up as it a bit low today too.
Things have been pretty quiet since Thanksgiving and it was nice to not have to update the blog since things were going good. I guess no news is still good news. We did get our roadmap (treatment plan for the month last week so I thought I'd share what I know about this plan with you all.
Basically, right now our Monday, Wednesdays, and Fridays are a bit full since we have to take Abby to Denver on each of those days. These extra trips are primarily for the shots that she has to get. I think today is #6 in the 6-shot series of Erwinia. She gets 2 simultaneous shots in her legs each time so she hasn't really been enjoying these days (to say the least!). We are hoping and praying that she will find that place of strength that she has often shown in the past when she gets flu shots or other needle sticks. Unfortunately right now she hasn't found that strength very often and the shots are producing a lot of anxiety for her prior to the appointments.
Today she will also get another chemo drug today in her port and then start the second round of Erwinia shots on Friday. That round will finish out right near her Day-29 bone marrow test.
Here's the basic roadmap as we know so far:
Nov 19th- Officially started Block 1 (28 days of an intensive 6-drug rotating chemotherapy)
Dec 16th- Will be the Day 29 test of bone marrow to find the MRD (Minimal Residual Disease)
Dec 17-23rd -Treatment break and MRD test results back.
Dec 24th or Dec 28th- Start Block 2 (28-day intensive chemotherapy)
End of Jan- MRD bone marrow test and 1 week break for counts to recover.
After that... we don't know yet.
Based on results of both Day 29 bone marrow tests (but the first test is the most important) she will either:
1) Continue chemo (still don't have a good roadmap of what this would look like)
2) Start the process for a bone marrow transplant.
So, we are very hopeful (and praying hard) that the Day 29 test shows that the cancer cells are gone. If that is the case, we have a lot more options on what our future looks like in terms of here treatment and where we might be able to get that treatment done.
Off to our appointment. I'll try to most more often this week too.
In August I started capturing our life, day by day, in 1 second clips. My thought was that it would be great to post it all over on the web on Thanksgiving Day. Show off our new life in Japan, a way to remember all that we are thankful for in this new life.
Everyday, I would capture a quick moment. It was a fun to look over the ever-forming video from time to time, especially on those days when I was worn out and missing Colorado. It was a video highlight reel of our new life. On November 14th at Narita Airport I posted the video with this message, "Well, I've been making this 1 second everyday for a while. I think this is probably a good chapter break for now. A new chapter begins when we land."
I thought that would be my last 1 second a day video clip. Why would I want clips of the Children's Hospital, of chemo drips, hard times or bald heads? At that moment, the Japan clips seemed less-than-realistic, just all the high points of our new Japan life. I had omitted all the clips of Anna crying about math homework, or people missing our Colorado home. I didn't have clips of us taking the kids to the Japan Drs... in the rain... on bikes... with bronchitis. -so why start now?
I told my good friend this same story, that I was done with "1 second everyday", the chapter break would be the end. But he's a true friend and he wouldn't let me quit. He challenged me to not stop the clips, not to stop looking for the good in the midst of challenging times. He said that the Japan clips weren't fake, they were real, they were about finding the blessing in a hard transition. Sure, it's a bit manicured, but we all do that to some extent.
Manicured... Or, it's called looking on the bright side ,or counting our blessings -And that's what I'm going to continue to do. I had to go back and fill in the few days that I didn't want to capture but I think that's ok. So, here's the video of the beginning of our new chapter, a chapter that will most likely be a challenging journey, but one that I will capture and find things to be thankful in nonetheless.
All of are home today, Abby is doing good as are all of the other other kids. Thanks for walking with us in this journey and Happy Thanks Giving to you all!
Well we went down to Denver today for a treatment, spinal injection of chemo, shots and another chemo via her IV.
They checked her counts and her white counts are super low. Good and bad at the same time. She's severely neutropenic (means her body is very low on her infection fighting cells, neutrophils.
If she gets s fever we have to rush her to the hospital and admit her so we are praying she doesn't get a fever! Please pray for that as well. Thanks! They want her to eat more as she lost 6 lbs in the hospital last week, that's a lot for her. So, I guess we'll see if she wants to eat lots of cheese or maybe a Whopper. Or a Carl's Jr. burger. Or a cheese cake, the whole thing... that would get the weight back on her huh!?
Other than that she is good. It is so nice to see her here at home. Ahhh hopefully we have a little time to relax now. Enjoy your turkey day and hopefully we will too!
We are really hoping and praying that Abby will get out tomorrow. Try as we might, they still didn't let her go home today.
To be honest, it was a rough day. She really wanted to go home. She had more shots and she was on a big combinations of anti-nausea as well as anti-anxiety. The effect of them all was not the best, she was super emotional and repeated the same thought over and over and over, all day long. She is tenacious and just wanted to go home.
To be with her was hard. As a parent you just want to unplug her, throw her in the car and leave. Yet, at the same time, we know they are all trying to get her better and are looking out for her so we just have to trust that the Dr.s and nurses are doing the best that they can.
So, she is still there. Vicky is staying the night with her and it sounds like she has calmed down and gone to sleep. They will take her vitals again later tonight and if all is still good, they will release her tomorrow morning. It will be super nice to have her back in our Colorado house again.
Well, Abby isn't quite ready to go home. Her phosphate levels are too high without the help of IV fluids to keep them down. If her nausea gets better, she may be able to drink enough liquids to keep them flushing out of her body. Her uric acid levels are too high as well. She is too nauseous to eat anything and hasn't kept anything down yet today. So, all of those things together mean she needs to stay in the hospital a bit longer. We will see how the week unfolds. She has more chemotherapy tomorrow and Wednesday and Friday (all of which include those nasty shots in her legs). Hopefully we can find a good combo and/or plan for the anti-nausea medicines so that she can get more on top of it. Her port sight is getting less tender so that's good. Her spirits are low. She is trying to work through so many things right now. We had a wonderful visit from her previous oncologist, Dr. Smith, and his nurse Sara, that were as good for Mark and I as they were for Abby. As Sara sat and talked to Abby she emerged from her shell and for that we are very grateful. Sara is a very special lady. She saw Abby through the whole ordeal last time. She and I were pregnant together with our third babies. She has the rare gift of being able to gently assess what's going on, take charge of the situation, and stay on a heart level with you the whole time. She is very perceptive and has a ton of experience with cancer kids and a ton of experience with Abby. Dr. Smith (deemed "Dr. Sniff" by Abby back when she was 3) is wonderful too, we are so glad he is on the team to fight this with us. So, right now Abby is sleeping, with the help of some medicine. Mark and I went out to dinner last night while my wonderful mom stayed with Abby. So many lovely people on this road. We couldn't do this without each of you.
Just a quick post to let everyone know Abby may be able to go home tomorrow but not today. Her phosphate levels are too high. As cancer cells die they give off phosphate so it's a good thing on that sense. She is also not eating much and not taking her medicine well today. Prayers she can start eating and drinking and taking her medicine would be appreciated. She just wants to be done with this. It's a lot to take in and deal with.
Today was a tough day for Abby. I don't want to sugarcoat these update but I don't want to depress people either. I guess all I can do is update: the good, the bad, and the ugly.
She got to go for a walk to the gift shop without her IV pole with the family when she was feeling ok.
She ate dinner and played Uno with Tiffany tonight.
We had lots of support from friends and family and are feeling very encouraged.
She is in good hands of the doctors and nurses.
She reacted to one of the chemo drugs last time (PEG) and therefore can't get that shot again... unfortunately (is there a bigger word than just unfortunately?) she has to get 6 shots for every 1 shot of the PEG that she would have gotten.
This therapy had 2 PEG shots for each 30 day block... that means 12 shots in her legs
She sobbed in fear for a large block of time today and finally we got some anti anxiety medication for her so that she could get those shots.
There are a lot of fears of pain that are ruling her emotions, I think a lot of them are based on the subconscious fears from her last treatments... please pray against those fears.
Sorry, I can't share much of that. It would just get us all down. In a time like this you can't really look more than 1 day in the future, it's too hard, too many "what ifs".
So, let's just leave it at this: watching your kid go through this, and not be able to do much to be able to help, is one of the hardest things I've ever done... twice.
Positive note to end this post: She might be able to come home tomorrow! Oh please let her come home. I honestly don't know how people get through this without faith... I'm having a hard enough time with it!
Thanks for all of the practical help, prayers, cards, thoughts, and email notes. We appreciate them all more than we could ever convey in a blog post.
I really don't want to post right now. I'm sad and mad but mostly sad. I can't believe we are doing this again. I can't believe she is doing this again. Almost 8 years after we took everything out and said goodbye we say hello and put it all back in. I don't want to have to watch my little girl suffer again but that's the only option we have right now.
Overall Abby is doing ok. She's sore and nauseous and it's only going to get worse on those fronts. We went over the treatment roadmap last night with the doctors. She handed us sheet after sheet of chemo drugs printed out with names and side effects listed for each. She told us what the 1st block (cycle) of treatment would be for this month and it's pretty intense. She is on a relapse protocol that has had good results in the past. It has some new chemo drugs in it and a lot of the old ones that we know about all to well. The goal is to get her into remission by the end of this cycle, test, and then we can decide where to go from there.
The reality of how much we may be at the hospital, and how sick Abby might be, hit me like a truck last night. It's a hard place to be. I so long for a nicer set of drugs that can cure these cancers but we don't have those yet. Chemo feels a lot like using leeches, or maybe a gun, to get rid of an infection on your leg. It's a really hard thing as a dad to stand by and let someone "heal" your daughter in this way. I guess this is why people tore their clothes so much in the old testament writings.
So, I'm overwhelmed, Abby is sad, we are all tired. We will all hit the wall at some point. And, at that moment we have a choice, either get bitter and mad or rest in our faith in God's plan for our lives. Fortunately and unfortunately, we don't have the choice to insulate ourselves from the harder realities of this world any longer.
To live means you also die. To really smile you must also cry. Pray that we will all rest in a peace that is not our own.
I remember this life. You can't sleep so you start to think. And thinking turns into the need to write and so you start to type. They you figure that you shouldn't keep these thoughts to yourself so... you post. It's kind of being in a coffee shop. Nice windows, free coffee, comfy chairs that turn into beds, clean sterile floors, lots of fun bells ringing. Well, I guess the coffee and chairs are the same. I wonder if they would let spruce it up a bit more. Maybe let me bring a laser cutter in here? -I could cut our a really cool room sign for everyone!
Anyway, Abby is finally asleep. It has been a rough re-entry. I think she just has so many fears that get brought up from her past experiences, fears that she doesn't even know are in there. Today her main emotion was fear and anxiety over what will be the next painful procedure. Jet lag doesn't help either. I'm wide awake at 10pm and I don't have an IV in me. They moved her IV yesterday and put it in her other arm but still she says it hurts. Her back was also sore but that seems better now with tylenol. Basically she has been in some sort of pain for the last 5 or 6 weeks since her legs first started being bruised and swollen. Chronic pain just wears you down, I hope she can get some sort of relief soon.
They did the bone marrow test today and got the preliminary results in a format that they can read, in English this time too, which also helps with the readability. Acute Lymphoblastic Leukemia (ALL). We will know what type it is tomorrow but the Japanese tests already showed that it was pre-b, the same type she had last time. She will also go into surgery for 2 procedures: a spinal tap + chemo, and she will also get her med-o-port which allows them to access her veins without having to give her an IV.
It's weird to be here again, last time I wrote about her first treatment I was wrought with fear but this time I'm not. I just want her to get going so that she will start to understand that fear has no power over her. My prayer is, that her fears of the unknown will be replaced by a kind of peace that can't be taken away by these new circumstances in her life.
Have a good night, or day... depending where you happen to be in the world.
Abby is checked in at Children's Hospital. They haven't done much yet because the Japanese test results are a bit hard to read so we are going to repeat them tomorrow. Also in the mix is the fact that her blood counts are pretty good right now and they didn't see any blast cells in the blood today. So before we move full steam ahead with treatment, we are going to pause and make sure we are heading in the right direction. Several doctors have stopped by and taken a look at the bruising and Mark's well documented pictures from the beginning until now. Way to go Mark and the school nurses! Abby is doing well. With two new owls to keep her company and shrimp for lunch what else could a girl want? The first of the bone marrow test results will come tomorrow afternoon. The rest we will have to wait a bit longer for, Tuesday night or Wednesday morning. Thanks for the prayers and love sent our way, we are feeling it all and appreciate it more than we can say! We will keep you all posted.
This week, we pulled the eject lever, and rapidly came back to Colorado to start treatment for Abby's Leukemia.
Below are some excerpts of emails that I've sent this week to my friends and family from both sides of the globe. We leave in 30 minutes to the Children's Hospital in Denver and we will once again have a better view of what this journey will look like soon.
From Wednesday night after diagnosis to some great guys in my life: ****** "Well, it looks like this will be our 2nd time that we get to walk down the road of Leukemia treatment. But right now I'm in Japan so I need your wisdom and I have about 2 days before I need to make preparations.
Basically, our big fear came true today, when I took her downtown to St. Luke's (the International Hospital). They did another blood test that I requested and detected blast cells (they shouldn't be in your blood stream though). So to get the definitive answer, they asked to get a bone marrow sample. They got the sample and 90% of her marrow is blast cells (that means she has Leukemia again). They will know the specific type of Leukemia tomorrow. "
And to our Colorado Friends once we had made the decision to fly home for a bit:
I had lots of catchy subject lines for this email. Like, "Dusting Off the Old Abby Update Page" or "What are the Odds?" But, in the end I decided not to even do an executive summary and just put the news right in the subject line.
Yes, Abby was just diagnosed again with Leukemia.
8 years off treatment she has relapsed. This is very very rare, kids don't normally relapse like this... but when has our family ever been normal. I will find out what type of Leukemia it is in a couple of hours when the results come back. So yes, we are dusting off the old "Abby Update" blog from 8 years ago and I'll be recording some new entries. Or maybe I'll do a Facebook page but those are kind of the least of my concerns right now because I'm still in Japan. I definitely didn't see this coming.
So here is the nitty gritty. We are coming home for a bit. Abby is doing remarkably well. We caught this really early. She still has an ok immunity and we are praying for that to hold up for another week or 2. She has a bit of time before she has to get on treatment, probably a week. We've talked to a lot of people and prayed a bunch and both the people here in Japan and our doctors in Colorado agree that we should get treated in the USA, especially for the first month. So, we will be flying back to Colorado with 10 suitcases this weekend or early next week.
I'll post info on Facebook as I know and send out links to other ways you can keep in the loop in the future soon.
On to the heart stuff. This is hard. It's going to be a bumpy road again and we are all ready pretty worn out from all of this transitions that we have just gone through. I am optimistic that Abby will be cured again. And I also know what the treatment will look like. It will be long and tiring, there will be days again when I don't think I can do another day. And then I will do that day, and the next and the next. This time Abby is a teenager, she will also face this struggle much like Tiffany and I will. It will leave some marks on her, some more battle scars, some more physical scars too but we all need to continue to remember that our life is not our own and that we are not in control. That illusion of control has once again been stripped away for the Schreibers and I'm going to trust that we will experience God's freedom in new ways as we all walk this out together.
More info will be posted here soon. From Tokyo to Colorado, we love you all!
Writing helps me think and process. While we were in the Japanese hospital, St. Luke's in Tokyo, I wrote this while waiting to get the bone marrow procedure and test. November 12th- Well, I guess we'll have done this twice now. Wow.
When you walk into a room with 4 doctors that is never good. That's what I just did. There are some things that transcend the language barrier huh?! Lots of doctors in a room after a longer-than-normal wait time is one of those things. I will remember this day for the rest of my life, just like the time that Dr. Samuelson told me the first time that Abby had Cancer. I remember that vividly too. I'll remember this in the same way. I will remember walking out to the little garden area, calling Tiffany and telling her that, “we need to talk.” But this time it is in Japan, on my Japanese phone, I took a crowded rush hour train here not a car. How will we do this cancer thing here? Oh, how your life can change with 1 train ride. Yet, at least this time I know the potential road ahead. Blood cell counts are abnormal, but you shouldn’t have 12.5 % Blast cells in your blood, you should have 0. 12.5- I will now have another number burned into my brain. Last time it was 70,000 total white count, this time it’s 12.5. -oh how numbers can have such significance.
But 50%. It could just be a scare. I used to have the mug that said, “reaching for 50%”, I wish I had that now. It would be good to carry around. That's all I got to write that day. The rest is a blur. Leukemia in Japan. The taxi ride home was worth the full cost. We sat in the quiet and I thought about how my life was once again going to change. I don't know what Abby thought about she is often pretty quiet. She is a strong kiddo but I don't want her to have to be so strong