Merry Christmas 2018 Updates

Hello everyone. They say no news is good news and, well, they sure are right!

Abby's been doing really good. It looks like the knee surgery worked and she walks around, dances, slides on the kitchen floor and is acting like a pretty normal teenager -even has some teen-angst sometimes ;) Overall, she's been doing really good. She still loves creating and has lately been spending time with a close friend who also shares her love of LEGOs. They build some pretty cool stuff. She is also back to playing the Cello and we're excited to see what other interests she will start to pursue this coming year.

Anna rarely slows down. She loves to be creating, making, cooking, drawing, coloring, making slime, or any other artsy/crafty thing. She still plays piano and is also in a weekly music group (with Abby) called Half-Step. They get to sing a bit, do some instrument workshops She did piano and dance and tried guitar this summer too!

Lily is still singing a ton and playing guitar now in the church middle school youth band. For the band she needed a guitar so we let her pick out a nice acoustic steel-string guitar over Thanksgiving while Tiffany's Mom (Vicky) and Dad (Robin) were in town. Robin is a great musician and helped Lily pick out a nice guitar with a pick-up and a built in tuner/equalizer. She loves it and is doing really well with it. She also has a great voice and it's great to hear her sing with others now.

All of the girls are doing some school at home and some out of the house, mostly math classes. Anna and Abby are both in Algebra and Anna was very proud that she is getting good grades. She texted me one day and said, "Dad, I'm getting an A in Math!!!! Can you believe it, Me! an A... in MATH!!!!" The message also came with a lot of emojis.  Lily gets the extra benefit of being able to still go to the Friday Home School Enrichment Program -that I, Mark, run in Greeley on Fridays. She's doing some art, music, science and other fun classes and it's nice to have her with me on Fridays.

Speaking of school, Abby and Anna are transitioning to having more and more school out of the house. This semester they only did math but next semester they will take Geometry, Biology, and an Art class at a local charter school.

We also have a Japanese tutor who is helping the girls (and Tiffany too) to learn Japanese. All of them have gotten about 1/3 of the way through a college-level language textbook already. Their goal is to be able to test out of the language for high school credit. Also, they'd like to go back to Japan for a trip someday and be able to order some good sushi or ramen. It is a hard language but they all love it and our tutor is great too.

As for me (Mark) I'm doing well. I've been traveling around the country helping schools implement new innovation labs and makerspaces, mostly at independent private schools. I've also been writing innovation and creative-thinking focused activities for use in schools, community centers and corporate settings. I'm planning on launching an Innovation "cookbook" of sorts with lots of activities to help people unleash their inner creative in the early spring of 2019. I'll let you know about the launch when it happens. I'm pretty excited about it.

Tiffany just sits at home and eats bon bons now.   Tiffany is hard at work everyday teaching the girls and putting up with me ;). Though most our free time goes to driving the girls around, she has found some spare time to learn to knit and also goes on walks with friends during the week to stay connected. Home school (and driving them all to the half-time schools for math and such) still takes the majority of the day up but it's been great to have some much time with the girls. 

Actually, now that the medical stuff has calmed down, and that the girls are older, we both have a lot more time go out on dates or out with friends. It definitely has been a nice change.

Thank you all for following our journey and for all of your support, prayers, and friendships!

You can follow more of our daily posts and life (mostly via Instagram now): Mark @schreiberm & Tiffany @tiffanyschreiber

Have a Merry Christmas.

Knee Surgery Monday... hopefully

Long time no typing but I wanted to give you a short update.

Abby is doing ok. Off steroids for the most part but the year of high-dose use has taken a bit of a toll on her bones. It's call AVN Avascular Necrosis (bone death due to lack of blood supply).

The good news is it is only really bad in her right knee (minor involvement in both ankles but no pain yet). There is a 60% chance of healing (or a miracle... pray for that). She's been non-weight bearing for about 6 weeks in a wheel chair and crutches.

On Monday she'll get holes drilled in the dead part of her knee (aeration of the dead tissue) to increase blood flow and help it heal. Unfortunately she has a cold right now so we aren't sure she will be able to get anesthesia with a cold. If not, we'll have to postpone the surgery until June which will be hard for our summer trip plans in early July.

So, pray that she can get over this cold or that her knee will heal fine without surgery. Or both!

Thanks all!

M

The Normal Life of the Schreiber Fam

It's early on Christmas morning, maybe a bit too early to be typing an update, but I wanted to get this out by Christmas for you all to let you know how Abby and our family has been doing lately.

Executive Summary:
No news is typically good news and that is the case here at the Schreiber home too. Overall Abby is doing good. We aren't in the hospital this Christmas. She can walk again. There is snow on the ground, presents under the tree, and coffee cake will soon be warmed in the oven. The kids do kids things again: Sledding, fishing, tickling and arguing. Tiffany and I can do parent things: Work, homeschool the girls, go on dates, bike rides, and of course break up kid arguments:) We have good days and bad days. I guess life is getting to be normal again and that is a beautiful thing.

What Our Normal Looks Like:
Last year didn't start out the way we had hoped. As you know Jan-April was pretty intense. Abby was in the hospital for a long stint, couldn't walk, couldn't straighten her arms, and after lots of tests they finally put her on high-dose steroids and other meds to knock out the inflammation and autoimmune attack on her muscles. Since then she's progressed steadily with the help of physical therapy which is now down to only one time per week instead of three.

After 9+ months on steroids, they are starting to ween her off them now. This is a long tapering process that involves stepping down methyl-prednisone 4mg every 2 weeks. At the same time they are ramping up a different cortisol pill until her body starts producing her own again (but that takes a while when you've been on steroids for so long). By mid January she'll be completely off steroids and she is looking forward to her normal non-puffy face coming back too.

The pills have gone from lots to now fitting in 1 bowl!

In the midst of this all, Tiffany has been teaching the girls at home again this year. The girls also take a private math class a couple days a week and then go to the home school enrichment program that I run on Fridays where they do art, music, some science labs, ceramics and more. Abby started cello again this fall, Anna continues with piano and Lily is singing in a choir as well as learning guitar.

I'm working full time as a consultant helping schools and corporations bring hands-on learning to kids through teacher trainings, curriculum development, and presentations. I'm also directing the home school enrichment program that the girls come to on Fridays with me (Abby gets to go this year too). I had been traveling about once or twice a month but that has slowed down this winter and I'm happy to have more time at home while it lasts.

So for the moment, I guess we are back to normal -whatever that really is.

At the same time we are still a bit timid about this new normal. Never sure how long it will last but that is true of us all right? There will be unexpected joy and pain in all of our coming years. Our "normals" are all in constant flux -that's called living.

So, thanks for reading. Thanks for sharing life with us. Thanks for all of your support over these last couple of years. I'll try to update more often but if I don't, know that we are probably just having a normal life, walking out each day as it comes and looking for the beauty -each step of the way.

Merry Christmas!  - The Schreiber Fam

A Quick Hello

Hello everyone!  Many of you would mostly like love an update on Abby and our family.  Mark will be writing on in the form our our blog Christmas letter soon!  I am here to let you know that all is well, except for the arrival of the flu at our house this week!  Prayers for protection for Abby and the other girls would be welcomed.  Abby is on Tamiflu for protection, and I got on it soon enough that I am starting to feel better here at day 3.  So thankful to medicine once again!  I also wanted you to know that Abby and Anna have an Esty shop where Anna is selling handmade polymer clay beads and jewelry and Abby is selling hand-tied fly ornaments for the season.  So if you still need some Christmas gifts, check it out:

https://www.etsy.com/shop/FlyByArts

More soon, when Mark gets on top of not only his health and work deadlines, but can type up a more detailed update! Hope you are all enjoying the holiday season.

Summer...finally!

We are enjoying our first "normal" feeling summer in two years.  Abby is doing great.  Her physical strength is slowly improving with the help of physical therapy twice a week and exercising at home daily.  We wanted to give you all a quick update since it's been so long.  Mark is working hard, his consulting business is doing really well.  Anna and Lily are excited to be moving into less school over the summer.  Lily started a choir camp this week.  The Schreibers are here visiting us currently and we are enjoying some non-hospital room visiting time with them.  All is going well here at our house and for that we are very grateful!  Abby has been going down to the clinic weekly.  We are trying out a once every three week visit as of this past visit.  It felt great to have Friday come and go and not have to take the 4-5 hour trip down to Denver.  The plan for Abby is to continue on the steroid therapy for the muscle GVHD.  We had hoped to be off the steroids sooner but the doctors would like to wait until November.  Her dose has been slowly lowered and she is on what is considered maintenance right now.  Since the consequences of a relapse are not something we want to even chance, and since all the data (though it is limited since muscle GVHD is so rare) says that 6 months on a maintenance steroid dose is the best bet to avoid it, we will most likely go that route.  Her immunity continues to be pretty low because of the steroids but she has avoided any sickness which is great.  We were able to take a short trip to San Diego and stay on the beach for a family vacation.  We had a wonderful time!  Hope you all are enjoying your summers.

Finally Took the Christmas Tree Down

People keep asking us how we are doing, and to be honest, I don't think we really yet know. The last couple of months have been a blur, have been very intense/demanding, and I think are all just starting to get to a place where we can look around a little again and see where we've landed.

How We're Doing:
We're just realizing that we landed in... well, March. What? When did it get to be March? I was fine with a Valentines Day tree but shamrocks really do clash with pine needles so last weekend I drank an extra cup of coffee and took the Christmas Tree down before the calendar hit March. Now the lights on the house, they are still up, but they're white and I'm thinking I can make that work for Easter somehow if needed.

The Stats:
But yes, it's been intense to say the least. In the last 2 months Abby has had:

• 12 out-patient trips to the clinic
• 15 nights in the hospital
• 3 weeks of plus 101 degree fevers
• 4 weeks of not being able to walk well/straight her arms
• 22 different medications (down to 10 now)
• 3 procedures
• 3 surgeries
• 15 needle sticks

And I'm sure I missed somethings too like all the Docs she's met (PT, OT, Infection Disease, Rheumatoid, GI, Eye docs... too many to remember). 

The Progress:

Anyway, once all the test were done, and the dust cleared they put her on high-dose steroids and she started getting better. A bit grumpier, but better nonetheless.

Abby does Physical Therapy every day, twice a day to stretch and strengthen her arms, shoulders, and legs. She'll be going to appointments 3 days a weeks still (2 of them in Fort Collins). And she can almost get out into bed by herself but still can't get off of lower seats yet so we help her around a lot. She uses a walker when out of the house on her way to appointments but otherwise she pretty mobile now. 

Abby still get's IV fluids and an IV anti-fungal drug each day plus takes a lot of pills but she's also had time to watch shows (mostly cooking shows right now -ah the joys of steroids), and has even been preparing some of her own meals which is a great way to get a little more exercise in too.

So, overall we are still tired but things are moving in the right direction and it is great to see Abby up and about once again. It is great to see her progressing so rapidly and we are praying that this speed of recovery will continue through March.

Thanks for checking in and we'll let you all know if something else big happens, otherwise, know that we are just moving forward slowly but surely.

We're Home!

Sorry for the delay in posting. Abby came home Tuesday night. She's been improving daily and we've been busy figuring out life at home. She's using a walker some but getting stronger each day. More to come when things slow down a bit!

Tiffany


This is Mark, I'll add some too---

Overall Abby is doing better but still needs a lot of help. I think the rehab of her muscles will take long time but she is a hard worker and I so we are hopeful that she will be able to regain full range of motion and full strength. The biggest help has been the steroids. They are a double edged sword amazing help but also rough side-effects. She's on a high dose of methyl-prednisone and though it is a wallop of a dose, she seems to be tolerating it ok. She was on IV dose of it that was at 100mg twice a day, then 56mg twice a day when we got home. That's pretty mega dose (I've been on a small 5 day prednisone pack and I was at 50mg for just 1 day and I'm twice a big as her).

On Friday she went back to the clinic and they did some blood work and since it came back good they dropped her down to 35mg twice a day and they will continue to taper her off over the next 4 or 5 weeks until she is off of the steroids. She will stay on the anti-rejection drug for much longer and then they will ween her off that one as well.

All of this medication is aimed at stopping the inflammation and muting the immune response so that Abby's new blood cells (that are genetically Anna's) stop attacking her muscles. What the Docs think happened was that a virus, drug-response, infection or something triggered a normal immune response to go and attack/clean up the intruder in Abby's muscles. But, somewhere in there, the cells went a bit crazy and just kept attacking the "foreign invader" which happened to be Abby's muscles. We talked to a rheumatoid Dr. for a long time about this and he was super knowledgeable and helpful, if Abby's wasn't a past bone marrow transplant kid he wouldn't been handling the case as he see this type of auto-immune response a lot in his line of work. Anyway, it was good to hear from such a knowledgeable Dr. in that deals with this stuff daily. He was quite optimistic that she would recover well. He also said that this response typically comes from a trigger and once you calm down the response it goes away. We may have to watch out for what the trigger might have been (we'll stay away from the 2 new meds that she had taken) but we may never know what that trigger was as it could've been a virus that they just don't have a test for that particular strain.

Anyway, she's on the mend but it is going to take some time to fully heal. Lots of pills again. Still have to hook her up to fluids and IV anti-fungals, and do lots of exercises... it's a full time job but at least we are home.

Thanks for reading,

Mark

Still tiptoeing on Monday

Wanted to update y'all (that's for our dear Texan friends in Japan) this morning.  Abby is about the same, emotionally and physically.  We are seeing a bit of improvement in her muscle weakness and pain.  The steroids began Friday night through IV.  So far the new treatment is going along hitch-free.  No word on when we get to bring her home.  As far as I know her liver and kidneys haven't gotten any worse.  No news yet on the liver biopsy.  We did have a lovely visit from the rheumatologist ("Hi, I'm a rheumatologist." Don't hear that everyday.  Kinda like during radiation when one guy came in and said, "Hi, I'm a physicist.") Anyhow...the rheumatologist, who would have Abby's case if she wasn't a BMT patient, looked Abby over, explained things really well, gave us lots of information, and listened to all our questions and gave good answers.  Nothing new really but he reiterated the auto-immune factor to this.  It's officially called myositis and necrotizing myositis. The immune system, either from a virus, a reaction to drugs, or GVHD, has recognized a threat in the muscles.  It mounts an immune response to deal with the threat but then sees the results of its attack as another attack and starts dealing with that. So, the end never comes to the attacking unless you suppress the immune response with steroids first, then something else if need be later on since being on steroids for too long isn't good.  The muscle biopsy, although it wasn't conclusive on telling them if it's GVHD, can predict future treatment course so that's great.  Those tests won't be finished until later this week.

Meanwhile.... Abby is taking a lot of pills with a throat that (being a muscle) doesn't work very well.  She is doing her best to stretch and maintain her range of motion in her elbows and ankles.  She is watching movies, eating a bit here and there, and wanting very much to go home.  Oh, and the rheumatologist said not to hit hard with the OT/PT because it could damage her muscles at this point. That was good news because doing all the exercises has been really difficult.  Backing off a bit sounds wonderful to us all.

I think we have a long road of rehabilitation ahead of us but at least we have a direction to head.  That feels good.  We are, of course, exhausted but God keeps providing in all sorts of ways.  Thanks from all of us for your encouragment, prayers, and support.

Proceeding Gingerly into GVHD

One of our doctors camped out in pathology last night with the pathologists and Abby's muscle sample results and they have made their decision on how to proceed.  The results weren't conclusive but there is enough evidence that it is GVHD of the muscles to proceed with treatment.  As our last post said, it's going to be a balancing act with her immune system.  Not treating for GVHD when it could be GVHD means she may not ever reclaim mobility and her cells would continue to attack her muscles.  As it is they are hoping they caught it in time to reverse the effects. So, we are heading into treatment.  They started IV steroids last night.  She will get a cousin to the anti-rejection drug cyclosporine  which was in her drug line up until November.  She will take penicillin because of bacteria that can enter the blood from the GVHD/muscle attack. She will also take the antifungal that possibly caused a reaction, since we can't rule that possibility out yet totally.  They will enter into all of this with her slowly, or "gingerly" as our doctor put it.  They will keep a close eye on her as we proceed.

So..... how's Abby?  The liver biopsy and PICC line are over.  She was under for 3 hours.  All went well and she has the new line in her right upper arm.   That is a huge blessing in the midst of all this hard.  She was pretty groggy most of yesterday afternoon and napped a lot. PT and OT showed up at 4:00 to try to work with her and it went okay.  They will be in daily so we are grateful for the help while Abby is fighting it because it hurts so much.  We tried giving her the big pain med but she was so groggy it was hard to work with her.  We'll have to find yet another balance there.  I feel like all this balancing is going to come crashing down any moment! One day at a time.....right?  So she was on oxygen after the procedure and her blood pressure was really low going into the night.  I haven't heard from Mark yet on how she did or if they got a visit from the ICU team to talk about moving her there for the night.  No news is good news?  I hope and pray that Abby's anxiety can come down a bit now because of the PICC line.  Every third person coming into her room for the past week has been there to poke her.  I sit in the living room of our house right now and think that even though this is so hard, at least I get to come home every other day.  Abby doesn't.  She is only watching TV and sleeping right now but we hope that will start to change.  I brought her art supplies, her legos, some books.... I'm praying those get used soon. We will head down to the hospital after lunch today so Anna can have some time with Abby.  Lily has to sit in the family lounge outside the floor because it's respiratory season and she's under 12.  She's a good sport.

Prayers?  Continued healing, strength for all of us as we walk this out, steroid side effects to be minor (grumpiness, sadness, paranoia, obsessive behaviors), no reaction to the antifungal, infection protection, everyone's hearts in this (with 3 girls and me there are a lot of emotions going around!), and wisdom for the doctors as they proceed gingerly.

Thanks!

Maybe out by Valentines? Maybe.

I talked to the Docs yesterday. Still no answers but they are leaning heavily to graft vs. host disease (GVHD). Basically your blood cells attack the foreign body (which happens to be your own body) because they still haven't learned that this is their new home. Typically this is seen in the skin, the gut, or other fast dividing cells but it has been reported in the muscles too.

So, if it is muscle GVHD, we need to knock the cells back down and/or mute their response with drugs or other treatments. Basically weaken her immune response, and in doing that, weaken her ability to fight real infections too. So, as you can see it is a real balancing act and they really have to have a clear diagnosis (or at least know that it is not an infection) before they knock out her immunity again.

Yesterday was a muscle biopsy. I could've swore they said needle biopsy but I may have put those words in their mouths. Either way, the surgeon who did it had done a bunch of them at John Hopkins and was very skilled. She took 3 fiber strands, each was about 5mm X 5mm X 15mm. They way she did it doesn't effect the muscle integrity and Abby said walking wasn't more painful than just sitting there. Pray it heals up quickly, especially if they have to drop her immunity down soon. It was pretty painful but after an hour or so we got it under control with meds. -That was a tough hour.

Today she goes in for her Picc line as well as a liver biopsy. Both of these procedures use radiology imaging to see inside Abby while they drive the hardware and/or instruments down through her veins. One they will drive down from her neck vein to the inside of the liver for a biopsy sample. The other (the picc line) will snake along from her arm towards her heart so that they can have a nice way to deliver meds or take blood samples without giving her yet another IV or needle stick (she had 2 failed IV attempts and 3 finger pricks -all that failed to get the neccessary blood) on Wed night. Basically this Picc line will save her from having to get needle sticks for a while and that will be a great thing as she gets really anxious each time they have to stick her.

The plan right now is to get the pathology back from the muscle and liver biopsies and then make a treatment plan once they have ruled out any type of infection. We hope the pathology is done by Monday so that we can start treatment and then hopefully leave. But, as we all know, anything can happen and so we'll see. I'm hoping and praying that we can come home by Valentines Day.

Thursday

 The muscle biopsy was done this morning early and over by 930. It was a little more than we expected because they made a 1 inch incision and they took a couple of muscle fibers. We were prepped for a needle biopsy. She is in a lot of pain. Heavier pain meds got on top of it around 11/00. It was a long couple of hours for Mark and Abby waiting to get on top. Just wanted to give an update.

Abby's page ranks #1: The good and bad of this cancer recovery

Did you know that if type in "Abby Update" into Google, that this site is the first listed? I am happy that you all care about our family so much to make it the top listing and, at the same time, that also makes me sad, mad, and full so many other emotions.

It's a small taste of the same things that we are feeling right now. Glad for all of the love, the care of the Docs, and our friends. But, we'd also like to not have to be updating this page still. It will be a great day to me when our Google page rank fall down off of the first page of the search results. :)

The Heart:

It's been a hard shift for us again. From a healthy kid to once again back in the hospital. I mean seriously, Abby was doing so well: getting stronger, playing in the snow, walking with us around town, doing math... you know all of the normal things of life. And now this. -whatever "this" is as we still don't know. I don't know if this is the right forum for full honesty about how we are doing (and I was just in the hospital with Abby for 5 days so I probably not in the best spot either). But it's been a hard-to-swallow reality check that this cancer recover road isn't just a walk in the park.

It has been a hard and anxiety producing place to live in right now. Hard for Abby. Hard to endure yet another needle stick for blood draws. Hard to keep getting new IVs because they are only lasting 2 day. Hard for her not to be able to straighten her arms, or to walk, or sit up by herself in bed. She's a perseverant and tenacious kid but everyone gets to a place where they are just exhausted and I think she is there daily right now. And, for me, it's hard to watch and not be able to do anything about it.

The hospital is just a hard place to be. So pray we can leave there soon.

The Update:

• They still don't know what is going on. 
• Bone marrow test was negative for cancer so far (deep test comes back later this week or early next). 
• They have the infection disease team checking for weird and rare infections and viruses but they are pretty sure those will come back negative. 
• It could be a rare form of graft vs host disease that is attacking her liver and muscles (but they need more test for this).
• It could've been a reaction to one of the meds she was on for the fungal and bacterial infections. Both drugs come with warning labels for rare but possible tendon rupture/damage. -but after you have already put your kid in a lead shielded room for radiation you kind of stop reading about all of the possible side-effects of these treatments.
• Either way, we'll have to probably get her on steroids to bring down the inflammation and then do a lot of rehab to get her moving around by herself again. 

The Plan:

Wed:

• AM- Abby gets another new IV and blood draw. -Plus takes pills, drinks her water (62oz per day), does her stretches for her arms, hamstrings, calves, ankle and shoulders to try to regain her range of motion. 
• 11:30- Abby gets a 2 hour MRI to help diagnose where all of the muscle damage is so that they can take biopsies of those muscles later this week.
• PM- More pills, physical therapy, water, mouth care, etc.

Thurs/Friday: 

• All the same AM and PM items (which is a full time job).
• Surgery to get a semi-permanent IV (called a picc line), and a Liver biopsy, and muscle biopsies.

Sat/Sun/Mon/Tues?

• Maybe get to go home. Please, please, please.

The Prayer:

• For strength as we run this new leg of the race. 
• For Abby to relax into this place even though it will take a lot of her energy. 
• That our relationship with Abby will transcend the: pill pushing, the making her drink water, making her stretch, making her.... 
• That we all can have peace about all the balls that will be dropped during this period of our lives in our marriage, work lives, school lives, family time and all of that.
• And of course for healing of Abby's muscles and for them to stretch back to their former length and strength.

Bone Marrow Test, New IV, and possible GVHD

I went down to the hospital today to see Abby.  I was finally 24 hours symptom free so the girls and I headed down this morning.  They did school in the car, as much as they could, and we were able to get there before Abby's bone marrow procedure.  It was good to see Abby and give Mark a little break.  Anna got to come into her room and that was sweet.  They did a puzzle together and played some GoFish.  Abby had a rough night and so she was tired and more emotional today.  Her IV was hurting last night so they turned off her fluids at about 1 AM.  Since the IV was causing so much pain, they kept it off but she then had to drink water for the next hour and a half to get in her needed amount before she could go back to bed.  Today was the bone marrow test which involves putting her under anesthesia.  They do that through the IV and it was still causing her pain this morning so they had to put in another one.  Poor kid.  They did it in the procedure room, which is like a mini operating room in the clinic, so the anesthesiologist was able to give her some laughing gas to calm her down.  The placement went great but the anesthesia itself burned a lot going in.  She has to have the IV in her hand because she can't straighten her arms all the way and hand veins are smaller and more sensitive.  But, once asleep the procedure was easy and quick and she took a needed small nap in recovery.  They did preliminary tests on the marrow for cancer cells and didn't see any-YEAH! They send the sample to Seattle where they do a more in-depth test that we will hear results on in 5 days.  They also tested the bone marrow for some other things and all is well there.  The hard news of today came when they discovered Abby's elbows actually can't straighten because of scar tissue.  They thought that when she was asleep in the procedure room they would try to straighten them to check but couldn't get the to straighten out.  This could mean she has graft versus host disease in her muscles.  It's pretty rare for that to be the reason, but since there is a chance of it they want to try to figure that out.  If they don't treat it and it's there, her muscles will continue to be attacked by her own body.  If the muscle damage and scar tissue are just from a bad allergic/auto-immune response from medications, then the same treatment will take care of that too since it involves  steroids.  So.... they'll do an MRI this week to pinpoint the most inflamed muscles and then biopsy those areas as well as her liver.  The biopsies aren't crystal clear on if it's GVHD or not, but they will give them something more definitive to go on in making the decision for treatment.  We also need to decide on having them put in a PICC line (I had to look up how to spell that-I don't know what it stands for) or another Broviac port.  If she has GVHD, she will need a Broviac for the months to come.  So we can have the PICC put in but it's only a bridge until we find out if she needs a Broviac.  Tonight, we're just glad we got through the day and she got to see Anna and we can think about PICCs and Broviacs tomorrow.  Goodnight all.

Still here but doing ok

They always say that hospital food is bad but I guess they have better food at this one. 

Back in the Hospital

So Abby went down to her clinic appointment yesterday afternoon and because she is still doing so poorly they admitted her.  She's lost 10 pounds in a week, she's still very sore, still getting some fevers, and staying hydrated and getting all her medicine in is a big challenge.  So, in the hospital she will get some nutrition by IV, some anti-inflammatory meds that will help make her more comfortable (we can't give a lot of those at home because they can't monitor her liver which is already under a lot of stress), and some meds through her IV to help the pill taking struggle.   They also want to call in the infectious disease team to do a workup on possible causes.  If she had the serum syndrome then it would be over by now.  A virus could last this long but they want to dig a little deeper to see what's up.  So they will do a bunch of blood tests for less common things, including things she could have picked up in Japan.  They will also do a bone marrow test on Monday to see if leukemia has returned.  That's the basic information at this point.  Abby is doing pretty well, which is a huge blessing.  She did have a 104 temp last night but she is eating some things today and in pretty good spirits.  She got her IV put in while in the clinic and it went pretty well.  Those things just hurt, there's no way around it, but at least she feels better getting it in the clinic where things are more familiar.  It was leaking at first but was fixed and is now doing it's job.  We will keep you posted as best we can.  Mark is in the hospital with her and will be until I get the okay to come since I have a cold.  He is pretty worn out, as you can imagine.  You don't get much sleep in the hospital.  He's on antibiotics for a sinus infection so hopefully that continues to resolve.  We are quite the group!  Anna and Lily are troupers, not sick, plugging along and helping and being their usual giggly selves.  I am looking forward to having some time with Lily tonight while Anna goes to a birthday party.  Hope you all enjoy your weekends.

Friday

Wanted to give some specifics as I know a lot of you are wanting to know how Abby is doing.  We appreciate the support, meals, prayers.  Abby is about the same as she was on Monday's update.  She did do a bit better Tuesday and we got her out in the living room for some gift opening, a bite of cake, and an episode of Just Add Magic.  We saw lots of smiles which did our hearts good.  Wednesday she was a little more nauseous and struggling to keep things down and take her medicines more so than on Monday and Tuesday.  We've seen the fevers still going up to 100/101 and then back down.  Her pain is the same but we think she is moving a little better, still needing our help to make big movements like shifting in bed, standing up, etc.  Mark is with her at the clinic today since I have a cold.  They will check the muscle damage levels to make sure they aren't going up and do all the regular checks and blood work.  She also is going to see the physical therapist for some exercises to help with muscle rebuilding.  I included a picture of the cake they got her because it shows how wonderful the cancer clinic at Children's is.  I was just sharing with a friend that we are so thankful for them.  She is getting the best care and we can rest in that knowledge.  Big prayer requests would be for her to stop throwing up and be able to take her medicines (about 15-20 pills a day) and for her to start getting some nutrition in her body.  She's not getting more than 300 calories a day, and that's the high number.  It's been this way for about 3 weeks.  Also, pray for our family.  Mark and I are so weary.  We are not functioning at our best and that effects all areas of our life: work, parenting the other kids, marriage...
And lastly, pray for Abby's heart.  She's very down.  It feels like we can't reach her.  It's so understandable but it's heart breaking.

Again, thanks for the support as we continue on this road.

Home but still hard

It's great to be home but Abby is still pretty sore, emotional and tired.

The fever is much better now and it staying down around 100 or lower with Tylenol or Advil.

The biggest prayer request would be for the leg pain to go away. It would be really nice to get her out of bed for her birthday but walking to the bathroom and back is about as far as we have gotten her.

So, not the birthday we were hoping for but at least she is home.

Mark

Going home

We are moving towards going home today.  Nothing has changed but they've done all the tests they can think of and all is negative.  Abby had a CT scan of her sinuses and gut, an eye exam, an ultrasound of her elbow joints that are not working very well, and an ECHO of her heart all yesterday afternoon to see if there are any pockets of infection hiding in those areas.  As of this morning, everything looks fine in those areas.  She is still getting the 104 fevers, throwing up, in a ton of pain when she moves, and coughing a lot.  But, they feel safe sending her home knowing that she will be more comfortable and sleep better there.  She has to be able to take and keep down all her medications and drink enough fluids to stay home so we are going to give it a try.  We are obviously so happy to go home, but also know there is a lot of care and work needed to keep her there.  We'll keep you posted.  Nothing to report of the serum syndrome vs. virus/infection front.  Still waiting on some blood tests that might shed light on the serum syndrome side and help them decide whether a dose of oral steroids would be a good idea.

Friday's Update

Abby is still at Children's.  Her fever is hovering around 100 and getting as high as 102.  It has been hovering at 100 but going as high as 104 so that's some improvement.  They took out her IV since she doesn't need any more fluids right now and her IV arm was starting to puff up.  They did an ultrasound of that arm/shoulder last night to see what was going on and we find out about that today when the doctors round.  They are thinking most of this is either an unidentifiable virus or something called serum syndrome.  Serum syndrome, as I understood their explanation, is something people can get in response to certain medications. It is like an allergic/autoimmune response.  So the high fevers are her body trying to mount a defense against what it perceives as a threat, the painful lymph nodes are the body trying to fight an infection (real or not) and the sore joints and muscles are an inflammatory response like when you sprain your ankle and your body swells that area to protect and heal.  She has been puffing up like a balloon and having a lot of trouble moving.  So, either diagnosis means waiting it out.  If it's the serum syndrome, they can do a short coarse of steroids to help with the inflammation.  Steroids lower your immunity, however, so if it's an aggressive virus then it would have a chance to thrive a bit more.  Today when the doctors round we should know more.  We should have a visit from the rheumatoid doctor to further explore the serum syndrome possibility.  Abby's starting to perk up a bit.  She got to pull her IV out, very satisfying!  We heard two owls calling to each other in our backyard last night so Mark recorded them and sent them to her.  My mom is here and down there with her now.  She sat up in her chair last night a bit which we will try to do more now so her lungs get some exercise (that is why they think we had that ICU scare Tuesday night-just her lower lungs starting to shut down a bit from all the body stress but mostly just lying in bed for so long).  I think that is the basics.  Thanks for all the prayers and support.  Abby may be able to come home by the end of the weekend.

Admitted to the hospital

just FYI Abby was admitted to the hospital yesterday. They are trying to find the cause of this fever and painful throws and joints. She doesn't have a port to access any longer so they have to use an IV and she is having a hard time with all of the needle sticks.

Fever is still high and now she's in IV antibiotics to see if that will help.

That's it for now.

Still bumpy but still at home -for now

I asked Abby if I could take a picture of her but she declined. I guess she doesn't want me to post pictures of her in her current state. Teenagers.

Actually I wouldn't have posted it anyway, she looks miserable, because she is. And at the same time I do think she is getting better, slowly better.

Fever is still up there but it is staying below 101.5 (we got to 101.4 at the clinic yesterday). Our big goal is to keep her hydrated and keep her taking her meds. If we can do that then we can stay home, if not, we'll need to admit her. We also have the option to go down to the hospital this weekend to get fluids and we may end up doing that tomorrow since she hasn't kept much down today.

Monday they will do more fluids and we'll have an appointment with a GI doc and then an endoscopy in the afternoon. It's probably going to be a long day but maybe we'll have some answers from the scope. It could just be the major fungal infection in her mouth and throat (actually her whole GI probably) or it could be a return of GVHD (graft vs. host disease) that was triggered by this sickness. It could be that a virus in her body re-activated (like the mono virus, or some other one that she had as a kid). Right now the jury is still out. We'll just have to wait and see.

Right now she is sleeping and we are praying that all of this rest will give her body a chance to catch up and kick out this virus as well as rebalance the fungus in her body.

Thanks again for all of your support and prayers.  -Mark

Bumpy Road- No News Was Good News

Well, It's been a while since I updated everyone.  And that's been a good thing. "No news is good news" right? But now I'm giving you news again, nothing huge but it's definitely been a bumpy road lately.

Basically Abby is feeling pretty bad. It all started as a cold but when you don't have much of an immunity a cold can be a pretty miserable thing. She's had this cold for about 3 to 4 weeks now and it wore down her defenses so much that she got a systemic fungal infection and maybe a sinus infection too.

She's now on antibiotics, a big-gun anti-fungal, and back to doing lots of rinses to try to get rid of the sores in her mouth and throat. She has also recently developed joint and muscle pain that has pretty much kept her in bed or on pain medication.

We are going back down to Denver on Friday to check with the clinic but right now they think it is just a virus that her weaken immune system will fight off, it'll just take extra time. I never knew the common cold, left unchecked by a healthy immunity, could get so bad. Poor kiddo.

So, please pray for her, as she once again walks through these painful symptoms. Pray that her joints/muscles will feel better soon, that her mouth sores will continue to improve, and that her nausea and cough will subside quickly as well.

Pray for her heart too. She is a trooper but she's also really tired of feeling so bad.

Thanks everyone, we really appreciate it!

Goodbye Broviac

Abby and I are sitting at Children's waiting for her surgery this morning to have both her ports removed.  She's nervous but very excited to have them out.  She will be able to go swimming again soon with them out, baths will be much easier, sleeping on her side will be more comfortable, and no more painful dressing changes every week!  It's a milestone to be sure and we are all excited to be to this point in the journey.  Surgery is scheduled for 11:45 today.  She will,  after this, have to have her labs done the old-fashioned way, so to speak.  She was a little nervous about this and had the chance to keep her mediport in so that she could occasionally skip the needle, but with any port in we have to come down to the hospital for at least 24 hours any time she has a fever of 101.  So, with both ports out, it takes that possibility away and that won out in the end.  Just wanted to get a quick update out!  She is doing great still in recovering.  She sprained her foot but it's doing fine now.  She has been out to ride her bike a couple of times and we enjoyed a short but sweet hike this past week during our staycation before school starts this week.  Hope you all are enjoying the rest of your summers!

Day 100+ and the results are in

Abby had her Day 100 bone marrow test last Tuesday and we have been waiting for the results.  They didn't have the results at the clinic today during our appointment but right as we were sitting down to dinner the doctor called and left a voicemail that the final 1 out of 10,000 cancer test (MRD) was also negative!

So, Abby is still cancer free and the bone marrow transplant is doing it's job.  We won't have another test until about 1 year after transplant. So far so good!

Now that we have those results they will start to plan the removal of her secondary access port (her Broviac) and she'll probably be able to get that out in August. She is very excited about getting that out because then she can take a bath and actually go under the water again like everyone else. She's been a great sport but she definitely does miss swimming!

Overall Abby is doing good. A bit hungry from the steroid that she is on but hopefully they'll be able to take her off of those in a month or so too.  They'll start to taper her off of her anti-rejection pills slowly and if all goes well she'll be off of that by November.

So, step by step she is moving back into the new normal world of life after a bone marrow transplant.

Thanks for all of your thoughts, prayers, notes and support you all are so great!  Thank you and I'll try to write at least every couple weeks or when big news pops up.

Some Pictures of our Latest Adventures

So I thought you all might like to see some of the latest pictures of what the family has been doing.  Now, remember that this is just the good stuff.  Life isn't always one fun thing after the other, actually, is it ever that once you hit junior high?  But we are doing pretty well over all.  We are all processing all that has happened over the past year in our own ways.  We hope we are giving space and time for God to heal each of us both physically and emotionally.  One year ago yesterday, we left Ft. Collins destined for Japan.  We deeply grieve that loss.  A good friend of ours posted a quote Mark and I thought hit on our feelings perfectly as we try to "get back to normal".

"There is no real going back. Though I may come to the Shire, it will not seem the same; for I shall not be the same."
-- Frodo to Gandalf, Return of the King


So, enjoy the recent fun we've had.  We are celebrating Abby's healing together daily in the little things.  She has her bone marrow test Tuesday to see if the cancer is still gone and if Anna's stem cells are still dominating the scene.  We'll let you know when we have the results, it takes 5-7 days.

Heading to the Farmer's Market

Lily got her ears pierced

Having breakfast at our favorite spot-Cafe Bluebird

Reading... look at the hair!

The eye doctor made her some reading glasses for her dilated eyes

Ice Cream and our neighborhood park with neighbors

ReEntry

Things are going weirdly normal in the Schreiber house.

I love having everyone living in the same house again.  Watching shows together and eating popcorn, me going to work in coffee shops while the girls do a morning of school -yes, they still are catching up on school this summer and they aren't super happy about it ;)

We are trying to plan for next year: what they will all do for school, what limitation we will still need to take into account and, what I will be doing for work (I've applied for a couple part-time jobs and am trying to get more clients for my educational consulting business). Tiffany and I now sit on the porch and talk fact to face instead of over Skype/FaceTime and I get to physically pray with each girl while I tuck them in.

Yet this normal-ness has really heightened the realization for both Tiffany and I of how not normal the last year has been.

If I had to sum it up, I'd say that we feel like we just woke up from a dream (in the last 2 weeks) and now we are wondering why everything that was normal is now "suddenly" different.

• We don't live/work in Japan any more, but at the same time I don't have my old job either. 
• The kids are going to do homeschool again... but it's not the same... they are changed (for good) from their educational experiences at ASIJ. 
• Tiffany is going back, from being a working mom, to a homeschool mom again... but she's changed too.
• We have our same house but it, like everything else, is just a bit different.

So, yes, it's great to finally be all back... but this may take a bit of time for us all to get used to what the old/new life is going to look like again. ;)

How's Abby doing?

Well, I'm glad you asked.  She's doing well. She is on a targeted steroid still and will probably be on it for another month or more. 

• Abby has all of her 2nd baseline test again tomorrow: EKG, Lung function, labs, eyes, and more. 
• On Tuesday next week she'll have her Day 100 bone marrow cancer test (a few days early). Please join us in praying that all of the tests, especially the bone marrow tests, come back great.  
• Near Day 120 Abby will have her Broviac tube taken out but they will keep her other central line (med-o-port) in so that they can continue to take blood and give medicines if needed.
• Abby will still be limited, can't be around large groups (especially groups of kids) so that she doesn't get sick. She will have to be especially cautious around people who haven't been vaccinated since she has most likely lost all of her antibodies to those diseases. -So, if you've never had the Chicken Pox or vaccine please visit us in the off-season or next year;)

Otherwise, she is doing pretty well. We get her moving around as much as possible and I'm going to start to take her on short bike rides in the morning when it's cooler to help build back up her muscles.

Have a great day and I'll add more info as we have it about Abby's test results and surgery results.

Home for the 4th Independence Day for sure!

Wow.

We are all home.

We moved out of the apartment yesterday, closed the door, locked it up and drove away. The van was full, as was the car, and then we went out to an asian restaurant to celebrate the fact that this chapter is closed. It's gone faster than anyone expected. The launch happened, we had some bumps but today, Abby is safely back to the little slice of this world that we call home.

It's like a really weird dream. All of the sudden I'm sitting on the porch, it's summer (when did that happen?), and life seems "normal" once again.  Abby is at the neighbors playing with her sisters, Tiffany is out at the store, I did a bit of work today and we all had pancakes together at the same table this morning.  Wow. I really can't convey the surreal aspects of this journey -it's been a wild ride.

So, here's a quick update of how we are all doing, plus a bunch of pictures.  Thank you all once again for all of your support, your prayers, your fundraisers, and so much love for our family. Thank you so much for supporting us as we have walked out this crazy last year. You all are such a blessing to our family!

As you will see below, Abby is doing great. She has broken a ton of records for how fast someone can get through a bone marrow transplant.  Out of the hospital on Day 22, released for a weekend visit somewhere around Day 43 and cleared to go home for good by Day 65 I think!  This is not typical. We weren't expecting to get back home until the end of July and instead it was the end of June.

We still have to be careful. If she gets a cold it would probably stick around for a few weeks and not be fun. She still has to wear her mask out of the house (for the next year) and she still has lot of limitations on what she can eat (they let her eat pepper now but no yogurt).

She will have a bunch of test on Day 100: A cancer test of her bone marrow, an engraftment test (to see how much of Anna's blood is there vs. Abby's, an EKG, eye test, lots of imagine, lung function, kidney, and so much more. We are praying that they all come back positive (in a good way). Probably the biggest issue at this point would be that the cancer comes back or that she gets some chronic version of Graft vs. Host disease (she's still on lots of meds to combat that for now).

But, for now we will rest. We will cook burgers, drink some cold 4th of July beverages and celebrate Abby's independence from living in Denver as one big happy family.

Enjoy the pictures, and thank you for our continued prayers for our family!

Another View from the Coast...celebrate good times, come on!

Ok, I'm hanging in Monroe, Washington alone again!  No, don't take this post as one that promotes public whining.  That's NOT my intent.  My intent is rather to CELEBRATE (cue Kool and the Gang). Abby has been released, yes, RELEASED from the "day to day" necessity to be within a few minutes from the Children's Hospital in Denver.  That means - Abby has improved so much to the point where she has been released to be able to return to some sort of semblance of normal life.  SO, to make this perfectly clear, she is home, hanging with her sisters, going for walks and bike rides, going to the store with her parents, sleeping in her own bed, going to worship on Sundays, collecting the next HUGE number of Owls (stuffed, I may add) in her room, reading, watching movies, helping with the housework...in other words, ALL NORMAL STUFF.  Is the battle over?  No, it is not!  She has clinic visits regularly to check on vital blood issues, monitor medication and generally do a "health check." She is still on a "short leash" in terms of having the hospitalization option there in case of some health issue at home (sisters or mom/dad getting ill).  Even so, put it this way, having both feet at home with the potentiality of having to return to the hospital for crisis management is an option we as a family will take all day, every day.  The amazingly miraculous nature of this is that it occurred over 30 days ahead of schedule.  That's right!  So, I'm hanging at home alone while Vicky (Nana) is visiting FOR FUN and not for the hospital/apartment rotation that dominated so much of the last six months of life.  While Abby is on this NEW plateau there is still a call to prayer and support as she weans from certain meds, continues to grow stronger and produce the kinds of cells in her body that promote health, and stays protected from the plethora of germs, bacteria, and viruses that plague our world.  I'm so proud of Abby and her courage and strength.  I'm proud of Tiff and Mark for their persistence, vulnerability, courage, and forthrightness in taking this challenge on with faith and love.  I'm proud of Lily and Anna for just being themselves...truthfully struggling at times but, overall, being so gracious and loving despite the trying moments of this journey.  I'm proud of my wife Vicky for rolling up her sleeves and jumping in head first to provide that necessary heart and love that made a difficult situation bearable.  Thanks to the Schreiber clan for their incredible support as well...Pam, Carl, Julie, Eric...they were all there in their own manner.  And the rest of our family...prayers, supportive conversation, hugs even though given from afar...all key in being sustained in heart and soul during the past months.  The war is not over yet...but battles are being won!  Praise God for that!  So, cue that video!

A Weekend Pass

All the BMT folks are impressed with how great Abby is doing and so we get to come home for the weekend. We stopped at Good Times to get some lunch on the way back and are looking forward to spending the weekend at home.

A New Norm?

By the apartment pool

Making sushi

Look what's around the corner!

Hi all.  I've been with Abby in Denver since Monday. Last week she had her endoscopy.  The jury is still out on that.  No viruses or bacterial infections were found so that's good news.  They just aren't sure if it's GVHD or just an irritated, inflamed colon issue.  The lab expert was on vacation but is back this week so once she returns, our gastroenterologist will huddle around the microscope with her and some other experts and decide.  However, in the mean time the corse of treatment for either thing is similar so they've started her on a steroid.  It's a new kind, that only releases in your gut so you don't have all the issues of having it go through your whole body.  We are very glad about that!  Abby on steroids is no fun.

Abby is doing great! She turned a corner Friday in terms of her stomach issues and it has really helped her energy levels.  She isn't sleeping as much, she has been up and around more, smiling more, talking more, eating and drinking more, less nauseous, and doing school for a couple of hours each day.  It's beautiful to see!

She had a visit from a teacher at ASIJ who lives in Durango.  School got out at ASIJ June 10th.  It was really great to see him!  He brought a game the middle schoolers designed and made for Abby in the CAD lab (the new lab/program Mark directed) on the 3D printer.  It is a memory game with photos of all of Abby's teachers as well as the 7th grade class.  He also brought year books (signed by friends and teachers!) for each of our girls.  It was really sweet.  He worked closely with Mark at ASIJ and Mark thinks the world of him so it was wonderful for Mark to spend some time with him as well.

It feels like we have come back up on the other side of this BMT/leukemia monster.  Only God knows what's ahead, but as we look back, we have been through a lot!  I find myself longing to go back and begin where we left off.  I picture us all in our home in Japan, me in the library with the girls coming in to say hi, Mark in the beautiful CAD center doing what he loves... I think I finally have time to connect on a heart level with the reality of the loss of a dream.  For two years, Mark and I have been prepping to take our family over to Japan.  A year ago this week, we sent our shipment off and started getting ready to leave the US.  It's so strange to be where we are today.  I'm not exactly sure how to process it.  I am sure time will help with that.

The rest of the family is thawing out as well I think.  Being apart so much is hard on us all but it seems like Anna and Lily are feeling more things in their own ways.  The shock and intensity is over. The realities have sunk in.

Overall, we could all use prayer as we sort this all out in our hearts.  I am reading the book I talked about in an earlier post, Finding God in the Ruins by Matt Bays.  It's about how God redeems pain.  It's raw and honest and I am really enjoying it.  It's great timing as I try to "make sense" out of all that's happened.  Of course, I won't succeed in make sense of it all but I am trying to let the pain and loss change and deepen my view of God- who He really is and not who I have made Him to be in my desire to find quick, tidy answers.  Anyway... I hope you all have some good summer reads ahead.

To our dear friends at ASIJ- enjoy your summer, you have earned it!  You are the most hard working, talented, dedicated set of teachers and support staff Mark and I have ever seen.  You are also an amazing community.  We are honored and deeply blessed to have been a part of you all.  We miss you tremendously and want you to know that we could not have made it through the past year without you all.

Abby and Mr. Erwin with her yearbook and game