Monday, August 15, 2016

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!

Tuesday, July 26, 2016

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.

Sunday, July 17, 2016

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

Wednesday, July 13, 2016


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.

Saturday, July 02, 2016

Home for the 4th Independence Day for sure!


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!

Wednesday, June 29, 2016

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 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!

Friday, June 17, 2016

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.

Wednesday, June 15, 2016

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

Thursday, June 09, 2016

A View from the Coast...

As grandparents, daily we hear news from Colorado about Abby's progress.  Truthfully, the news is daily (as mentioned in previous posts) up and down.  I remember so well CS Lewis and what he labeled, "the law of undulation."  Here's a bit on that "law:

All of our lives are filled with peaks and valleys. Yet, there is something within all of us that longs, however hopelessly, for a life free from these undulations. There isn't a day that goes by where that longing for everything being "calm,"stress-less," or "settled down" doesn't get articulated in some discourse or conversation with someone who journeys with us in life.  "Things will be so much better when..."  I'm sure if I took the time to tally the use of that phrase during my daily life, I'd be shocked and surprised.  Despite my daily delusion of peace, the reality is (at least for most of us) that we feel like we never reach the "...when."  And because of that, until we feel like we have reached the "then," we live in fear, disappointment and frustration.  Our expectations get the best of us because, despite our best hopes and prayers, the ups and downs continue...the "when" never arrives.  Now, I've heard every cliche on the planet on how to justify or, at least, look at this undulation "law" in a favorable manner.  I get frustrated just thinking about it...but I think our frustration with it comes from two main factors:

1 - We all were created for a life NOT of brokeness and struggle but of peace and love.  The law of undulation may be that one reality of the "fall" that still haunts us the most.  Our soul longs for its true home.  That is one factor that reminds us that the brokenness of our current life experience is only a distortion of the way life was meant to be experienced.  For those of us who follow Jesus, our hearts long for that day when every tear will be wiped clean and every hurt healed.

2 - We get tired of living in the valley.  Oh come on!  Admit it!  Aren't you tired of hearing things like, "it's in the valleys that we grow..." OR "it's only when our faith is tested that it gets stronger."  I've heard it all and sometimes I just want to stop and yell at the top of my lungs, "I'm SO done with the valleys, about a mountain top or two for a least a few days."  

During this journey with Abby, our family has had to depend on each other and Jesus to be able to bring us hope.  In addition, in a new way, we are all struggling with the reality of undulation because it is so "darn" draining.  Even so, we need, you need to be reminded about another reason WHY we experience these unwanted alternations in life. C. S. Lewis sheds light on this question through the advice of the senior devil to his nephew in book, The Screwtape Letters:

"Humans are amphibians—half spirit and half animal. (The Enemy’s determination to produce such a revolting hybrid was one of the things that determined Our Father to withdraw his support from Him.) As spirits they belong to the eternal world, but as animals they inhabit time. This means that while their spirit can be directed to an eternal object, their bodies, passions, and imaginations are in continual change, for to be in time means to change. Their nearest approach to constancy, therefore, is undulation—the repeated return to a level from which they repeatedly fall back, a series of troughs and peaks. If you had watched your patient carefully you would have seen this undulation in every department of his life—his interest in his work, his affection for his friends, his physical appetites, all go up and down. As long as he lives on earth periods of emotional and bodily richness and liveliness will alternate with periods of numbness and poverty. The dryness and dullness through which your patient is now going are not, as you fondly suppose, your workmanship; they are merely a natural phenomenon which will do us no good unless you make a good use of it."

We can easily become confused and discouraged in the valleys of life. And, in the midst of our confusion and discouragement, guess what we are vulnerable to?  MORE discouragement, MORE confusion, MORE unanswered questions, and, by the way, MORE attack. Now, I could go on and on about this...but let me close this way - what can we do in such times? When the clouds of life cast a gray shadow over us, it is especially important to remind ourselves that what we are experiencing is a normal part of life in a fallen world and that in due course the sun will shine again. With this reminder of reality, we can then seek God’s grace to help us in our time of need and also share our burdens with those who travel with us.  We can only look to the LORD and his strength; we can only seek his face always.  Yes, for us as a family, Abby is day to day.  Some days are worthy of rejoicing and finding rest...others, well, they are exhausting.  We know that the presence of the Spirit is with us as we make this "undulating journey" together.  We know that the Lord is fully present with us as each day brings to Abby and us what it does.  All we can say is "make your presence known Jesus and give us the grace to fully embrace the peaks and valleys of this day for, yes, the best is yet to come."  The way I see it is that the more I trust in Jesus in the midst of the undulating reality the more I trust Jesus and feel his love both in the ups and downs.  And believe me, we all need both!

So, here's to Abby (and the Schreibers all) feeling the hand of Jesus no matter what direction she is headed today.  And may her anticipation of a brighter day be that which gives her hope!  

Sunday, June 05, 2016

Day... I don't know +GVHD maybe

So here's the quick update.

Abby has her ups and downs. The last 2 days have been pretty good but the 2 before weren't so good. Since she wasn't doing so great we had to stay down in Denver but since Lily has a cold, she can't visit, therefore, we are still split up a lot this week.  Tiffany and I have taken to sitting out our various porches "together" via FaceTime video and chatting that way but it's not quite the same.

Abby's stomach is still having issues so they are doing to do endoscopy tomorrow to see if part of this could be caused from Graft Vs. Host Disease (GVHD). We should have the results of those test by late this week and then they can decide if she has to get back on some extra medications to get it under control again. Hopefully they can figure it out ASAP so that Abby can start to feel better again.

Other than that things are kind of the same ole same ole. Lots of talking to each other on video chats and saying that we miss each other. We should be able to be together again as a family this week down in Denver and maybe even back in FC for a night this weekend... we'll see.

Thanks again for all of the prayers as we continue to walk out all of this different aspects of this treatment. Please pray that we can all be back together in our house soon and that until then, we will continue to feel God's hand of peace and protection each day.

Thursday, June 02, 2016

Abby at Home!

Were able to go home to Fort Collins for an overnighter! We left Saturday morning and spend the day at home as a family. It was glorious. Abby loved being back in her room. The first thing she did is play with her owls with Anna. It was really sweet to see. We got up Sunday morning and she was feeling well enough to go to church. Even though she has that big blue mask on I could tell she was beaming underneath it because her eyes smiled the whole time. She was able to see friends she hadn't seen in two months and give lots of hugs. She even opted to stay through the sermon which surprised us all… No offense to our pastors. She had a friend over after church and Mark took them fishing. She wasn't able to touch any of the fish but she had a great time and she and her friend each caught one fish each. We have these amazing neighbors who have a fishing show and they always tell us the best place to go. 

I'm down in Denver with Abby and her tummy issues have ramped up again. At this point the C diff is gone so they think it might be some GVHD. That just basically means that Anna cells and her cells aren't playing nice together and it's affecting Abby's G.I. tract.  They say it's good to have some GVHD because it helps fight any returning leukemia cells. If she continues to have issues we will have an endoscopy done and they will sample some tissue and test it to see and then we can go from there on treatment options. 

She also seems to be fighting a bit of a cold so we could use prayers for protection and healing there. 

She's not sleeping that great which is another prayer request.

Other than those challenges, she's got her usual fighting spirit and continues to amaze us. We may be able to go home again this weekend on an overnight pass. That's all the latest news and we so appreciate your prayers.

Friday, May 27, 2016

A night in Fort Collins...

I'm trying to not be too excited but we might get to go home for a night. We got the "all clear" from the clinic as long as things stay steady with Abby. Things have been pretty good today but since she is off of the antibiotic she has had a bit more stomach issues so we are super hopeful, but also holding our breath as we know that it could go either way.

But, if Abby is still doing ok in the morning we will load up the cars and drive up to Fort Collins for a quick overnight trip! Pray that things hold steady and/or get better for Abby's stomach as well as that any fevers stay away too!

Today we actually got out of the apartment and went to the Denver Aquarium.  That was the farthest that Abby has been away from the hospital in over 2 months. We thought it wouldn't be too crowed if we went in the morning... but we thought wrong. It was packed. So, we stayed as far away as we could from all of the little kids and raced through some of the crowded areas. It would have been nice to stay for more than an hour but we'll take what we can get. Even though Abby has her industrial blue filter mask on whenever she goes out, we didn't want to push our luck!

So, pray that all stays well and we can enjoy our short but sweet time in our house. Also that Abby enjoys her time at home (she's a little nervous to go home since she can't stay there).

Have a great Memorial Day weekend!

Tuesday, May 24, 2016

Moving Toward Normal

We had a great weekend here at the apartment with the whole family.  The weather was great and Abby is doing wonderfully!  She continues to have more energy and feel less nauseous.  The C.diff symptoms are still with her, but they are slowly getting better.  Most likely, she will need to continue treatment for the infection after Wednesday's last medicine dose but that's not a surprise.  C.diff is hard to get rid of when you are immunocompromised.

I am down here with Abby for the first part of this week.  We had our Monday clinic appointment and we walked there!  Huge success for Abby.  Walking there meant also walking back and she wanted to get some ingredients to make some dishes she picked from a cookbook Anna and Lily brought her so it was a day of walking.  Even my feet were sore at the end of the day.  The clinic report was great.  Her platelets have officially engrafted and are now in the low end of the normal range.  Her red blood cells are slowly moving towards normal as well, which accounts for her having more energy.  Her white count is also in the normal range.  It can take awhile for her total immunity to be in the safe range but she is well on her way!

We also got the go ahead for a trip to the aquarium on Friday.  Very exciting.  But, the most exciting news of the day was the possibility of going home overnight Saturday and attending church Sunday!  Abby was ecstatic. Well, as ecstatic as a 14 year old can be.  I got to see her huge, crinkly-eyed smile when we heard the news.  Kelly, one of my favorite nurse practitioners, said that if she is still doing so great at Thursday's appointment then we can do an overnight!

Today we are getting school done and then going to the Angry Birds movie.  I'm ready for some silly entertainment.

Thursday, May 19, 2016

Some pictures

Abby made slime yesterday for science.

We got Abby outside yesterday and look what greeted us.

Great counts! Great smile!
Our solution to blowing bubbles in a mask.
Birthday breakfast- thanks Nonnie!
The hot tub at the apartment has bubbles too!

Monday, May 16, 2016

Rockin' the Recovery!

Abby and I went to the clinic for her Monday appointment today. On Mondays they draw labs, check her medicine blood levels, her blood counts, and just see how she is doing overall.

Today she was doing great. Her ANC is actually 4736! Her red blood cells are up in the higher than they've been for ever, and her platelets are officially engrafted too. It's only day 33 and she is recovering in record time so far.

They also had her disease results from last weeks bone marrow test, right now she still is disease/cancer free with an MRD of zero. The preliminary blood chimerism test is also great, all of Anna's cells so far. By Thursday we should have the bone marrow chimerism test results and we are hoping and praying to see 95% of the cells be Anna's cells. Basically she is rocking her recovery so far.

In the clinic she decided to play a prank on her Nana and put one of the stuffed animal owls (that is on loan from her Nana) in a biohazard and then brought it back to her Nana in the apartment. She thought it was pretty funny. When she finally got settled back in her room she said, "I think I'm finally starting to feel like myself again!" The picture below does show that her silly side is back in force!
Have a great day!

Saturday, May 14, 2016

Apartment Life, Day 28 Test, and C-diff.

The task sounds simple. Come live in Denver, in a posh apartment with your 14 year old daughter and just take care of her. She mostly wants to just sit in her bed and watch Chopped, or River Monsters episodes so you would think it would be fairly easy. I thought I might even get some work done while I'm here. Abby watches movies, I work and the girls get some quality time with Tiffany in Fort Collins... 

But things don't always match up with my delusions of future realities.

The truth is that living 5 minutes from the hospital is kind of like being at the hospital but without all of the help. We get to be a nurse, cook and housekeeper and more. I'm not complaining (much) because I do get to get a full 6 hours of sleep without any beeping or people coming into the room to check on me. But to have those full 6 hours, I also get to clean, give meds, and be a short order cook. I don't think I'll be changing to any of those careers anytime soon.

To top off the normal workload around here, Abby now has C-diff again ;(  So, I'm trying to keep her hydrated and out of the hospital. If she can drink enough, keep food down, and keep the fevers away, we can stay here. She is a trooper and really does take this all seriously. She drinks when I tell her to, even is she isn't feeling well. Pray that her nausea will go away soon though, that would make things much easier.

On the trooper note, Abby really is a pretty amazing kid. I know I'm biased, but to me she really does embody the verse in Philippians, "Do all things without complaining or arguing". Sure she has her moments, but it is relatively easy to turn her around. I listen to her pain with a sympathetic ear, and then call her back into the trenches... and she does it with that big Abby smile that we all know. It's crazy to me. I'm struggling just being at the apartment alone for just a few day and I don't even have to take all of the meds that I give her!  So, she's a trooper, point made.

Oh ya, she also had a minor surgery/procedure on Thursday too.  It seems so weird that these have become some normal that I forget to post about them.

Thursday was her day 28 bone marrow test. She's still pretty sore from it so I don't know what all they took to test but it was not the norm. They will be checking for 3 things. Chimerism, how full the marrow is as it starts to repopulate, and if they detect any cancer still (the MRD test). I think we'll have some of the results back late next week or so.

Oh ya, and Lily and Anna are fighting colds (Tiffany maybe too) so they can't visit until they are symptom free. I asked the BMT nurses if they could come and visit just in case... they said no. I understand, we want to keep Abby healthy too so we will keep on keeping on! Probably don't wat to expose the girls to C-diff anyway. Hopefully that little pesky gut-bug will go away and stay away too. Please pray for that.

Here's some pics of life in the apartment.

Tuesday, May 10, 2016

What to do in Denver

Well, a lot of people have asked me, "What do you do in Denver now that you are out of the hospital?"... well, ok, just one person asked me but I though it was a good question so here's the answer.

We clean, we give meds, we make sure Abby is drinking enough water and cook her meals... and try to tiptoe quietly (we had a visit from our downstairs neighbors) sorry ladies, I forgot that the wood floors might make it kind of loud below ;)

Here's a time-lapse of our cleaning the main room this afternoon. I knew having the girls around would be helpful! And yes, I did make Lily help clean even though it was her birthday. Double digits the big Ten-O. Happy birthday Lily, and thanks for the help!

Abby is doing pretty good, she had that allergic reaction in the clinic yesterday but Benadryl is a pretty magical substance and she can now move her mouth again. That was weird reaction. She's never had any other reactions like this before, but since the transplant she's had 2 reactions. I need to ask if for some reason Anna might be allergic to these drugs too since it's now kind of her immunity living inside of Abby. Crazy huh?!

Tonights agenda includes a cake (provided by Brent's Place), present opening, and lots of meds for Abby. Just a typical birthday celebration right? Well, it's typical for us anyway and we all are together for Lily's birthday. That, right there, is celebration enough!

Monday, May 09, 2016

Week One in the New Digs

So I'm sitting in an infusion room at the clinic with Abby while she sleeps off an allergic reaction to her new weekly IV antibiotic.  She was almost finished with the hour-long infusion when her lips froze up and started feeling numb.  I grabbed the first person I could, which happened to be our BMT doctor who was walking by.  We got her pump turned off and IV Benadryl administered and after some shaking chills in addition to the mouth thing she was out.  That was an hour ago.  Poor kid.  She was mid-bite into a tortilla chip with salsa when it happened.  I thought she had hit a jalapeno and offered her water.  She couldn't answer because her mouth had frozen.  It was pretty nerve-wracking. She'll wake up soon and we'll head back to the new digs, a two-bedroom apartment behind the hospital.  We spent the weekend there as a family and it was bitter-sweet.  Sweet to be together, to have Abby out of the hopsital, to have Mother's Day together.  Bitter because Anna and Lily could go in the big hot tub and Abby can't, we have cleaning and meds and IV fluids daily that take a lot of time and energy, and we had to say goodbye to my folks Friday night as well as each other at the end of the weekend.   That's the quick update.  We are so very glad Abby is out of the hospital and doing so well.

Thursday, May 05, 2016

Breaking out!

All of the daily encouragements are gone, it's sunny outside and Abby is doing well enough to get out of here!

The doctors came around this morning and Abby was her smiley and happy self! She did everything they said she had to do yesterday, drank the prescribed amount of fluids, did her walks, took her meds and kept her nausea under control.

I know that she doesn't' understand sociology or group dynamics but she may have a future leadership role coming in her future. Today on our required walk around the floor, she passed by her group of doctors that were visiting another patient, caught there eyes, waved and said, "hello everyone!" with a smile on her face. I don't think it was intentional, that's just Abby. But, at the same time, that was a brilliant moment that I really think solidified their decision to release her today. 

Keep on smiling kid, you are amazing!

Off to go pack up, and take a lot of load out to the car. It's amazing how much stuff can be collected in a small room over the course of 4 weeks.

Whoooooo hooooo!

Wednesday, May 04, 2016

Still a chance...

I just got to talk to the team of docs in the hall about Abby. There is still a chance that she could go home (or to the apartment) tomorrow and I'm going to do all that I can to help move Abby in that direction. Oh I hope she can find the strength to persevere this afternoon. She is a trooper but the news that she might not be able to get out yesterday really took the wind out of her sails and she has been a bit down whenever they talk about it. I think she is starting to wonder if she can trust what the docs are telling her about her release date.

Could you her help by praying these 3 things:
  • That Abby's nausea will go away and/or be able to be managed by medications.
  • That Abby will choose to (and feel good enough to) drink more fluids?
  • And specifically that Dr. Craddock would feel comfortable with Abby's progress tomorrow and discharge her.
I am confident that the Drs. will make the best medical decisions possible for Abby.  Right now it is just a battle in my mind to submit to this authority in our life.  The docs are in charge and I need to honor them in that role.  We'll see what tomorrow brings.

So, as is often true, we are going to take it one day at a time!

Tuesday, May 03, 2016

Independence Day? Not quite.

Hey all,

Update: 12:30pm
Things are a bit up-in-the-air but overall pretty good.  The biggest update is that Abby is having some stomach pain and a low-grade fever right now so hopefully it is nothing and will pass. If not we may have to stay longer than we were anticipating. If she spikes a fever, then of course we would have to stay in but if not we might be able to get out Thursday.

Original Post:
Abby's ANC is at 700 today, 610 yesterday, 410 the day before and 500+ 4 days ago.  So, she is on her 2nd consecutive day of +500 meaning that she may be able to get out tomorrow! We are sure praying for that to be the case.  This tummy pain could push it back to Thursday or even next week but hopefully they'll let her go tomorrow. We'll see.

Abby is ready to be out. It's officially Day +20 today but Abby's been in Denver for a long time, since the beginning of April I believe, I think she started radiation on the 5th and she is ready for a full night of sleep without beeping alarms, blood pressure cuffs, and pulseOx noises.

Yesterday we got to start our "Independence Day" training. Basically this is the day that we get to give all of her meds, do her central line care, and show the hospital that we are capable of fulling taking care of her while we are out of the apartment.

Tiffany and I started yesterday with a couple of cap changes on her double lumen Broviac line.  Then Tiffany got to call the nurse to tell her when Abby needed meds, and set an alarm to get up at 2am and 5am to give the meds to Abby. Tiffany is pretty tired today, the night nurse is a great nurse but is also really loud. We actually joke that it's like having a truck in your room during the night. The nurse was in a lot last night because Abby had to get platelets and red blood cells which is a lot to do in the middle of the night. Hopefully Tiffany can get a nap today.

Praying that the fever stays away, the stomach pain goes away and that they let us out soon.

Saturday, April 30, 2016

ANC is.......

I woke up today to the printout of Abby's counts with a big 520 for her ANC highlighted in yellow by our night nurse.  So exciting.  Right now, Mark is making his Saturday morning pancakes at home and Abby and I are talking about how next Saturday we should all be in the apartment eating pancakes together for the first time in a month!  She is so ready to get out of here.  They do a great job on the BMT floor but we are ready for no IV beeps, no vitals every four hours, and uninterrupted sleep, not to mention a change in scenery and food choices.  I will miss the ladies who come through twice a day and clean the room.  We will be doing that once a day at the apartment, which will most likely take us an hour each day.

But we are so thankful for the hospital and Brent's Place because without them we would be living in a hotel room for the next 2 months.  We lived in two small Japanese hotel rooms for two weeks last August and we are pretty much over the excitement of hotels.  Anna and Lily are excited to do city life again.  Abby is excited to get out of the hospital but a little apprehensive about living with loud sisters again (she said to me last night).  It is pretty quiet here in the hospital.  An introvert like herself could get used to the solitude.... so it will be a bit of an adjustment there.

We are thinking of trying out a half and half schedule for now.  Monday-Wednesday I will be with Anna and Lily in Ft. Collins, doing school, having playdates (theirs and mine), getting errands done, stuff like that.  Mark will be in Denver with Abby working and helping take care of Abby and get her to her appointments.  Oh yeah, and cleaning the apartment daily!  Then either Wednesday afternoon or Thursday morning the littles and I will head to Denver and we'll be a family in the apartment until Sunday.  That's the plan.  It will probably all change in a week like things tend to do in our life since we told God we were up for whatever he had for us.

It isn't the change itself that I struggle with but the lack of control it brings.  Change in the framework of what you have learned to expect is one thing.  Change that comes out of nowhere (seemingly) and throws your world into chaos can be hard to take, day after day and week after week.  But God keeps on reminding me he is with us in this and cares deeply.  I don't know where I'd be in all of this without my relationship with him.

Yesterday, at home, I looked out at the bird feeder and saw a bird I have been trying to coax to our yard for years with no success.  I have had the food in our feeder that this bird supposedly prefers for 5 years now.  This year, I sent Mark to the bird store when we got back from Japan and he brought home something different.  I wasn't sure I liked the change.  I really want the bird to come to our yard and the food I get is supposed to do that, all the bird people say so.  Yesterday, the very bird I've been trying to attract showed up!  A beautiful goldfinch sat on the feeder, eating happily.  The change was good, even needed.  It wasn't what I thought was needed.  But it brought something that made me smile and reminded me that God is bigger and he cares a great deal, more than I can comprehend.  He cares about small birds, he cares about Abby, he cares about the Schreibers, he cares about all of us. Crazy.

Friday, April 29, 2016

Day +16 and looking toward leaving next week

I just talked to the Docs this morning and it looks like she is on schedule to get out of the hospital during the middle of next week!  ANC at 440 today and they expect it to double for a few more days. Once she is at 500 for 3 days in a row she can leave. So, Sat, Sun, Mon should be the 3 days and then we'll have our "independence day" the day that Tiffany and I get to give her all of her meds (it's a test to make sure we know what we are doing before we leave).

Once we pass our test, get trained on how to give all of these pills and when to give them, we'll get to take the 10 minute drive to the new apartment. Woot woot!

They will also be doing a chimerism test which will start to help them determine who's cells are coming back. Obviously we hope that these cells are Anna's and not Abby's. Chimaera is actually a greek mythological creature with 2 (or more) heads. In a medical sense, the condition is when you have 2 types of cells in your body. Oh those doctors are so clever in their naming! But we would rather have a successful takeover of Abby's cells by Anna's stem cells than a 2-headed creature let loose in Abby's bloodstream. This blood test will be an early indicator of that condition and then a day-28 bone marrow test will be the better test to see if Anna's cells have outcompeted Abby's.

Finally, Abby's IV pole is looking pretty good lately. Only 2 pumps on it now, and then basic IV fluids with an occasional antibiotic dose. She's been taking lots of oral meds, some of which make her very nauseous, but overall she has been having couple blocks of the day where she feels good enough to eat. Hopefully we'll figure out a way to kick the nausea soon and let her have full nights rest.

Hopefully it will stop snowing and be sunny by the time we leave. Gotta love the Colorado Spring!

Wednesday, April 27, 2016

The Good, the Bad, and the Ug-xhausted

I think the hospital is starting to catch up with us. We're all pretty exhausted right now. Life still goes on even when you don't sleep well every third night. Yet, there has been a lot of good lately to report, and, at the same time, a lot hard.  But, as you all know it just keeps going. So, we keep on going.

I know that people are wondering how Abby and the family is doing so let me give you the quick update.  The Good, The Bad, and The Ugly or in our case, The Exhausted.

The Good-
Well, let's start by saying that those baby monocytes keep marching along and are continuing to turn into lymphocytes. Abby was at 20 ANC for 2 days, then her ANC was 40, 50, then 90 and today she's at 130! As Tiffany said, Abby is also now off of the pain pump and is moving over to mostly oral medication.  Her mouth sores are almost gone and probably her throat/stomach/gut is the same since the pain has subsided. The eating is going ok. Still have to offer her food over and over again to and remind her to try some food. If she doesn't eat enough then they'll move her over to an NG tube (basically a feeding tube through her nose) to feed her. I'm hopeful that she will eat enough to fully sustain her soon, get off the IV, and be ready to leave this place once her ANC is at 500 for three days. We had the discharge meeting yesterday and they are hopeful that she'll hit those numbers next week. So, I guess it really could be out of the hospital soon! Wow.

The Bad- (or mixed emotions really)
Even when Abby is released we still have to stay close to the hospital until Day +100 to +120... That means she can't leave Denver/can't come home until late July/early August. So, we will be moving again... kinda. We now have a 2-bedroom apartment near the hospital in Denver.  It's almost as fast to walk to the hospital as it will be to drive. I wish our house was just a bit closer to Childrens Hospital so we could all be a family together again. But the reality is that we won't all fit very well in 600 sq/ft and to keep Anna and Lily in Denver all summer would be tough for them. They'd basically miss their whole summer playing in the yard and seeing their friends. So, we'll have to figure out some rotation of time together and time apart.

In the midst of all of this, our stuff came on back to our Fort Collins house on Saturday. We haven't opened up all of the boxes yet. As you can imagine, it's kinda like opening up a box of memories. It's nice to have more choices of clothes to wear and the girls were excited to get their bikes back. Understandably thought, they were also a bit sad. Lily said she missed biking as a family in Japan. Anna had a few hard days too and I think some of it can be attributed to the arrival of this stuff. They've had a lot of change.

The Exhausting
With all of that said, I think that not being a family unit continues to be the most exhausting part of this journey. We have always found strength together as a family.  In Japan we biked to school together, played games together, had family nights, talked over spiritual and emotional needs, walked, shopped and sometimes cried together. But now, we are apart. Anna and Lily can't visit Abby in the hospital because it is still "respiratory season" and they are under 13. I think we all are starting to feel the effects of not being that tight family that we were. I had a little Daddy Daughter Movie Night on Monday night since I was home by myself with Anna and Lily. At the same time, Tiffany and Abby had a little movie night of their own in the hospital. And though we may be doing the same things, with 75 miles between us it just doesn't feel the same.

Last night after our movie I crawled into bed with Lily to tuck her in and pray with her and she asked, "Do you think we'll ever be able to go back to Japan?" I told her that she is still young and has lots of opportunities to go back to Japan. But then she said, "But will we ever all go back to live there as a family?". I had to pause. Finally with tears my eyes, I said, "I don't think so honey, I don't think so." And her final question, as if she was just trying to fully wrap her head around this all... Daddy, did they give our house away?" ....."Yes, sweetie. It's not our house anymore."

We all have had, or will have moments like these in our lives. Times like Lily expressed when you just want life to go back to the way it was. Hard times, sad times that you'd rather avoid. Ours just happen to be packed into this year. Yet, we will be a family together again soon, at least part-time, and then full-time. And we will be tighter as a family because of our times together, and because of this time a part. You only know what you miss when it's gone.

Let me leave you with this song from Passenger.  I know he's singing these words from a different heart, but to me, they still ring true to where we are as a family. The truth is that you only see rainbows when it rains.

Well you only need the light when it's burning low
Only miss the sun when it starts to snow
Only know you love her when you let her go

Only know you've been high when you're feeling low
Only hate the road when you're missing home
Only know you love her when you let her go
And you let her go

Here's a cover of the song by Jasmine Thompson that I like. I think she did this when she was 12 or 13 year old. Props to her and all Middle School kids that have dreams of they can do in this world.

Tuesday, April 26, 2016

Good News!

So it is looking like Abby will be discharged sometime next week.  We are blown away!   Her monocytes are continuing to increase.  Her ANC is 90 today.  Once it reaches 500 and stays there or goes higher for 3 consecutive days, she is able to leave the hospital.  In preparation for that we are working on getting her meds to oral, instead of IV.  That is a slow process as some of them don't sit well in her stomach.  On the stomach note, she also has to be eating.  That is slowly happening.  After  2 weeks of mucositis, radiation, and chemo her stomach is on strike I think.  She has been getting IV nutrition for the past 2 weeks so it's a matter of stimulating her appetite, having her try some things even though they don't taste like much right now, and then having her stomach keep it down.  She is being weened off of her pain meds as well.  If all of that can come together and she doesn't get any infections she will be out of here!  We will be behind the hospital in the apartment since we will be checking in a few times a week at the clinic.  At around day 30 she will have another bone marrow test to see if the new cells are Anna's or hers.  Obviously, we hope they are all Anna's.  If they aren't, they have steps they can take to encourage Anna's cells to take over and Abby's to give in.  Mark and Abby and I will attend a discharge class Wednesday to learn all the "rules" of caring for Abby once she leaves the hyper-clean hospital environment.  We've taken the class to learn how to take care of her central line so we can check that off the list.  I think there is also a meeting with the pharmacy to go over all the meds she will be on.  Oh, and we have a day in the hospital where we have to be in charge of all of Abby's cares.  Mouth, nose, meds, bath, central line.... to make sure we are able to care for her.  It's funny, I was thinking they should have done that with us when she was born before we got to take her home from the hospital!  Of course, if that were true none of us would have been able to go home with our kids!

Anna continues to get back to normal- at least physically anyway.  The life of an adolescent in the throws of cancer is nothing close to normal.   Lily is doing well, lots of energy and keeping us all laughing (or tearing our hair out, which for some of us threatens what little hair we have....not naming any names).  Anna and Lily are home doing school right now.  Mark is getting some work done at a coffee shop close by.  My folks took a much needed break for a couple days and are staying in the apartment here in Denver re-cooping.  Abby is playing with some Lego Elves kits she got and is feeling really well today.

As always, we appreciate your prayers and support of us as we walk it out.  It seems like we have come up the down side of the BMT and are now on a solid road to healthy.  It feels good.

Friday, April 22, 2016

Friday's Update...from the Front Lines, day +9

Hi all.  This is Tiffany.  I am sitting with Abby at the hospital right now and for the first time since radiation started, I feel like there is a little breathing room in this whole experience.  I think we all feel it, although we are all very, very tired.  It feels like there is some time to process all that has gone on from radiation to now.  It feels like there is room to go get a cup of coffee from the kitchen and stand at the window and drink it and look at the view from the 7th floor here at Children's.  Abby is doing better.  She is still hooked up to lots of things, pain pump included.  However, she isn't needing all 3 anti-nausea medicines round the clock.  She hasn't needed her pain meds to be dosed-up which is good.  She is talking more, engaging more with those around her.  Her mouth sores are not getting any worse, neither are her GI sores we believe.  Today, for the first time, we saw  some monocytes in her blood!  Huge deal.  That means Anna's stem cells have found their home and are beginning to produce some baby-blood cells (monocytes).  We will wait through the weekend to see if it's really beginning.  It's day +9.  The BMT manual (yes, they gave us a manual) says engraftment can start as early as 7 days.  It's still a slow climb out of no immunity but we are starting up the other side and that is wonderful!  Anna was starting to worry that her cells weren't going to get to work, or that they would cause more problems.  I can't wait for Mark to tell her the news!

We also have an apartment down here now.  Another huge deal to celebrate!  Brent's Place is managing 4 new apartments that the hospital rented.  Since Brent's Place is full full full we get to stay in one of the new apartments but still use all of Brent's Place resources.  So... we get to have meals brought to us Monday, Wednesday and Friday at the hospital if we want.  We get to go on outings with Anna and Lily once a month in Denver.  A music therapist comes on Thursdays to Brent's Place and can do lessons on the piano or guitar for the girls, Abby too when she is out of the hospital.  The apartment has a swimming pool!  Abby won't be able to use it but Anna and Lily will.  We are going to try to play that down and so are Anna and Lily because we all know how much Abby loves the water!  At least our place doesn't overlook the pool.  So, we will have a place to crash down here for now if needed and when Abby gets out we will have a home away from home that puts us right next to the hospital for all those appointments until day +100 and keeps us close in case something urgent comes up.

Prayers needed for Abby to start eating a bit more so that she won't need the feeding tube.  Also, continue to pray that the monocytes are being made and the whole blood factory is up and running soon!  No infections-so far so good.

We appreciate all your care of us!

Wednesday, April 20, 2016

My favorite pic of Abby and...

I love this pic of Abby!  For obvious reasons!  This is the girl who smiles, who loves simple things...who gets excited about handling spiders and collecting owls...a girl who is just as much at home with dragon television shows/movies as she is with My Little Ponies.  Abby has a delightful innocence to her spirit, an inquisitive heart and focused mind.  What been amazing to me (this is Robin, the "Papa" writing) is to hear of the steadfastness and incredible mature manner that Abby is displaying for all the hospital staff as well as our family/friends to see.  I don't get a chance to see her often because I'm on "home duty" with her sisters, Lily and Anna.  Even so, I hear the stories as well as see for myself when I get a quick Facetime glimpse of Abby "in battle" mode.  I remember when she was three and I wrote often in her blog about the amazement and awe that we, her family, felt as we watched a young girl fight the cancer demon.  Now, the story is the same...from the stories I hear from her mom, dad and "Nana" (Vicky), Abby is focused, heroic, and proving once again that she is able to handle and work through whatever this Leukemia treatment is dishing out.  For those of us who look for inspiring moments and people around us to emulate and from which to gain strength and perspective in our lives, I have no further to look than my eldest granddaughter.  She has more bravery than I would have in the same situation.  She rarely suffers publically...she bears all things at the same time that she joins us in believing all the promises of God for His overwhelming presence in the darkest of our despair.  

As I mentioned above, I'm not on the hospital front lines.  Even so, I daily get an earful of information from Mark, Tiffany and Vicky.  As each of them make their way to and from the hospital for their 36-hour shifts, each comes home not just exhausted but completely amazed...amazed at how this young lady is navigating trying days.  I think of Abby and then I think of the shallowness of much of our culture, the people who are held up as "role models," from Pop Stars who are doted over to athletes who revel in the public's adulation.  It would be interesting to get everyone in the world to take a trip through the Seventh Floor at Children's Hospital in Aurora, Colorado.  THERE is the place where real heroics are being experienced day in and day out.  There is the place where people should be standing up and taking notice of children of all ages facing down not critics of their superficial music or complainers of the unfairness of a sport in which millions of dollars are, these children display the real heroics.  They withstand the suffering that few adults I know would handle with grace and acceptance.  I watch Abby and hear the stories day by is the same in almost every room of the seventh floor...heroic persistence, focused hope, and enduring faith.  

This pic of Abby says what I can't say in words...a smile and a cuddle with another one of the seemingly millions of stuffed animals (especially owls) that adorn her room.  This is the girl who is running the race and keeping the faith.  We are in awe...we are in prayer...we will be the first to cheer as she crosses the finish line into health.  More to come in the coming days!