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

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, Lord...how 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!  

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.

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.

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!

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.

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!

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!