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.