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!  

Monday, April 18, 2016

Picture this.

They say a picture is worth a thousand words. So I'm gonna give you lots of words with these Pics. (I'm also posting from the bedside on my phone) 

So, here is my picture post for the day. 

The IV pole. 


Sunday, April 17, 2016

It's the first Sunday after the Bone Marrow Transplant, aka Day +4 Update

Well, this is the "Papa," aka Robin Dugall.  Mark has added me to the contributors list for obvious reasons: sometimes the guy is beat!  He wants to do a blog post, but his fingers and brain are on a small but highly needed vacation!  Seriously, I'm blessed and honored to be able to share with our extended family of friends.  I simply pray that I can do the summaries justice.

Today is Day +4 - Abby is in the hospital continuing the fight.  The post-transplant days are filled with buzzers, beeps, nurses doing vitals, doctors performing tests and consults, and a whole host of medical realities.  I think the last number I heard was six - six different IV lines are heading into Abby's body carrying various drugs - for pain (four meds for pain, specifically), for nausea, for fluids, etc.  At this stage in Abby's journey post-transplant, the highest concerns have to do with Graft vs. Host disease and its physical implications.  As of today, Abby is dealing MORE with the continuing side effects of what happened with she received chemotherapy and radiation treatments PRIOR to the transplant.  Most problematic is the condition called, mucositis.  Here's a definition of the condition:

Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.

As you can imagine, the sores (that at this point are occurring in Abby's mouth and in her lower GI tract, are painful.  This "window" of potentiality in terms of this side effect will go on for at least the rest of this week.  The biggest issue is that she has no "fighters" within her blood.  After the transplant, her body is attempting to accept the new stem cells.  It is not yet at the point where it is producing the necessary white blood cells and antibodies that can do "battle" against mucositis or other "invasions."  She still needs to be in a very protective environment.  NOBODY can expose her in any way to something even as minor as a common cold.  So, essentially, she is on medical lockdown.

For me, I watch my wife (the Nana) Vicky and Mark and Tiffany making their way to Denver (a roughly 65 mile trip) daily in rotation.  Most days there is ONE person needed at the hospital to do mouth sore care, help Abby try to get a small walk in (if possible), bathe, and attempt to get her to eat and drink (if she can stomach anything at this point).  One of them spends the night at the hospital and then gets "relieved" after a two-day, one-night rotation.  As you can imagine, there is much to be aware of when having the on duty hospital care time.  I watch all three of them in the rotation and I'm amazed and blessed.  They can't sleep at the hospital amidst the beeping, buzzing and medical team vital checks.  Even so, there are small celebrations that we have daily.  For example, we cheered here in Ft. Collins last night when Tiffany (who was on duty) shared with us that Abby had a bite of BBQ pork rib.  Vicky was with her earlier and was celebrating her eating a small amount of mashed potatoes.  Another big concern at this stage is her calorie and fluid intake.  So we keep praying that she can eat and drink even small amounts so that the medical team does not have to resort to other means of keeping her nutrition "up" (primarily, feeding tubes).  At this point, remember, she has NO immune system.  The prayer is that by day +28 she will produce three consecutive days of ANC levels (white blood cell counts) over 500 (normally that number is in the 1000's).  But let me tell you what I hear, "Abby is such a trooper, she is strong, focused and incredibly brave to keep facing these days with confidence."  Not only that but Mark and I estimated that at any given moment 100's of people from around the globe are praying for her.  We have people praying in Japan, Romania, Poland, Hungary, the UK...Canada, Mexico, South Africa, New Zealand, all over the USA.  It is amazing and such an encouragement.  As I mentioned in (which is MY blog) we have as a family such HUGE THANKFILLED HEARTS for the outpouring of love, incredible gifts, and more support than we can dream of!

That's it for now...more to come as the days go by!

Schreiber World Update.

It's snowing here in Colorado. Nothing like waking up to 6 inches in the middle of April. I'll drive down through it today to tag out Tiffany and be with Abby tonight.

Lots going on of course right now. Abby is still in a lot of pain. Wakes up pretty sore and then has to catch up by pressing the pain button every 10 minutes. They took her off of the pump for an hour yesterday afternoon to give her antibiotics and that was really rough, lots of pain. So, they gave her a large dose of Dilaudid and that knocked her out for a bit. Today when they unhook her they will try to give her a large dose before they unhook to help control the pain.

Basically it's just a waiting game right now. Anna's stem cells are finding their way to Abby's bone marrow and grafting in. At the same time Abby's blood continues to die off from the effects of last weeks chemo. She has no immunity right now so she is on an antiviral, an anti-fungal, and antibiotics. She does anti-everything mouth care 3 times a day and anti-fungal nose spray (that burns) 2 or 3 times a day too at 4 squirts each side. Not her favorite thing. She tries to eat during the day but it is really painful so instead they are feeding her through her IV for now. Basically the routine is: mouth care, 3 walks, 1 bath, and fill the rest of the time with distraction via Amazon Prime, Netflix or something else on the Roku (yes, I was proud that I got that to work on the hospital network).

On the home front Anna is doing better day by day. Still pretty sore and tired. They did take a lot of marrow, gave her back her own unit of blood and still left her short by about 1/3 of her blood volume. She'll be taking iron pills for a month or 2 and drinking lots of fluids.

Lily is doing ok too. She could really use some attention as the focus has been off of her for a long time. She also was pretty much quarantined to her room for the 8 days before transplant since she caught a cold on the night before Abby's radiation. At least we kept Anna well enough to give the marrow -that was a stressful week for me at home and I'm glad it's over.

Life continues to roll on along. We have our shipment from Japan coming in soon. They tried to deliver it the week before radiation but I had to ask them to hold off since we really couldn't have a bunch of boxes that have been on a boat, in the damp, in the dark... delivered to our house. Hopefully I can reschedule that for next week. Do want some more clothes options but I'm not really looking forward to the memories that get delivered with those boxes. But the girls are excited about their bikes and other items that they had to leave in Japan. It's weird to look back at that day that we left with 11 suitcases, closed the door to a nice clean house, and then never came back. So surreal.

More life keeps rolling as well. I've been trying to get some traction for next year with my Maker Education Consulting practice. It's been going ok and I've had a lot of calls with schools. Unfortunately they all tend to get scheduled during some appointment with Abby. I had a great call with a school during Abby's Broviac surgery. And another great call after Abby's first radiation therapy. It's been exciting to get a new business going (but also tempered by Abby's hard times) Hopefully it will be a good part-time venture for now. In other life news, I punted on the taxes last week and filed an extension. Making money in Yen for part of the year in Japan didn't really fit very well into any category of TurboTax;)

Enjoy your Spring day whether it is snowing, sunny or cloudy... it's still Spring!