+2

Quick update.  Abby's still medicated pretty heavily.  Threw up a bit today.  Anna is sore still but is a real trooper.  Tiffany and I will get one more good night sleep and then I'll drive down tomorrow (most likely through an April snow storm) and stay a night or 2 with Abby.

We subscribed to the Smithsonian channel on Roku (which I go to work on the hospital network) so Abby has some new show to watch. We'll see if she remembers any of these shows but for not at least it gives her something to do as she rides out the storm.

I'll probably go to bed at 8pm (Eastern time) well, maybe I make it to 9pm... we'll see.

Have a great night.  We'll let you know if you anything get worse but for now we are just walking it out day by day.

Day +1 Done

We're exhausted and it's only day 1.  Actually they call it Day +1, transplant day being day zero... only 99 more to go to get to Day +100.  That seems a bit discouraging so I'll just look at this week.

Abby's having a rough this afternoon.  Threw up and that really hurt all of her sores in her gut. She is on the PCN (Pain pump) so we were helping her be ok with pressing the button when things hurt. She can be such a trooper that sometimes she just grunts through it, but she won't be grunting through this. But that is her personality. She just does what has to be done. The day after her bone marrow test in Japan, she biked to school.  I have a video of her biking up this little hill over the 6-lane and only 16 hours earlier she was under getting the bone marrow test.  When she was in 6th grade she did cross country. After her first meet, we took her to the doctor and they said she had a sinus infection and ear ache. She had run her race the day before. She is tougher and more tenacious than I ever could wish to be. Not because she likes to be, but because that's just her life.

So, these next few weeks will be another example of this tenacity. No one wants her to have to hunker down but she will. And, with the help of the pain pump, hopefully she will make it through a bit more comfortably. Either way, it's gonna be a rough go.

Still more effects of chemo and radiation to come.  We'll probably see the chemo effect next weekend through the middle of next week.

But, the glimmer of hope in this painful time is that she has Anna's cells now.  The rescue is underway. As Abby's cells continue to die off, Annas will get stronger and then finally the transfer (the coup d'é·tat really) will be complete.

Anna's home. She was a rock star!  She's sore but in bed. Tiffany and I will be hitting the pillow soon too, it was a tiring night in the hospital for both of us. Vicky is taking care of Abby tonight and they are staying on top of the pain and nausea.

Thanks for all of the comments and prayers. Abby and Anna both loved to hear from all of you all over this globe!  Thanks again for everything!

Anna update

Today, by the powers and authority given to me as the Dad, I hearby declare the blog name today will be called 'Anna Update' in honor of her bravery and gift.

Today Anna did the heavy lifting. 

She's out of surgery now and recovering form anesthesia. She was in there for about 3 hours. They has to take a bit more than the max that she can give because her stem cells weren't as densely packed as is typical. They ended up taking it from 5 sites. 2 in the back hip left side one in the back right and 1 from each side on both front hips. She's gonna be sore for a bit. 

The lab is spinning down the marrow and getting the stem cell separated. Right now, based on calculations, they are still below the amount they would like to have for transplant. But they couldn't take any more volume so it is what it is right now.  If they needed they could always try to harvest more via peripheral blood but we'll talk about that with the doctor later once we know the final stem cell volume. 

She's a trooper. We're all tired and are just trying to roll with it. 

Abby's pains mostly under control for now, she's on a pain pump. The thing that really hurts is when she hiccups which unfortunately happens a lot right now. 

Later today she'll get an IV drip of Anna's Stem Cells where they will make a new home in Abby. If you test Abby's blood in a year, she'll have Anna's DNA. But if you cheek swab her, she'll still be Abby. I told her that she may have a future as a criminal mastermind. But, she didn't think  that would be the best use of this gift. I agree as well. Let's just get her better. 

More later. Thanks for all the comments!

Reaching for 50 Percent

We have a secret language known only to a select few here in Schreiber World.

More than 15 years ago, when we were in the young married crowd, we led a small group at a our church. I don't know if I'd actually say we led it, we just made room for life to happen with a bunch of awesome people. We all formed a bit of an extended family with each other. And, when you hang out that much, you start to get a lot of little inside jokes and common memories too.  Anyone in that group would know about melted chocolate bunnies, impromptu grape stomping, motorized bikes, and "who is Bobby", anyway?

One of these insider-only memories arrived in a box at our house this winter, and has been part of our household language once again.  A friend from that small group long ago sent it back to us from way up North. It's this mug.  Reaching for 50%.  We don't know where we got it. We don't even know why someone would print a mug like this. Why just 50%? Wouldn't you want to reach for 100 or maybe even 110 percent? But no, it's 50. And, right now, that's perfect representation of life here in the Schreiber World.

Tiffany and refer to this mug, or at least this idea, a couple times a week. It can often feel like 50 percent of our normal energy, spread across our new life, would be too little to live on. Interacting with the kids, trying to really love on Anna and Lily at home -50 percent. Focusing on our marriage, starting a new consulting business, driving to Denver -50 percent. Taking care of ourselves, working, shopping, laundry... all at 50 percent.

But here's the cool part. We somehow still have 110 percent provided for in our life. They say it takes a village to raise a child, and our case, I think it has taken a global village!

You all have poured so much into our family to fill the gap. I don't spend my energy cooking much because of all the meals people have provided, so instead I play with the kids. An organization called Focus on the Fight is cleaning our house twice a month, so Tiffany and I can have some time more to talk instead of clean. We've received Starbucks and Amazon cards so that we can download videos for Abby or get her favorite cheese danish. We have letters, crafts, song recommendations, prayers of support, and notes of encouragement all in our various inboxes. We have the space now to rest when possible because of you, our global village, our new global small group.  Thank you!

And we need it right now. Abby is starting to see the effects of radiation. Mouth and throat sores now. She's lost 2 Kilos in a week and is only eating maybe 1 meal a day.  Yesterday they started her Dilaudid (cousin of Morphine), to help control the pain. It takes more than 50 percent to be in that room with her when she is in pain.

This is going to be a rough haul.  The chemo is done and we'll start to see it's effects next weekend and all of these effects will probably stay until finally Anna's marrow grafts in.

It's rough, but knowing that you are praying, encouraging, creating space for us to rest in -well, it's just our other 50 percent right now. 

Could you do me one more favor?  Could you just put a quick comment in with your city and country? 

I'd love to know, and I think Abby would also be encouraged by knowing, how far our global villiage reaches. Thanks again!

Prayer requests for this week

In addition to the things that Mark has mentioned in the past few posts, a couple of things have come up since Abby has been admitted that would be great to pray for.

- her hemoglobin needs to stay above eight or she will need a transfusion which would delay the bone marrow transplant by a day. Her hemoglobin is 10 right now but things are dropping pretty quickly.

-she has mouth sores in her throat which make it hard to swallow even her own saliva and little things like burps and hiccups are very painful.

-there are a lot of things she's not allowed to eat now and she's having a hard time with that. She's been really nauseous and throwing up a lot but when she is feeling a little better there are certain things she wants and some of them she can't have.

It's Not Over Yet

So, overall, Abby has done miraculously well so far. Thank you for your prayers!

It's still scary stuff and will get worse before it get better but, for now, she is feeling ok.  One more chemo infusion Monday at 10am and that's it. The damage will be done, and the healing will start. We have no clue how it will effect her, and it will take another week to really see what it does to her. Mouth/throat/gut sores are the most common with all of this ablative therapy. We're still hoping and praying for minimal side-effects and maximum cancer fighting effects. Unfortunately our Dr. said that this therapy is more like carpet bombing than a precision strike -not the most uplifting picture but he knows what he's talking about.

Yet, in the midst of this little war zone, there have been some very sweet and encouraging moments.

I'd say the highlight was on Abby's check in day.  She had her spinal tap (not the highlight), got her room (a sunny side room, yippee!) and received a personalized video to Abby from the lead singer of "For King and Country." This was a super special video because the song, "It's Not Over Yet" has been her favorite song lately. I think it's been a bit of an anthem for all of us actually. We heard it twice on the way to the radiation appointment. Then, as we are sitting down in the waiting room, boom, it comes on again. Tiffany I just sat there in silence, tears down our cheeks, but being comforted by the words of the song, "Even when you've hit your limit, it's not over yet, it's not over yet." I am honored that this singer would take time to send a personal message of encouragement to my daughter, not just in her battle, but in her faith. To encourage her to not give up, to look up to heaven, and to walk out this journey in faith. Thank you Joel, you are an amazing human being who is really living out his faith. Thank you so much. Wow.

On the home front, I feel like I've been carpet bombed a bit too lately. Being sick at home when you just want to be at the hospital with your daughter has been hard. And, at the same time, I'm trying to keep Lily from getting Anna sick, sanitize the house, and rest myself.  Sitting at home sick, forces you to think.  Though challenging, I guess that is what I needed to do that.

It's just been so fast-paced lately. So many appointments in the last 2 weeks. On Monday during Abby's final pre-launch check, I got to sign a form with the doctor that basically spelled out all of the things that could go wrong, why we are doing it, and that I give them permission to do it regardless. I've got to say, that's the hardest contract of sorts that I've ever had to put pen to paper on.

• This thing may go wrong -initial here.
• This could also happen leaving your daughter in this condition -initial. 
• These side-effect could last forever -initial. 
• Or it could all work -sign and date.

Whew. But, we can't leave her on Mars right?  So, you sign the form. You sanitized everything you can, you rest, you take deep breaths. And, you look to heaven. You pray, and you relax into the situation that you've been given. It is what is, but we still have a choice. I have the choice to get mad, to think about throwing things... through windows, like chairs. But I've never had those feelings... and in my imagination of that, it never really works out. So instead, you look for the glimmer of hope and the blessings. You still get sad, you still walk out those thoughts, you still take them to God.

One more day.  Pray for effective treatment and less side-effects. Thanks again for following Abby's journey.  That kid, with the continual smile on her face, really is something special.