Yeah, I know…I’m not doing my NORMAL blog posts. Believe me. I’m keeping articles and some thoughts about culture, books, movies, the Bible, etc. to share with you once another part of this Leukemia journey with Abby has completed. For now, it seems like all that we can do here in Colorado is fight the good fight. Below is TODAY’S blog input from both Mark and Tiffany. As you will see, the physical battle is only ONE part of a bigger story. It gives all of us insight on how illness and struggle affect EVERYTHING in our lives. Life compartmentalization never works. When someone tells you after you ask the question, “how are you doing?” that they are “fine,” be suspicious. There is ALWAYS a larger story. Yes, there may be relational boundaries that you need to honor…but if someone is in your life as a friend, family member or brother or sister in Jesus, please know there is ALWAYS more to the story. The question in most of these case is – are you courageous and patient and loving enough to enter into that story? Give that some thought and prayer!
The Good, the Bad, and the Ug-xhausted by Mark Schreiber
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 haven’t really wanted to blog lately. Yet, I know that people are also wondering how Abby and the family are doing so let me give you the quick update. The Good, The Bad, and The Ugly or in our case, The Exhausted.
Well, let’s start by saying that those baby monocytes are starting to turn into lymphocytes. Abby was at 20 ANC for two days, then her ANC was 40, 50 and today it’s at 90! Abby is also getting weened 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. They are also trying to get her off of the IV nutrition and back on solid food, so they gave her an appetite stimulant. I guess it worked because she ordered eight things off of the menu and ate at least 3 of them. I’m back on duty tonight after a couple of nights back in Fort Collins. Once Abby is at 500 ANC for three days in a row, off of the IV, and is eating, they would be able to discharge her. That could be as soon as a week away!
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 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 were just a bit closer to Children’s Hospital, so we could all be a family together again.
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.
With all of that said, I think that not being a family unit has been 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 last 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. So, we may be doing the same things but 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. Ours just happen to be packed into this year. We will be a family together again soon. 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.
Good News! By Tiffany Schreiber
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 three 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 two 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.