Daley Ponderings

One of our favorite series is The Green Ember, by S. D. Smith. Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and good triumphing in the end.

The above verses are the Oath of the rabbit kingdom. Faith was wearing her Oath t-shirt one day and I suddenly realized that it now has a new meaning for our family - my blood for yours  - Faith's blood will literally be for Grace's. I was so excited about this revelation that I emailed S. D. Smith and he was touched by our story and especially by Faith's heroism and sacrifice. He sent us more shirts, including one for Grace, and we had a super fun time Zooming with him in January.

Faith and Grace are wearing their matching Oath shirts today for the Transfer of Cells.

After that picture, Jon took Faith back to her room to rest, and she slept until transplant time. Jon didn't really want to wake her up, but he knew she would want him to.

Grace had fallen asleep, too, and when Jon brought Faith back, he noticed that Grace really looked like Isaac and that was hard.

The hospital chaplain came to pray with us and she designed a blessing service with a bulletin and everything. It was sweet. She invited the music therapist to come, but she didn't know the songs Jon picked, so he played her guitar. Faith got to push the button to start her cells flowing into Grace. Faith, Jon, and I sang In Christ Alone. I think our nurse cried. I definitely did.

The quantity of marrow that Faith donated was impressive. It was amazing watching it flow through the tubes to go into Grace.

Faith was ready to get back to her room and rest and get pain medicine, so Jon took her down there in her wheelchair.

I wanted to move to a more comfortable chair, but that activity woke Grace and she woke up very upset. So upset that she was not able to tell us what was wrong. They called in extra doctors and nurses, but all her vitals were good (slightly elevated heart rate from yelling.) But they all knew something was up because none of them had ever heard Grace yell about anything before. So one doctor's guess was a reaction to the Benadryl. We were able to calm her down with some songs (the music therapist had come back to bring Jon a guitar to keep in the room.) Then she had some gas and I realized she needed a change. That then made it apparent that it was her diaper rash that was the problem all along. She must have gone in her diaper before falling asleep earlier, and we didn't catch it. So her rash is much worse, but they called in the wound doctor, who gave us special wound healing cleanser to wipe with and another type of cream to put on thickly. She has been much more like herself since then.

Faith is doing pretty well, but in pain. Morphine didn't do anything for the pain and it stung as it went through the IV, so Faith didn't want to ask for more. Her nurse eventually got a call back from the doctor who was able to authorize oral oxycodone, and she is feeling better now. They watched How To Train Your Dragon and ate dinner. She is now able to move to the bathroom on her own, and Grace's nurse advised Faith to "take a lap" so we will see if she is up for that.

God has been so good to us. Your prayers and love are sustaining our family. Grace has enjoyed the stickers coming in the mail. The nurses and doctors are exclaiming how well Grace is doing. Keep it up!

The next couple of weeks are anticipated to be the hardest, with chemo side effects catching up to Grace and a zero immune system as Faith's cells take hold and grow. (Also, a few birthdays at home celebrated without Grace and one or both parents.)

After I wrote this, but before I published it, Grace threw up her dinner all over her front.  This was right after a diaper change, she was standing up to head back to the bed.  It got on her lines, so even though she just got new lines and caps today, the nurse gave her another new set.  She also has been having a lot of diarrhea this evening.  She is now zonked out (reading a book while waiting for me to get ready for bed) and about to be transferred to her crib.

I'll leave you with Joy's modification of the Oath: