Hi all – this is Nicole, I wrote the below last night but wasn’t able to send until now, so Happy Thanksgiving!
Sweet Sally and I had a good day, first off, her marrow tests came back negative so she is still in remission, great news so Matt an I can breath for a few weeks until the next test! She had a visit from OT and dance therapy, we played music and she got a workout followed by a nice long nap. The steroids kicked in so Sally ate oatmeal twice and I saw an increase in fluid intake. Steroid weeks are a great opportunity for her to gain weight every cycle. It’s hard work keeping her cheeky!
I spoke with the doctor about Sally’s itchy nose post morphine. He was not concerned. She did have one dose today that was followed by an antihistamine. Problem solved.
Sally did not get platelets last night because she was an 11, 10 is the tranfusion number. Idealy her platelets would be between 300-400. I expect it will happen tonight. Her neutrophils (ABS) are still at 0. 🙁
Someone dropped off a small bistro table for Thanksgiving dinner, which we’re having here in isolation. I’m looking forward to seeing our menu and I’m sure Sally is too. At home our neighbors the Larsens are cooking us a turkey (Thomas entered into a turkey contest and said he’d win it, he did!) to eat later on in the week.
- Play time
- Sweet Sally sleeping.
- New hat from cousin Jenny
Meanwhile Matt and the boys spent the day at Disney World with Grampa Kabel. A Sally supporter, Lisa, donated tickets when she heard they were down there.
- Magic Kingdom
- Watching a parade.
- Riding the old train.
- Riding It’s a Small World (Thomas’ favorite non train ride)
- Two Thomas Kabels, same expression on the People Mover (Daddy’s favorite)
- Blurry, but you get the point.
The boys had a blast, most of all they loved the monorail and old train, and spent most of the time in Tomorrow Land. Matt said he got teary eyed while the boys watched a parade as it was the only time he had to think about Sally and me not being there in an action packed day. Hopefully we can all go there together one day as a family, bit am happy the boys got a day all about them.
Please keep Sally in your thoughts and prayers, and please pray for Sally’s neutrophils to come back.
Nicole
Sending lots of prayers! Wishing you all a very Happy Thanksgiving!
Last year on Thanksgiving, Hannah was in the hospital with zero neutrophils – I was with her in isolation – and we celebrated via Facetime with ten siblings, Dad and friends at our home. This year, Hannah is getting into all sorts of (happy) trouble while we are running around getting ready for Thanksgiving together today! She is a delightful, energetic, feeling-great nuisance! Praying for this hard year in the hospital for you, and for MANY joyful Thanksgivings together at home in the future. We are praying for Sally and your family.
Happy Thanksgiving!
Sara for the Shulls
Kevin and the kids – Grace, Lydia, Nat, Essie, Ben, Sam, Jon, Ruthie, Zac, Dandy, and Hannah.
Thinking of you and your family especially today. Praers and hugs to all of you.
Lots of prayers and good thoughts coming your way….Happy Thanksgiving….know you will be thrilled to get “your boys” back home safe and sound.
My thoughts and prayers are with you all everyday. Sally will get better and you will all be in Disney. I admire all of you. You are an inspiration and makes me put my life in what is important and what isn’t.
I wish you the very best. You’re in my thoughts a lot. Your family is lovely, and I hope your wishes for them come to pass. Sally is a trooper. Hope the holiday season is a joyful one. Love, Carol