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Powered by LifeTypeWe were so relieved and happy to have Jon and Grace with us for Family Camp.
Daley summer life has been super full as usual. Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)
We went to Connecticut to see extended family (big family pictures have yet to be uploaded from our "real" camera.) Grace is not allowed to get her central line wet, so at the suggestion of a nurse, we wrapped her up in plastic wrap so that she could walk the beach and step in the shallow water. Here she is, all wrapped up, with her bathing suit on top. (Sweet pics of her and Jon on the beach are on the other camera.)
Overall, she is doing well. Her numbers are looking good. However, we are still concerned with diaper contents. What is the right level of softness? What indicates a problem and what is normal? There is such a range of normal. What is her new normal? Bananas affect it; summer fruit affects it. Medications affect it. We are keeping her off dairy for now to eliminate that aspect of the question.
Give thanks to God for her progress and pray that we can have wisdom to know when to intervene. She also needs to eat and drink more by mouth. Sometimes, I am impressed by the amount she consumes, and sometimes she still doesn't eat much.
Faith's back, last I heard, was doing ok at Csehy (music camp.) She still has healing to do and appointments to go to, and soccer to play! Her team is working on getting special jerseys in the orange color of Leukemia awareness and they are working on a plan to sell Victory tshirts at soccer games. They are inspired by Faith's dedication and sacrifice and wanted to do something for her and Grace and us!
Grace is all set to leave in a few hours - just waiting on paperwork.
Her potassium is a little high, but they had taken off her potassium-lowering drug, and she has been eating 4-5 bananas a day, so they expect she will be fine once she goes back on her regular meds and has more choices of regular food.
She has been eating English muffins (and the nurses are impressed that she can put the jelly on herself - I'm not sure where that skill falls on the normal development chart to know if that is impressive or not) and French toast as well, but her primary diet has been bananas.
Her stools have been the best they have in a long time, and she even had negative results for blood, which hasn't happened in our memory.
Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital.
She has been doing quite well the last few days and much more cheery. Nothing like a colonoscopy to cheer you up I guess. I hadn't been paying attention (that they hadn't given her any prep drink stuff) before the colonoscopy, but they had decided to do just a sigmoidoscopy instead of a full one, so I was surprised by that when discussing the plans with the GI proceduralist just before getting it done. He said he would go as far as safe, and went in 20-25 cm, which was bigger than he had gestured with his hands, but I assume is what he was planning on doing from the start, but was just being as nice as he could be to me.
The endoscopy (from the top) was clear, and I was surprised to learn that they started the procedure without intubating her at all, but she had some trouble breathing on her own and so stopped and intubated (using the correct size tube - he was listening - I told about 6 people that day who all said they would get the message to the right person; sometimes they previously have not listened to me, or paid attention to her chart, and used a larger tube than fits well for Grace).
We are still waiting on some viral reports that should come back tomorrow, but she has been officially diagnosed with GVHD*, despite all of the oncology providers thinking that wasn't going to be the case and all of the non-oncology providers assuming it would be the issue, so that is curious to me. If you read the symptoms at the previous link, you'll see that she doesn't have most of the symptoms, and so I think they are used to seeing more symptoms so figured it was something else.