Graft vs Host Disease and the 4th of July

Billy’s favorite holiday is the 4th of July.

We always have a big 4th of July get together. It’s also the day we celebrate the birthdays of our 2 youngest grandchildren, Evangeline and Judah. Billy and I were looking forward to the party, especially with the added reason to celebrate-he had the bone marrow transplant, and was out of the hospital! Everyone chips in and we have $900-1200 worth of awesome fireworks that the guys launch into the sky. It was going to be epic.

But, things never go as planned, do they?

We saw the doctor on Tuesday, June 30th. Billy needed red blood, but was otherwise doing ok. We told the doctor we found a shady park, Westside Park in Greenwood, where we could walk every day, and Billy was walking about a mile. It had a creek, which was nice. The nurse warned us to be sure Billy had on sunscreen, because the sun can trigger Graft vs Host Disease. We weren’t too concerned, saying the walking paths were pretty shady. Well, wouldn’t you know that very afternoon, the apples of Billy’s cheeks seemed red. He wasn’t running a fever, and we thought maybe it was from the sun. Then his cheeks seemed a little puffy. I started reading about GVHD and worrying.

His red cheeks spread over the next couple of days. His neck was a little red. We saw the doctor on Friday, told him Billy’s face and head and neck were red and itchy. The doctor said it could be a little GVHD. Billy wasn’t supposed to take one of his anti-rejection medicines until after his appointment on Friday, July 3rd, but we forgot. The doctor said Billy’s one remaining kidney “wasn’t happy”.  He told Billy not to take that medicine that evening, or the next morning, and to come to the BMT ward at Franciscan Health on Saturday morning, July 4th. He wanted to test Billy’s levels and make sure his kidney was ok. We had CHECKED OUT of our hotel, we were so sure we could go home for the weekend and see family and celebrate the 4th. Billy’s doctor told him he must stay close to the hospital, and that he can’t be around a lot of people anyway. He said no party. Not only that, but Billy’s rash spread while we sat for 3 hours in the BMT, waiting for blood test results. He had a red rash on his arms, his chest and back now. The doctor said to take the medication he had skipped, get cortisone cream and try to hang in until Monday, when the pharmacy could make him some Army cream, a steroid cream of some kind.

Since we no longer had a hotel to return to, and desperately needed clean clothes to wear, we drove the 1 1/2 hrs home, did laundry and got to see Joseph and family and Jason and family, since the party was still going forward on the 4th and there was tons of work to do, they were all at our house. We booked at the same hotel, and drove back, ready to stay.

The 4th of July party went fine, and Joseph video called us so we could watch the grandkids open their presents. Nora called me during that day because she and Sophia had got into a fight and Nora said Sophie was mad at her and wouldn’t talk to her. I had her put both girls on the speaker phone, and told them how much I love them and how proud I am of the wonderful girls they are. I reminded them ” family first” and that cousins are friends for life. I had them hug each other and had each one say Sorry to the other. (because I didn’t care who did what, or to whom) Then I asked them to high five each other while saying, “I got your back!” They complied with everything, and I was so happy and proud I got to be mediator. 💕

So today Billy’s rash did get a little worse, but the cortisone cream did help the itching, so that was some relief. Billy’s sister, Lisa, flew in last night. She’ll be his caregiver this next week so I can go back to work. I know he wants me there, and there’s no place I’d rather be, but after 2 more weeks of Gretchen letting me work remotely, I had to go back to work. I’m super spacey, and prone to making mistakes because I’m so distracted. God help me at my job this week, please. And please, please heal my Billy.