I can’t believe May is behind us and we are into June. Trip has had two follow up appointments since he stopped chemo in March. The first one in April wasn’t great. He had some skin issues behind his ears that caused his doctor to be concerned. (LCH loves the area behind the ears.) He scratched it so much that she couldn’t tell if it was LCH or eczema. The thought that it could be LCH rearing its head again so soon was paralyzing. Luckily/thankfully, we have no signs today that it was LCH or that the disease is back. Since Trip is swimming so much right now, we have to be diligent about keeping his skin hydrated. If the skin is damaged so that the doctor can’t differentiate between LCH and something else, we are back to considering a biopsy and none of us want that. The second appointment went much better. His counts are fantastic, skin is still dry but no major issues, his eyes look great, and his reflexes on one leg look like they might be coming back. Yay! It was all great, great news, and we have so many reasons to give thanks. The doctor wants to wait until the end of July now to scan him to decide if the port can be removed. Hopefully (fingers crossed), he will start Kindergarten without a port. His MRI and x-rays will be on July 30. There will not be a PET scan unless there is reason to believe it is needed.
May was a wonderful month for us. We got to go on Trip’s Make A Wish trip to Disney World. It was non-stop fun for a week. We stayed at Give Kids the World. I cannot say enough good things about the work these two organizations do. It was a humbling experience on a personal level and on a communal level. To see kids who have been through literal hell getting the royal treatment, brought tears to my eyes many times. We went to every Disney park, Universal Studios, Sea World and the beach. We skipped all the lines, met so many characters, saw great shows and got to eat lots of junk food. But the best of all was making 7 days of memories with my family. When we were leaving Trip was crying and said, “I want to stay in Florida at Give Kids the World. I don’t want to go back to Texas where it’s Give Parents the World.”
Trip graduated from Montessori in May. I thought I would be sad, but I was beaming with pride. I’m so, so, so thankful he is where he is right now and watching him grow and change gives me such joy I think my heart might burst at times. He is strong and silly and happy and defiant. I’m thankful for all of it.
May did bring one dark cloud our way. We lost our beloved Rumple. She was almost 14 years old, which is unheard of for a German Shepherd. We are thankful for the years we had with her and especially thankful for her fierce protection. I still miss her especially in the mornings when we would spend quiet moments together.
I would say that I hope to give an update again soon, but really I don’t want anything to update until Trip’s next follow up or even after his scan. Staying healthy and happy and un-newsworthy are the goals for the foreseeable future. Much love to all.
