What’s that saying? If you want to make God laugh make plans… it’s something like that. That describes our lives last week. Two weeks ago, Trip suddenly got a fever. It was Friday afternoon. Colson was hunting. Trip already his first dose of chemo that morning and was home from school to get his 2nd dose. He wasn’t acting like himself. I took his temperature and it was almost 102. I called the clinic and in we went for the intravenous antibiotics he has to have every 24 hours when he has fever. (To be on the safe side, the assumption has to be the fever is from an infection in his port instead of the likely virus.) I wasn’t prepared for how hard this was on him. He gets accessed every month to flush his port but that only takes a minute. This antibiotic came with the big bandage, the long line and a tube of medicine. The screaming and crying was intense along with a few of the kicks he divvied out. Trip was mad to say the least. His counts were good enough that we could leave after getting the antibiotic, but explaining it was only a 30-minute medicine wasn’t getting through. He couldn’t calm down while the medicine was going in. He cried and refused to rest. I said, “Trip, you know we are not staying here, right?” Through tears he said, “I know we aren’t staying here but it feels like we are staying here.” It made perfect sense to me. All the actions up to that moment were the exact steps we would take before getting admitted for the few days of chemo. We eventually got to go home, but he still had a fever so we forfeited the two remaining chemo doses for the weekend. After that, he felt better… until Tuesday.
Tuesday night we ended up in the ER. We learned Trip tested positive for RSV, which is common and shouldn’t be too scary. High fever, low oxygen levels, high heart rate, a little vomit and more antibiotics all came with round two of fighting from Trip. His fever was so high and he felt so crummy I have no idea how he had enough energy to fight but he did. We eventually got home around midnight and at 2:00 a.m. his fever was high enough to scare me. For some reason Trip doesn’t respond to Tylenol as well as Motrin, but Motrin isn’t good for chemo patients because it can lower already compromised platelets. I gave him Motrin anyway and did not sleep the rest of the night. I left for San Antonio for work at 6:00 a.m. on Wednesday. Colson had to take Trip to the hospital again on Wednesday and I decided to come back home that night.
I thought I would be used to “scares” and this would be a no-big-dealer for us, but the high heart rate, low oxygen and seeing my kid miserable struck the fear in me all over again. Visions of 2011 ICU were dancing in my head. Finally Thursday his fever and heart rate were down. We got to come home after another round of meds and stay home. What relief.
Sunday he was feeling even better so we went to church. The joy I felt watching him sing and clap and enjoy being there was overwhelming elation. I felt a pure and humble gratitude being with him in that moment after the two years of fighting and the week of struggles. What a brave boy. What a fighter. The times I’m getting kicked and yelled at while he is getting accessed used to upset me. Now I try to give thanks in those moments for the fight he has inside. He’s surviving this disease. We are surviving. We are thankful, so thankful.
We went to see Wreck It Ralph this weekend. There was a St. Jude commercial before the movie. (I can’t say enough wonderful things about St. Jude. What an unbelievably generous organization.) The message was to give thanks for your healthy kids. I give thanks for my mostly healthy kid. I’m thankful for him no matter what his state of being is. He has taught me more about love and life than I ever thought possible. Our list of thanksgivings this season far exceeds anything I could have ever imagined. I’m so thankful to each of your for your support and for following our journey. I hope each of you have a wonderful Thanksgiving week.
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