Friday, November 30, 2012

Fever. Rocephin. Repeat.

Trip has pneumonia. We went to the ER on Wednesday night because of a high fever. Trip got a lung x-ray they said was clear. We went again last night with a fever thinking he’d get rocephin and we’d go home with no major news, but suddenly the lung x-ray from the night before showed pneumonia. (I never got an acceptable answer on why there were different results from one night to the next and if I would have learned about the pneumonia if he hadn’t had fever the second night.) We luckily got to come home. His counts have dropped since we were in clinic on Tuesday, so the worry is that we will end up in the hospital if things don’t improve. His ANC was down to 1000 last night, which isn’t terrible, but it has dropped from 3200 since Tuesday. If it drops below 500 and he has a fever, we get admitted. So far today, his fever has stayed below the threshold of having to take him in, so I hope we stay on that path.

Disease can be tiring, lonely and overwhelming for the patient and the caregiver. I woke up with thoughts of feeling incapable of doing what needs to be done to take care of my son, work, and manage life. A phone call with my mom reminded me she would drop her life to be here for Trip and me. An early morning text asking how we are doing reminded me people care. A friend who offered to bring us dinner and one who offered to go to the store for us reminded me I’m not in this alone. The wonderful friend who actually needed help himself but offered to take care of Trip just so I could have a moment to catch up with myself reminded me how good people are and that they want to help. Near and far I know people are rooting for us and would do what they can to make things easier. Those gestures can never be repaid. Saying thanks doesn’t seem to be enough. Just know that you each have my humble gratitude.

Sunday, November 18, 2012

Don't Get Too Comfortable

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.