March 13th, 2005
It’s not that we haven’t tried, but nobody in the family has been hospitalized since Jacob got out on February 28. It’s been a very busy two weeks since then and I haven’t really had the time or energy to post an update until tonight.
On the 28th, Spencer was in getting chemotherapy while I was in the next building at Children’s Hospital of Austin in Jacob’s room working on discharge. By 11:00, we were done, they needed the room, and Spencer was just getting started on his doxorubicin infusion, so Jacob and I went home. Turned out to be a good move since Spencer needed to stay an extra two hours to get plasma – something to do with a side effect of the pegasparaginase. He and Rachel were there until 5:30 PM.
We used the week to try to recover. Spencer went back to school and I took care of Jacob for a couple of days at home. After clearing things with his doctor on Wednesday, we brought Jacob back to day care on Friday. Rachel was not feeling too well during the week and started Zithromax on Wednesday. I started tanking on Friday and by Sunday found it necessary to go into the clinic to get antibiotics, codeine-laced cough syrup (which let me sleep well for the first time since Thursday), and albuterol inhaler (to help with bronchitis – didn’t do much). Saturday, I vaguely recall that Hella came over and took Spencer to his therapy and helped around the house while I lay passed out in bad all day. Sunday, we missed a birthday party and I didn’t notice – to Spencer’s credit, he said he was sad, but it was OK.
Spencer had school last week and Monday of this week; Tuesday and Wednesday we did neuropsych testing to establish a baseline for long-term effects of chemotherapy. We have a followup with the neuropsychologist after Spring Break. We wanted to get the testing in when Spencer wasn’t too down from chemotherapy and as soon as possible. Jacob made it to day care Monday to Wednesday of this week.
Thursday, the wheels came off again. I was mostly back, though still taking a 3-4 hour nap in addition to sleeping most of the night. In the morning, I went into Jacob’s room and found him sleeping in a rather large amount of his own vomit. I gave him a bath and we changed the plan for the day. The friend who came over to drive Rachel to work also took Spencer to school I stayed with Jacob and tried to get him to drink Pedialyte to keep him hydrated. When he threw that up, I called in for a doctor appointment and gave him water which he managed to keep down. He was desperately tired and needed a nap. While I was waking him up to go to the doctor, I got a call from Spencer’s school. He was not feeling well and they said his temperature was 103 – I later learned they had measured 102 under his arm and added one degree. At this phase of chemotherapy 101.5 (measured at the doctor’s office) is an automatic hospital admission. Naturally, I panicked, but only a little. I called Rachel and told her. I called and cancelled Jacob’s appointment to be rescheduled ASAP. I packed enough stuff for Spencer and me to be in the hospital overnight. While I was getting in the car to go, Rachel called me back and said Tere would take Jacob and get him into the doctor that afternoon. I picked up Spencer at school, applied numbing cream to his port, and went to the oncologist’s office. They had him at 101.2, so no automatic admit. They drew blood, started cultures, and gave him IV antibiotics just in case. His temperature came down with acetaminophen (Dr. Sharp reports Spencer is the only 5 year old he knows who calls it “acetaminophen” rather than Tylenol) and we got to go home with a followup Friday morning. Meanwhile, Tere took Jacob to the pediatrician where he was diagnosed with an ear infection and upper respiratory virus. Apparently, we found another virus floating about.
Friday, brought some resolution for the boys. Spencer’s blood cultures didn’t grow anything yucky, so he got another dose of IV anitbiotics and no hospital stay. We decided to delay day 28 of Delayed Intensification even though Spencer’s blood counts might be OK, so we get Sprink Break off. Jacob started feeling a little better and got to start taking Augmentin (same stuff I’m taking) and Spencer started taking Zithromax (same stuff Rachel was taking).
Spencer recovered quickly and seems fine today. He has high energy; we spent two hours playing on his bicycle and at the park today. He is in full humor; today he was practising sarcasm though he hasn’t quite got it. Rachel started running a fever again and seems to have the same virus that Jacob, and apparently Spencer, had. I am beginning to feel better, but not yet good enough to cancel my Tuesday followup with my doctor. Looks like the plan for the week is get Jacob back into daycare, have Rachel spend another day or two at home, and get Dad and Spencer out playing as much as possible all week.
“But how, ” as my fellow travelers in my twice-monthly men’s group would ask “do you feel about it?” I’m really glad we avoided the hospital; as much as Spencer thought it would be fun to spend a night on the Green Unit, I dreaded the prospect. I’ve slept in that hospital six nights (three on the green unit with Spencer and three on the blue unit with Jacob) since October 22, and that’s six too many as is. I am godawful tired of the bacteria and viruses floating about and I wish this will be the end of it for a while. I fear that Jacob will need tubes in his ears – sorry, son I think I gave you those ears – one thing I’m glad Spencer did not inherit from me. I am delighted at the spirit that both of my sons show even when knocked down by illness and terrified that I’ll have to keep watching that as they grow up. I am ecstatically happy that we get Spring Break without hard chemotherapy and we’ll be able to go to the CHOA ChildLife picnic on Thursday.