I had a post all written out last week, giving encouraging news about Alexander’s ever-increasing energy levels after getting home from inpatient chemo.  He was very tired the first few days, but Monday and Tuesday of last week, he seemed to be getting his appetite and his energy back.  We knew his counts would drop, but we were hopeful that his lack of nausea and his overall good spirits were an indication that things would be relatively smooth.

We were wrong about that.  We went to Edward Hospital in Naperville for his outpatient infusion Wednesday, and he didn’t sleep well that night.  Thursday, things seemed OK, and my parents went ahead and left to go back home.  But that afternoon, he drank lots of milk all at once and then vomited.  He was very lethargic but otherwise OK–no cough, runny nose, or other symptoms–but when I took him to shower off, his head felt hot to me.  I couldn’t justify not taking his temp.  I watched the numbers on the digital thermometer rise slowly, pleading for them to stop … but they didn’t until they reached 100.9.  We knew from the outpatient infusion that his counts were low, and a fever of 100.4 or higher meant an automatic admission to the hospital.  We called Comer and, to our dismay, were told that, because he wasn’t having serious symptoms, we should drive there rather than going somewhere close by.  They wanted to admit us there.  We understood that and, although we were disappointed to have to go so far, we hoped we would be back home after just a couple of days.

Wrong again.  A strep test (you’ll no doubt recall our experience with strep tests just before his diagnosis) and a rhinovirus test both came back positive.  I had given him Tylenol, so he had no fever, but he had to be treated as though any minor infection could turn into a life-threatening situation.  After some difficulty accessing his port, we waited in the emergency department for our room to open up.  When we were finally admitted (some 5 hours after arriving), it became clear that this stay would be longer than we anticipated.  The doctor was noncommittal at first about the time frame, but he had to stay at least as long as his counts were low, long enough to get a full course of IV antibiotic, and long enough to be sure nothing grew in his blood culture (something growing would have indicated a bacterial infection). 

We were hoping for a 48-hour stay.  We ended up staying from Thursday until Tuesday of this past week.  We got a harsh reminder about the difficulty of keeping a kid entertained in a hospital room.  It’s not easy.  He’s seen all the kids shows and doesn’t have the attention span for a movie.  Furthermore, we were confined to the room.  During his inpatient chemo stay, he could at least go to the play room and walk the halls.  In his immunocompromised state this time, he couldn’t do any of that.  He had to stay in the room the entire time.  That was OK for the first couple of days, but toward the end of the weekend, he started to regain his energy and playful disposition.  It was very, very hard to keep him happy.  His constant refrain was, “I’m bored!”

Because no one was at home to be with Charlotte, Christy and I took turns going home.  Our wonderful neighbors came through for us again that first night, and then Christy went home for the weekend while I stayed with Alexander.  We did discover one hack that made sleeping in the hospital room slightly more bearable: we have an egg crate mattress pad and a fitted sheet that work reasonably well to pad the oh-so-uncomfortable hospital sofa.  Christy brought that to me, and I slept somewhat better than I otherwise would have.  Those items will definitely make all future trips to the hospital with us.

Days went by as we willed his counts to go up to the point the doctors would be comfortable setting us free.  His ANC (absolute neutrophil count) stayed near zero until Monday, then started to tick up.  His hemoglobin and platelet counts also fell below threshold levels over the weekend, requiring blood and platelet transfusions.  Finally, on Tuesday, his counts were rising, and the team decided we were OK to leave.  And the rebound was nearly as steep as the decline: the team told us we could safely send him back to school on Wednesday, having been in the hospital Tuesday!  We decided against that, but we did send him back to school Thursday and Friday of this week.  He had two great days of being with friends and caring teachers and staff.  It was a very good thing for us all.

So, now we know what to expect from a mid-cycle hospital admission.  We are going to do everything we can to avoid that this next cycle.  It is such a strain on our whole family, and that’s without any serious infection in Alexander.  But I’m happy to report that he’s felt fine, if a bit sleepy, since getting home.  A nurse came to our house Thursday and took a blood sample, and another home blood draw will happen tomorrow before school.  Alexander is recovering well, and we are on schedule for his next round of chemo to start a week from tomorrow.