First Week of School… Not the Milestone we Expected

Like so many of you fellow parents out there, we were eagerly awaiting the day for Lenox to start SchooL. For Lenox, as an Explorer, her last year of pre-school at St. George’s. We had been hyping it up for weeks with her, and had gotten a new backpack, blanket, etc. She was soooo excited. This week would also be her first week of new soccer and gymnastics classes.

On Monday there were so many cute first day of school pics, or a new grade pics on FB. But, cruddy for Lenox, she had to miss the first day, and what looks like at least the first week week, of school. Starting on Wednesday of last week, Lenox started spiking fevers which required us to go into the clinic several times in just a few days for IV antibiotics And fluids. On Friday, we thought we had overcome it and she stayed fever free. Saturday morning Liz flew out for a week-long legislative institute in Sacramento, a wonderful opportunity. And we went to the pool. But by Saturday evening the fever was back and we were admitted to the hospital. While we have been here for day surgeries, and an ER visit, it has been about 7 months since we had been admitted up here in 4North, the Oncology wing. Aside from the pleasant reconnection with some of the amazing nurses and CA’s, it was a bummer to be back. We are now on night 4 and have confirmed we will be here Tonight again, a 5 night stay at a minimum. Upon admission, her counts were lower than our first admission at diagnosis last July. This apparently is not entirely unusual, but still jarring as you can imagine. Her body is fighting off something and we just can’t ascertain what. She has been on IV antibiotics since Saturday, fluids, and got a blood transfusion to try to help her counts. She is off of all chemo so her body can work on fighting the infection. Yesterday they added a second type of IV antibiotic. And unfortunately even with all the antibiotics, she still keeps spiking fevers periodically. At 1 am today, she spiked another high fever (high for ALL patient) of 103.2.

Our benchmarks for being released are fever free for 24 hours and better counts. They may be tweaked a bit – for instance if her counts would get better then they might let her go home with a mild low fever, or conversely if her fever stayed away entirely for 24 hours, then they might let us go home with less ideal counts. As it is, we aren’t hitting either. Its Not clear to me yet whether she gets to start back to school once discharged or if there is going to be a window of her being home but not back to daily activities. Guess it will just depend. So what in the world could be causing the infection?

While Liz and I almost always find Lenox brilliant, in true 4 year old form, she had recently stuck a bead up her nose at school! Really Lenox?! What in the world was going through that head? At the time, we laughed ( and of course got the bead out!) but while here at the hospital we started to wonder if there might be a correleation between said bead incident and the fevers? Could there be another bead up there? A raisin perhaps? (Lenox had revealed to us that she dreamed there was a raisin up there – hmmm, seemed suspicious to me, and may warrant some dream analysis)Or had that bead, pulled off a floor of a preschool, been possibly a little dirty? Or did that bead scratch the inside of her nose causing an infection? The permutations of how this bead might be the true culprit became farcical, but alas an ENT doc came and affirmed that there are no obstructions, etc (the raisin apparently really was a dream). It doesn’t appear that anything related to her nose is causing the fevers. Good to rule out but leaves us still unclear about the cause.

We are confined to our room, so Lenox doesn’t get any germs from anyone else, or give whatever she may have to other immune suppressed kids. So we have been hunkered down with books, movies, etc. Luckily she has been really tired too (possibly from the meds and low counts) so sleeping a lot. Otherwise being cooped up like this would drive her batty, a feeling I am totally relating to. With Liz out of town, our friends have been a godsend, keeping us fed, and allowing me some periodic breaks for showers. Thanks to you guys!

Will keep you posted further – but hopefully we will be discharged soon with a fever- free infection-free kiddo.

Brooke Boston