June 30, 2013


On Thursday we found out that Madeleine's ANC (absolute neutrophil count, essentially white blood cells) were at 0.0.  That means that she has NO immune system and cannot fight off any kind of germs.  We talked to her about how she has to stay home and that we couldn't have friends over, or go to their houses.  Even with these precautions, it is very easy to get something from one of the four other people living in this house.  She was very upset about this, and even more upset when friends tried to come over and I had to tell them they couldn't play.

The next morning Madeleine came into our bedroom early, around 6:30am.  She said that she wanted to go to the neighbors' house (they have a new trampoline, it is irresistible).  We told her no and she went downstairs.  When I got up 45 minutes later I assumed she would be on the couch downstairs but I couldn't find her anywhere.  I'm sure you can see where this is going.  My five-year-old, the one with zero white blood cells, snuck out and went over to the neighbors', who thankfully were awake. After retrieving her we had a big talk about disobeying and needing to stay home.  It was hard, however, to really be mad at her.  I understand where she was coming from.  If she were healthy I would have been a lot angrier.  In some ways I applaud her trying to remain a kid and maintain some of that independence.  There is so much she can't do right now, and there is so much that this disease takes away from her.

A few hours later she said she felt hot and I took her temperature.  She had a fever.  After making the requisite phone calls we were sent to the ER and eventually admitted to our local hospital.  They started her on antibiotics but she spiked another fever and her oncologists decided they wanted her down in Albuquerque.  After seeing how unprepared the local hospital is for oncology kids (or any kids, really) I felt okay with going down there.  There was some discussion of going by car - she was stable and her fever was being controlled with Tylenol, but the oncologist on-call (we call her "Dr. Rigid") said absolutely not and we had to go by ambulance.  Dr. Neal and Dr. Nichols (pediatricians)  got fairly well chastised by the oncologist for even suggesting such a thing.  The ambulance ride was uneventful, and we were accompanied by two firefighters who are also paramedics, so even though it was dark out at least there was a view :)

So, she's inpatient again.  She's on a couple different IV antibiotics.  Her blood culture came back positive which means there is some sort of bacteria or something, maybe an infection in her line.  She did not get anything from the neighbors', or any other friends, this kind of infection would have happened anyway.  Her fever isn't really an issue anymore, it is very low-grade, if anything.  She is receiving a blood transfusion and platelets because all of her blood cells are low.  Once you get admitted it's difficult to get out of there.  We're hoping she can be discharged tomorrow, but the way things go at the hospital, that is unlikely.

Because of all this, and because her counts are still low, it looks like our Denver trip will have to be rescheduled.  I'm disappointed.  We were all looking forward to a fun trip and a fun weekend away.  We will know more tomorrow when we talk to her primary oncologist, but it is looking more and more likely that we won't be going anywhere on Wednesday.  Los Alamos will be doing fireworks here on the 4th for the first time since we've lived here, so now I'm just hoping that she will be out of the hospital and recovered enough that we can at least do that.

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