Flexibility and Patience

This week has not gone as planned.  What I wouldn't give for my family to experience colds in a normal way.

Tuesday Anna was supposed to have therapy and then go to school the rest of the day, but she was too tired from the trip to the Kalahari to stay for the afternoon.  No big deal.

Then she started with Matt's cough in the afternoon and evening.  Wednesday she woke up feeling tired and cruddy, but we sent her to school anyway.  She didn't have a fever and often times she perks up when she gets to school.  I ended up picking her up at 10:30, though, because she was too tired to last even until lunchtime; we all know she is feeling sick if she doesn't want to stay for her math class.  By noonish Anna was flirting with a temperature ... 99 or 100.  Again, no big deal, but we started stress dosing her with her steroids; her body won't be able to handle these kinds of illnesses on its own for a long time yet.

Today Anna was scheduled to have her first post-treatment MRI.  Lots of planning and coordination went into this particular day for our family and for those at the hospital.  Yesterday we were back and forth with people at the hospital all afternoon before the decision was finally made to postpone the MRI.  3 hours of anesthesia is not a good idea when you have a cough and/or fever, in addition to having difficulty swallowing and lots of different reasons to vomit.  Rescheduling the MRI was frustrating; we were on hold for 45 minutes with the schedulers yesterday afternoon before finally getting a new date set.

Then I checked Anna's temperature again around dinnertime.  100.6.  Hmmm.  The threshold for oncology kids, even after treatment, is 100.4.  Once their fever goes over that temperature, the worry is that their port is infected and causing the fever.  Blood infections are not good.  So we had to call.

Well, we didn't have to call, but we did.  We were 99.9% certain that Anna was/is fighting the same virus that Matt has had, but the smallest chance existed that Anna's fever and illness were caused by a central line infection and that it just happened to coincide with Matt's sickness.  Since many things have happened in that last year that fall under that smallest chance category, we called the hematology/oncology doctor on-call.

They sent us to the ER to have Anna's labs done (to make sure she was not neutropenic), to start blood cultures, to give her a dose of antibioitics, and to otherwise check her out.  Not my idea of a fun Wednesday night activity.

Matt was still not feeling 100%, but was all of a sudden responsible for the rest of the evening with Kate and Ethan.

Anna and I were in the ER for about 5 minutes before I had the realization that these doctors and nurses didn't know Anna at all.  No idea of her medical history whatsoever.  Sigh.

We were very blessed to have a nurse who worked on P4 a few years ago and knew how to handle this kind of situation.  The medical student and the resident did not have the same experiences as her, however, and so I worked very consciously to be Anna's advocate.  ("She is very orally sensitive because she has thrown up so much in the past 10 months.  You probably don't want to swab her throat for strep unless you absolutely have to.  Trust me, she does not have strep throat."  "Please don't press on her belly too hard.  Her skin is overly sensitive.  For the past 7 months she always tells doctors that it hurts when they press on her belly.")

The attending doctor had a bit better of a bedside manner and agreed with me that Anna's fever was almost certainly because of the virus going around.  However, he also agreed with the resident in that Anna needed a chest x-ray to rule out pneumonia.

So four hours later, we were allowed to come home.  No pneumonia.  No neutropenia.  (I already assured them of that.)  Just a virus.

Had we been normal parents of a normal second grader, we would have given Anna some Tylenol at about 6 and sent her to bed instead of getting to the ER at 6 and not getting home again until about 10.  But Anna still has a port.  So a virus can mean a trip to the ER.  Sigh.

Side note, we are planning on keeping the port in place until Anna's second post-treatment scans sometime this next spring.  We would hate for her to go through the surgery of having it removed only to learn that it needs to be placed again.  We figure that if she makes it through two sets of clear scans, we will feel comfortable having it out.

The week certainly has not gone "as planned", but I guess by this point I should be used to that.  Maybe, just maybe, next week will go a little bit more smoothly.

At least the visit didn't turn into a hospital admission.

At least Matt was already home from work the last few days so running into school to pick up Anna wasn't too tough.


At least we don't have to worry about neutropenia anymore.  This virus could have been a whole lot worse if Anna didn't have lots of white blood cells.