Difficult Days

On Friday, one of the doctors called to let us know the results of Tyler's latest spinal fluid test. Sadly, the percent of leukemia cells had climbed from 16% up to 21%. The doctor didn't want to worry us, but the transplant team did decide to change the chemo medicine that they have been using for his lumbar punctures.

That might not have been a matter for concern, except for the response we got at Monday's appointment. When we got to UW for the lumbar puncture, Tyler asked them a question about the new chemo. Tyler's question made the staff realize that they were administering a new chemotherapy that they hadn't given before for the procedure. So there was a delay as they tried to hunt down an oncologist to be there during the procedure.

Apparently they wanted to be sure of the impact of the drug before they gave it to Tyler. While we appreciated the care they took to check out the procedure, their words were not really inspiring our confidence in the procedure.

We are both a little bit frustrated that Tyler's doctors changed the orders without giving us the opportunity to learn more about what they want to do and why. It's frustrating that we don't know what's going on at times when we receive our appointment schedules. The appointments aren't really explained well as to what they are on the schedule printout we get. Our questions are eventually answered, but we really have to pursue the staff and ask questions.

After our appointment on Monday (30 minutes extending into 3.5 hours), we are growing somewhat weary of these doctor's appointments. . We still haven't heard about the results of Monday's lumbar puncture, so we are expecting the news to be something we don't want to hear again. But we do have our clinic visit with our nurse and doctors tomorrow (Thursday) and should be able to talk to them about the results and what they mean.

We'll try to post more after we know more about what is happening...