I haven’t updated the blog in several days but what better day than +100. In the post bone marrow transplant world, +100 is a big milestone. Mostly because many are starting to see some counts stabilize and first bone marrow biopsy is done at this point. Jen’s hemoglobin (or red blood count) has been consistently close to normal for a couple weeks but she is still receiving transfusions of platelets almost weekly and neupengen shots two to three times a week to boost her white count. Low platelets causes her to bruise easily and gives her sinus bleeds and a low white count makes her at risk for infections, so we keep on top of these two things consistently. Jen had a biopsy many weeks ago and there was no sign of cancer so the doctors decided to wait until her counts have stabilized more before repeating.
A couple weeks back we made three ER trips in eight days. It was quite exhausting. Even if all she needed was a transfusion, if we took her to Lima, she would be transported to the James and then soon after released. This was nearly too much for all of us, so we requested she have her Lima hematologist check her counts later in the week with him being able to order a transfusion if needed. Her James doctors then see her at the beginning of each week and hopefully with the two working together, we can make less ER trips.
Jen still fights lots of fatique, tremors, and frequent headaches. She also experiences bone pain almost daily. Much of this has to do with her body recovering but also some of the medications she takes causes many issues. Today she will stop taking predizone, which tends to increase her risk for the CMV virus. When the CMV levels elevate, she is put on a medication that drives her counts down. So in theory, no predizone means her counts should start to move up.
We asked her doctors a list of questions today, from her working on refinishing furniture again to swimming to sitting near a campfire. Although she is not able to fully enjoy many of these things yet, the fact she is wanting to is a positive sign she is feeling better and is looking forward.
We also in planning for her party on July 22, decided we wanted to spread some hope to others at the James. Today we delivered paper flowers (the real things are forbidden at the James) to two patients including meteorologist Chris Bradley who was diagnosed with AML in March. He unfortunately has not been able to get to remission and move forward to transplant. Our heart breaks for him and his family. The hope we have with Jen reaching day +100, we want to spread to those who may feel hopeless right now.