The Waiting Game...

Today, we had a very interesting trip to the doctor's office. The entire professional building was in costume, even Dr. Alvarez! We saw Winnie the Pooh, a dalmation, a bumble bee, a disco diva and a bicyle rider who had just had a bloody run in with a tree.

Dr. Alvarez is still very optimistic. We have known for a long time that Dr. Alvarez is not a fan of Bone Marrow Transplants, unless absolutely necessary. He wants to give Jo every chance to recover on her own and he really believes that he sees small indications that her counts are improving and she is becoming less dependent on transfusions. The real question is how long do we wait?

Right now, the plan is to wait 4 more weeks, until November 28th. This will give Jo a good strong 6+ weeks since stopping her breastfeeding. At that point, if she is getting worse, we will schedule a Bone Marrow Transplant – probably in the middle of December. If Jo appears to be staying the same or getting better, then we have to reevaluate the plan.

Although it would be awesome to eventually have a natural recovery, continuing to wait brings more and more potential complications – cold and flu season (Jo’s counts are not high enough to get a flu shot and Dr. Alvarez wants her to avoid getting a cold if any way possible), iron overload from the transfusions and other difficulties that can come from ongoing transfusions.

On November 16th, Jo will have another bone marrow biopsy. She has had 3 already (one in Denver, one at the NIH and one at MD Anderson), and all 3 have shown similar results. A couple of weeks ago, Jo’s MRI showed some very soft areas of bone in her pelvis and her lower spine and this biopsy will be a very directed attempt to get some bone marrow from one of these isolated areas in an attempt to explain the MRI results.

Jo’s platelet count was 37,000 today and her last transfusion was one week ago. She normally gets transfused when they drop below 10,000 (normal is 150,000 to 450,000). If she makes it until next Monday before she gets another transfusion, it will be her first 2-week stretch between transfusions since having the baby. Jo’s level of transfusion dependency appears to be one of the primary factors that Dr. Alvarez watches.