Rick Update 11/20

Greetings…Today Rick and Becky went to UCSF for a follow up appointment. We had considered cancelling the appointment as none of the siblings blood work was going to be available for review. In the end we decided to go. It became very clear from the beginning of the appointment that Dr. Linker was not pleased with the most recent tests and control of the disease. Rick’s Sweet’s Syndrome began returning as of Monday, along with a downward shift in Rick’s overall status, which are indications that disease (Myelodysplasia) is in fact not under control. The doctor had hoped for a better response from the previous chemo: he wanted to see the blasts in the bone marrow drop, did not want to see the return of Sweet’s, and to see an improvement in the blood counts. The most recent bone marrow biopsy indicates that the blasts have remained constant since August. The percentage of blasts in the bone marrow are an indication of the advancement of the disease towards leukemia; therefore the most recent tests indicatethat the disease has not progressed. HOWEVER these results are open to interpretation, and at this point,Dr. Linker feels more comfortable re-running the biopsy and reviewing it himself for determination of blasts.

Dr. Linker stated more than once, that “we are in atight spot” between transitioning to transplant and taking a more serious and aggressive approach, such that Rick would be given a “Real Leukemia Chemo”. This treatment would bottom out all of his counts, he would become VERY sick such that he would be hospitalized for at least 4 weeks. Dr. Linker ruminated a lot on this issue, weighing the options, and what the best course of action would be givenRick’s current state. Because of the invasiveness of this Chemo and how rough it will be on Rick, there was a lot of time spent thinking and processing which is the better of the two options by Dr. Linker, “Would I rather take my chances on helping versus hurting you with the chemo OR sending you into transplant in not very good state?” Things will either go really well,the disease and symptoms will be under better control, and Rick would be in a better place for the transplant, OR as with all types of serious chemo,there is a grave possibility that things could go very wrong. Ultimately, after 45 minutes of going back and forth, (it was clear that Dr. Linker was hesitant to go this route because of how invasive and rough it will be) it was decided that Rick would be hospitalized today and that the aggressive chemo would commence. After reviewing the audio tape of the appointment (Thankfully Emily has her hand-heldrecorder from her days collecting data!) Becky and Emily believe that Dr. Linker choose this course of action because Rick is not currently in a good state and that doing nothing would only continue the decline, fearful that ultimately he would no longer be a good candidate for transplant.

We went over there today not sure of what to expect,Rick has the clothes on his back, literally, and that’s about it. He is at the Moffitt hospital of UCSF and currently does not have phone access, the phone in his room is broken, and the cell phone is off as he does not have a charger. We are expecting Tori to arrive from the East Coast sometime next week so that we may be together. This very unexpected turn of events has taken us all by surprise. We are all nervous and anxious, and now, more than ever, we ask you to keep our family in your thoughts and prayers as we begin this sudden and unexpected journey. During this time of giving thanks, give thanks for what you have and the blessings that come each day.

All our Love,

Rick, Beck, and The Girls