Holding pattern continues

"I'm just hangin' on while this old world keeps spinnin'

And it's good to know it's out of my control."

Those words from the Al Anderson song capture our lives these days.  We're holding on, waiting for a direction and forward progress, knowing we're doing all we can and leaving the rest to the doctors.  It's truly an exercise in patience and letting go.

Yesterday would have been the day Kevin got his new cells from his anonymous donor.  Instead, we spent the morning in New Brunswick, getting chemo.  His doctor has decided to restart his chemo regimen while we are waiting for a new date, in hopes of preventing a relapse.  Yesterday Kevin got 2 drugs, vincristine and doxorubicin, known among cancer patients as the "red devil." The chemo is bright red, like Kool-Aid, and causes an instantaneous metallic taste in his mouth.  Many chemo patients avoid red colored drinks after getting this drug and the mere mention of the name is enough to turn my sister-in-law's stomach (Maureen had this drug too, during her breast cancer treatment).  Happily, with enough pre-medication, Kevin seems to handle it pretty well and can still stomach red cranberry juice!

So, we are waiting to hear back from Johns Hopkins.  The transplant team will be reviewing his case next Tuesday and will make a formal recommendation to us.  Many transplant doctors, including Dr. Strair and many of the doctors at Hopkins are in Florida this week for a transplant conference, which is delaying some of our progress. We're hoping that Hopkins will send out the blood test kits for Kevin's siblings this week. 

Kevin will be getting another bone marrow biopsy (his 8th!!) and a CAT scan on February 23rd, to confirm he's still in remission.  Then based on timing, he may begin the first of 8 more days of chemo, 4 times a week for 2 weeks.  

In the meantime, we're hanging on!