The Rest of the Story

More and more people have asked us how we found Jackie’s tumor.  I have told so many people so many parts of the story…. Let’s see if I can put it all in one spot so that I can remember.

It was the day after Christmas and I received a phone call from the oncologist at The Huntsman Cancer Institute.  He was calling me from his family vacation in Florida – on his wife’s cell phone because he didn’t want to wait for his to charge.  Hmmm, this cannot be good.  At the end of our call he asked what time it was in Washington.  It was 4:30 p.m.  “Good,” he said, “You have time to call your surgeon out there and get her in for a biopsy.”
Backing up.. last fall three more of my children were diagnosed with Li Fraumeni Syndrome.  I will explain that another time, but it essentially means that they are much less equipped to fight cancerous cells than the rest of the population.  The Huntsman Cancer Institute has a great genetics program, and a team that focuses specifically on Li Fraumeni Syndrome.  We learned about this because Mark recently changed oncologists and ended up with a doctor whose wife and children also have Li Fraumeni Syndrome… what are the chances??  It is quite rare.  He encouraged us to get involved at Huntsman and on November 11 we took these three kids for genetic counseling and MRI screenings. They called us a few days later to let us know that there were a few concerns with both girls, but David was clear for now.
Several weeks went by and we were busy with Thanksgiving, etc. so I didn’t realize that we hadn’t received our hardcopy reports.  I called in December and they were surprised to find out it had been set aside and not picked back up.  When they were preparing to send it, they found the report on this spinal mass that they had not seen before.  They were anxious, I was anxious, but trying to get in to our specialist at OHSU is a process, and it took much longer than I thought it should.  Jackie is our fourth family member to be treated by this doctor, but the others have been referred by local doctors with firm diagnoses, so the waiting was something new.
Anyway, when we were finally  in the system we needed a new and more specific MRI and a biopsy with dr. visits in between.  The biopsy results took three weeks.  Aside from being called the day after Christmas, all of the other delays had helped us to feel secure that this was no big deal.  I thought I would have to do some convincing for them to do the surgery as quickly as spring break at the end of March.  Even benign tumors should be removed from Li-Fraumeni patients, because it can all turn bad.  Not a fun surprise to get the call that it is a chordoma.  A surprise is the right word to use, however, because  these are very rare – estimated 300/year diagnosed.   Of those cases only 1/20 occurs in ages younger than 20. Jackie’s tumor is also in a very unusual spot – they usually occur at either end of the spine, then in the lumbar region.  Hers is in the thoracic region – T6, T7, & T8 (I think).  It is fist-sized and is pushing against the aorta.  It was hard to me to imagine how they would reach it…but I am pretty sure I have already explained that in an earlier blog.  Now I try not to imagine it.
Less than 24 hours and we will be in the thick of it…

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