Our visit to Charm City

We had our whirlwind visit to Baltimore yesterday and our heads are still spinning!  Processing very technical medical information and trying to understand outcome data for experimental procedures is not an easy task.

We were lucky enough to have our dear friend Katy join us for our visit.  It's always a help to have another set of ears and another perspective when heading into a big appointment. Before our doctor's meeting, we bolstered ourselves with a little drink at a very shabby Baltimore restaurant.  Johns Hopkins Hospital (JHH) is a huge medical center with multiple buildings and thousands of workers/patients but it's oddly lacking in nearby restaurants.  So we experienced a little local color!

We met with Dr. Bolanos-Meade for an hour and a half.  He spent a lot of time with us, explaining the protocol, its successes and its unknowns, and his thoughts about Kevin's disease.  JHH only does 2 general types of transplants: a fully matched 10 out of 10 or a haploidentical transplant (using a half-matched parent, child, or sibling).  They will not transplant someone who has a 8 out of 10 match (as Kevin does), feeling it is not worth the quite large chance of mortality from the transplant itself.  The doctor feels these transplants border on "criminal" because of the 50% transplant related mortality rate and serious possibility of complications if you make it past the transplant itself.  It became very clear to us that the 8 out of 10 transplant was off the table.

JHH has had great success reducing side effects with their haplo transplants.  With their new regimen, they've been able to reduce the transplant related mortality to 5-10% (compare that with the 50% above).  They have also been able to reduce the risk of serious and deadly infections dramatically.  They are very confident in their regimen and it's currently being expanded to 25 other transplant centers in the US.  JHH has done most (80%) of the 200 haplo transplants in the US, so they are the place to go for this new procedure.  It also became clear to us that Kevin needs to go to a major transplant facility to have his treatment.  We've been treated very well at Cancer Institute of New Jersey, but it's time to move on.  

There's one huge unknown with this haplo transplant: leukemia outcome data.  This is a very new procedure, with very few patients who have been through this, so there is scant data on how well the transplant cures patients of leukemia.  There have been some small studies published, but there were from early clinical trials that tended to accept the worst case patients.  Other medical centers have larger data sets, but didn't use exactly the same protocol.  That's a big piece of the puzzle that's missing, but it's what you accept being on the cutting edge of medical science!

We asked the doctor to begin the transplant process for Kevin.  After we get insurance approval (which may not be a sure thing with this new procedure), JHH will send out blood test kits for Kevin's 4 haplo siblings.  They will also order additional testing for Kevin and whichever sibling is chosen as the donor.  The earliest Kevin will be back in for transplant would be 4 weeks, but it could take as long as 8 weeks.  Of course our concern is Kevin relapsing, so the doctor recommended restarting his chemo course as soon as possible.  

The transplant procedure itself is entirely outpatient, unless complications arise.  Kevin will have to visit their outpatient treatment center every day for 60 days for infusions, blood work, and tweaks to his medicine.  They require patients to stay within one hour of the hospital (we are 2 1/2 hours away), so we will need to find local housing.  If all is well, Kevin will be released to his local oncologist around day 60.  

So, it looks like spring in Baltimore for us! We hear the Orioles aren't that great this year (Dr. Bolanos-Meade says "they stink") but a trip to Camden Yards wouldn't be the worst thing in world.  And maybe we can locate some decent restaurants too! We'll keep you updated.