Well, this post may be the one that I had more time in my mind wondering how to write it as it reflects so many changes, frustrations, surprises, disappointments and new hopes…. As always, I’ll be very open with the situation so no “sugar-coating”
Let’s start with a summary of where we were last time : I was receiving treatment at Stanford Hospital in order to get my body in good conditions for the Bone Marrow Transplant. As you may remember the New York treatments where quite aggressive and affected my heart and lung capacity. This is the reason the Bone Marrow Transplant team had delayed (cancelled?) our transplant process.
A DOOR SLAMS, BIG TIME!!
Last week I asked my doctors team and Stanford BMT to discuss when would we be evaluating my status again and decide if I was ready for transplant. This is where the big surprise came : the Stanford BMT team said that they DONT WANT TO DO MY TRANSPLANT, not now, not ever…. and were not even interested on my numbers
I’m not going to discuss much on the reasons of this decision, what I could see is a combination of :
- Confidence : everytime I had a conversation with the BMT team about transplant, their chance % was smaller and the underlying message was “you can try but it’s not gonna work”
- Politics : BMT is a totally independent department that can take its own decisions independent of the doctors and very profitability driven ( a simple transplant is much more profitable that a difficult one plus gives you better success ratios in the rankings)
- Risk : Mine has become a very-high-risk transplant and it’s better and simpler to use that limited capacity for an easier/more normal transplant
- Personalities of some of the people involved who don’t believe I should keep fighting, and it would be easier just to wait for the end
As you can imagine these news were a BOMB to all our plans we had been working towards for the last 8 months since the transplant was decided as the best route. The transplant process is a very complicated 3-4 months period and we had planned everything to make as comfortable as possible. We had moved our house closer to Stanford, we live only 10 minutes away and we have a huge amount of friends and support network in the area. It was going to be VERY TOUGH but we wouldn’t be alone and close to home.
With this decision Stanford shocked us, and forced us to move to EMERGENCY PLAN looking for alternative Cancer Centers ( Los Angeles, Seattle… ) who may be ready to pick a “complicated case” in the middle of the process. And we didn’t even have names or introductions to work with… This was going to be an impossible task and of course my Leukemia was not going to stop and would not allow me to do much travel to check those potential centers for transplant
A WINDOW OPENS, A BIT OF HOPE!
Our doctors at Stanford had been on our side and they started looking too for options. And this is were Ryan Lynch, our Fellow Hematologist, mentioned he had worked at the BMT unit of the Cancer Center at Saint Louis ( Barnes&Jewish Hospital at Washington University) as someone who could be interested. They cover many of the complex cases of the central states, and they don’t have a policy of “only simple cases”. Just the opposite they have several trial programs trying more effective transplants to patients who are not in remission ( like myself ). They are not one of the top 5 centers in the country but they sit comfortable in the top 10 and seemed happy to take risks and fight with us!!
A couple of phone calls, more information on their transplant protocol, a conference call with the team and by Sunday we were on a plane to St Louis ( Missouri). Since then they’ve done all tests to verify that I fit into their criteria, and we have a combined plan of pre-transplant treatment and BMT transplant which should happen in January.
For us, everything has changed. We were ready to fight this battle at home next to our friends, but the “destiny” has forced us to go to the “middle of nowhere” where we know no one. No problem!! We’ll create ourselves a nice routine, meet new people, some friends have said they may visit, we’ll focus on the treatment and cross fingers that the innovations that this proactive team are testing can finally get rid of my bad cells forever!!