Thursday, April 14, 2016

More of The Same

After deleting the post explaining the crazy medical treasure hunt we've been on, I thought I'd leave a few educational nuggets here in its stead.

This ARTICLE talks a little about Dr Burt and the procedure. And highlights some of  economical benefits of HSCT has as well.

Dr. Burt does his work in Chicago now. We have applied there, along with all the other clinics. His procedure is different from the one they are running out of the Hutch here. The Hutch is following the BEAM protocol, if you're curious. Florence also does BEAM. Dr. Burt's does not ablate the bone marrow cells. Or as the HSCTers refer to it, it's non-myelo. So its is less arduous, has a faster recovery, and you might not need to re-immunize for all your childhood vaccinations. However, occasionally patients might need an additional dosing of a chemo drug within the first year if there is any disease activity. To rule out this potential possibility many people, me included, try for a clinic offering the BEAM protocol. BEAM has  shown to stop progression immediately. The non-myelo does achieve this as well, but a bit more slowly. I think at about the 2 year mark they are even? But don't quote me on that. Or on any of my spelling of big medical words ar terms. I think I have finally gotten the letter order for HSCT down, but sometimes I still slip.

Seriously, it has been crazy chasing down all the information the various clinics want/need. I don't see how anyone without a Shane on their coordinating/technical team ever successfully apply anywhere. If left only to my own devices, I would have just cried and given up the time I unscuccessfully tried to burn images onto a CD. Or was it  a DVD? I don't know, because Shane did it all. So of course it all worked.  In my acceptance speech I will certainly give him all the credit he deserves. I am still waiting until all the acceptances come in to write it though.

Like I said, Russia will take me in a couple years. Germany says 'Nicht!'. As did The Huch, all three times I begged. The Philipenes say 'yes', or 'si' because most people speak English or Spanish in addition to Tagalog. And we are still waiting to hear what Florence says. And Chicago. Everyone said apply everywhere, take what you can get. So we did. And we will. As soon as all the si's and yes's come in.

Actually Chicago says I look good on paper so they might invite me to come down for a visit and then they would give a final yea or nay. The upside to Chicago is it is not on the other side of the world and insurance might cover the procedure so we would not have to indenture the kids for a year. Good thing we had six of them if we end up going to Florence. at $1500 a plane ticket we migh rethink the whole family vacation thing. And it looks like they suggest you plan on staying about 3 months.

And Italy wrote back this morning they would like me to set up a Skype call with the doctors there  next week. I read it after Shane left for work so I squealed then called him and asked him how I'd do that, I think I have a Skype account but I don't know what the name/number is? I had forwarded the email to him and he already set up the video chat with them. Video chat!!? So I  immediately hung up and stated preparing. First I called the salon and made a hair appointment.  And now I';m making a list of all the questions I might have. And trying to think of how I'll keep the kids quiet for an hour and would it be weird so have Shane on the call too? He's really cute and much better spoken so they might appreciate it, but maybe they'd like to see if I can manage on my own or not. And would that make me more or less likely to get in? Pity points? I'd take them.

Too many thoughts to get through. Good thing I have a week.

Also in preparation, Shane and I went last week to meet with a hematologist here. Though the Hutch did turn me down, the coordinator was super nice and sent me loads of links to studies being done by other facilities and suggested I start working with a hematologist here for follow-up care in the event I end up going out of country. So we met with Michele and  she didn't think I was crazy  but offered her support and services for anything we might need.

 Just to show our lives are not completely consumed by medical stuff, here are the babies, as everyone calls them, on Holy Saturday. I really liked Malachi's thoughtful stare. And his fancy duds.

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