It's official. We're going to do the stem cell bone marrow transplant at University of Minnesota this summer. We are looking at a tentative arrival date up there of June 10. We are excited, and don't want to even wait that long, but Bella's 1st birthday is May 27, and we want to celebrate it with our friends, family, and faith community here in Orange County that have done so much to help Bella reach this milestone (God willing).
It wasn't a hard decision to make, really. At first, there were things about both that we liked, but as the days went on, and we started sharing stories with other parents who also visited both sites, we realized U of M really have a grip on this and Columbia just doesn't yet. With time, they may, and we wish them all the luck in the world. We NEED multiple research teams looking at EB from as many different angles as possible to produce the major breakthroughs required to give so many hope.
There are three areas I like to check in with when making a decision: my head, my heart, and my gut.
My head told me that to use the phrase "reduced intensity" in the title of a research experiment is extremely incongruent with research language. It is marketing language. It implies a comparison... to what? To Dr. Wagner. Bad taste in my book. I sought the counsel of the medical director at University of California Irvine Cancer Center. I made an excel spreadsheet with the drugs and their dosages side by side. Columbia is using 6 drugs to U of M's 3. They are using more Busulfan than U of M. The medical director took one look at the sheet and said, "Based on the drugs and their dosages, I'd say they are both pretty intense."
My heart felt connected to the staff in MN... person to person. I felt more than respected as an equal, there was a level of respect given that exceeded what was expected in return in MN. In NY, The condescending tone of the day by 2 of the 4 (the two "real" doctors...) left me feeling less than, belittled, even.
My gut said that all the "coincidental" Providence stories to date... I mean ALL of them POINTED to U of M. Given that Ang's and my families are FROM New York City, you'd think there'd be some connection there. Nope. Not one. The pizza family really sealed the deal for my gut. There we were in Times freakin' Square and we're still crossing paths with MN.
Add to the equation the call I got from our insurance saying that U of M is a Top Tier Transplant Center in their book and Columbia isn't... hmmm. In addition, our insurance is going to cover airfare, lodging ($1,500 a month!), rental cars, and more because of their blue chip status. That's gonna add up over 5 months to quite a big chunk of change!
Last but not least, the U of M experiment is the only one approved by the FDA. Now don't get me wrong here. Usually, I trust the FDA as far as I can throw them, but how come Columbia is neither a Center of Distinction for BC/BS or FDA approved?
Finally I have to say this: I have heard a lot of complaining about why Columbia is so hush hush about their two patients, and why are the two families so quiet. Folks, go easy on the families. Remember that in American society, there is no such thing as privacy anymore. It has evaporated. Just ask ANY athlete, celebrity, or politician. Basically, anyone in the public eye for any reason is expected to be fully transparent, and if they aren't, well they must be hiding something. There is a difference between secrecy and privacy. We have lost the right to our own privacy. Just because it isn't a popular choice for those families to remain private, it is still THEIR CHOICE, so please honor it in the same way you would want your rights to privacy honored.
In other news, Bella's Dedication at our church was Sunday. It was AWESOME. The feeling of support there is so powerful. I have never been a part of a more supportive congregation in my life. It's like we inherited 27 grandparents, 14 aunts and uncles, 10 cousins, and 6 siblings. It's been such a blessing to be a part of Harbor Christian Church in Newport Beach. Go HCC!
Good night, and be well,