Tuesday, January 5, 2010

We're On Our Way To Minneapolis!

Daddy and Bella at Uncle Steve and Aunt Dina's

Pack your parka, baby! Oh - wait - we don't own parkas living in Southern California!

We are packed and hanging out at grandma's house, ready to hop on a plane first thing in the morning. We head off to Minneapolis by way of Chicago for a consultation with Dr. Wagner at the University of Minnesota Bone Marrow Transplant Center. Check out this Providence Story of the day...

We had been planning on staying at the Ronald MacDonald House in Minneapolis, but the way the RMH works is you get your name on a list, then call the day before to see if there is room. Well, I called today and they informed me there was no room at the inn. So, I remembered that in one particular email from U of M, there was a link for accommodations. I called the phone number, and a kindly gentlemen gave me the info on two hotels that give a discount for patients and their families. One is the Radisson University Hotel. Turns out the Radisson is closer to the building we will be going in on campus than RMH. RMH is a 6 block walk, while the Radisson is diagonally across the intersection from the building we'll be in! Then, while on the phone with my childhood friend Logan (who works at the medical center), he explained that there is a tunnel that connects the two buildings! We don't have to even go outside to go to the Doctor appointment now that there is no room at RMH!!! Grandma and grandpa informed us today that the temperature in Minneapolis today was -9 degrees. 6 blocks in -9? NO THANK YOU!!!! Boy I am GRATEFUL there was no room at Ronald MacDonald!

For a review, we are going to consult with Dr. Wagner regarding a clinical trial at U of M for kids with RDEB. They are using stem cells via bone marrow transplant to grow healthy skin on the patient. The trial involves a 100 day stay up there. 7 children have undergone the procedure, 5 made it all the way through. The other two passed away. Bone Marrow Transplant (BMT) is an incredibly intense procedure with a 40% chance of lethality. Most people who are considering a BMT are cancer patients for whom the main 3 treatments aren't working i.e. radiation, chemo, and or surgery, and it is usually a last resort. 3 EB kids have passed away since Christmas Eve alone, and since there currently is no cure for EB, BMT ultimately comes into the equation.

There are pros and cons to going through this procedure. The obvious pro is that if it works, Bella would grow Ali's healthy skin on her body, thereby reducing the chance of her succumbing to this bizarre condition. The big con is that Bella could die from the procedure itself. Also, the research team is tinkering with their research model with each patient. So, you can't look at any of the prior patients as a baseline for what to expect. Every patient is essentially n=1 because to my knowledge, no two patients have undergone the exact same procedure. Combine this with the uniqueness of each case of EB, and you have a pickle for anyone who wants to do good, rigorous research.

We knew that Columbia University has just started a reduced intensity BMT for RDEB patients, but word came out recently that a handful of other facilities are beginning clinical trials for reduced intensity BMT as well. We are planning on going to Columbia to meet with their team, and we'll see about the others. Because Bella's severity has been called "mild" by two within the EB treatment world, the full intensity of a BMT may not be worth the risk associated. We'll see. Anyhow, we're planning on going to NYC in February to shop for the best fit for Bella.

We want to hear from you! We miss the interaction. We're almost done with edits on Bella's book, and one of the great parts of it are alllllll the amazing comments you left us in the first few months. Let us know how you are and that you're still here with us. You are 2/3 of our support (Friends, Family, and Faith), and we are grateful to have you. You'll be with us as we travel to find the best care for Anabella that's available.

May 2010 bring you all of your dreams and wishes!

Blessings, and good night.


  1. Very exciting news, I hope it all goes well. I don't know anything about EB, but I'm surprised that you've been told by two Dr's that Bella has a mild case.
    Elizabeth, CA

  2. Tim...
    I did something I probably should have never done.
    I checked out the blog that your wife posted on her FB. Baby Leah.
    I seriously sat there and cried and cried.
    I cried for that family, and for you, and for the other blogs I clicked on that were linked from hers.
    I have always been in awe of your strength and how you and Ang are so positive and, well, frankly, brave.
    I am no medical professional, but I do see how Bella's case would be considered "mild", compared to the other babies that I had a chance to "peek in on"...
    Please keep us posted, on the good, the bad, the scary, the amazing...
    You are always in our prayers.

  3. I hope had a safe trip to MN.

    I have a very urgent question for you. My little Niece has EB and she needs a G tube. I wanted to ask where did Anabella got her G tube. We are located in Virginia and need a closer facitlity than Cincinati. Is it all possible for you to contact me at 703-347-3337 Please.

  4. Wishing you all the best in frigid Minneapolis (my almar mater!). I love the city and know you will be embraced by all there. Thinking of you daily.
    love, Terri