Saturday, January 9, 2010

We're Back Home!

Well, we are back home from snowy, cold Minneapolis. We had a BLAST! First off, after you've lived in extreme temperatures ( like Phoenix ), extreme cold isn't any different than extreme hot. You know as you are walking out the door that you are about to be slapped with a temperature your body won't like and can't tolerate for very long without being properly prepared. The nice thing about the cold is you can bundle up. In the desert, you can't "bundle down" to cool off, you just dehydrate and burn to a crisp. However, in the desert, you don't have to shovel heat, either.

okay, enough about the weather.

On to... the GOOD STUFF...

We met with the good Doctor John Wagner. Here is his title off his business card:

Director, Pediatric Hematology/Oncology/ Blood and Marrow Transplantation
Scientific Director of Clinical Research, Blood and
Marrow Transplantation and Stem Cell Institute

The University of Minnesota has been doing Bone Marrow Transplants (BMT) since the sixties. They are the leader in the field, and he's the head hancho. His Curriculum Vitae is quite impressive, yet, he doesn't have the ego that you would expect. He's a researcher, and a teacher. So, when he explained what he is accomplishing in this clinical trial, I could see the wheels spinning in his head. He has a child-like passion for what he does. What does he do? In his words, "I cure incurable diseases."

That rocks.

So, we spent 2 hours together where he presented his results up to date, then answered all our questions. I had two pages of questions for him, but admittedly, when it came time for Q&A, he had already answered most of my questions in his presentation.

We talked about so much, it's honestly hard to recall specifics. Also, I can't talk about the results of the research as it is currently being peer reviewed for possible publication. What I can say is that we feel extremely confident in him, and in the U of M staff. He has broken into uncharted territory with his research. Don't go around using the word "cure" as it would not be appropriate at all, but you can say that his results have never been done before with an EB patient.

We told him we were going to Columbia U. to discuss their "reduced intensity" BMT clinical trial as well. He gave us a few questions to ask and shared his honest thoughts about their multi-site trial that has just gotten rolling. Columbia will get their moment in court to "sell" us on why their trial is better, but Dr. Wagner is really the guy they are trying to imitate. He knows more about BMT for EB than anyone on the planet, so they have their work cut out for them to convince us to go to NYC instead of MN. Having said that, we're adamant about going and doing our due diligence. Leave no stone unturned.

Metaphorically, I wish there was another way to rebuild the engine without having to strip it down so far. However, when Dr. Wagner explained that they have successfully done BMT on FETUSES IN THE WOMB because you can be BORN with cancer, I realized that it's simply a point on a line... a line of treatment where researchers are looking for new, less invasive ways to treat these diseases, but have yet to make the breakthrough that will ultimately leave this treatment in the history books. So many other breakthroughs HAVE occurred in so many areas, it is simply a matter of time. However, here we are NOW, and not 5, 10, or 20 years from now. Lucky for us we ARE here now, not 5, 10, 20 years ago, when there was NO chance for an RDEB kid to have a shot at living a "normal" life.

The trip was especially fun because we got to have dinner with one of my childhood friends, Logan Spector, who is a pediatric epidemiologist at U of M. He's been there for almost 10 years now and knows and works with Dr. Wagner. He invited us to his home and we met his wonderful wife and two children. We also met Lonni Mooreland, who is the mom of patient #2 of the trial. Unfortunately, little Sara passed away due to complications from a weak heart; a condition she had since shortly after birth. She and her husband, Jay, are the ones who have started PUCK, a charity to raise money for Dr. Wagner. Check it out. We will be partnering with PUCK with the release of Bella's book in the very near future. Anyhow, It was nice to connect Lonni and Logan since they both work with Dr. Wagner. Also, Lonni and Jay have moved to MN recently, so it's always nice to know someone new in town. The most tender moment of the night was when Lonni was leaving.

She said, "Thank you for inviting me, Tim. I was surprised you even wanted to meet me."

It dawned on me that she felt that we wouldn't want to meet her since her daughter died in the same study we are considering our daughter for. Somehow, it might scare us or remind us of the danger of the study. What I am reminded of is the sad fact that ANOTHER EB child passed away last week, bringing the total to 4 since December 1st. This disease claims its patients in far more ways than through experiments to find a cure.

I couldn't believe what Lonni said; that's the last thing I would think. Thanks to working on the Grief and Loss Retreat with my colleague Mauro and my Mom, I was able to quickly share with her how tough the grieving process is in our "afraid-of-death" culture. I was able to validate her experience and reinforce that the insane feelings she is having are in fact normal. It is our "feel-good-all-the-time-at-all-costs" culture that is totally insane. We are so completely cut off from the experience of death that we don't have a clue how to handle it.

She just looked at me, a little incredulously, as if to say, "You actually GET IT." Then, she said, "Thank you, I feel like I had some therapy tonight!"

By the way, U of M mascot is called "The Gopher." Wanna know why? Because just about the entire campus is connected by above ground skyways and underground tunnels. The farthest we walked outside the whole time was from the car to Logan's front door. No lie. Applebee's delivered breakfast to our door each morning. Starbucks was located in the lobby, and the hotel was connected to the medical center. Add Valet parking, and we hardly felt the sting of the cold. I did leave my Starbucks in the car Wednesday night by accident and here's what it looked like the next morning...

Ice coffee, anyone?

Anyhow. We feel great about U of M. If this is our path, it will probably happen this spring/summer. We don't want to wait. EB is too dangerous. Also, the younger the patient, the better the chances. This is our year! We know there will be much in store for us, but we genuinely had a good feeling up there in Minneapolis; a feeling that said, "We can do this."

Thanks for being there with us. We felt you.

Thanks to Grandma and Grandpa for watching Ali and Lucy as well as for donating their miles for plane tickets.

Thank you to Aunt Marie and Uncle Tom for their INCREDIBLE contribution.

Thanks to our friends at Harbor Christian Church for their generous contributions as well.

Thank you, God, for delivering us to and from MN right in between nasty storms. Thank you for Dr. Wagner, and thank you in advance for Betty Ann, the financial counselor at U of M, who will be getting full inpatient and outpatient approval for us from our new insurance provider (we pray!)

Friends, Family, Faith.

Always remember the Three F's. We are so blessed to be lifted up by all three simultaneously. That is not always the case in life. You are blessed to remember to lean on any one at a time, but three, we are very blessed, indeed!

God Bless You All,

Good night.


  1. Wow! What a trip - thanks for the update and the photos. Best wishes for an amazing 2010 :)

  2. that first picture is awesome :)
    she's getting so pretty!!!

    (and sorry I took over your Facebook status!)

  3. Love this post! Thanks for the update and for what you bring to the world. Your love and generosity just continue to amaze us! If you decide on U of M, please call. The Boschee family has a possible connection to a FREE place for you to stay.

  4. Good news! I'm so happy and hopeful for you guys.

  5. "When my mommy and daddy brought me home from the hospital I had this bad disease, then it went away........" Not sure if I got the quote exactly right, but God is certainly leading you in the right direction. Wishing you the very best of luck this year. Oh, and I agree with Sara, she is getting so pretty! Terri R.

  6. Tim, thank you so much for sharing. I look forward to what you're going to say about Columbia! Since Nicky is 13 now (the longest and hardest 13 years of my life without question) the reduced intensity seems very appealing. Like you said, the younger the better, so since Nicky is a bit older, I worry. I hope this cure didn't arrive just a little too late. Oh man... I can't think about that right now without choking up. {{HUGS}} and keep up the great posts!!

  7. Tim,
    I am so excited that the trip went well. Know that Bella and your dear family are in my prayers! Praying for a blessed New Year, one that is full of healing and God's grace.
    Many Blessings,
    Jason York

  8. Hi Tim,

    It was our pleasure to see you. If (when?) you come up here for transplant, we'll be here to help you every step of the way.


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  10. Tim, I am captivated by your family, especially Bella! What an incredible thing you all are going through! I hear the hope as well as some of the frustration that is certainly yours but I hear the joy of having her come through so much. I admire that you keep a positive outlook on what could easily be something to negatively obsess about. I'm sure your music therapy comes in handy. She sure is a darling! As well as you older daughter! You will be in our prayers. Cathy Powers