Monday, February 7, 2011

February 7, 2011: Last day in the tundra...


Man, we don't leave till tomorrow and we already miss this place.  Minnesota is so awesome.  We feel so on-purpose here.  The types of meetings and conversations we have been involved in with MMF, CCRF, PUCK, Dr. Wagner, and Dr. Tolar have been nothing short of SPECTACULAR.  We are so impressed with everything they are doing here.  We feel so at home.  We learned more about Drs. Wagner and Tolar this trip by getting to spend 2+ hours with each over meals.  We never got that much uninterrupted time with either as patients, because you usually don't spend that much time with your doctor.  Plus, when Bella was a patient, the conversation was very 'in the trenches' as it pertained 99% just to her condition at the moment.  Now, we are working strategically as opposed to tactically with the two and in this context, we have really gotten a deeper glimpse into each man.

They are geniuses.

One of the things we want to hear from you all is what questions and / or concerns do you have about the EB program here at the U?  We want to get your questions answered and your concerns handled.  We feel like there has been some amount of message out there, but tell us what still is a mystery / doesn't quite make sense / etc.  If you have a question, chances are someone else does as well.  The questions aren't to be directed to us as parents.  What questions do you have about the program; that is specifically what we are looking for right now.

Thank you.  Please.  Comment.  Wanna support us?  Here's how.  Comment.  The more feedback we get, the more comprehensive we will make the new video we are creating that will act as a main and MAJOR fundraising campaign.  The more questions you have, the more we can answer in the video.

On a personal note, it was soooooooooooo good to see all our friends up here.  I feel like we got to spend some time with every single couple we connected with over the summer who live here.  THAT is no easy task, as any of you will attest to when you travel home for the holidays for example.  The only thing we didn't accomplish was a meal at PUNCH pizza.  I am sad about this.  However, I'd rather we had the time we had with PEOPLE over PIZZA.  I know.  I said it.  I chose people over pizza.  Pretty big of me, huh?  Seriously though, thank you to all our Minnesota friends for accommodating our schedule and making it all work so we could all see you.  We miss you dearly already.  Somebody get married or something in, say, June or something.  Wait, now that Jeremy and Renee are hitched, you're ALL married!  Rats.  Well, we'll figure something out!

We had a wonderful dinner at Logan and Erin's tonight.  Erin watched Ali for us today while we had our meetings at the University. Then, while we were standing at the cross walk to get our car, I look to my right and who is standing there but Logan, on his way to the bus stop to take the bus home from work!  That is the second time I have run into Logan on a street corner near campus!  It was good timing for him as it was pretty chilly today, and he has a bit of a walk from his bus stop to his home, so we hijacked him since we were driving to his house anyway!  Our other friends, Mark and Lisa and their two girls, came over and we had a big ol' reunion.  It felt so good to be all back together again.  The kids had the best time, and Ali lost her first tooth right in the middle of it all!  Sure enough, her two front bottom adult teeth are coming in, and her tooth that has been loose for a few weeks now popped out!  What's the going rate at the tooth fairy?

God night.


  1. Still reading and thinking of you guys! I really don't know much about the program there! All I know is you took Bella there hoping for a cure. I'll be interested to see other reader's questions and maybe that will trigger some of my own. Safe travels home!

  2. Way to go Ali! The tooth fairy is cheap in my's two bucks a tooth. Hey, it was only a quarter when we were kids...
    Glad you all had a productive and jam-packed trip. It sounds awesome! Safe travels in the morning.
    Love, Jen

  3. Congratulations to Ali on losing that first precious tooth! I'm with Sara, first tooth is $5 minimum, lol! However, my youngest is now 15, and I'm sure the Tooth Fairy has raised her rates since she last visited our house...!

    I don't have specific questions about the program just now, but if any come up in talking to people about it, I'll be sure to pass them on.

    You have all my gratitude for continuing to share your self and your family with us, you are a source of so much inspiration! Your lives are so full, yet you take time to share in the blog, Angi reaches out every week while working full time, you are living life the way it was meant to be lived, with both feet in ...blessings on all you are doing!

  4. Beautiful pictures.
    Have a safe trip home.
    Always praying for you.

  5. Lol on the tooth fairy...I am cheap too and probably only did $1!! Get away with it when they don't know any better...2nd tooth $2, 3rd $3 and so on...haha! My son who is 13 just lost his last then the tooth fairy forgets and the tooth stays under the pillow for weeks!!!

    Have a safe trip home...Donna/NJ

  6. Glad it was a good trip! I haven't had coffee yet but here are a couple questions about the program:

    *is there as minimum or maximum patient age for the treatment?
    *since it's a study right now, are families responsible for cost? does insurance help?
    *what are some of the diseases other than EB that this treatment can help?

    Sorry if those are silly questions, I guess I don't know much about the program! Congrats to Ali and I'm sure the tooth fairy will be kind to her. Safe travels!


  7. So great to catch up on all the Minnesota doings. My question is, what other kinds of things can this research heal? Finally, I concur with the $2, per the Tooth Fairy's website (

  8. I agree with Sara...$5 minimum for her first tooth! :)
    Love all the pics in this post and so happy you guys had such a wonderful time. Travel home safely and hope to see you soon!
    The Vanderbooms

  9. I better chime in while I am sitting here...but I will think on this and let you know later if more comes to mind.

    My biggest concern is what changes are being made so the littlest ones have a much higher chance of survival? I know changes are in the works...wondering what they are. It seems the odds are against the younger patient...I just wish they had a better chance at it. Ok now that I am crying...I will be back later with more questions...I hope. :) Oh...I am also curious what other diseases this research will help fight. Ok another one came to mind...beside money what are the biggest challenges of research? And another...if you had the money long before we would see significant improvements in the way research is done? When do "you" forsee a cure? Do you see the future still using bmt or will it be "way different? Will children that are facing many challenges from the disease currently (I am thinking Tripp) have a chance? (I know patients have to be somewhat healthy....ok I think they do) See get me going and I just cant stop...and that is without much thought. Lets see if some time will bring more to mind. ;) I didnt read back through this so if it doesnt make sense let me know and I will try to explain. :)

    Denise WI

  10. Hello again to read your updates as we think of you often..Just a question for your list...Dr. Wagner/tolar has told us that they can give an individual risk assesment for each particular child evaluated..Like they go through your individual circumstances/condition and can give you your change of "troubles" so to speak in percentage..Just wondering if you knew if these predictions have turned out to be true to statistics. Have the ones they predicted to have a higher change of trouble had trouble and have the ones with lower predictions of trouble followed true? Not sure if that made sense the way I wrote it..Like did they give Bella a prediction as to her chance of troubles and did it hold true?
    Just wondering..

  11. Dawn in Canberra still thinking of you all and hold you up in my prayers.
    1--What is the success rate of BMT in children with EB?.If treatment is successful are the children cured or is it a means of improving quality of life?
    2--Is the funding for MN used to research a cure for EB and /or to improve BMT procedures/outcomes
    the answers to these questions will not effect my donations in any way,just interested. keep up the great work!

  12. -Do you see a cure for EB in the future or just a fix?
    -If it isn’t a cure…what will best case look like for children with EB?
    -What is your timeline?
    -Is 3 million enough for a cure or will more money be needed?
    -Besides money is there other ways people can help in the fight of EB?
    -Going off of what Dawn asked…the work you are doing with BMT is it improving techniques used in all BMT for children?
    -How much does age impact the BMT?
    -Looking at the BMTs of Daylon, Bella and Elle…similar ages…only one survived. Was the result impacted by the EB or would the results been similar in a BMT done for a different reason? Wondering if BMT is hard all across the board for their age “group” and wondering if EB makes BMT harder.
    -What types of testing do the children go through before getting a green light for BMT?
    -If a child is turned down for the BMT is there anything they can do to get the ok to move forward?
    -Do you see BMT as part of the cure for EB?

    So glad you were able to see those that matter to you while you were back. I am sure you will be glad to go home and thaw...I would love to come with and get out of the frigid weather.

    Sending my love to all and the sweetest of kisses for Ali.

    Denise, WI

  13. What I mean by fix in first question...a way to make it better not to make the disease actually go away?

  14. Ok looking back at my the bmt considered a cure? Or is that just a "fix"? What does the future look like for the children that have gone through the bmt? It varies from child to child..right? This is coming from my not knowing what the other kids that have gone through Bmt..not following their stories...I dont know fully how their lives have changed.

  15. Hi, dear family! So glad you've had a fun MN trip. And congrats to Ali on the tooth! Usually for the first tooth we give $2, and then $1 after that. But lucky Jackson (our 6-yr old) - he lost his first tooth on Christmas Eve when we were at a cabin in Oklahoma, and all the tooth fairy had was a $5 bill! YIKES!! :)

    I have a couple of questions about the EB program (sorry if I repeat any of the other posters):

    1) I don't know much about BMT - does it have to be a sibling (or other relative) match? Or can anyone be a donor?

    2) Are Drs. Wagner and Tolar focusing their research solely on BMT, or are they looking at other treatments?

    3) Is there a "point of no return" with EB patients? Meaning that even if BMT is successful, they might not recover from earlier EB damage? For example, sweet Tripp has had so much trouble with his eyes - would BMT be able to reverse any of that damage? (This may not be something that can be answered without more experience, but thought I'd ask anyway.)

    Thank you again for keeping us all aware and involved in this fight - I'm sure some days it's not fun to just open yourself up to your cyber-friends, but please know that we all love you, Ang, and Ali. And sweet Bella too :)

    Love from MN - oops I mean TX (we're having MN-like weather!)
    Laura (for Team A)