Morning at the Mooreland's...
Heaveno!
... what a day!
1. Good talk with Lonni, our partner in PUCK this morning
2. Ali got to see Jerry, the house dog, at Ronald McDonald House
3. Ali got to spend the day at her old school, then get babysat by her old school teacher!
4. We got our comfort food on at Noodles & Co.
Inside of U of M Alumni Hall, where MMF is located...
5. Spent 2.5 hours brainstorming and creating with Minnesota Medical Foundation and Children's Cancer Research Fund
3/4 of the TEAM PUCK!
6. Toured the AMAZING new children's hospital
This is a PICU room... and that is a floating, rotating arm that can pivot around any side of the crib to accommodate the patient's needs... crazy...
New Standard rooms are 390 square feet and feature a caregiver zone, patient zone, and family zone. The patient has SO MUCH CONTROL of their environment in these new rooms. It is AWESOME...
Status Board in every room...
View of the downtown skyline from one of the rooms...
Check out the light show! The patient can light up this light strip however they want to control their mood and environment...
7. Had dinner with Dr. John Wagner and his lovely wife, Lisa, John Hallberg, CEO of CCRF, and our two top contacts at MMF at a beautiful restaurant in downtown Minneapolis.
We are BEAT.
There is simply too much to even try to share in long form. Suffice to say, U of M is THE PLACE to be. The new children's hospital is beyond amazing. We got to glimpse the future of bone marrow transplant as we know it during our strategy meetings today.
Folks, they are simply light years ahead. The procedure as Bella knew it is just one of three types of procedures that will be available to EB kids in the future. First, Dr. Wagner is changing the chemo regimen for the little kids in the study going forward. Second, there are two new ways of doing transplant that are COMPLETELY revolutionary that I can't even get into right now, but are minimally invasive and FAR SAFER than the procedure of today. I mean, it is a complete evolution from what is being done right now...
... when they get the funding to dig into it.
We feel SO MUCH BETTER about pouring our hearts and souls into the future of care here at the U of M. Here are some things you may or may not know about the Children's Hospital at the U of M:
They were the first place to do pediatric open heart surgery using hypothermia and cross-circulation
They were the first to do a successful pediatric bone marrow transplant
They were the first to use BMT to treat the skin; showing that stem cells contained in bone marrow can repair injured skin tissue
They developed the technique for transplanting kidneys in infants
They developed a breakthrough in treating cystic fibrosis
They developed a vaccine for Lyme disease
They led the trials of the Berlin Heart Device, which keeps kids' hearts strong while they wait for transplant...
I'm tellin' ya... this place ROCKS!
And, at the end of a really stimulating dinner discussion, Dr. Wagner invited me to come to D.C. and speak to the National Institutes of Health (NIH) in September!
I'll be there.
Creating some really powerful teamwork up here.
Exhausted, but FIRED UP over the future up here. We already can't wait to return. We feel privileged that we are WELCOMED to thrust ourselves into the middle of all that is happening up here. It really is exciting. The BIGGEST component of the night was when Dr. Wagner was talking about how what they are working on right now, and are simply waiting on funding to break ground on is not only going to treat EB, it's going to cross treat 2 other MAJOR disease populations that affect WAAAAAAY more people than EB. This is what I've been sniffing at all along. I KNEW this breakthrough wasn't just for EB. Sure, that's great, but in terms of SCOPE of IMPACT, we are looking far beyond just the EB community now for who will benefit.
Goooood stuff.
Tomorrow: sledding in the morning, and Renee's wedding in the afternoon / evening!
Life is good.
God night.
Hi Ringgolds! Glad you made it safely to MN (which looks strangely like TX these days!) Can't wait to hear more about the hospital, your meetings and the wedding.
ReplyDelete...and is there really such a place as Noodles & Co? That sounds SOO good!! :)
Love and prayers to all of you!!
Laura (for Team A)
Love this picture of our two sweet girls playing together.
ReplyDeleteI have such good and precious memories of this day of our families hanging out together. It was a great and special day!!!
Happy to hear you are having a good time in MN.
Love from the Ringgolds in AZ,
Paul, Heike and Liesel.
Is that Ali in her fave cupboard?
ReplyDeleteI am delighted that energy, enthusiasm and FIRE are the main components of your feelings as you spend time in MN. Memories can sometimes hang heavily, but I feel you have your priorities firmly in order - you are celebrating Bella's future and also celebrating your friends' wedding.
Sleep tight, all of you, wherever you lay your respective hats,
Much love,
Jane
Praying and thinking of you all!
ReplyDeleteHi Tim
ReplyDeleteI have a son with RDEB and am so excited to hear about all the developments happening in UM for EB. I was wondering would a sibling donor with the exact HLA as the EB child still be the better option for the BMT?
I got goosebumps reading this! Can't wait to see you tomorrow!
ReplyDeleteDear Tim: Just wanted to say Thank You and God Bless You for all you are doing for all the EB families. Someday there will be a cure and families will not have to say good-bye to their precious children. Thank you again my friend. Love and Peace Leah's Nana
ReplyDeleteSo glad to hear all the encouraging work being done at U of M. I agree with Leah's Nana that someday we won't have to say goodby to our precious children.
ReplyDeleteI, too, have fond memories of our family day in AZ with the two delightful baby girls.
Love to all,
Mom
Sounds like awesome things are happening at U of M! I came across your blog through someones...not sure who...anyway it is amazing to see the progress that is being made. Keep up the awesome work you are doing!
ReplyDeleteI read every couple of weeks, going back to catch up on what I have missed. I've never commented here.
ReplyDeleteSee, my daughter Ember died 3 days after her birth. She was born without some of her critical organs, and also prematurely. The entire time she was alive I sat and held her. I cuddled and snuggled and loved my heart out, and she was in no pain that we could tell, anyway.
I think of your Bella and I just can't imagine how it must have felt for you to watch a piece of your heart outside your body going through so much pain.
I feel as though nothing I have to say will be of any importance. I'm not going to pretend I know what you are going through, because I don't.
What I *do* know and what I *can* say is how your love for your family just bleeds from every post I read. Your commitment to finding a cure for EB is inspirational. I can barely stand to talk about Ember, and here you are sharing Bella with the world, and throwing yourself into making a better world for other people with EB.
Thank you for sharing, thank you for all you do, and most of all, God bless your sweet family.
So glad this is a fruitful and affirming trip!
ReplyDeletePrayers and hugs to all!
Tina in NJ