Beautiful mommy and Ali at the airport this morning...
Heaveno!
Before I begin, please drop by Tripp's blog and give him and his wonderful momma, Courtney, some love and some prayers. Tripp's having a really tough time right now. Thanks.
Sunny California... a little less snow than JFK last week at this time!
Well, we're back in Minnesota! We flew in today. Nice uneventful flight. We were blessed to tip toe through the crazy weather this week. We are staying with our PUCK partners Lonni and Jay Mooreland in Woodbury, which is really convenient to the airport! It was like all of 6 miles to their place. Man, is there some snow on the ground in their neighborhood!
Tomorrow is a big day. I'll tell you more about it after. We are touring the new hospital, having a brainstorm session with the foundation, and going to dinner with Dr. Wagner and John Halberg, the head of CCRF, the Children's Cancer Research Fund. Lots to discuss.
It felt good driving out of the airport today, like I belong here. It is a weird feeling. It's going to be an emotionally powerful trip. I feel like I am returning to the battlefield in some respects. I'm not done fighting. We're not done fighting. Until there is a safer version of the BMT procedure, and until EB care can be more than just palliative care, we're in this. I know I make up unreasonable timelines and goals, trust me. Imagine what it is like for a doctor to take on an incurable disease and KNOW that they are going to lose patients along the way to the cure before they even begin. It would be reasonable for them to let someone else figure it out first. It would be reasonable for me to let EBMRF and DebRA take the lead on funding a cure for EB. I mean, just look at their websites! They are like the big leagues in EB. Who are we? Just a couple of sets of parents whose kids paid the ultimate price for a cure. NO stopping now.
"Be the change you want to see in the world." - Mahatma Gandhi.
God night.
I had just checked in on Tripp before here....heartbreaking. I pray for them daily.
ReplyDeleteWanted you to know this has been my emailing week. Oprah. ELLEN (again)...which else can we get?? I'm just worried my emails buried under thousands....how do I make sure its read???
Love your pictures on here...you are surrounded by pretty girls!
Enjoy the snow..Brrrrrr...
love from home..
There is something about Bellas pictures lately. They have been "getting" me. Somedays I look at it and it simply makes me smile. Others...like tonight...the water works start. Maybe tonights gets me because of Tripp. I was over on his site earlier (leaving love and support) and what they are going through breaks my heart. I HATE Eb and what it does not only to the kiddos but to the families. We need that cure.
ReplyDeleteI hope you brought lots of warm clothes...it sure is cold around here. I still didnt make the snow ice cream...busy working on taxes. With any luck we will make it tomorrow and I will give you a full report. ;)
Sending my love to all and sweet kisses to Ali.
Denise WI
You say it all so well, Tim.
ReplyDeleteWishing you joy and strength in MN.
I think of Bella extra strongly tonight. She is part of the link towards a better future for EB kids, of that I am absolutely certain.
From the rooftops, with much love to all of you,
Jane
oh my...I have not commented in a looong while....I'm still here...supporting you more than ever! Praying that your trip is safe and powerful.
ReplyDeletelove from home!
nicole & family
Welcome back to Minnesota:)
ReplyDeleteHi. I'm a music therapist specializing in autism. With all the reading I do on autism combined with trying to make the right decision for my own three kids, I have invested at least 500 hours into researching the vaccine issue. You mention a "safer version of the BMT procedure." I know vaccines are controversial, but I believe they really mess with kids' immune systems. My gut tells me that these kids would have a better chance of surviving if we were making their immune systems as strong as possible before the procedure instead of confusing their immune systems and loading their bodies with toxins. There is a family with an EB kid from Appleton, WI who has been in our local news - he is in MN right now getting treated. Strangely enough, my sister who lives in Springfield, MO has a doctor with a son with EB. This is all second hand information, but apparently he was the fourth kid to be treated in MN. He survived. From that source, I find out that the BMT procedure completely wipes out all vaccines/immunity and after they are recovered, they have to give the vaccines again anyway! If this is accurate, it seems like a no-brainer to me to postpone the vaccines until later. This has been on my heart for more than a month and I hesitated with sharing my opinion. Maybe it's inaccurate information, maybe the docs won't listen anyway, but MAYBE it will spark a discussion that will make this BMT procedure more successful. Best to you and your family. Kathy
ReplyDeleteWishing you all the best in this emotional trip.
ReplyDeleteLove,
Mariana
Havce an awesome time - it will be hard, wonderful, exhaustive, and emotionally draining I am sure - but you all are doing the right thing!
ReplyDeleteSending support!
Tina
Hi, sweet family...
ReplyDeleteGlad you have arrived safely in MN. Wishing you an enjoyable and productive visit there.
I love the Gandhi quote you closed with. That is the slogan for a new program we started 2nd semester at the high school where I teach. Our world certainly is in need of lots of changes. Hopefully more of us will embrace the idea of becoming that which we desire to see changed.
Take care.
Susan
A friend in NC
Welcome back to snowy MN
ReplyDeleteBarbara and AJ