June 7, 2011: Kyle's new life begins today...

Heaveno!

Thanks, Karen, for reminding me to write about Kyle tonight!  The next patient in the U of M BMT trial received his transplant today!  His name is Kyle Hicks.  He is 20 years old.  He is from Wichita, KS, a community college student, and in most ways is as typical a young guy as he can be... except for this thing... yeah, you all know, RDEB.  He only weighs 51 pounds and is is just over four feet tall.

Well today, as his mom says, is the first day of his new life.  Apparently transplant went phenomenally with Kyle sleeping a lot of the day.  Dr. Wagner changed the chemotherapy work-up for Kyle, and so far it has really lowered the side effects, which is GREAT!  Just hearing about transplant brings back some serious trauma, but to know that the doctors are still going at this a year later, and improving as they go, well, it makes the journey we went on not in vain.  (would that be vainless?  Never heard that one before...)

You can follow Kyle's journey by CLICKING HERE.

Here is a photo gallery of the ride home on Sunday.  It was weird driving back, since I didn't drive that way home in the fall.  Check out the sign that warns drowsy drivers to pull over... is that because caffeine is not exactly a popular item in Utah?

I am still so grateful we took the opportunity to travel the country and meet as many of you all as we could.  Meeting Jonah and Tripp was also so important to us.  Now that we are back in the rat race, I can't see pulling a trip like that off as easily as it seemed then.  What's funny about that is the fact that I could even plan a cross country trip, two memorials and three gatherings spanning 15 states over 7 days at that point!  It befuddles me now looking back.  I could barely get through the day.  I have NO memory of my sister and mom and mother in law packing our Ronald McDonald House apartment.  What was I doing?  Planning the trip I guess.  This is one of those times when the "Footprints in the Sand" story seems to fit really well.  It MUST have been God carrying me, cuz it wasn't me.

I'd also like to take a minute to thank Laurie Steiner from The Butterfly Fund for helping me reach my goal for the Children's Cancer Research Fund "Time to Fly" 5K run I am running in two weeks!  Laurie has been a staunch advocate for EB research, advocacy, and patient/family support and holds "The Buttefly Ball" in the fall up in northern California.  She donated cookbooks and a beautiful bamboo dress for Bella's Birthday Bash, and today, she made another generous contribution to our cause.  With so many worthy causes out there, and times still being tight on the family purse, I am continually amazed and grateful for the generosity of so many.  It inspires me to keep "shouting  from the rooftops," as devoted blog reader Jane would say all the way from Vancouver!  You are all so wonderful.

I'd like to invite you all to do something cool tonight.  If you have a blog, a website, a business, ANYTHING that you are passionate about... share it with us!  This is a community.  We genuinely know and care about each other.  Like Laurie says on her page, we all have so many choices when choosing who we do business with, why not support each other?

Okay, gotta run.  Got a meeting with Ang to start working on our portion of PUCK's strategic plan!  I took Ali to the pool before dinner and all I want to do is hit the sack, but in order for any movement, concept, business, entity to reach critical mass, a lot of effort needs to be expended at the onset.  That's where we are right now... hanging on that giant lever trying to get the boulder rolling.  Thanks for hangin' on with us!  With all our weight together, we get that ball rolling MUCH QUICKER than if Ang and I were hanging alone!

God night.