Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Monday, July 27, 2015

A Brother from a Different Mother & 2 Year Re-Birthday!

Usually this is said figuratively but in Coleson's case, this takes a quite literal sense, in fact twins!  The highlight of our trip to Minnesota was meeting Coleson's Donor, Jacob and his family.  It is an exceptional experience and one that does not happen that often for various reasons.  We are so very grateful for Jacob and his family who were faced with the decision to help try to save a life of someone he didn't even know.  I'm not even sure what to call such a person.  Somehow adjectives like generous and unselfish do not seem adequate.  We call him our hero!  I'm not sure what gift we could give him in return other than a heartfelt thank you and to meet Coleson in person. 

Can't you see the resemblance?!
During the transplant, you may recall I mentioned a physic reading I once had where the physic said I was going to have twins.  Well I guess I don't have twins but rather a twin, genetically speaking.  Hopefully he inherits Jacob's height as Paul and I didn't give him much to work with in that category!  Also, we now have a new namesake for the J. in Coleson J. David.
Happy 2 year Re-birthday Coleson (July 24th)!

Peyton just can't resist climbing on RM
Finally one without climbing!

I can't believe it's been 2 years since Coleson's BMT.  We just got back from our annual tour of Minneapolis hospitals where Coleson had no less than 16 different "procedures" including consults, x-rays, surgery, labs, etc.  It is an exhausting and overwhelming week where you hope for the best of news and end up walking away with some mixed news.  It was no different for us this year... I will fill you in on all the medical details tomorrow as I want to share the positive aspects of our trip.  I will mention though that it is nice to see "old" friends.  Lizzie and Caleb were not able to make it at the same time this year but we got to see Brayden, Maddie, Tia and Ari.  We didn't get to see Maddie last year so it was nice to get to see her this year.    We celebrated at the RMH house on Bingo night so the house was full of people including 2 Hurler families who both have been there way to long.  One little girl failed transplant - never engrafted and had an emergency second transplant and the other family with fraternal twins, girl & boy, both have Hurler.  The girl is doing well but the boy is starting to reject his donor cells and will need another transplant as well.    Ironically the former little girl also is a fraternal twin but her twin is unaffected. My heart goes out to these two families as they are into the 200 day range already and their journeys are far from over. 
Ari, Tia, Brayden, Coleson
Peyton had a fun week bonding with Grandma.  Aggie flew into Minneapolis while we drove so she could play with Peyton.  Peyton is not one for Hospitals and to try to keep our Minneapolis trips as positive experience as possible for the entire family, Grandma thought it best they play.  And play they did.  We stayed at a hotel with a big indoor park/play center.  If you know Peyton, she is high energy and loves physical play.  She loves to swim, play at the park, gymnastics, dance, etc.  She played all day long at that play center and even most of the night.  Tuesday the hit the rides at Mall of America (Nickelodeon Universe) where she rode no less than 30 rides over an 8 hr. timeframe.  She even got Grandma on a roller coaster.  Paul, Coleson and I met them after our exhausting day (more details tomorrow) and for the first time since BMT, Coleson got to ride the rides too.  And he loved them just as much as Peyton!  Especially the Wonder Pets ride which he rode on 5 times in a row and had this same reaction each and every time! 
The next day they took it easier and played in the pool at the hotel and then after Coleson got out of surgery (Yes, another one bites the dust), we went to my Honeywell friend, Janna's for dinner.  One of her sons and his family was there and they have a little girl a year younger than Peyton so she was happy.  Although she and grandma had shrimp for lunch and for the 3rd time, she got sick a few hours afterward.  I am convinced she is allergic to shrimp now.  Thursday was all day at the Waterpark of America with Brayden and Ari and their families with the birthday celebration mentioned above at night.  Friday we met up with my friend Nicole and her daughter for a park play date and then to the RMH where my Minnesota Honeywell family donated, volunteered, cooked and served dinner.  Another awesome dinner served! 
We also stopped to see a dear friend, Karee Jo, who is in the hospital enduring another 20 rounds of chemo.  She was here in 2013 where she went through her first 20 rounds and a surgery to remove the tumor and half of her lung.  It returned 9 months into remission and she is back at it again.  This little girl defines the word, "tough" and the only time I saw her break down was when she was told she might not be released in time to make it to the One Direction Concert on Sunday.  Which she did and she got to meet them backstage.  We love you Karee Jo and can't wait until you are back in remission. 

I'll give you all the gory medical details tomorrow.  It's time I put my kids into bed!