A Birthday We All Hoped For

Hello to Madison's friends and followers, 
I was able to transition Madison's Facebook page to a remembrance page: nobody can log on to or ever hack her account, and the FB birthday reminders stop to all FB friends. While she would have been 23 today Sunday, it's not necessarily an easy reminder for some, so whatever your connection is with Madison... what if anything do we post on Facebook?! Fond memories or pictures are all okay, and it doesn't have to be on a milestone like her birthday. I find it cathartic for me to write to and about her. 

The Color Run 2018: Madison's friend Julie sent me an email recently. There's Color Run planned in Thousand Oaks this year, link here. Cool! I have such fond memories of the 2017 run, story and pictures here. Madison's physician Peter and her nurse Jan surprised her too! Jan RN took a bunch of pics, link here. Being with her CSC peeps was so special to Madison and a very funny story for me. Madi insisted on driving up with them, but she wanted a parent to be up in Ventura lurking in the shadows in case these was an onset of pain. Cool...she knew we'd play whatever role she wanted, and mums and I wouldn't have to worry with one of us -not- being there, despite her doctor and nurse present... that Madison didn't know about. As luck would have it Jan RN played the role of Paparazzi and the pics are forever treasured, thanks Jan!

Chordoma research, a bit about that: the couple of very promising things to report from the Chordoma Foundation. There is a new $1.5M initiative to jump-start research for the type of disease that Madi had, poorly differentiated chordoma. $1.3M was donated from three families of young children who have same ludicrously rare subtype that Madi had, one in 20 million. This initiative is expected to launch at least one clinical trial for pediatric patients, and will also help to guide subsequent investments in this specific drug development. More about understanding chordoma in children and young adults at this link... you might recognize a picture or two... the first fish that didn't get away (that did when she released it : ) 
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The Mother's day gala at Dale and Colleen's last week was a huge success, a huge thanks to both of them, and to Steven, Anthony, Jim and anyone else who helped put that together, it was truly amazing! 19 mums even received a take-home floral arraignment! Angela and I saw some friends that we had not seen since before Madi's passing, which is always touching. One gent stared unblinkingly in to my eyes telling me that 'she's in a better place' and 'no longer is living in pain'. What I said was "thank you", but what I was thinking was that her place should be here with us, and her pain was so well managed that you don't understand. That said, he had the best intentions in his heart. It's times like these that I feel like trumpeting my pride, and walking people through her final months. Prior to this journey, I may have said the same things to me with the purest of intentions... but I'm not buying this as part of His plan. As a pastor in a hospital once told me "we know there is sin in the world, but disease and tragedies are indiscriminate (so no, all things do not happen for a reason IMO). Another interesting observation last Sunday... a few people asked Angela "how is Chris doing?" Michael (Madi's step-dad) likely hears the same questions about Colleen's well-being. (Apparently we're not expected to be completely forthright :-) Huh! I can't yet convince Angela to make stuff up. So, if you ever ask Angela or Michael how mum or dad are doing and the responses are wild patterns of concern that will hopefully decrease in intensity and duration, step back and consider this: we really are mostly okay and the exotic behavior may or may not be factual. 
On Friday Colleen shared a couple of her favorite recent pics of Madison. In one, you can see why Bailey was continually insistent on being on her human's bed. The other was a selfie: You can only imagine the noises that comes out of a chubby bulldog that has a flat face, and can see it in Madi's smirk, classic!

Pssssst, hi Shug! I'd be remiss if I didn't tell you that I'm thinking of you today... everyday, moms do too. Despite the fact that you were born on a May 20th, it would seem silly even suggesting a 'happy birthday' wish, but it is impossible not to celebrate you. We miss you and are so proud of you on so many levels. 

Love,   
Dad