Beanie's Blog: Ups, Downs, and Thank Yous

For a slight change of pace (and certainly a decline in quality), this evening's blog post is brought to you by Dan instead of the always wonderful Jen.

It's been a dramatically up and down week. If you're reading this, you know the adventures that Selene has already been through, and we're still learning more about the challenges that we have in front of us. We're also blessed to have time with some of our family- we are down in OCNJ with my Uncle Paul & Aunt Jane, my parents, my siblings (sans Matthew), my cousins Josh & Hannah, and a few fun sightings of other family (thanks again Aunt Mary & Uncle Frank!). Even in the midst of all this, we're trying to realize how great we truly have it- times spent laughing with family and making snarky Olympic-related comments don't happen every day! We even had a chance to get Selene flying a kite- it was the happiest we've seen her in quite a while. She also was MUCH better at it than I was...not a high bar.

On the medical update side of life, we kicked off all our medications this week...and they're nasty. 2x a day of steroids (we think the 'roid rage kicked in today- and she already was a lil feisty!), Zoloft and Zofran as needed, and a daily dose of a very potent drug called Imatinib as the cornerstone of the medication party. The problem- Imatinib seems to have a flavor somewhere between cat pee and battery acid, so Selene really seemed to enjoy the first round of it today :-/. Tears, pink lemonade, 2 Oreos, and promises of ice cream limped us thru the 30 minutes it took to down the 100mls required. It's going to be a struggle to figure out how to make this a little more bearable. PT is also kicking off on Monday, which will certainly be it a treat :-)

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I stole the update duties from Jen today not because I'm particularly eloquent but because I have been so touched by the outpouring of support that we've received over the last few days. We have received notes from family, friends, coworkers, long-lost colleagues, community members, and more. Even as I struggled with what this all means and how we can keep pushing through, we received so many kind comments and well wishes. Just a short set, to set the tone:

"You'll push through this- ya did last time, this'll be no different!"

"Stay grounded in faith- you and your family are constantly in our prayers."

"You & yours are in my thoughts and prayers"

"Your family will always be there for you- we'll drop anything to support you and your kids."

"Selene is one strong fighter and will beat this too!"

"Ask anything- never feel like you're a burden."

The crazy part- this is just a small subset of the outreach that we have received. I am typically inclined to play things pretty close to the vest and try to hide how I feel about things...but I don't know where Jen and I would be right now without all the love and support we've received. To everyone who has reached out, shared their support, gave a hug, had our backs- it is appreciated more than we can say in any form or format.

As my wife so appropriately said two days ago, and as a friend I've not spoken to in a few years reminded me, all we can do now is have faith in God's hand and His guidance for our absolutely amazing doctors. There's a reason that we felt called to stay in this area, to do our best to honor what He would want for our family, and to continue to build our lives in this area. We are encouraged by everyone around us, and are excited to continue to work with amazing people to support Selene's health.

And now, what you really actually came for- the cute pictures of the kids. Much love to you all,