Sunday, August 14, 2016


We are still here! We are alive and well and, dare I say, thriving!! It's weird to be in this place. It's wonderful to be in this place.

Making the decision to try Venetoclax instead of intense therapy to transplant wasn't easy. Mike and I didn't sleep for many days. We went back and forth, writing lists and more lists, lifting up prayers upon prayers.

Then Ava got sick and the decision was kind of made for us. We thank God for that. It's been a little over one week on Venetoclax and we couldn't be more glad that this is the choice we made for Ava.

Since I last updated we've been living like crazy. We went to the zoo, celebrated Ava's birthday with our Seattle family, blew bubbles, celebrated Mike's birthday, watched Jude poop in the swimming pool, watched the Blue Angels perform, had a perfect Seattle summer day with our Mercer Island family, visited Dr. Delaney at her new lab, blew bubbles, had communion with a slice of sandwich bread and red dyed water, snapchatted ridiculous pictures, played in an RV with precious friends, pranced around in our swimming suits, rode bikes in the same swimming suits (because is there anything better than that?), drove to Portland with Jude wailing the whole time, saw Auntie Jai, hung out with Jeremy Lin, played Astroids, flew kites, chased food trucks, and most importantly, we counted each day as a blessing.

A few nights ago, despite all this living, I broke down. "I want more," I told Mike. "I want years and years not just days and months."

This is the thing. We do not know how much longer we must tread. We do not know how we keep stepping forward.

We just know that when we look down, we are actually walking on water. It is a miracle we are standing at all.

"'Come,' he said. Then Peter got down out of the boat, walked on the water and came toward Jesus." Matthew 14:29

Come. He calls.
Yes, Lord. We follow.

Water is not easy to walk on. But it's not our feet that carry us anyway. It is God, Himself. And though the night is long, and our knees tremble at the weight of what we carry, and we are so incredibly tired, we know where we are headed.

Onward, straight towards Christ.


mingshu said...

Happy birthday, sweet Ava!

Jenzilla said...

It was such an honor to meet you and your family Ava! What a joy to celebrate you and what a brave, sweet, strong, amazing 8 year old you are. We had a blast, and can only hope that you all enjoyed it as much! What a fabulous idea for a birthday party - Thank you for coming and sharing that special time with us at Allrecipes.

You are in our thoughts and prayers from now on, and we hope to see you again sometime! Can we do that?

Jen Ingram and all the Allrecipeeps :)

Leslie Kelly said...

As Jen said, it was such a pleasure to meet your family, especially your sweet girls.

I am sure you've explored every option, but I do have a contact at St. Jude's Children's Hospital in Memphis. Please let me know if I can make the connection.

Sending my very best wishes and big hugs!

Leslie Kelly