The Bear and the Butterfly
Lucas’ spinal fluid is clear and his CNS pressure was 26 which is in the range of normal. Monday we will have follow up appointments, more on those in a moment.
Many years ago (2009) , after I got fired from a job I hated, and before Erin and I had kids we traveled to Africa. I wasn’t working, and Erin’s boss agreed to a sabbatical for her. We had just gotten married on May 23rd, and decided to move back to Austin from Brooklyn and plan a trip to Mali, Uganda, Kenya and Tanzania. It was an amazing trip. We took a ton of video and made a short film about that trip that we posted on Vimeo. The name of the film was “The Bear and the Butterfly. “
I think about Lucas Bear, he is the real bear now and I have become Papa Bear. Mommy was the butterfly and she has morphed into Mama Bear, she even has a shirt that she wears around the apartment that says Mama Bear on it.
We are 5 now. Mommy, Dad, Lucas, Jack and Dylan. Everyone is their own character in this journey but is integral to its story. I will never forget seeing the children in Africa, holding Erin’s hand as we rode up the Niger river on a Pinasse, into the great wide Sahara, passing places like Mopti, Timbuktu and Gao.
We are so far from Africa. We are completely different animals than we were 12 years ago, but as our 12th anniversary approaches I cannot help but look back at this time in our lives, before the kids, before the careers, before the trials and tribulations, and before the cancer.
Lucas, Dylan and Jack have taught us so much. I am more gracious for them than any trip I have ever been on. I am more thankful for God’s grace than I ever thought was possible. I cannot wait to take our kids on little trips together, to feel the sun at different latitudes and the stars at different longitudes. For the 5 bears to grow together and support each other in love for the rest of our lives.
I send massive prayers to our community of support. Gratefulness for the richness you have bestowed on our lives and wishing all the Moms out there a great Mothers Day weekend.
Next Steps
Our team needs to make some decisions this coming week for Lucas “post transplant” regimen. What caused the papiledema ? They ruled out many things with the recent tests, those results were as good as we could hope for. We need to pray that the maintenance regimen does not create toxicity for Lucas. We need to pray that we can be together as the 5 bears in Austin, the cave we chose to cohabitate. But we also need to be grateful and graceful for the many blessings upon us and not get too far ahead of ourselves.
