Ode to our doctors and Texas Children’s

On a typical Texas January morning, our family’s life took a jolt, you know the kind, the existential jolt. Our beloved 6-year-old son was diagnosed with Stage 4 Ewing Sarcoma.  Just like that, our lives took a jolt.

On that typical Texas January morning, our family embarked on an epic journey into the unknown. What is remarkable, is on that day our family also expanded by two members…so very intimately, so naturally and so suddenly. Two doctors, Dr. Okcu and Dr. Rhoades, strangers before this moment in time, became family.

Our journey together over three years was filled with aching sadness, but also, and more importantly, with unbridled joy, abiding faith and divine love. Our son, who took on the role of the family’s leader, forged the path of acceptance, magic and grace, as he adeptly and masterfully led the way for the eight of us – mom, dad, brother, sister, and our doctors…and his maltipoo girl, Daisy Joy.

Dr. Okcu and Dr. Rhoades allowed him that privilege and saw in him not a child, but honored him as a spirit who would carry his family to and through with his shimmering light and his graced wisdom.

I wonder now, how did they have the capacity to so beautifully allow our son to lead the way. They were brilliant, but humble in the face of the unknown wilderness of cancer’s utterly baffling course. They were flexible, but guided us with the reality of the paucity of treatments available and they were like us, prayerfully hopeful. They always advised us, using their knowledge, experience and known data, but they allowed sacred space for hope and all things unseen and miracles. Their compassionate role in our family only became clearer as each treatment failed and the options diminished.

When our son joined hospice, yet another Texas Children’s physician, Dr. Glass, joined the tribe and circle of love and devotion and nested with us through the days until our son crossed the threshold to the eternal world. She carried us so tenderly and reverently through it all.

As I reflect on the past three years of our family’s journey, I have many questions. You know, the existential ones. There is much that is simply a mystery and we are taking our son’s continued lead and forging the unknown life ahead with acceptance, magic and grace. We will seek beauty and joy as he did in each moment, and we will live with the questions until one typical Texas morning we live into the answers. Our family wanted to pause in praise to our doctors and exceptional nurses, and everyone at Texas Children’s who carried us and shared in our hope and our journey.   You are all family and this letter is like a love letter, an ode to you, for all you have done and given our family.  May you always know how you made one sweet boy feel so special and loved by your compassionate care and gracious hearts.

As for mom, dad, brother and sister, and of course Daisy Joy…we continue to take our son’s lead. His shimmering light and graced wisdom is shining strong.