Weston's story

A letter from a recent grant recipient, Emily Robinett:

"There are truly no words to fully express our gratitude for the incredible generosity you have shown our family. We are still overwhelmed by the impact your gift will have on our lives; it is a blessing beyond measure.

Our journey with cancer is, unfortunately, not new. It has been a long and difficult eight plus years. Our son Weston was just seven months old when he was diagnosed with Acute Myeloid Leukemia in January 2018. He endured multiple rounds of chemotherapy and, just four days before his first birthday, received a bone marrow transplant in hopes of achieving remission. Tragically, he relapsed only 80 days later and was given no chance of survival.

But Weston has always been a fighter. We pressed forward through more aggressive treatments until he was accepted into a Phase 1 clinical trial in St. Louis. Our hope at the time was simply for more time with him. The trial involved immunotherapy and another stem cell transplant. During treatment, Weston went into heart failure and was intubated for a month, but he kept fighting. That trial ultimately gave us a miracle: a lasting remission that continues to this day.

However, the transplants came with serious complications, including Graft Versus Host Disease (GVHD), where donor cells attack the body. Weston’s skin, liver, and other systems were affected. We temporarily relocated to St. Louis again for over a year while seeking ways to slow its progression. In the fall of 2021, he finally stabilized on the last available treatment option, allowing us to return home. We even had a few precious years of relative stability and welcomed our daughter, Vivan, during that time.

In spring 2023, less than a year after Vivan’s birth, an accidental fall led to the discovery of a brain mass. After a year of monitoring, we found a world-renowned neurosurgeon in Memphis who successfully removed the tumor in August 2024. Weston experienced temporary paralysis on his right side following surgery; while much of his mobility has returned, strength remains a challenge. The tumor was identified as a rare angiocentric glioma. Weston now receives ongoing care through St. Jude’s neuro-oncology department, with scans every six months. Thankfully, there has been no regrowth so far.

This past fall, Weston developed a viral respiratory infection that progressed into bilateral pneumonia, leading to repeated hospitalizations. In December, his breathing worsened significantly, and he was rushed to the ER by ambulance. Within 24 hours, he was placed on life support. What initially appeared to be lingering pneumonia was actually a progression of his GVHD, which had weakened his muscles, leaving his diaphragm unable to function.

After much deliberation, we chose to move forward with a tracheostomy in hopes of eventually bringing him home. Weston spent 58 days in the PICU in St. Louis, followed by 46 days in inpatient rehabilitation, where he worked incredibly hard to relearn how to speak, eat, stand, and take steps.

Today, Weston uses a wheelchair and requires a ventilator 24/7.

Bringing him home has been a tremendous challenge. From securing private duty nursing care to upgrading our home’s electrical system, making accessibility modifications, purchasing a suitable vehicle, and covering essential medical equipment not covered by insurance; the financial burden has been overwhelming. Many assistance programs are unavailable to Weston because he is no longer in active chemotherapy, and GVHD resources are limited.

There were moments when we truly didn’t know if bringing him home would be possible.

Then we found the Stephanie Vest Foundation.

Your generous gift has lifted an enormous weight from our shoulders. It is helping us stay afloat financially, but more importantly, it has made it possible to bring Weston home, his greatest wish. That is a gift we can never fully repay.

We continue to fight to slow the progression of his condition and help him regain as much strength as possible so he can enjoy more of his childhood. Time together is something we cherish deeply.

From the bottom of our hearts, thank you for giving us that time, and for helping make Weston’s wish come true."

With deepest gratitude,
The Robinetts