“Together We Can”

Wyatt was a healthy and happy baby who rarely ever had any kind of illness, so it was a surprise that he had major seizures just 6 days apart. He was not quite 2 ½ years old in April of 2017 and we were stunned when a couple of brain scans showed a tumor in the optic chiasm. We were told that this type of tumor – an optic pathway glioma – is highly survivable and that there are treatments with relatively minimal side effects that are used successfully in many children.

After a couple of months spent “watching and waiting” to see if the tumor was growing, Wyatt had significant vision loss, so we initiated chemotherapy treatments. For 13 months, we spent almost every Friday in the CCBD clinic with our rambunctious, playful toddler receiving chemotherapy infusions. During this time, the seizures became more frequent; at the worst, he had 50 or more a day. Drug after drug failed to control the seizures and we saw increasing damage to Wyatt’s growing brain and cognitive function. Thankfully, a strict ketogenic diet led to total seizure control. By Wyatt’s 4th birthday in October 2018, the tumor was stable, his vision had improved, and he had no seizures. We took Wyatt on a Disney cruise to celebrate and he finally got to see the ocean and play in the sand! For a brief 6-month period, there was no indication anything was wrong.

At a routine scan in March 2019, the tumor showed more growth; whatever benefits we had seen from the chemo treatments were gone. A biopsy indicated that there was a specific mutation in the tumor, and Wyatt began taking drugs designed to target the mutation. The next routine scan, in September of 2019, indicated that the new drugs might have stopped the growth, but by October, Wyatt was having trouble with his vision again. We prepared to learn Braille and got ready to provide support to Wyatt at home, at preschool, and at day care as he learned to navigate the world with decreasing vision. For all that Wyatt had been through – the surgeries, the infusions, the sickness, and tiredness that came with chemo, the many inpatient stays – he never complained and was never afraid. He smiled and laughed his entire way through treatment, bringing joy and love to everyone he met.

On Christmas Eve, we noticed that Wyatt was having strange, involuntary movements in his limbs, which we thought might be some seizure activity that we hadn’t seen before. The next morning, Christmas Day, Wyatt couldn’t see any of his toys under the tree and he continued to have arm and leg twitches. His last Christmas, we spent in Children’s Hospital. An emergency scan revealed that the tumor had grown since September and was reaching areas deeper in the brain. The swelling in his brain put pressure on areas that controlled basic neurological functions, such as movement, sleep, eating, and breathing. For nearly 3 years, we had prepared ourselves that our little boy might be blind, but this was beyond anything we expected.

Over the next few weeks, Wyatt’s health continued to decline. He lost his balance, slept for many hours of the day, grew increasingly weak, had difficulty swallowing, and spoke in a whisper. It became obvious that more chemo was not going to be enough to help him, and we attempted radiation therapy. He made it through 3 days of treatment before he became too sick to continue. By then, he was unable to move on his own, see, speak, or eat…. but he continued to smile.

Wyatt passed away peacefully on February 1, 2020 in the arms of his parents and surrounded by family.

The tumor was donated for ongoing research in hopes of curing children like Wyatt.

Bee Like Wyatt is a Tribute Fund of The Morgan Adams Foundation

“Wyatt adored Transformers, particularly Bumblebee. His Transformers were all he played with for years, and he carried his Bee around with him everywhere – so much so that it has become his symbol. Many of his caregivers at respite care have gotten Bumblebee tattoos. Wyatt  was just so awesome and adorable, we want everyone to BEE like him – to treat each other with love and kindness.”