Help Trevor and Family Through This Difficult Journey

Hello, my name is Ashley and my fiancés name is Trevor. We have three wonderful children, Luke(8), Hope(6) and Oliver(3) and I am currently 24 weeks pregnant with a baby girl. Starting in March, Trevor began experiencing debilitating headaches, falls and loss of balance, loss of appetite and he became unable to work. We took him to the ER two times and they dismissed everything as migraines.

At the end of April, we followed up with a neurologist and got an MRI done. The MRI showed that he had a 21 mm herniation of his cerebellum into his spinal cord area, blocking the flow of his cerebral spinal fluid. We were originally told that he had something called Chiari Malformation, per the MRI. By the grace of God, we were able to get in with a neurosurgeon very quickly on May 1st and she sent him to the hospital for emergency brain surgery due to severe hydrocephalus. She installed a drain to help relieve the pressure, which helped significantly. On May 10th she decided to perform his next brain surgery to install a permanent brain shunt so he would be able to get out of the hospital and to go about life again. He made it through the surgery and was released from the hospital on May 13th. When decreasing off the steroids after the second surgery he began to experience more symptoms. At the time we thought it was due to the Chiari Malformation and he was being monitored closely by his doctor. In the beginning of June, he started having more trouble with balance, very lethargic, loss of appetite and threw up a couple times before his doctor decided he needed to be admitted back to the hospital on June 7th.

They started him back on the steroids and discovered he had two small pulmonary embolism (blood clots in his lungs). He also began having high blood pressure and high heart rate. He was closely monitored and treated awaiting his next brain surgery for the Chiari Malformation. On June 19th he went in for surgery, during surgery the neurosurgeon found some abnormal tissue and did a biopsy. After surgery she informed myself, Trevor and family that it may be malignant (cancerous).

He was in a lot of pain after surgery and when waking up the next day he had some troubles walking but all in all he was doing well. After recovering in the hospital and two different rehab facilities he was able to come home after being gone for about 50 days. He was walking with a walker and had tremors in his right hand and leg. But he was powering through it all just to be at home with his family.

On July 17th, we received the biopsy results from the neurosurgeon confirming our worst fears. Trevor has brain and spinal cancer. He again had been weaning off of steroids at this time and he could still only walk with a walker. After getting off the steroids completely, he began to have decreased ability to walk, even with the walker, numbness on his right side of his body, slurred speech and trouble swallowing. We took him back to the hospital on Saturday and they started him back on the steroids. We did a stat MRI on the next Monday and were told that he needed to get in with Moffitt right away to begin treatment due to the growth of the tumor and how it had progressed.

On July 31st, we went to Moffitt and received even more devastating news. The type of tumor/cancer that Trevor has in the brain and spine is considered incurable. They wanted to do their own pathology on Trevor’s biopsy and come up with a treatment plan. At this time Trevor’s mobility has decreased significantly and the right side of his torso and down his right leg is numb and has little to no control over his right leg. His tremors have also progressed to his head and left arm/hand. With all of that being said we live in an apartment on the third floor with no elevator, making extremely difficult to come and go from the house, especially in event of an emergency.

On August 2nd, Moffitt called us to let us know his official diagnosis. He has a grade 4 diffuse midline glioma with a H3K27 M mutation AND leptomeningeal disease. They said BOTH are considered incurable and this will be what will take his life. They gave him a prognosis of 2-4 months if we didn’t do any treatment at all and with treatment they are hoping to get him to 10-11 months.

The treatment plan is to start radiation next week, daily for three weeks of boosted round of radiation. The doctors at Moffitt say the goal is to control the cancer rather than cure it right now.

At this time, our main concern has been our family and financial stability. Neither one of us have worked since May. I have been Trevor’s primary caretaker and with it being summer, I have had the kids with us full time. Any help that anyone is willing to give would be greatly appreciated.

I will keep everyone updated the best I can. Please keep us in your thoughts and prayers.

Thank you