Prayer, faith, and community help a couple battle glioblastoma
Tonya and Melvin Miller (pictured above at the Progressive Baptist Church in St. Paul, MN, where he is the pastor) are fighting for Tonya’s life. Earlier last year, she was diagnosed with glioblastoma – the most common and deadly form of adult brain cancer. She had resection surgery in January at the Mayo Clinic in Rochester, MN, followed by chemotherapy and radiation to combat the tumor. Melvin and Tonya drove back and forth from the Twin Cities for the follow-up treatments. “I would drive to the moon and back for this woman,” he said.
“It was a methylated version of the glioblastoma,” added Melvin. This type of glioblastoma tends to respond to chemotherapy; however, new regions of abnormality appeared soon after the surgery. “We wondered if the cancer had worked its way through all that treatment,” he said. The Mayo team wasn’t sure how best to proceed, and Melvin wasn’t going to accept that as the final answer.
Doing research, asking questions
“I had been doing a lot of research and asking a lot of questions,” he said. “Through that process, I learned about laser ablation and then learned that the U of M has one of the best laser ablation providers in the country. I immediately reached out to Dr. [Clark] Chen’s office. He performed a biopsy on Tonya to get the tissue that has been critical for her treatment. It helped our care team at the Mayo determine what was really happening in that area of her brain.”
Neurosurgery Department Head Clark C. Chen, MD, PhD, can understand why many neurosurgeons wouldn’t want to perform a biopsy in this situation. “The area in question is quite small, and any technical imperfection could result in biopsying adjacent normal brain tissue instead of the target abnormality,” he said. “The unique technology and expertise here at the U of M enabled me to perform a biopsy with sub-millimeter accuracy and precision.” The biopsy confirmed tumor regrowth and during the same procedure, the regrowth was destroyed using laser ablation.
“The treatment was great in that it really hit the right area and addressed Mayo’s concerns,” said Melvin. “After they received the pathology report, they [the Mayo oncologists] were excited about it, feeling that it helped them. Tonya responded well and healed well. She was even talking.” Tonya’s tumor is on the left side of her brain, which affects her speech and some of her cognitive abilities, according to Melvin. She had a second laser ablation with Chen in September 2022.
“One of our doctors told us that you must stay five steps ahead in terms of understanding how to fight this,” said Melvin. He is Tonya’s most ardent supporter and the one trying to stay those five steps ahead. “Emotionally, it’s been up and down,” he said. “At the beginning, we cried a lot and held our breath during every MRI. We will probably do that for the rest of our lives thinking about what it might tell us.”
Tonya is doing better now. “She’s very independent; having to depend on other people is hard for her,” said Melvin. “There were times when she said she really didn’t want to live anymore. That comes with this territory. That’s where support from family and friends and from our church family comes in.”
Power of prayer
Prayer is important to Tonya’s recovery process. “We believe in the power of prayer and of God,” Melvin said. “And in the power of a community that wraps its arms around you. The major thing is to keep your hopes up. You find hope in those around you, those you love and who love you. There is also power in the routine that gave your life meaning before the diagnosis. We’re trying to reclaim that routine.”
To enable Tonya to return to weekly services, for example, the church team blacked out the windows of a sound room so she could be protected during the COVID-19 pandemic. “She wanted to come back to church and rub shoulders with the people she loved and served,” said Melvin. “It’s great being around people who love her and are praying for her. It means a lot.”
Tonya is very active in their church. “She is an amazing servant,” said Melvin. “She has knitted scarves and gloves for the homeless, wrote the curriculum for the youth ministry, volunteered in the daycare center, led the women’s ministry, and started a café in the church as a fundraiser.”
Joy and laughter
Another aspect of Tonya’s care is joy and laughter. “They are so important,” said Melvin. “Because she can’t communicate, I am constantly reading her facial expression to help her connect with the joy in her life. We watched a movie recently and she was cracking up the entire time. It was so great.” Melvin and Tonya also play card and board games with their family and friends, but he is careful to make sure they’re not beyond her current capabilities. “The worst thing you can do is give her things she can’t do,” he said. “I help her as much as she will let me. I want her to feel as though she’s accomplishing something.”
There are many things that Melvin and Tonya have learned on this journey. “Don’t look at this diagnosis as a death sentence,” he said. “I know it’s ugly and very scary but keep a positive attitude.” Melvin tries to act as a buffer for Tonya to help combat all the negative online information about glioblastoma. “You cannot read that every day,” he said. “You need a designated advocate. I am her rock. I give her the meds, I talk to the doctors, I read the articles, I fix her dinner. I am there every step of the way. To have some measure of success, you need someone to walk with you through this. She is about the business of healing, and I am about the business of everything else.”
Essential to recovery
From Chen’s perspective, Melvin’s role in Tonya’s recovery is as important as surgery. “It’s an essential part of the journey,” he said. “Going through this without the support of family and community is like being diagnosed with cancer and having no chemotherapy or radiation.”
Although it may sometimes be difficult, Melvin has learned that you need to reach out and accept help – and to take time for yourself as the caregiver. “We have a rotation of family and friends who come and help us,” he said. “That prevents everything from falling on me because it is a heavy load to watch your wife struggle with this. Sometimes, I just need to take a drive to get a cup of coffee and a donut so I can come back to it refreshed.”
Speaking with survivors
It has been very helpful for Melvin and Tonya to speak with people who have been through this, especially those who have survived. “We connected with a wonderful family who shared with us everything that they did,” he said. “It’s great to talk to someone, hear their story, and understand that they’re still thriving.”
Another of their doctors said to try everything – the conventional and unconventional treatments. “We are taking a multi-pronged approach to Tonya’s treatment and have done all the FDA-approved stuff – surgery, radiation and chemotherapy – and Optune® [a wearable treatment for glioblastoma that works by creating electric fields that disrupt cancer cell division], Vitamin C infusions, and a daily dose of melatonin,” said Melvin. “Dig into the best practices that are available … get into a clinical trial. Tonya isn’t in one yet because her last pathological report showed that the cancer isn’t growing.”
What the Millers eat has also become very important. “Nutrition and diet are a major part of fighting this,” said Melvin. “I’ve turned into quite the chef and make some great dishes using organic foods.”
Chen wholeheartedly supports the Miller’s approach to Tonya’s treatment. “Our understanding of this disease is incomplete – there are worlds outside medicine that can help our patients,” he said. “I think Rev. Miller is an extraordinary individual. For not having a background in medicine, he has acquired a level of knowledge that surpasses most physicians who do not treat brain cancers. And this knowledge is embedded within an extraordinary faith. That’s a powerful combination!”
Melvin advises families in similar situations to pray, pray, pray. He and Tonya have a special prayer they say every day – an adaptation of the serenity prayer:
Oh, God and heavenly Father, grant us the serenity of mind to accept that which cannot be changed, the courage to accept that which can be changed, and the wisdom to know the difference.
Accepting the change
“That’s important because we can’t change this new reality,” he said. “In your mind, it’s easy to go back to the way it was. We must learn to accept how things have changed. The caregiver’s depression is sometimes embedded in the desire to go back to the way things were. Maybe we’ll get there, maybe we won’t, but how can we find joy today?”
As Chen reflects on Tonya and Melvin’s experience, he has come to appreciate the impossibility of this journey without seeking meaning – to understand its relationship to something greater. “It is faith, whether seated in theology, philosophy, or spirituality that forms the foundation of this meaning,” he said. “I am so grateful that they are willing to share their faith with our community.”