Priorities

My name is Joan Smith, and I am sharing our story about my wonderful husband Jeff Smith. He was a great husband, loving father, and good friend.

In late May and early June of 2014, Jeff was having some difficulty retrieving words and staying focused. He was a lecturer at our church, and when he was reading during one of the masses, he was stumbling through his words. My family and I were not in attendance, but we did receive a phone call from one of the priests with concerns because this was unlike Jeff. On June 12, 2014, Jeff went to his doctor, and he had a CT scan. First, Jeff was diagnosed with a brain bleed and then was rushed to another hospital. He was diagnosed with a brain tumor after the second CT scan. This is when our daunting journey began. 

The neurosurgeon who reviewed Jeff’s CT scan was very concerned and informed us that he needed to perform surgery within a few days. Anyone who knew Jeff would not be surprised by his question to the neurosurgeon. He asked, “Ok, however, I have a mission trip with my church in a week, so can I have the surgery when I return?” Jeff always made clear his priorities, and they were his family, friends, and those in need first. We asked for the prognosis of this brain tumor, and the doctor provided us with the worst- and best-case scenario for having surgery to remove the brain tumor. If we chose not to do the surgery, according to the doctor, Jeff’s prognosis was not good. The doctor left the room, and we discussed what the plan of action should be. We agreed that Jeff would have the surgery. Jeff spent the night in the hospital and came home the next day to get prepared for the surgery. Now looking back, because everything happened so fast, and the doctor stating that he wanted the surgery scheduled, quickly having a second opinion did not even enter our minds at this time.

Fight Like a Champion

Jeff’s surgery was on June 18, 2014. According to the neurosurgeon, Jeff’s surgery went as expected, and they removed as much as they could of the tumor. We were also informed there were malignant cells, so there would be a need for chemotherapy and radiation treatment. Within a matter of minutes, we felt some relief that the surgery went well. Then hearing he would need chemotherapy and radiation treatment was concerning and frightening. We were numb, scared, and overwhelmed all at once. The next day after surgery, Jeff could not use his left side, and there was no etiology for this post-operative condition. He stayed a few extra days so they could monitor the swelling in his brain. When Jeff was ready to be discharged from the hospital, it was evident he could not return home and he would need additional rehabilitation.

Jeff was discharged from the hospital, and he went to an acute rehabilitation facility to receive extensive physical, occupational, and speech therapy. Our world was further shattered when Jeff went to his first oncologist appointment with his new oncologist, who informed us that Jeff had glioblastoma (GBM) grade 4 tumor. This information was not disclosed to us in the hospital after his surgery. The oncologist explained what GBM was, and we were shocked, angry, and so afraid of what would come next. 

The next step in this journey was maneuvering through the health insurance coverage. Once Jeff plateaued with his physical and occupational therapy, he was denied additional services and needed to be moved to a sub-acute facility (better known as a nursing home). It broke our hearts, and Jeff was devastated. Jeff had not even begun his chemotherapy and radiation treatment. The good news was his speech had improved, and he could easily talk and engage in full conversation. He remained optimistic and ready to fight this awful disease like a champion. We were all on information overload. I always had my notebook next to me to document everything that was happening so we could continue to give Jeff everything he needed to fight this aggressive tumor. The worst was that Jeff was still not transitioning on his own and was in a wheelchair.

Our lives were upside down, and we felt alone and unprepared for any of this; however, is anyone ever prepared? Here is this 54-year-old who, a few months ago, was running 3 miles a day on a treadmill and now is trying to learn how to transition on his own with the hope of standing and walking again. We had unanswered medical questions and concerns about what the future held for Jeff and his prognosis. The terrible journey has opened my eyes, as well as our children’s, to how doctors support the cancer/illness but not the patient. 

There are not enough programs to help with the financial support that families need to provide their loved ones with the appropriate quality of life they deserve and should receive. There were so many obstacles and roadblocks in our path. When services (physical, occupational, and speech) were denied by our health insurance, we became creative and found other ways to assist Jeff. Our family and friends rallied around us and raised monies for Jeff’s needs. We had an amazing team of family and friends. 

We did our own speech therapy, physical therapy to the best of our ability, and holistic therapy — thank goodness the cancer center near us still provided reiki services for Jeff. We were so fortunate to find an amazing holistic physical therapist who assisted Jeff with movement of his legs and arms. We bought an old handicap van, and I took Jeff to an acute- rehabilitation facility so he could go in a pool. 

He also found joy in going to weekly mass in our parish, and he was able to attend a couple of family celebrations outside the facility too. His friends from the Capuchin Youth & Family Ministries (CYFM) came to Connecticut to build a ramp in our garage so Jeff could get into our house when it was time to come home. We were able to bring him home in late August 2015 with home-health services during the day and myself caregiving at night. His prognosis was not good, but Paul, Samantha, and I wanted Jeff to come home for the last time. He went into hospice care in early September. Jeff lost his 15-month battle to this ugly and debilitating disease on September 14, 2015.

National Brain Tumor Society

Finally, our connection to the National Brain Tumor Society began in Jeff’s hospice room. My family and friends were helping us prepare for Jeff’s funeral, and they were asking Paul, Samantha, and myself what would Jeff want to be remembered for. His faith was so strong. For eight years, Jeff had completed a mission trip to Harlon County, Kentucky, with the CYFM to work with the less fortunate, so we created a scholarship in Jeff’s name. Jeff always told his children to find a passion and follow that passion. He was kind and caring and a selfless man. 

After some research, we decided to have monies in his memory donated to the National Brain Tumor Society. We read about all the good work that was happening and the endless support for patients and families with brain tumors. We knew in our hearts that Jeff would not want other people to go through what he did. We all just wished we knew about you when Jeff was first diagnosed.

Head to the Hill Event

After Jeff’s passing, I was following NBTS and read about the Head to the Hill event. I wanted to become an advocate for brain tumor patients, especially those who can no longer speak for themselves! I want researchers, companies, and regulators to know that all brain tumor patients, no matter what their diagnosis, deserve treatments that reduce their symptoms and provide them with quality of life. I watched a loved one deteriorate right before my eyes, and he did not receive the medical treatment he deserved. I attended the May 2017 Head to the Hill event. This was an amazing event. I was so far out of my comfort zone, but I have learned that changes cannot happen if voices are not heard.

Connecticut Brain Freeze

When I attended the Head to the Hill, I met an amazing group of Connecticut advocates supporting NBTS. My family and friends were so excited to participate in NBTS Connecticut Brain Freeze in March 2018. It was a wonderful event, and it was a privilege to work again with the group of Connecticut advocates.

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.