Life Before Illness
“My husband and I have always said we were meant to meet. It was the spring semester of our freshman year of college at a branch campus of Penn State. I remember hearing Tony’s big, booming laugh a few seconds before he walked into class the first time. I immediately took notice to the tall, handsome guy with amazing dimples.
We became friends, but that lasted all of three weeks before we had our first date where he cooked dinner for me. I hate cooking, and I was 90% certain I was going to marry him. We dated for 3 years and married the same day we graduated from Penn State in May 2005.
We enjoyed being newlyweds for about a year in our home state of Pennsylvania before Tony’s job took us to South Dakota. The retiree Tony was replacing gave him some words of wisdom on the matter of moving halfway across the country from every person we knew: ‘One of two things will happen. You and Sara will either become best friends, or you’ll get divorced.’ We were already best friends, but our relationship strengthened even more. We bought our first home and adopted our dog. We developed a love for visiting state and national parks while we lived in the Black Hills and continued our outings after returning home to Pennsylvania in 2009.
In 2011, we welcomed our son, and three years later our daughter was born. Life was just about perfect. I was happily married to my college sweetheart, best friend, and favorite person. We had two healthy kids, a dog, and good jobs.
On December 10, 2017, Tony was diagnosed with non-Hodgkin’s lymphoma. He was admitted to our local hospital that afternoon and started chemotherapy two days later. Further testing showed Tony had Burkitt’s lymphoma, which could not be treated in Lancaster. In January 2018, he began an intensive chemotherapy regimen at John Hopkins. This treatment required he be no more than 45 minutes from the hospital, and we lived an hour and a half away with no traffic. Tony stayed in Baltimore three weeks of each four-week treatment cycle and was able to come home for the fourth week before starting his next cycle. His treatment had an 80% success rate and I viewed these 4 months as something to get through and put behind us, a sad but brief chapter in our story.
Tony was going crazy not working during treatment. Since he couldn’t be on the phone with his coworkers and employees, he made friends with everyone at John Hopkins. Tony would talk to each and every person who entered his room – doctors, nurses, social workers, food service employees, and janitorial employees. He’d ask them where they were from, how they liked Baltimore, where they had worked before John Hopkins. He especially loved seeing Miss Aratha each day when she delivered his meals. Tony wrote all about the food he ate on caringbridge.org. Many of our friends and family joked that it was more of a food blog than a site to keep everyone updated on his treatment.
In March, Tony needed a blood transfusion. This ignited a fire within him to advocate for blood donations. Tony finished his fourth and final treatment cycle in early April. The medical staff at John Hopkins marveled at how well he was handling the chemo. But he had to go and be a bit difficult in his final days of treatment, needing to be hospitalized not once, but twice.
The first occurred because his blood work showed there was possibly an infection brewing, and the second time for a fever. The fever was gone by the time he was admitted a few hours later and the infection was chalked up to a contaminated sample from one of the lumens of his PICC line. On Friday, April 13th, Tony was discharged and cleared to go home after completing chemo. We both agreed to spend one extra night in Baltimore because of the surprises he’d had earlier in the week. We drove home together on April 14th and surprised our babies a day before our son’s 7th birthday and three days before our daughter’s 4th birthday. We were finally all home together for good.
Tony had a scan at the end of May, and on June 7th we traveled to John Hopkins for the results. Tony’s oncologist told us there was ‘no evidence of disease.’ Finally, we could move on from this chapter of our lives!
A New Mass
Our joy lasted exactly one month. At the end of June, Tony began having spells of disorientation. The morning of July 7, 2018, he woke me up saying he was having another spell, but worse than any of the others. Not only was he turning his head to the right again, but he couldn’t keep his right hand from reaching out. We were half-convinced it was a nasty sinus infection, but erring on the side of caution I drove Tony to the ER.
Unfortunately, it was not a sinus infection. The ER doctor had Tony do an MRI. When he came back with the results, it was if time stood still. Tony’s MRI showed a mass on his brain. As soon as the doctor left the room we both began to cry. Through tears, Tony said to me, ‘Don’t let them forget me. Please, don’t let them forget me.’ I told him no one was going to forget him because he wasn’t going anywhere.
Tony was transported to John Hopkins and within 48 hours we were feeling much better after determining a plan of action. Tony was taking anti-seizure meds and underwent high-dose methotrexate every two weeks to shrink the mass after which he would have a bone marrow transplant. After the first two methotrexate treatments, it seemed the mass was shrinking, but after the fourth treatment there seemed to be no further progress. Tony was going to start radiation chemotherapy, but they were concerned they weren’t dealing with lymphoma as it wasn’t reacting as they expected. We were filled with hope.
It was decided Tony would have a craniotomy to biopsy the mass a few weeks later on Friday, September 21, 2018. In the weeks leading up to his surgery, he went from being able to drive to and from work, to having to be driven to work, to having to work from home. His last night at home, he got up in the middle of the night to use the bathroom. He was so unsteady that I held my breath while I listened for him to return to bed. But he made a stop in our children’s rooms to give them each a kiss. I had a terrible thought that it would be the last time he’d do so.
The night before his surgery I had to help him walk into the hotel. I helped him undress and bathe with the pre-op body wash that night and the following morning. What should have been a 3-4 day hospital stay became weeks. On September 30th, he had to be intubated to begin radiation. Tony could no longer talk. It was strange enough that I couldn’t communicate with him on the phone because he didn’t have the coordination to call or text, but now my funny, talkative husband was silent. The man who spoke to everyone at all times could no longer speak.
He was able to be taken off the ventilator 12 days later, but it was short-lived. Less than 48 hours later, he had a seizure and they reintubated him. I think it was at this time that I was no longer praying for Tony to beat this, but praying for God to guide us through whatever His plan was for us.
The Final Days
One month after his craniotomy, Tony’s oncologist told us his most recent MRI showed he had a new lesion on his brain and it had spread to the base of his spinal cord. We had two options – continue radiation or focus on palliative care – but the same outcome. The oncologist suggested I take time to discuss this with family before coming to a decision, but Tony shouldn’t be the one to decide as he wasn’t really with it. I remember thinking he knew nothing about Tony. He may not be able to talk, but he was still lucid and aware of what was happening.
After the oncologist left the room, I asked Tony if he heard the doctor. He nodded. I asked if Tony understood what the doctor said. He nodded. It took me several minutes to ask my next question: Do you want to continue radiation? He shook his head no. I asked him if he wanted to come off the ventilator. He nodded yes. I told him I needed to call our family and asked if he wanted me to stay in the room to make those calls. He shook his head no. Those phone calls ripped me to shreds, but not as much as telling our children.
Informing our 4 and 7-year-olds that their dad was going to die was the hardest conversation I’ve ever had in my life. Tony passed away on October 24, 2018, at the age of 36. Watching someone larger than life deteriorate from cancer is so difficult. Losing the person you intended to spend the rest of your life with is excruciating. Having to raise our children without Tony is almost unbearable. But I’m so thankful we had time to prepare. I’m so grateful he wasn’t taken unexpectedly. He had time to leave me a letter detailing his wishes for me and our children. His letter also said to ‘ask everyone to donate blood and do whatever it is that will bring them a happy memory’ of him. Even while writing a letter about his mortality, he was thinking of others.
Honoring Tony’s Memory
I’ve decided one of the best ways I can honor Tony’s memory is to continue to advocate for blood donation. In speaking about the importance of donating blood, I’ve noticed a common theme: there are so many misconceptions regarding eligibility. The most common reasons a person would NEVER be able to donate would be if they have any of the following in their medical history: blood cancer (lymphoma, leukemia, or myeloma), sickle cell disease, intravenous use of drugs that were not prescribed by a physician, or having tested positive for Hepatitis B, Hepatitis C, or HIV. Almost everything else is situational. There may be a waiting period after certain illnesses, medications, vaccinations, etc., but people are able to donate after the appropriate time frame. Any specific questions regarding eligibility can be answered here.
One of the most amazing things I learned is that each blood donation can save up to 3 lives. As much as I hate needles, donating blood seems so inconsequential compared to what my husband endured. I watched him go through months of blood draws, spinal taps, and injections with grace, courage, and an incredible sense of humor. I’ve successfully donated five times in the last year and sent a request to everyone who followed Tony’s journey on caringbridge.org to see how many donations friends and family have made because of Tony.
Including my five, there have been 54 successful donations. That’s potentially 162 people who have been helped as a direct result of my husband’s tenacity. Tony’s persistent public service announcements about blood donation compelled his friends at Flinchbaugh Orchards in Hellam to hold blood drives in his honor, and now in memory of him. They have had five blood drives to date that have each had 15-22 donation attempts. Even if only 10 donations were successful at each drive, that’s 50 donations helping as many as an additional 150 people.
Tony passed away a full seven months after needing his one blood transfusion. Those seven months gave us time to celebrate both of our children’s birthdays, our 13th wedding anniversary, the birthdays of our nephew and two of our nieces. It allowed Tony to witness his youngest sister graduate from high school, attend the baptism of our youngest niece, take a trip to Ocean City with his entire family and another with just the four of us. It gave Tony time to visit with friends he hadn’t seen in years, have family photos done ‘just in case,’ and take our son to his very first Penn State game.
Those seven months were invaluable and they would not have been possible without someone taking the time to donate blood. If you are able, please consider donating. In Tony’s words, it’s one donation that is completely free and the best chance many of us will have to save someone’s life.”
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