By Sasha Reddy
When individuals make the courageous choice of joining the armed forces, they do so with certain expectations. Military service entails that any day, those who answer the call may be asked to put their lives on the line. Despite the risks, selfless individuals continue to enlist, resolute in their goal to serve and protect fellow citizens, neighbors, and friends. For their incredible self-sacrifices, veterans are due a level of comfort and security upon their return home and throughout their lives thereafter.
“They always tell you when you join, ‘We’ll take care of you,'” says Jen Howard, HAC member, military wife, and mother of three children. “‘You go, you fight, and we’ll take care of you.'” The US Department of Veterans Affairs manages programs and funds for American armed service members and their families. While many resources are available through the VA, they can be tough to secure. In fact, many veterans rely on support from one or several charitable organizations to supplement or completely fulfill their needs. For Jen and many veteran families, the process of obtaining promised government benefits has been anything but simple.
After enlisting in the Marine Corps fresh out of high school, Jason Thomas Howard returned to his home state to attend the University of Florida. That’s where he and Jen were introduced through mutual friends. “We met on the Marine Corps birthday, which is kind of funny,” Jen recalls. It was 1999.
Just a few months later, Jen got her degree in communication disorders, and the pair went their separate ways, keeping up their relationship long-distance. While she attended graduate school at the University of Cincinnati, Jason returned to the military as a commissioned officer, stationed first in Quantico, then Camp Lejeune, and finally Camp Pendleton on the Southern California coast.
“We were supposed to get married July 2002,” Jen remembers. But when the World Trade Center was attacked on September 11th, amidst the vast landscape of fear, uncertainty, and change, Jen and Jason changed their plans, too. “We ended up moving our wedding up and got married November 2001 while I was still in school.”
Jen joined Jason after graduation and they lived together in California for only six months before Jason was deployed in 2003 as part of Operation Iraqi Freedom (OIF).
After the initial invasion of Iraq in March 2003, the first order of business was establishing temporary military bases. Until then, as troops moved from location to location, anything that couldn’t be transported had to be burned. “You can’t leave anything,” Jen says. “[Jason] was at a munitions factory at one point, and they burned pretty much everything that was in there. He said there were barrels with writing on them that they could not read, and they were just tossing them in just to clear things out.”
While Jason and others likely had an inkling about the risks of breathing the toxic fumes emitted by those fires, in an active war zone, there are far more pressing dangers to contend with. Completing the missions set before him and staying alive were Jason’s biggest priorities. “The guys were aware enough that it was maybe not the best,” Jen notes, “but that was orders, and that’s what you did.”
Less than a year after his first tour in Iraq ended, Jen and Jason’s first child, David, was born. Jason deployed for the second time when his son was three months old.
Upon his second return from Iraq, Jason took a civilian job working at Amazon. He later joined active reserve. Jason’s civilian jobs led the Howards to live for short stints in Nevada, then Kentucky. Their family welcomed a daughter, Emily, and their youngest son, Matthew, before making a permanent home in Hockessin, Delaware, in 2013.
“We could have left after [Jason] switched jobs,” Jen says, “but our kids had such great friends, we liked the schools, we had met a lot of really nice people here, and we just decided, ‘Nope, Delaware will be our home.’ So we stayed.”
Jen and Jason have been runners and fitness buffs most of their lives. “We always enjoyed going on a run together,” she says. “For our anniversary, we usually would go on a run.” She laughs, remembering how her husband would load a backpack full of bricks and wear it on their routes together to slow his pace to hers. As the kids got older, participating in 5Ks was something the Howards enjoyed as a family, too.
“We joined the HAC a few months after moving here,” Jen says. She discovered Run HAC in the fall of 2014 and has been a member ever since. Jason was an on-and-off member when his work schedule allowed, but even when he wasn’t racing, he was cheering for Jen and other club members on the sidelines at every race he could attend.
“He called Jen Besten his running nemesis,” his wife jokes.
Neither Jason nor Jen could have understood then how life-changing their running group friendships would become.
A Silent Sickness
In June 2018, Jen, Jason, and the kids took a big family vacation to Hawaii. Much of that trip was spent hiking miles up mountains and waterfalls, taking in the beautiful scenery. Throughout their stay, “he kept saying, ‘I have this headache that’s there but not there,'” Jen remembers, but there wasn’t any cause for alarm bells yet.
That shadow of a headache followed him home to Delaware, where Jason often found himself needing to lay down in the middle of the workday. He was prone to getting migraines as it was, but this was distinctly different and much more periodic. Over the next several months, his ailment became more agonizing. By the Tuesday after Labor Day, Jason was in tremendous pain – enough to warrant a trip to Urgent Care.
“When they gave him every pain killer that they had, and he was still in extreme pain, I took him to the ER,” Jen says. “They took him in for a CAT scan, and they didn’t bring him back.” When she and Jason were finally reunited to receive the news, they were stunned.
The x-rays before them revealed a tumor the size of an orange dominating Jason’s left frontal lobe.
Jen’s memory of the discussion that followed is disjointed and blurred by disbelief. “I remember them saying ‘brain tumor,’ ‘primary brain tumor,’ ‘terminal,’ ‘likely a terminal diagnosis – looks like glioblastoma…'” she recalls. “‘We won’t know for certain until there’s a biopsy done.'” In that room, in that single conversation, their worlds had screeched to a halt.
Jason’s tumor was first discovered Tuesday, September 4th, 2018. Two days later, he would undergo an MRI-guided craniotomy to remove as much of the mass as possible.
Glioblastoma multiforme (GBM) is the most common, most aggressive malignant brain tumor. According to the American Association of Neurological Surgeons, though it has an incidence of just 3 in 100,000, the survival rate is grim; once diagnosed, only 40 percent of patients survive the first year, and only 17 percent live past two years. With no previous family history of cancer, Jason’s illness is likely attributable to his exposure to open burn pits while serving in Iraq.
Almost immediately, Jason was feeling more like himself. His rapid healing allowed him to proceed with chemotherapy and radiation just five weeks post-op, and he finished his first round of treatments that November. Soon after, Jason began using Optune®, a device that uses electrodes to create a magnetic field that can prevent cancerous cells from multiplying. “You have to constantly change batteries, and you’re carrying a backpack with you everywhere,” Jen describes. “When you’re active, and you’re sweating, your electrodes can pull off, so we’d do electrode replacements every day.” In addition, the device must be worn at least 18 hours a day to achieve the best results. “It is a life-changing thing.”
Though changing electrodes, replacing battery packs, and shaving Jason’s head each day could be pretty disruptive, Optune® and the slew of other treatments he received were working. For almost a year post-op, the resection cavity was shrinking, there were no signs of regrowth, and Jason and Jen were able to live semi-normal lives. But glioblastoma (GBM) is highly aggressive, and in August 2019, his cancer rebounded.
“You know when you plant tomatoes in your garden,” Jen explains, “and you think you pull them all out, but then next year you have tomatoes in your garden again even though you didn’t plant any seeds? You can’t see it – it’s just in the soil. And if conditions are right, then all of a sudden, it’ll start to grow.”
The treatments and trials that followed were grueling. Jason underwent a second craniotomy before the end of 2019, followed by an immunotherapy trial, a third surgery in February 2020, another round of radiation, and two more rounds of chemo in addition to other treatment options. “It kind of slowed growth,” Jen remembers, but Jason never saw any significant reprieve. Her husband’s quality of life had hit such a low that, at the end of 2020, right after Christmas, the family made the difficult decision to put him on hospice.
“That year, from 2018 to 2019 – I’m so grateful we had that great year,” Jen smiles. “While he was doing chemo and radiation, we ran the Kennett Half Marathon. We were training for it before his diagnosis, and neither one of us was well-trained when we went to run it. But we did it!” Had circumstances not been what they were, Jen’s confident Jason could have easily finished in under two hours. Even while battling an aggressive cancer and enduring a hodgepodge of taxing treatments, he lived a full life before passing away at home with his family on April 29th, 2021.
“That year, from 2018 to 2019 – I’m so grateful we had that great year“
Jason was a mathematics major in college. Data analysis and reporting was his primary role for most of his working life. He was a numbers guy through and through. And with his job at Ultimate Software Group, he received excellent health care coverage, a blessing that completely transformed the course of Jason’s life post-diagnosis and one for which Jen is still immensely grateful. So, upon receiving his terminal diagnosis, Jason’s biggest concern was not obtaining coverage through Veterans Affairs for all the medical expenses he would accrue. What Jason urgently wanted was to make the VA and our government aware that Veterans were harmed by the burn pits. He wanted the VA to acknowledge his illness was likely caused by his toxic exposure.
To track instances of illness among veterans, the VA established the Airborne Hazards and Open Burn Pit Registry in 2014. This registry details where and when veterans were potentially exposed to hazardous chemicals during their service as well as what health conditions they have encountered since. The VA uses this information to determine which medical diagnoses likely resulted from toxic exposure during military service and should be covered by government funds. The more veterans that suffer without disclosing their ailments via the registry, the less data the VA has to indicate a need to provide care.
“If people don’t put their names out there to say that they had side effects or exposure-related issues, then no one’s ever counted,” Jen emphasizes. “And if you’re not counted, they never know how many people were impacted.” Simply put, Jason’s goal was to be counted.
Collecting and submitting paperwork to the VA has been a notoriously arduous, complicated process – it is one of the biggest roadblocks for many veterans seeking care. The signing of the PACT Act this past August has made it much easier to affirm a connection between a vet’s illness and toxic exposure, but this law came too little, too late for the Howards. In Jen and Jason’s experience, with every round of paperwork submitted came months of waiting in a holding pattern for documents to be reviewed. When they finally received a response, it was often to inform them that they had turned in the wrong form or failed to provide an important piece of information and would need to start the process over again.
“And the burden of proof is on you,” Jen adds. To corroborate your experiences during service, the VA often requires veterans to supply a “buddy statement,” a document that captures first-hand knowledge from fellow service members that could support your benefits requests. Letters from healthcare professionals and biopsies of damaged or cancerous tissues are often also required to help prove that a particular condition could have resulted from exposures during military service. Collecting these documents is the responsibility of the individual or family seeking aid, and the VA does not typically cover associated medical expenses.
“It’s just a lot to have to go through for someone who’s already going through so much,” Jen comments.
Jason began seeking the VA’s assistance in 2018 between his first brain surgery and his first rounds of chemo and radiation. Nearly two years later, after much back and forth with Veteran Affairs and a significant decline in Jason’s quality of life, they were still no closer to achieving their goal. “By fall of 2020, we were getting to a point of thinking, ‘If something doesn’t happen soon, he may not live to see a service connection happen,'” Jen says. Desperate for help, she reached out to Senator Chris Coons’ office, and that’s when things finally started to move.
Though submitting and re-submitting paperwork to the VA was draining, going through all those motions ultimately helped introduce Jen to resources she otherwise may not have contacted. The local officer she reached through Chris Coons’ office put her in touch with BurnPits360 who connected her to various non-profit organizations dedicated to aiding veterans facing service-related illnesses. Thanks to the “paperwork wizards” and the National Service Officer with the Wounded Warrior Project, she and Jason finally submitted their initial VA claim for approval. When Jason was no longer well enough to leave home, these organizations also helped schedule an at-home evaluation – a victory Jen is confident she could not have won on her own. The Wounded Warrior Project even helped get Jason a fully-supportive wheelchair.
With the help of the Elizabeth Dole Foundation, Jen was able to get her own reprieve. For over two years, in addition to filling her roles as a parent and audiologist, she was tasked with scheduling oncology visits, surgeries, and treatments, digging up documents, communicating with Veterans Affairs, and eventually taking care of Jason full-time. “As a caregiver,” Jen says, “you do get tired. You do get burned out. And you want to give your spouse – your veteran – the best version of you…Elizabeth Dole got us some respite care help so that I could just be a wife and not be a caregiver all the time and spend time with my kids, too.”
Jason finally received his service connection through the VA just a few weeks before his death. “At that point, he could still talk, but not much,” Jen says. Still, when she gave Jason the news, he managed to utter a weak, tearful “thank you” and squeeze his wife’s hand. “You could see there was this sense of peace and relief.”
“Getting service-connected doesn’t just mean there’s some compensation for the veterans involved,” Jen emphasizes. “It’s getting respite care for the caregivers. It’s getting access to medical care that maybe you don’t get access to privately….” Though they didn’t have much time to take advantage of the new opportunities available to them, it was a comfort just to have achieved this milestone they’d been chasing for over two years.
Another great comfort throughout Jason’s arduous cancer battle was the day-to-day support the Howards received from neighbors, friends, and even people they barely knew. “The Run Club is amazing,” Jen says, eyes watering, “I couldn’t ask for a nicer group of people.” Having been a member of Run HAC since 2014, she had gotten to know many of the club’s members well and run hundreds of miles with them over the years. Still, she was utterly shocked by the kindness she, Jason, and their children received from not only those they’d become friends with but also many newer faces. After Jason’s diagnosis, coaches Jen Besten, Andrea Bradley, and many other Run HAC members came out of the woodwork to help and encourage the family. They assisted with everything from cooking meals and sending cards to installing a fence in the yard and decorating the Howard house for Christmas.
“Jason and I both said that joining the HAC and making the friends here was a huge thing when we moved to the area,” Jen recalls. To show her gratitude for the club and honor her husband’s life, Jen now donates a Run HAC membership every year in memory of Jason.
“He wasn’t one to be the center of attention ever,” Jen admits. “But he loved running, and we both just enjoyed our time with Run HAC.”
This award doesn’t just go to the runner who has completed the longest race or received the most medals. With help from coaches Jen and Andrea, Jen Howard selects a member who has persevered through something or shown commendable diligence, dedication, and ambition over the course of the running season. “It’s more about setting a goal and really working hard for it or overcoming something,” she adds.
Through presenting this award, Jen also has an opportunity to continue Jason’s legacy, reminiscing with those who remember him and describing his giving nature, analytical mind, dry sense of humor, and the incredible life he lived for those who don’t.
“I like talking about him,” she smiles. “That’s one thing in our house that’s never taboo to talk about. And he’s part of our life still, so we talk about him.”
When up against a terminal illness, keeping a brave face and maintaining a sense of normalcy for yourself and your loved ones can be an incredible challenge. And while the two and a half years between Jason’s diagnosis and passing were some of the most trying months the Howards have faced, Jen remains appreciative for every second they shared.
“I like talking about him. That’s one thing in our house that’s never taboo to talk about. And he’s part of our life still, so we talk about him.“Jen Howard
The PACT Act
One of the VA’s most significant expansions of medical benefits, The Promise to Address Comprehensive Toxics (PACT) Act, is a law signed in the summer of 2022 that vastly extends the benefits available to veterans exposed to hazardous compounds during their service. In addition, the PACT Act outlines a list of “presumptive conditions.” Vets who have been diagnosed with any listed illnesses after serving in specific areas of the world during certain periods now have a far simpler and faster path to VA aid.
“Thank goodness there are people who have dedicated their time to making their voices heard,” Jen emphasizes. “It’s unbelievable, the people that went to Washington and really fought for this.”
While the PACT Act is monumental and will open doors for countless veterans seeking medical coverage, there is still more to be done. “The PACT Act is a step,” Jen says. “But the other step is doing more screenings and more preventative things for these veterans.” The PACT Act only helps veterans who have actually received a diagnosis of a presumptive condition. By catching some of these illnesses earlier on, we can potentially significantly improve a veteran’s quality of life long-term.