SFC Heath Robinson, U.S. Army
My husband, SFC Heath Robinson was a healthy, fit, active duty soldier with the Ohio Army National Guard who had recently ran a half marathon at Wright Patterson Air Force base. He was contemplating going to Ranger School to become an Army ranger until our lives were dealt a devastating blow. Heath was also the 2012 and 2013 Ohio Army National Guard NCO Soldier of the Year. In late 2016, Heath noticed symptoms of fatigue and realized his body was not recovering normally after runs and workouts. Shortly thereafter, he suffered severe, chronic nosebleeds, bleeding from his ears and also totally lost his voice. A dozen doctors later, he was diagnosed with a rare autoimmune disease called Mucous Membrane Pemphigoid that normally strikes elderly women in their 80’s. Doctors at the Ohio State Medical Center were scheduling a vocal cord transplant when new symptoms not consistent with the autoimmune disorder presented, causing doctors to biopsy one of his lymph nodes. On March 21, 2017, we were sitting in an exam room at the Zangmeister Cancer Center in Columbus, OH awaiting the results of his biopsy. With tears in his eyes the doctor walked in exclaiming, “WHAT THE HELL HAVE YOU BEEN EXPOSED TO?” before explaining that Heath was suffering from an extremely rare form of stage 4 adenocarcinoma lung cancer that could’ve only been caused by prolonged exposure to toxic substances. The prognosis was worse than devastating. 20 fellow oncologists and researchers from around the country were consulted with in an effort to find the best course of treatment and nobody came up with an answer. We were told that because Heath’s cancer was so rare there are no clinical studies on which treatments work best. Oncologists don’t see this type of lung cancer because we don’t make a habit of exposing ourselves to dangerous, potent toxins. I had to hold Heath up from collapsing to the floor as we learned if they weren’t able to find a treatment that would prolong his life, he most likely had only about 6 weeks to live. Needless to say, we both were in total shock and had the horrific experience of having to explain this to our families and loved ones.
Fortunately, we were blessed with small miracles and immunotherapy was successful in extending Heath’s life for three year but that day was the start of three years of hospitalizations, trips to doctors, sitting in the cancer center for hours during treatments and me having to take time from work and our young daughter, Brielle, who was 3 years old. Being a wife and mother, I was instantly relegated to take over Heath’s household duties and still meet the needs of a rambunctious preschooler, manage our household and continue to manage my own career. I couldn’t leave home without worrying that Heath would propel into an emergency situation. For instance, on a day my mom and I traveled to Texas to attend a cousin’s wedding Heath was OK when we left for the airport in Columbus, OH. By the time we landed in Austin, we got word that my husband was currently in the middle of having emergency heart surgery. At some point he struggled to breathe during a scheduled oncologist appointment. Fluid had accumulated around his heart which was being crushed by the pressure requiring a pericardial window to relieve that pressure. With so many ups and downs until he took his last breath on May 6th of this year, this was only one example of the many hospitalizations, trips to the ER, excessive suffering from pain, chronic coughing, difficulty breathing from dramatically low blood oxygen saturation, phlebitis, blood clots in his lungs, heart arrhythmia, crushing bone pain in his shoulders and back, constant nosebleeds, throwing up, crushing headaches, complications from cancer treatments, depression and insomnia that Heath had to endure. And I had to helplessly watch. For the last few months someone always had to be with him because he was contemplating suicide. my career as a physical therapist was difficult to maintain. It was difficult to manage caring for our young child, work full time and be a fulltime caregiver. There were numerous times he had to be rushed to the nearest ER in the middle of the night when I had to find someone to take our daughter.
For three years my life was so overloaded with stress that I had to have my mother, who lives 135 miles away, move in with us to help. I had to carry the load with little time to think about and care for my own well-being resulting in me being prescribed anti-anxiety medications. The overwhelming stress was so severe I couldn’t sleep and when I did it caused me to grind my teeth which ended up locking my jaw for a while. Many days I felt like a walking zombie going through the day after not sleeping all night. I had heart palpitations and ringing in my ears. There were periods of time where I went 2 or 3 days without any sleep or only a couple hours total. I was depressed and fatigued daily, struggling to muster the strength to carry on. One day I collapsed on the floor in total physical and emotional exhaustion. Brielle came rushing to my side, trying to help me. No matter how hard my mom and I tried, we couldn’t shield Brielle from bearing witness to how sick her daddy was, all the blood, vomit, whatever mucous and tissue he chronically coughed up and how emotionally distraught and scared her mommy was. I doubt anyone but my mom could ever picture how painful this experience was for my daughter and I, especially for Heath.
There were so many times I spent rearranging furniture or purchasing new furniture to meet Heath’s needs and comfort. I had to buy new clothes for him after he lost a lot of weight. Figuring out meals and foods he could eat was always difficult with his ever-changing appetite or suddenly, what he ate a week before now made him nauseous. I had to stay on top of giving him his medications properly and manage the side effects as well as keep track of his appointment and treatment schedules. For three years I felt like the mood in our home was mostly always somber with the Grim Reaper lurking over my shoulder. No matter the fun times and laughter we strived to create the grief and despair was always there. I knew I was in psychological distress full of fear and uncertainty what my future was going to hold but I had to carry on. My inner strength and support from loved ones carried me through even though at times it was hard to have hope that I’d ever be simply happy again.
The last year of Heath’s life was horrible for all of us as far as his health declining. Throughout the first two years of his cancer battle, he had periods of being somewhat stable and feeling OK considering he remained terminally ill and would never go into remission. He suffered terribly those final months and it was gut wrenching to watch and not be able to fix him. I tried every day to make each day a good day for him but especially in the last 10 months, that was an insurmountable task.
To get Heath in the shower, he had to crawl up the stairs, attached to and dragging an oxygen tank. I had my dining room chairs placed at the base of the stairs, on the landing and a couple upstairs in the path to the bathroom. His blood ox sats would drop so he had to sit for a few minutes every few feet while making his way to the shower. This process of getting him from the sofa to the bathroom took 25-30 minutes.
Most days he had gushing nosebleeds at the same time he was vomiting causing his oxygen tube to fall from his nose. While bleeding and throwing up he would also be gasping for breath Either my mom or I had to hold a bowl under his nose to catch the blood and vomit while trying to hold the oxygen tube in his mouth giving him spurts of oxygen in between the vomiting spasms so he wouldn’t be totally deprived of oxygen and die. I can’t recall how many times we had to clean massive amounts of blood because we couldn’t get to Heath in time with a basin. One morning I just couldn’t handle his vomiting and bleeding and I passed out leaving my mom stuck with taking care of both of us. Heath went on Hospice Care in Feb. of 2020. He ended up surprising his doctors yet again and was able to come off Hospice care for a couple months. Unfortunately, his breathing issues began again and he struggled to breathe when the cancer became very aggressive and was invading his body completely. He asked me to get him placed back with Hospice and we prepared for him to die.
Once a Hospice nurse arrived, he noticed that the oxygen concentrator Heath had been provided by the VA and had been using for months wasn’t actually that good for him so they immediately ordered one with a humidifier. He begged me to have him put in a coma, overdose him, anything to end his suffering, obviously unreasonable requests. It was a short couple days on home hospice. During those days I had to be the one to administer his meds every hour for 48 hours. He was slowly suffocating as the tumors were cutting off his airway. For his final 12 hours alive he fought valiantly to stay alive, gasping for breath, wanting to sit up so he could breathe better. He became anxious if I wasn’t near him so for 7 hours straight, I sat on our living room floor holding him in my arms, comforting him as he tried not to die. I refused to eat or drink anything because I didn’t want to have to leave him even for a couple minutes to use the bathroom. Due to the unfortunate luck of having one incompetent Hospice nurse, I had to pretty much take the lead with his care, transferring him from the floor to the bed because he became unconscious about an hour before he passed away. I sat by his side, holding his hand, rubbing his shoulders and arms, and spoke softly in his ear until he took his last breath around 8:30 am on May 6th, 2020.
Then I had the heartbreaking ordeal of telling our daughter that her daddy was gone. Brielle has not adjusted well to her father’s death. As with most little girls she was a daddy’s girl all the way. During her daddy’s three-year cancer battle….and he fought to live for her…… Heath always maintained that he needed to get better so he could play with her and resume all the daddy – daughter fun and games they always enjoyed together. He had coached her soccer team and taught her how to build Legos. Her math skills are incredible for her age because daddy always worked with her. Before Covid shut down school last spring, Brielle’s teacher periodically sent home messages that my daughter was not staying focused, not always listening and was easily getting upset. I knew the emotions, frustrations and sadness for her in missing those fun times with daddy along with the lack of attention from both of us had finally taken a toll. Unfortunately, the circumstances with daddy’s needs being so critical and a priority, she was sent to the other room to wait until we could tend to her. My little girl has seen and heard more distressing situations than any child should ever have to. Several times, Brielle was the one who found Heath on the bathroom floor with blood from his nose all over him, the floor, the walls. One morning she ran screaming to get her grandma, horrified at finding her daddy in a bloody mess reminiscent of a murder crime scene on the bathroom floor. My daughter crawled under the dining room table, terribly upset, crying and wanting to know why this is happening to her daddy. Other times she saw her daddy pass out or vomiting. She heard his constant coughing and complained how his chronic coughing would wake her up when she was asleep. She would get upset when she wanted me to do something for or with her and I had to ask her to wait until I was done tending to daddy. She cried a lot because daddy couldn’t play with her or take her for a walk or to a movie. I was constantly being pulled in all directions in addition to being full of fear, sadness, despair and anxiety.
Now that Heath is dead, Brielle has had intense meltdowns when she just screams and cries, sometimes like a little baby and nothing we do or say will comfort her. Sometimes these episodes will last for several hours and fortunately are lightening up as time goes on, but it’s still tough. She’s a little girl who misses and wants her daddy and doesn’t understand why he’s gone to Heaven when all her friends still have their daddies with them.
There was so much difficulty in feeling “stuck” not knowing when he may pass and being unable to leave the house to enjoy a meal out or maintain my work schedule. My brain was scrambled trying to remember everything I had to do as far has getting Heath’s end of life documents and arrangements in order to keeping up with all of his appointments and medications. We left no stone unturned trying to find ways to extend his life. We saw countless doctors at about every major health facility in the Columbus, Ohio area. He was admitted at different times to a total of 7 different hospitals and emergency rooms in our area. Each physician was completely floored by his condition. They had no clue what to do for him or why some symptoms and issues were even happening. Many of them asked the same question our oncologist first had about being exposed to toxic elements because they’ve never seen or heard of anyone having cancer like Heath had. Initially we asked for a consultation and second opinion at The Ohio State University’s James Cancer Center but the results were the same. Heath’s condition was grave and the best oncologists around didn’t have any answers on how to treat him other than trial and error.
I was on an emotional roller coaster watching someone I love go through treatments and have some successes and hope but then realize that those successes were ending. To see tubes, injections, the setbacks, him in unbearable pain, and to watch the lack of dignity in the dying process. Not by his doctors and healthcare workers at the cancer center but from the government entity put in place to care for our men and women who served their country.
There was some relief when I learned that the Veterans’ Administration has a caregiver program that we were encouraged to apply for. This would provide me with compensation so I could take a leave of absence from my job to be a full-time caregiver to my husband. It was seriously disappointing to learn the VA denied us with the reasoning that even though Heath’s lung cancer was 100% service connected, it wasn’t proven that burn pits was the cause. We were told his mood disorder was a qualifying illness, however, his condition wasn’t severe enough to require full time care. His lung cancer was deemed a non-qualifying injury even though the VA admitted I was providing a high level of care. Heath wasn’t angry about the decision but he was hurt. He gave his all, willingly signing up to serve his country and go off to war yet when he and I urgently needed some help, he was turned down.
Heath was even denied prescription medications that his oncologist prescribed as a necessary treatment to stave off side effects he was having from the immunotherapy regimen. We realize the VA does not acknowledge that inhaling burn pit emissions can cause chronic and terminal illnesses but Heath KNEW his toxic exposure did come from burn pits. He was based on Camp Liberty and worked some of his 13-month deployment to Iraq on Camp Victory. Both had notorious and huge burn pits. On Camp Victory Heath had guard duty which placed him within 10-15 yards from the edge of a burn pit every day for a total of 3 months. I will always carry the hurt and anger with me knowing that leaders and commanders in our government who are responsible for his death will never acknowledge what they did and denied him some of the care he needed. America pretty much left me alone to pick up the pieces of what they did. earned the results of our appeal a few days after Heath passed away and after I ended up taking an unpaid leave from my job to take care of my husband. I received a letter from the VA a few days after Heath died that stated since the soldier is dead the case has been dropped. They thanked me, though, for “taking such good care of our soldier”. That really was a stab in the heart. I didn’t take care of my husband for the Veterans Administration. It obviously wasn’t a priority or concern for them to help me and my family even though my husband died as a result of serving our country.
paid to have a lung autopsy conducted at Wright State University School of Medicine in hopes helping other burn pit veterans with more research and data. The preliminary findings showed: 1. Malignant neoplasm involving: a. right upper lobe, forming a 12×10 cm mass; b. right middle lobe, forming a 7×7 cm mass; c. right lower lobe, scattered small foci; d. left upper and lower lobes: focal indurations, possibly representing neoplasm, microscopic exam pending 2. Metastatic neoplasm involving right upper lobe peribronchial, right hilar lymph nodes, right paratracheal lymph nodes, and visceral pericardium anteriorly 3. Fibrosing inflammatory lung disease, diffuse and severe, involving all 5 lobes. *We and his doctors were unaware he also had this lung disease
We are still awaiting the results of the microscopic analysis of Heath’s lung tissue.
Heath was a soldier who was injured on the battlefield but his toxic injuries didn’t qualify him for a purple heart. His death is not counted as a casualty of the Iraq War. SFC Heath Robinson may have died but his legacy will continue through his deeds, sacrifices and those he loved. He is a man who fought for his country only to have that same country turn a blind eye when he and his family needed them most. – Danielle Robinson – Widow of War Hero SFC Heath Robinson
Danielle Robinson 392 Evergreen Circle Pickerington, OH 43147