“Sometimes, a big sickness can’t be fixed.” This was the sensitive and realistic way Heidi Marks explained to her four-year-old daughter, Anni, that daddy was not going to get better. No one can articulate a grief journey quite like the person who is facing that path firsthand, so we hope Heidi’s story of resiliency and strength inspires you.
“No one wants to have the need for support, but everyone needs it at some point or another. In May 2022 my husband, CJ, a devoted husband and father took a short-term work contract of 10 weeks in St Thomas, USVI. About 3 weeks after getting there, he wasn’t feeling well so he went to the ER. His blood sugar was over 600, he had spots on his lungs and was in poor health, but they released him that evening, saying he should return home and see his PCP. The earliest he could rebook his ticket was three days later. By that time, he was almost comatose and was literally carried into a van and rushed back to the hospital.
I was 3 months pregnant with our son Nathan, and our daughter Anni was only 3 at the time. I booked a ticket on the first available flight, and then had him transferred to Fort Lauderdale where doctors descended upon him in droves. After various tests, it was determined that he was not likely to survive. We only got moments when my husband would fight through the illness and be alert. He was a retired Australian Special Forces, a fire fighter. Not one to give up easily, but he needed to know his options. Within the hour we had a brief but clear conversation. He knew his options and that it was okay to let go if he wanted to. He shook his head no, he wasn’t giving up. We were going to fight, and he was going to come home to his daughter and in 6 months, his son.
After two weeks in Florida, his condition improved, and I returned home. CJ regained enough use of his dominate hand to be able to push the ‘accept’ button on a cell phone. I ordered a cell phone holder that could clamp onto his bed, an extra-long charger and made sure to leave a picture of Anni and an ultrasound picture of Nathan taped to each side of his bed. We expected he would be home within a month or two and I had been planning to bring Anni out to visit every other weekend. Every day we would video call, since CJ was intubated, and eventually they gave him a trac. He couldn’t speak- but he could mouth words, as well as nod or shake his head. Anni quickly learned to ask ‘yes/no’ questions and she adapted well to her new normal. However, over the next 6 months, there would be a series of medical setbacks and accomplishments. It was stressful, but we didn’t give up.
Behind the scenes there was a constant fight with insurance to have him medically moved from Florida to DFW. Everyone was empathetic, but no one was able to do anything. I called embassies, reached out to firefighting organizations, Australian military, charities, etc. Everything was a dead end. For 6 months I tried everything I could to get him moved. With a price tag of $250,000, we couldn’t afford to move him ourselves. We started a fundraiser and one day I asked the Colossal Sandwich shop in Bedford (one of our favorite local sandwich places) about putting a little poster in their shop explaining our situation. They offered to do a Saturday charity event for us to help raise funds. Someone from American Airlines, Military appreciation and assistance department walked in for lunch on his way to work and saw it. He immediately got in contact with me and asked how he could help. I explained that I was a few weeks away from my scheduled C Section for our son, my daughter desperately missed her dad, my husband was starting to decline again, and the medical staff believed it would be in CJ’s best interest to be closer to family if he was to get any better. I explained the insurance declines, the lack of funds, even a charitable Medi flight which was negotiated to costs only, was out of our reach. He promised he would work on it and get back to me. A few weeks later, a couple days before my C Section, I got a call from him. He contacted two charities. The Gary Sinise and Robert Irvine Foundations. He explained our situation and they both agreed to split the cost to get CJ flown back home. We had some paperwork to do, but CJ would be home to meet his son.
Nathan was born healthy, but the medical staff was unable to get my blood pressure under control due to the logistical stress of having CJ transferred to Texas. We got the green light to move CJ on the 21st of November. I was still at Baylor Grapevine, and it had been 3 days, and my blood pressure continued to be a concern. The lactation consultant came in to see how we were doing. I explained the situation with CJ, and she said it was time to focus on myself and Nathan for a little bit to help lactation and bonding. She immediately noticed something in my left breast that no one else had noticed. It was a rather large lump, hard but not painful. She asked if this was normal for me or if this was something new. I didn’t recall any large lumps, but I did have fibrous tissue and pretty much dismissed it and would figure it out later when things calmed down. The lactation consultant wouldn’t allow me to dismiss it. She spoke calmly, but very firmly, ‘You MUST get your doctor to look it this during your next post-delivery visit.’ I promised I would mention it to him.
My first OB checkup still showed my blood pressure higher than preferred, even with medication, and I did honor my promise to the lactation consultant to mention the lump. It hadn’t hindered my ability to breastfeed, but it almost felt larger within a couple weeks’ time. My OB was concerned and asked me to get a CT and mammogram. I assumed it would take a while to get an appointment, but for some reason when I explained to the scheduler my situation, they got me in for an appointment almost immediately. I went for my CT scan but the mass was so large that the radiologist told me a biopsy would be needed to get a clear answer.
Just 3 days after Christmas I had the biopsy done. Unfortunately, I knew just a little bit too much about breast cancer. My mom died from it when I was 16. I decided I was not going to let this change anything about who I was. While at the doctor’s office, I let a few tears fall. My son was only a few weeks old, I wouldn’t get to breastfeed him much longer. That was a disappointment I felt in my soul. My thoughts moved on; how would I bring my kids to see their father in the hospital while on chemo if my immune system was low…I would figure out a way. January 3rd, I got a call from an unknown number. It was the pathologist. He went over what he saw- I didn’t understand the words until he said, ‘I am so sorry; you have breast cancer.’ I thanked him and told him I already knew. He asked how, since he hadn’t sent in the report yet. I told him my prior experience with my mother. He said he had never encountered someone who already knew and was so calm about it. I wished him a good new year and he wished me all the best.
Later that day, we went to see CJ. When the staff came in to take the kids, I sat down next to him. I was hoping he was alert and lucid enough to understand. I explained what happened, that I had cancer. He didn’t really seem to understand, but I didn’t want to burden him with more, so I didn’t elaborate. A few days later, I was getting tests, a port was put in and I was meeting with an oncologist. As he was taking history, he looked at me with tears, he said he was so sorry to add this to the burden we were already going through. I told him it was okay and that we were a family that sticks together and fights. He warned me it was going to be a rough road; my cancer was already stage 3a and grade 3. He was more upset than I was. He told me about a child life specialist that Baylor had, it’s free. When a family has children and a big life situation, Baylor has these angels who will talk with your child in an age and stage appropriate way to help them understand and process the situation. My oncologist asked me if I wanted to get that set up for Anni and I immediately said yes. I knew I had to prepare her, not scare her for what was coming up. Parents set the tone, children that are young don’t always know what emotions they need to have- they mirror what they see. I had always been calm, accurate in information as was appropriate but positive about it. I needed help to make sure Anni understood the whole picture with both her parents- but wouldn’t be afraid of it.
Taylor- Grace was assigned to Anni. She was amazing. By the time we got in to seeing her, the situation with CJ had declined. His doctor had suggested we consider hospice. I can remember so clearly walking into the end of Anni’s first appointment with Taylor-Grace. They had talked about what death was, they talked about types of illness. Big sick’s and little sick’s and how not all big sick’s are the same, just like not all little sick’s are the same. You could scrape your knee and have a cold. They are both ‘little sick’s’, but they are different. Mommy and daddy both have ‘big sick’s’, but they are different. The doctors try hard to fix ALL sicknesses. But sometimes, a ‘big sickness’ can’t be fixed. Taylor- Grace said something that made Anni pause and look at me. What Anni said broke me and I couldn’t hold all the tears in. Anni said ‘is daddy going to die?’ My precious 4-year-old, who adored her father just realized that he wasn’t ever coming home, in addition to something big that is happening to her mom that she also didn’t understand. She just barely got used to her new best friend, Nathan. She wondered what would happen to them. Over the next year we kept going to Taylor- Grace for what I called ‘tune ups.’ Every time something big was going to happen, like my mastectomy, so Anni would know and understand what to expect. I made a point of always being calm and upbeat. I knew I would lose my very, very long hair, so I cut it off and donated it to children who needed wigs. I told Anni the medication I had to take was very strong, but we would not know if it was working until I started losing my hair- that would be the sign that it was working and that I was going to be okay! As soon as my hair started falling out, I immediately called Anni over. I had just gotten out of the shower and my hands were covered in my hair. I told her in the most ‘we are going to Disney, surprise!’ voice I could muster, ‘Look! The medicine is working! I am going to be ok!!!’ She got so excited and wanted to cut her hair off too! I knew if I was upset, she would be upset and scared, but if I was excited and made it positive, Anni knew it was okay.
A friend of CJ’s had come to town to be with him for the weekend, and I was relieved knowing there would be someone with him at the hospital. I got a call from him saying that one minute CJ was talking to him, the next his heart rate started to drop. We rushed to the hospital. Our friend met me in the waiting room and took the kids so I could speak with the doctor. I told him I was going to say my goodbyes first, when I was composed, I would give Anni the opportunity to say goodbye if she wanted, and if she didn’t, we would go. The nurses had done such an amazing job of cleaning him up, removing all the tubes and wires and IVs, he looked like himself again. Peaceful and asleep. Before Anni went in, I got down to her eye level and explained what we had talked about a few weeks ago with Taylor- Grace. About how love lives forever in our hearts, but sometimes the body wears out. That daddy didn’t need the machines anymore, he didn’t need to eat, or drink or sleep. I reminded her that he was not breathing, and he could not respond to her. I told her that she could choose how long we stay. She could touch him or not touch him – both were okay. She could talk to him, or not, but he wouldn’t respond. We stayed for about 2 hours. Talking, crying, laughing, and made a hand casting of his hand. When Anni was ready, we went to leave, I reminded her that we would never see his body again, so we would leave when she was ready and understood that. She said she was ready and understood this was a forever goodbye but that his love was with her in her heart forever too.
I emailed Taylor-Grace to explain what happened and that we needed to come back in. She has been an excellent resource for our family. We have read the books she suggested and we have found ways to keep daddy with us as we move forward. Taylor-Grace is the one who suggested The WARM Place for our family, and Anni loves coming to group. She loves the crafts, she loves her friends. She loves to talk about her daddy. Anni has always been outgoing. She makes friends easily, but not many of her friends understand when she talks about her daddy- especially now as she is starting school. These new friends never knew her dad. But the people here are nice, they are always warm and inviting. They ask about us as a whole family, not just about Anni or our loss. I think it can be hard for her sometimes to want to move forward but not let go either. Having The WARM Place gives her a sense of belonging to a very special group of friends. They also didn’t know her daddy, but they understand her journey.”
