This is a personal story of how I dealt with parenting children while my husband was living with NETs. I am not a doctor, therapist or professional on this subject. I am a mother who loves her kids, and together with my husband, we made decisions based on our life and our abilities. I do not pretend to know what would work for you. I would like to share this as someone who understands this difficult position of living with NET cancer in your home. You are not alone, and maybe something in this article will ease your mind and remind you that raising your children can still be such a beautiful and meaningful time in life.

At the time of my husband’s diagnosis, our boys were 11 and 7, not exactly the time we wanted them worrying about anything more than their next tennis lesson or spelling test. Unfortunately, we learned quickly that some part of that majestic time in life would have to change. The news was not something we could hide. Jim had been in pain and had ended up in the hospital for a week. Our routine and our home seemed upside down. Even though I made sure the boys were in school during the day, there was a shift in our house. Cancer had shown up, and we couldn’t pretend otherwise. A lot would depend on us, their parents, and how we as a family of four handled what was ahead. In the early days, we were not standing on solid footing ourselves, much less thinking about how to navigate and bring our family and friends into the fold. Our first concern was that our boys felt safe and loved. We were going to find a way to approach this unknown territory in a healthy and realistic way.

If you are the parent of young children, the conversation can be rather tricky. What to share? How to handle the ins and outs of this confusing diagnosis? We sat the boys down and gave them a few key pieces of the puzzle:

the word cancer and what it meant
where it was in Dad’s body
what we would try to do to take care of Dad while we worked with special doctors

We gave them hope by telling them Dad was strong and reminding them of all the wonderful people in our lives. We assured them that we would take good care of Jim and make everything easy for them and as normal as possible. We promised them we would be truthful and ask for their input. That didn’t mean they got the entire lowdown. We shared what was appropriate at different phases.

I felt so little control with Jim’s cancer diagnosis, but thinking through how to help our kids was something I could do and took seriously. Our children were the most important people in this equation. Parents choose on a regular, daily basis what to expose our children to. In areas like TV and movies, family history, or just the harder parts of life, we monitor their intake of issues that could hurt or scare them. Cancer is a big one. I was so worried my kids would be hearing things that were too much for them. I wrote an email to our school principal and to our boys’ teachers, asking them to keep an extra eye on the kids and to make sure nobody was talking about Jim’s cancer in front of them. We gave friends a brief explanation about what was going on and said we would fill everyone in once we settled in a bit.

Jim and I made a pact that we would not discuss any updates on his health with others until we talked with our boys, and what they could handle is what we decided to share with everyone. This turned out to be the best decision we ever made, and it was our go-to for every health change, surgery, etc. We took the time to decide what we were going to focus on and what we felt our children could absorb.

Early in our NET journey, I met a woman with two young daughters who had just brought her very young husband home for hospice care. She was so kind and took a few minutes to give me advice. She said, "Go live life. Do not do it the other way around. Living is first, and NET cancer can fit in somehow. Make sure your children can join sports, or dance or music. Show up for them as often as you can. As things progress, they will always understand you show up when you can, that you support them, and that life keeps moving forward." This advice literally walked me through the first year. Life didn't come to a stand still. We decided Jim’s illness wasn't going to be discussed daily. We did continue with our lessons, our homework and band concerts. I did remove some extra curricular activities that were too much, and we focused on what was bringing us joy or purpose. We were more intentional with our time. It's important to add that my husband's NET cancer taught me that letting go of things that don't serve you is vital to having room for what matters. We lived with closeness and honesty. Everything seemed to mean more than ever before.

One day, before Jim’s first surgery, I wrapped up a journal and a cool pencil for each of my sons. We discussed surgery and the ins and outs of how things at home would be a little different until Dad got home from the hospital. We asked them to write any questions they had in their journals or draw a photo of what they were feeling. We assured them they were smart young guys, and we were a strong family and the four of us would talk things through. If they had questions, they could straight up ask us, or they could write them in their books. I loved the questions they had straightaway. Is it like a cold? Could they catch it? Is it like their asthma? Could we fix it? Would Daddy be okay? It gave us a wonderful path to follow from that moment on. Our oldest showed up to the dinner table one night and said he wanted to ask the doctor questions. I asked him to write them out, and before that first surgery, the four of us went together to a pre-op appointment with our beloved surgeon. After Jim and I met with him for a detailed conversation, we invited the boys in to ask their questions. Gradon read off his list, and the doctor answered brilliantly. Kyle was quieter and seemed happy just being with us. He went back to the waiting room to play his Game Boy as a treat. We left feeling like the doctor knew we had a lot riding on this, and our kids felt like part of the journey.

Our older son wanted to take action, so he bought books written by a support group and had me drive them around town to local doctors. My younger son was too young to grasp the big picture but felt happy to drop books off with his big brother. They felt like they were helping their dad, and they were. The fact that they could help in some way spared them a big burden of feeling like they were not able to do anything, or worse, were not heard or included. I believe children are more intelligent and intuitive than we are as adults a lot of the time. As parents, with good reason, we sometimes keep our children out of the loop for their protection, but it can make them feel like they aren’t being considered and don’t have a voice. Our consistent message was, “We are a family.” If there was good news, we would celebrate every morsel of good without putting expectations or false positivity on the situation. We would not ignore physical changes in Jim’s health but instead bring them up casually and help them understand that this happens with cancer and that we are doing our best to keep on top of things.

Now, here goes part two of this!

At some point my kids had the audacity to grow up to be wonderful capable adults. I realized we had to work on a new phase of life for all of us. My husband’s health declined, but my children's lives had become more independent and full of life beyond us. They were always aware of the health issues and showed up at the hospital when needed. They helped their dad do his daily tasks when I couldn't. The tables turned rather quickly, and they showed up as a blessing to help with many things you wouldn’t want to burden your children with. Is there guilt for not being able to protect them from all that they went through? Yes, of course! Mom-guilt is real! I still pause when they step in to help because in my mind it should be the other way around. That mom gene runs deep, and I want to be the protector, but they have taken some of that on for me. They are my allies, and they support each other in such a beautiful way. They have stepped into the role of caregiving in many different capacities. Sometimes, I have to really stop and realize that they are giving what they learned from their parents: love and compassion and family strength. Jimmy never skipped a chance to remind the boys he loved them. It made all the difference for us that love was our focus and everything else fell into place.

We all moved forward alongside the cancer. I see my grown children living their lives on their own terms with an exceptional ability to know what is important. The things that matter are tended to and the silly worries that come up are not given much attention. We evolved with the illness, and I can look back and be grateful for every step of extra care we took for our children. The toll would have been worse had we not discussed this openly over the course of 14+ years.

If I can help you find information on handling cancer conversations with your child, please reach out to me at karalynfaulkner@thehealingnet.org. After all, we are all in this life together.