Parenting an Adult with Cancer

by Carrie GiestCaregiverJuly 23, 2021View more posts from Carrie Giest

We had to bring Kyle to the hospital each day after he was born for bloodwork to check on his jaundice. For infants, they hold the baby up to get the blood to flow down to the foot and then they prick the heel. That is my earliest memory of taking care of a medical problem for Kyle. I was a parent, and that’s what I did. Take charge and take care. Over the years there were tubes in the ears, allergies, adenoids. All taken care of by seeing a problem and making the decision to do what was best. There were also the usual scrapes and cuts, easily taken care of with a Bandaid and a kiss on the top of the head. There was even the unusual shingles at age 14 that we dismissed as bug bites. Who gets shingles at 14?

As Kyle got older, his injuries took a more serious turn. There was the phone call from the ambulance in Tennessee to tell me he was on his way to the hospital after falling 25 feet rock climbing. A couple fractured vertebrae. That was the first time I remember not being “there” for a medical problem. I had to rely on doctors 500 miles away. I did.

Then there was the ski accident at Breckinridge. Kyle doesn’t remember seeing the tree branch coming out horizontally from a tree as he was speeding down a black diamond trail. I have only my imagination to picture him on one of those ski mountain stretchers being taken to the hospital. Six days in intensive care for broken ribs that punctured and collapsed his lung and lacerated his liver. He told me not to come. He was going to be fine. And eventually he was. I was getting sick of these phone calls surprising me with life-threatening accidents. We joked about it.

So, when he called from Oregon to say he did a face plant while skateboarding and thought he broke his jaw, I calmly suggested the ER and not a walk-in clinic. Turns out all he needed was stitches. Another worrisome phone call. Another medical problem solved. More jokes about Kyle and his accidents. Another time I wasn’t there to help him. But it was fine. I had raised Kyle to be independent. To solve his own problems. I prided myself on being a “Dolphin Mom” (as opposed to a helicopter mom) who was playful and fun with my kids, who let them venture out on their own, but who was always within earshot if there was a problem.

That philosophy or parenting style was extremely helpful when Kyle decided to ride his bike, yes the kind you pedal, from Gainesville, Florida to Boston, Massachusetts. By himself. He was an adult of sorts at 22, so I couldn’t say no. I tried to bribe him with a Vitamix for a college graduation present, but he didn’t go for it. I finally offered to give him $10 for each day he called me, not texted, to let me know he was alright. I also provided him with a list of everyone I knew near his route, in case he ran into problems. After 23 days on the road, he arrived in Boston. I sent him $210. He had spent two days with a friend outside of D.C., so no phone calls.

Kyle and I had managed to develop a great parent-adult child relationship. He was healthy, strong, intelligent and independent. He made his own decisions, some of which I didn’t agree with. But I never judged, or tried not to. As long as he was financially independent and bought health insurance, it was not for me to say how he supported himself or how he lived.

Life was good. I had done a good job. I was still a parent, but now the parent of an adult child. How fun to go on trips, like the one we took to northern California and Oregon. His positive attitude and constant encouragement are the only things that got me to successfully climb Misery Trail at Smith Rock. It was a total reversal of roles. Then there was the South Beach Food & Wine Festival where we ate and drank our faces off and slept for $20 per night in a hostel at the beach. How fun to enjoy great food and drink with my adult child.

And then came that weird lump on his foot. I first saw it at Christmas 2017. What the hell is that? Is that a walnut on top of your foot? Does it hurt? How do you wear your shoe? Kyle said the lump had been there for about 18 months. It didn’t hurt. He had a doctor look at it months ago and he thought it was a ganglion cyst. Since it didn’t hurt, Kyle really didn’t want to have it removed and be out of work for a couple weeks. He was enjoying his jobs as a line cook, rock climbing coach, lab assistant, and his hobby of rock climbing too much to a take a break.

I was glad he had decided to see a doctor. Kyle was not worried about it. Neither was I. It was just a great thing to joke about with our relatives over Christmas.

In January, Kyle’s foot blew up. Well, not as in an explosion, but in size. It got very, very red and was swollen to the point that is almost didn’t look like a foot. He spent hours upon hours at the ER in Gainesville on two separate occasions. They finally checked him in to the hospital and treated the foot aggressively with IV antibiotics. I visited him. He was in pain and discouraged that they couldn’t figure out what was wrong. As the pain subsided, his attitude improved. I had tears of laughter rolling down my cheeks watching him do wheelchair aerobics with a video. We all needed a good laugh. We got it. After a couple weeks of being in the hospital, the foot surgeon opened up his foot. I don’t think he actually said, “What the hell is that?” But it was something along those lines. The doctor was puzzled by what he saw. He took a sample, not the entire mass which at that point had erupted and was spread all around the tendons or ligaments or whatever. What kind of infectious disease was this?

Weeks went by waiting for the results. They sent the sample out more than once to more than one place. He was referred to an orthopedic oncologist.

Now here is where the story starts to change. My son is seeing an oncologist. I wasn’t there for the appointment. Kyle lives two hours away, and I work as a teacher. I would have to be the mom of an adult child and let him do this on his own. No “take charge and take care” parenting. We continued to wait for results. I remember talking to Kyle on the phone and saying that since it was taking so long for the results, it must not be cancer. Cancer would just pop right up on the slide sample. Right? No, said Kyle. The long amount of wait time did not rule out cancer. My heart sank.

I told my colleagues at school about what was happening. That I was waiting for a call from Kyle. That he could have cancer.

On Tuesday, March 6, 2018, I checked my messages while on my planning break at school. Kyle left a text: call me after school. I died inside a bit. If the results were negative, he would have just said that. He didn’t. I couldn’t wait another couple hours for the end of the day. I called him right back.

“Mom, it’s cancer.”

He was crying. I was crying. All I could say was, “I’m so sorry. I’m so sorry.” He was being checked in to the hospital the next morning. “l’ll be there tonight. I’ll call dad.”

Now here is how weird the mind works. I had an appointment after school to get my gray roots touched up. I didn’t tell Kyle what the appointment was for. I just told him I had an appointment and would leave Tampa by 7pm (What was I thinking? More on that soon). I ran to the classroom next door. I cried out that Kyle had cancer and I was leaving immediately. I ran to the front office and told the principal’s secretary the same thing.

In the parking lot, I screamed out in pain. This is not an exaggeration. I was screaming. I called my ex-husband. I called my mom. I called Kyle’s sister, Alison, at law school in Chicago. I cried and screamed some more.

My son has cancer. No more kisses on boo-boos. I could not fix this.

I must have looked a fright, as one of the Assistant Principals and the secretary came out to help me. I told them I was okay to drive.

Now for that hair appointment. Of course I was not going to that appointment. What had I been thinking? I can’t even breathe right now, let alone get my hair done. The beauty salon was right on my way home from school. I didn’t have a smartphone to look up the number, so I thought I would just pop in to tell them. Picture a 60-year old woman with gray roots charging into the shop, hysterically sobbing that her son has cancer and she can’t keep the appointment. I didn’t make eye contact with the two blurs sitting behind the counter. I ran in and ran out in a matter of seconds.

After making sure my cat would be taken care and packing stuff for a few days, I called Kyle back to let him know I was coming right away. Dad would come up early the next day in time for check-in. His car was in the shop.

Things were oddly calm when I got to Gainesville. Kyle wanted dinner. We went to some new Asian place I think.

On Wednesday, March 7, 2018, my son became a cancer patient. He was diagnosed with Ewing’s Sarcoma, a rare soft tissue pediatric cancer. My 25-year old son was being admitted in to the pediatric oncology ward at UF Shand’s Hospital. We took a picture of him outside the hospital. Kind of like one of those first day of school pictures. He was even carrying a backpack.

Kyle having a pediatric cancer as an adult is what got me writing this story. He is my child. He is an adult. How do I manage this? Or really, how does he manage this with my support?

Right away people questioned why Kyle wasn’t coming back to Tampa for treatment. Well, he lives in Gainesville. That’s his home. All his friends are in Gainesville. He would have no support system aside from his parents in Tampa. He will be treated at a respected hospital just minutes from his apartment. His dad and I will take turns going to him.

Kyle made it clear from the start that this was his cancer. We sat in the back of the room during visits with doctors as I sometimes asked a question, but more often let Kyle and the doctor talk. I respected that. But still, I just wanted to kiss him on the forehead and make it all better. I had always been able to do that. Not any longer.

We sat, bewildered, in Kyle’s hospital room as doctor after nurse after hospital staff came in. This was the start of Kyle’s seven-month journey with cancer. Seven months of chemo with six weeks of radiation in the midst of that. I am not going to detail that seven months. That’s a different story. This story is about my child – my adult child with cancer – and how we navigated that. Sometimes successfully. Sometimes not so much.

Since Kyle was in the pediatric ward, there was a pull-out bed in his room. All the parents slept with their kids. Of course they did. They were babies, toddlers, children, teens. I slept in Kyle’s room the first night. During the second night, I couldn’t sleep and had an awful headache. All I could do was sob. As quietly as I could, I tip-toed out of the room and went to the nurses’ station for Tylenol and support. I talked for an hour about Kyle. Well, I bragged for an hour. By the time I got to his bike trip from Florida to Massachusetts, all they could say was, “Of course he did that too.” I needed them to share my pride.

I was taken aback on day three when Kyle told me that he didn’t want me to sleep in his room anymore. I blinked back tears and confidently told him I would do whatever he wanted. Of course. Here is where Kyle made it clear he didn’t need or want mom in his room all night. It had only been two nights, but I loved staying with him. It felt right to me. But it wasn’t my decision.

Many things weren’t my decision. Many things he had to do on his own, like figure out social security, disability, food stamps, insurance. His dad helped some, but when it came down to it, Kyle was legally an adult. These were his phone calls to make and his paperwork to fill out.

We made sure to have our names listed so we could follow his progress and make any emergency decisions if needed. His dad and I made a schedule so one of us could be there at the most important times. I went for the in-hospital chemo treatments which rotated between five and two days every couple weeks. His dad arrived when he would go home each time to help while he was tired and nauseous. It worked well. Kind of.

Kyle’s dad was so much better at this than I was. He was better at reading Kyle’s mind and knowing what he needed. He was better at backing off. And he was so much better at making corny jokes to lighten the mood.

I, on the other hand, was a mess. I tried not to be in front of Kyle. I would psyche myself up each time I navigated my way through the maze of corridors that is a hospital and tell myself: Today I will smile. Today I will be mindful of Kyle’s needs. Today I will give him space without him having to ask. And then I would enter the room. All I wanted to be was his mom. I wanted to crawl into bed with him and give him a big hug. We did that on occasions. We played cards sometimes. We did a lot of binge watching of shows like Community and GLOW. But I was just so darn sad. I knew he sensed it, and I felt so guilty.

I reminded myself that I was there to meet his needs. He knew that and appreciated that. He grew to hate the hospital food and appreciated all the trips I made to Starbuck’s for panini sandwiches and banana bread. I ignored the prices. It wouldn’t have mattered what they charged. My son has cancer; that’s what he wants; that is what he will get.

When friends or staff members came in to his room, I excused myself. I would guess how much time I should be absent for and then quietly peek in the window of his room after about 45 minutes to see if his visitors were gone. Many times they weren’t, and I would hang my head and go to a small consultation room or the kids’ playroom to kill the time. Many times I would just cry. If he had been younger, I would have been included during all of these visits. While Kyle had a huge circle of friends and a terrific support system in Gainesville, I did not.

I had no one except Kyle in Gainesville. And he was a cancer patient. I ate a lot of meals alone. Occasionally I sat at a bar alone and had a glass of wine. I slept in Kyle’s bed or in a spare bedroom at his apartment when he was at the hospital. I had to make small talk or try to be invisible to his roommates who hadn’t asked for a mom as a roommate.

I was divorced as well, so there was no husband to give me a hug and hold me as I cried. Luckily, my ex was a great support by phone when I didn’t know who to call. He listened so patiently.

With an adult child with cancer, I felt so displaced, both in title (mom) and geographical place. Kyle, with his degree in biology and his quest for knowledge, knew way more about what was happening to his body than I would ever know. I didn’t have to be that parent you see in movies who sits in a dark library with one lamp at the desk reading through stacks of books to find the cure.

I never knew the names of all the chemo drugs he took. But I learned why one’s hair falls out with chemo (It’s killing all the fast-growing cells in one’s body, which includes hair). I never saw him throw up. But I made him lots of tea. I never met the radiology oncologist (that I can remember), but I was in the waiting room after one of his radiation treatments to his foot when he came out limping and needing the help of the nurse to walk. The ruse didn’t last long after I ran up to him with panic on my face, asking if he needed help. He burst out laughing. I cursed at him and then laughed. He had convinced the nurse that I loved practical jokes to get her to go along.

Yes, we had some very funny moments. And some enjoyable times playing games like Quiddler and Pass the Pigs. I even learned how to play Hand and Foot, a canasta game he learned from his grandmother that I had always refused to play. How could I not play? My son had cancer.

I can’t say that Kyle’s cancer made us closer. We have always been close. Kyle got through his 14 rounds of chemo and six weeks of radiation. He did this by taking charge of his care. And by letting me know what he needed and when he needed it. Whether it was picking up a prescription for the neulasta injection (which he did himself each time he finished a round of chemo) or getting him another pillow and blanket.

It has been a few months since Kyle finished treatment. We are anxiously awaiting his first check up, which will include an MRI of his foot and a CAT scan of his chest. It took several phone calls for Kyle to finally tell me when the appointment was. He had planned on postponing it for a couple months as he couldn’t face any bad news. I was beside myself.

“You can’t postpone the appointment!” I cried. I had a constant knot in my stomach as we exchanged texts over the next week. Here I am again as the mother of an adult child who had cancer. I can’t make him go. All I can do is speak to him with love and logic, which I guess I have always done. He finally agreed. I think he is scared to go. So while he is an adult who had cancer, he is still my child. And I will give him a hug and a kiss on his forehead when he goes for the tests. And then I will sit in the waiting room, as he has requested, while he consults with the doctors about the results.

Post Script: Kyle got a clean bill of health at his first screening. The doctors are not so much concerned about the cancer returning to his foot. Their concern is that it will return to his lungs. So he will go every three months for the next five years to see. Or, maybe every four months. He is thinking of stretching the time between checkups a little to cut down on the overall exposure to radiation over these five years. Is this a wise decision? I don’t know. It’s not my decision to make.

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4 Comments

  • Cbd says:

    Thank you so much for sharing -you have helped me in ways you will never know. Please pray for my son as I will pray for yours.

    1. Carrie Giest says:

      We are always moms, no matter what their age. Please know you and your son are in my thoughts. I didn’t share this story with Kyle until it was going to be published, to get his permission. I didn’t want to make him feel bad. He loved the story, and it brought us even closer than I could have imagined. So my advice is to be open and honest with your son about your feelings too. As moms, we often put our needs last. And that is certainly the case with a child with cancer. Big hug!!!

  • Shelle says:

    Thank you for sharing your story. I am also the parent of an adult child with cancer and I relate to every word. Thank you for helping me feel a little less alone.

    1. Carrie Giest says:

      Please know you are in my thoughts and I hope for the best for your child. Sharing my story has really helped me feel less alone. This is especially true in sharing the story with those who have not been in our shoes. Being a cancer mom is a heartbreaking place to be. Communicating that is important to getting the support we need, and healing ourselves. Big hug!

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