Spotlight on Aaron Hill, A Jack Story Presented By AARP

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Through the tragedy of a terminal cancer diagnosis, the desperation of multiple failed treatments, the reality of facing their children with the truth of it all, a mission and hope shines through.

These men don’t ask for sympathy.
They ask for understanding, for support.
 
They're not looking for attention,
But they don’t want to be ignored.
 
Some have seen friends and family fade
In the face of it all,
But some have seen them rise.
 
Some have lost so much – some have lost it all,
But some have found something, too – a strength within they never knew they had.
 
They’re ok behind the scenes, keeping their family moving
Keeping things as normal as possible,
In an abnormal, terrifying situation.
 
These are stories of sacrifice
They are stories of love.

Cold October wind and rain were in the air.

​Aaron answered the door. 

Kathryn, his wife, was at the table in the living room, finishing up daily home school lessons with the girls.  A little boy asked me my name.  I introduced myself and asked him his.  His name was Elias and he was their youngest child.  He was 5 years old.

I’d met Aaron and Kathryn two months earlier at a cancer support group.  Kathryn was in a back brace.  It was right before her surgery to remove her lumbar L3 vertebrae and replace it with a titanium cage.  Radiation from a recent treatment had killed the cancer in her spine but had also killed the bone. 

The surgery was successful, and Kathryn had spent seven days in the hospital and another nine days in transitional care.  She recently returned home. 

This was their new house.  They had closed on September 4th, a day after Kathryn’s surgery and started moving the next day.  They were still settling in.

It was 2 pm Friday, and this is some of Aaron Hill’s cancer caregiving story.

Ringing in 2016, at heights of joy and depths of chaos. 

It was early 2016, and a lot was happening in the Hill household:  Kathryn was recently pregnant with their fifth child, but she was also experiencing breathing problems and shortness of breath, which doctors attributed to her pregnancy.  
​ 
After the symptoms continued into her 12th week of pregnancy, the Hills went to the Emergency room at St. John’s Hospital in Maplewood.  They were hesitant to do a CT scan due to the pregnancy so agreed to have an X-ray done.  The doctors concluded it was pneumonia and prescribed antibiotics.  Several days later, when her symptoms hadn’t improved, they went back to the Emergency Room and were again told that it was a lingering case of pneumonia.  

“We were in a high-risk situation – Kathryn was pregnant, and everyone was hopeful that it wasn’t anything more serious than pneumonia,” Aaron says.

They were referred to a pulmonologist who convinced them they needed to do a CT scan to find out what was really going on with Kathryn.

“We got a call from the doctor later that evening – it wasn’t pneumonia – it was a tumor.  We were referred to Mayo because of the complications with the pregnancy and the tumor.  A couple days later, we went down to Mayo.  They did an ultrasound and found spots on Kathryn’s liver and her kidney.  They did a biopsy on her liver.”

Initially, the doctors thought that Kathryn had Lymphoma, but the biopsy showed that she had ALK Lung Cancer, a very aggressive form of lung cancer that has a 5-year survival rate of less than 5%. 

“We ended up losing the baby,” Aaron says.  “It was a boy.  We named him Isaac, and we celebrate his birthday every year.  That’s how this whole ‘cancer’ journey started." 

“It happened very quickly.  It just pulls the rug out from under you and sucks the air out of the room.  There’s nothing we could think of in those first few weeks – it’s just survival mode.  You’re just kind of in shock.  Things become very narrow, claustrophobic, and your world becomes small.  There was a heavy cloud over everything.  We were scared – mostly for our baby at the time. 

“It has to be that way.

“We thought we would have a short run, because Kathryn was already at stage 4 of the cancer.  It was in her lungs, in her lymph nodes.  It was in her liver.  It was in her kidneys.  Later, it spread to her uterus, then to her spine.  Then to her femur and her pelvis.  The cancer was all over her body early on.

“It started three years ago, and since that time it’s almost always been constantly heavy – multiple radiations, chemotherapies, surgeries. 

“One of the first things I remember was one night when I was tucking my son into bed, who was 7 at the time, and he asked me, ‘who’s going to take care of us when mom dies?’  It was like a slap in the face.  This is real!  We knew it was real, but this was the first time that our kids really expressed fear. 

“I realized then that I’m not just a caregiver for my wife, who was fighting cancer, but I’m also a caregiver to my four kids.  I realized my roles as dad and husband were going to have to change, to expand.”
​
In August of 2017, after multiple failed treatments, doctors put Kathryn on a new targeted therapy.  At the time, she had tumors everywhere in her body.  One rapidly growing tumor in her pelvis began bleeding, unrelated to the new therapy.  Kathryn’s parents took her to the Emergency Room.

​“I wasn’t concerned, but then I received a text at 11 pm,” Aaron says.  “It was from her father saying that I need to come to the hospital and bring the kids.”  He woke up his kids and told them that they need to go ‘see mom’ now at the hospital.  “I’m not sure what I said to them, but it was something about going to see mom at the hospital.”

By the time Aaron and his kids had reached the ER, Kathryn was already in surgery, an emergency vascular embolization.  Doctors had been able to slow the bleeding enough so they could send her to the University of Minnesota Hospital, where they had specialists for this type of situation.  “A few days later, she was able to start the treatment again,” Aaron continues.  Within 2 months, the tumors were almost gone.  

Mourning the loss of the lives they had.  Finding inner strengths that were unknown.  Bending, but not breaking.

​“Before cancer, we were the family that helped people,” Aaron says.  “My wife, Kathryn, would prepare meals for births and funerals.  The kids would help her with the meals.  She would bring the kids to the Ramsey County nursing home, as a service.  We were the ones helping.  Now, we’re the ones being helped. 
​
“We wanted a fifth child.  We can’t have that.  We wanted to do foster care or adopt, and that may not be possible.  With my career, I used to have a healthy amount of ambition, but now it is just gone.  I used to love my job.  But that has also changed.  My identity is here, at home, with my family.  If opportunities would have come up at work, I would have jumped on them; now, I just let them go.  

“We’ve had to mourn the loss of the life we had.
​
“But, being a caregiver has also brought out things in me I didn’t know I had within me.  It’s probably brought out the best in me.  I’ve found things, within me, that I didn’t know I had that have made me a better person.

“We’ve seen friends fade out of view because they didn’t know how to handle our cancer, but we’ve also found so much support from our church and so many people who have really stepped up and continue to help us.  They’ve helped us with the kids, with meals.  Families in our home school co-op have helped us in so many ways. 

“But, more recently,” Aaron pauses.  “I’ve begun to feel the weight of it at times … more than I did in the past.  I don’t know if it’s because I’m wearing down, that I need a break, or if it’s the nature of how the disease is progressing or not progressing.  

"I do it because I love her.  I do it because she is my world.  I do it because we have a mission together – our kids"

“But I can’t stay weary.  I’m her husband and the dad to those four kids.  I’m the primary caregiver and there is no option of stepping back.  I can’t be weary in my caregiving.  I need to stay strong, for their sake,” Aaron continues. 
​
“Kathryn is my world,” he says.  “I care for her, yes, because she’s my wife and because I love her and because she’s my world.  But I also care for her because we have four kids together on earth and one in heaven.  She’s the best mother in the world – she’s an amazing mother. 
​
“I need her here for our kids.  

“I can’t do what she does.  We’re a team, and we’re partners in this.  We have a mission together – and that mission is those four kids in the other room.  We’re committed to this mission together - as partners, as husband and wife, father and mother. 
​
“She needs to stay alive.  I need her to stay alive.

“If we didn’t have this life together with our kids, I don’t know if she would have the will to continue to live.  I think there’s a point when you suffer - sometimes every day, sometimes all the time, for weeks on end, and you go through hellish experiences over and over again, where you have multiple near-death experiences, where you go through radiation, chemo, surgery, where everything hurts.  You’re in chronic pain.  It wears people down.  You may not have the will to continue to live.
​
“But I need her to continue.  I need her to keep that will in her to continue, so she can help me in our mission together.  The kind of care she needs right now is the care that only a husband can provide.  Nobody else can provide that kind of care.
​
“That’s why I do it!”

Finding hope and light in the darkest of times.

For the Hills, much of the past three years have been dark and bleak, hopeless and sad.  Since Kathryn’s cancer diagnosis and her many treatments, they’ve had little time to catch their breath.  It’s been hard to think about or plan for their future.

But they’ve also seen the best in people, with family and friends rallying around them and lifting them up, when they needed the help, in the darkest of times.

And the challenge of caring for his wife and four children has brought out the best in Aaron.
Lately, they’ve even found some hope.

Her latest treatment has been very effective in shrinking the tumors all over her body.  The doctors have also added immunotherapy to combat the cancer. 

This year, she had radiation on her lumbar L3 vertebrae for the second time – it killed the cancer in her bone, but it also destroyed the vertebrae, so she needed to have surgery to have the dead bone removed and replaced with a ‘cage.’  She had this latest surgery in September and pathology showed that the radiation had killed all the cancer in the removed bone. 

“We’re moving on,” Aaron says. “We’re moving forward.  I think maybe now we’re getting a little more comfortable looking a little more ahead, planning for a little bit down the road.  We’re using words to indicate that we expect her to be here a year from now, 5 years from now, 10 years from now.  Maybe that’s not realistic with this type of cancer, but that’s the way we’re feeling right now.”
​
Despite the uncertainty of Kathryn’s diagnosis, the Hills are looking ahead to the future, living their lives to the fullest, and cherishing each other.

The Hill Family: Top, left to right: Evangelyn, 14; Mom, Kathryn; Dad, Aaron Middle, left to right: Alexander, 9; Ariana, 12 Bottom: Elias, 5

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By: Mike McGarry

Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma.  Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 11.

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This Jack Story was brought to you by:

​Visit AARP.org/caregiving for family caregiver information and resources.

Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.