Kellen’s Story: In God We Trust

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Jill Bolling 

“In God We Trust,” found on every penny. Whether heads up or heads down, that penny is a symbol of our faith. Pick it up!

“God only gives you what he knows you can handle.” Seemingly honest and encouraging words, until you hear the word ‘cancer.’ It affects the entire family. Your mind a puzzle full of 50,000 “what if” pieces looking beautiful on the outside like a Monet painting carrying this burden called cancer with grace, while on the inside it looks like a Jackson Pollock painting. Abstract and ‘Convergence’-  bring it all together unifying yourself with this diagnosis. Exigent and vulnerable.

Trust in God.  He only gives you what you can handle.

Truth is, cancer is not a work of God. He did not give us this disease. He did, however, help this parent of a child with cancer overcome a sometimes still haunting diagnosis.

God made his presence known in the soul of my child who innocently shared his tender encounter. “Mom, is it okay for me to skate up to God to play?,” said Kellen at the age of 3 and a newly diagnosed childhood cancer warrior. My response, “Yes, but you need to return for supper.” Selfish.

Or the conversation that included a vision with my father, who had passed from metastatic lung cancer when I was merely 16 years old. I had never spoken of my father’s illness or how he died with my children. They only knew that he was in heaven and our Guardian Angel. “Mom, your Daddy died of cancer, didn’t he?” “Yes, he did, Kellen, but a different kind of cancer, not your cancer.  He didn’t respond to medicine like your body is responding to medicine.” Honesty with simplicity.

Kellen, my first born, a smart, energetic and angelic looking child with his pouty full lips, soft blue eyes, dimples and wavy white blonde hair was followed by four identical looking children over these last ten years: Cooper, Willie, Wyatt and Aaden. The only difference between them is Kellen’s blood went haywire forming a “common” cancer pre-B cell Acute Lymphoblastic Leukemia.  And so our storybook changed.

Five brothers.  Can you tell which one had cancer?
Five brothers. Can you tell which one had cancer?

Chapter 3: Cancer 101 took place of the original Chapter 3: fun filled summer playing in the water, eating watermelon, and traveling to new places with friends and family. The feeling of isolation sets in because the instincts to save your child are the most crucial. This included not going to church, not having germy friends over, no parties, lots of time to think between a toddler’s roid rages, and plenty of advice from friends and complete strangers.

For the first time ever I’m making it publicly known that sometimes I wanted to gently smack the person offering advice. Especially when it came to discussing death, a childhood cancer death. They had no idea how our storybook was to include many children, blissfully naïve adventures, lots of laughs, and hopefully athletic children so they could take care of us as we aged.

Never did I ever think that I would be the parent sitting in a hospital room on the Hematology/ Oncology floor wondering if my child would survive and eventually answering questions about why some kids die and some kids survive until I was.

Kellen today.  Such a handsome survivor.
Kellen today. Such a handsome survivor.

Kellen survived. He is currently 10 yrs old and just celebrated his 5th Domination Day (last day of treatment) after starting the 5th grade. I would be surprised if any of his friends would remember what he had endured. I’m certain that many of his friends’ parents never found themselves sitting on the edge of the bed with hand over shoulder explaining that their fellow cancer friend had died. Where is my EASY button?

Emotionless. Lifeless. Angry. Frustrated. Lost. Selfish. These words all describing the interaction between mother and son discussing a child’s death. In God We Trust. A semi-relaxed household, we have always been honest with Kellen about his disease and equally so describing it to our other children.

I’m aware they don’t fully grasp the concept of death. I know because in desperation I called Childlife for assistance. But Kellen understands it more. His little brother Cooper understands it more. They know that heaven means eternal life and not this sinful life of suffering and disease and hate.

Over the last year we have lost no less than five local children to cancer and Kellen and Cooper knew four of them. They met during camp and played with their siblings. Alike in so many ways and yet different because Kellen is a survivor. Cooper, our 16 month old toddler comic relief at diagnosis, weeps and seeks comfort at the news of death. Kellen demonstrates flat affect. Emotionless. Avoidance. Until Cooper returns to our side to inform us he is crying. Parent failure? Survivors guilt? Frustration? Jealous?

Where is that damn EASY button!

There is no EASY button. My husband and I have always made this marriage and family a team effort. However, the discussions of death, a harsh reality that we all will in time surrender to, left us speechless. Sometimes we found ourselves staring at each other. What do we say? How will they respond? What do we do if the response isn’t what is expected? How much do we tell them?

Mom and her brood.
Mom and her brood.

Fair questions for a topic that naturally instills fear in mature adults. My boys are physically seen as adolescent and yet they have endured more than many adults. Honesty! I didn’t anticipate a death discussion. Maybe I stored the possibility of death in a small space hopefully to crowd it out with more enjoyable events. Truth is I wasn’t given that luxury of rainbows and butterflies for my children.

I do believe I was prepared for this event. You see, I knew my father was present with us in that hospital room. I knew that Kellen’s conversation with God was to remind us he is near. I believe in eternal life and I knew that my Dad was protecting us, guiding us during these most difficult conversations.

Your children need to see that life can be a struggle and sometimes “bad” things happen to good people. That is this life. If you believe in higher powers, your children should know that God doesn’t want them to die, he wants them to have eternal life. Death is inevitable so that we may live forever. One day they will understand. One day we will all be together free of all things evil. Until then… In God We Trust.


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Kaden’s Story: He Was Welcomed

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Alison Hopkins 

There is nothing like it, the sweet smell of your babies! I would bask in the scent of my boys every chance I got. I knew they would morph into teenagers soon enough and wanted to savor their sweetness before hormones took over.

I remember bragging that Kaden was such a sweet boy and insisting that others smell his beautiful noggin. His nurses, with surprise, would agree with me. My sweet boy.

Kaden on the right with his little brother B
Kaden on the right with his little brother B

The rain would not let up, it felt like we hadn’t seen the sun in weeks. Nothing was blooming, everything was gray. I felt gray. Kaden was on hospice and the rain made it worse, if that was at all possible. I needed to see the sun and Kaden needed to be outside. He was antsy and the whole family was stir-crazy.

Hospice is like living on “pause.”

Waking to the sun was like exhaling! Sunshine! Kaden sat on his dad’s lap while I took a shower and his little brother, B, toddled around outside. When I got out of the shower, Kaden was in his room and was a little agitated. I opened the blinds in the room and looked at him. “It’s a beautiful day, Kaden, a beautiful day.” I knew what I was saying. I leaned over and kissed his head. There was no sweet smell, nothing.

I scooped him up to calm him and carried him to the couch, cradled in my arms. We, my husband and I, held him and comforted him as he took the last breath he would take. We held him, changed him into a new, clean outfit, and brought him to the funeral home workers outside when we were “ready.” (I refused to let them into the house, to take my baby. It was my last decision as his mother.)

After taking a few minutes to compose ourselves and to just be together as his parents, we walked outside and were amazed. Everything was blooming! Everything! The irises were amazing, almost as if they burst because they couldn’t contain their beauty anymore. And the perfume, it was so fragrant! The perfume smelled exactly like Kaden.

Kaden and Company
Kaden and Company

Wherever he went, he was welcomed.

Kaden David Hopkins

12/3/01 ~ 4/27/07

Ph+ ALL (diagnosed 1/8/07)


Alison wrote these words to me separately, but I have included them because they struck me with their potent strength:

” . . . what I wrote about was probably the clearest day I had experienced since [Kaden’s] diagnosis. I hate cancer and what it took from my children, my husband, my family. If I had to do it all over again, though, knowing what I know now? In a heartbeat. Maybe my pain is a measure of my love for him, my attachment to him? Whatever it is, it also makes me a better mom, wife, mother, and friend. I know how very dark it can be and this makes me enjoy the light so much more.”


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Mia’s Story: Beauty and Cancer

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Lisa Jacobs Gurevitz 

“Your daughter has a mass in her brain.”  That’s me.  That’s us, our family, living, laughing, loving and crying our way through our younger daughter Mia’s brain cancer diagnosis since November 2011.  “How do you do it?” we are always asked.  We just put one foot in front of the other and breathe in and out all day long.  And it sucks, it really does.

We go through the routines of our daily life, sometimes with forced enthusiasm, sometimes with authentic smiles  and we press on.  We can’t return it, ignore it or forget about our unwanted family member, Cancer.

Along with cancer, come its aptly named cousins anxiety, stress, and fear.  The anxiety we see in Mia, in my husband Dan and I, how it affects our older daughter Rachel, is woven through the blanket of our lives and comes with us everywhere we go. I wish I could say this blanket is cute and cozy and comforting.  Instead, it is heavy, cumbersome and ugly.

These unwanted relations are not going anywhere anytime soon.   For Mia, 5 1/2 years old and just starting Kindergarten, it is very apparent.  We see how anxiety has crept in and taken hold of so much of her life.  Crowds, loud noises, any change in routine, it has shaped her and how she goes about life. She gets stubborn, scared, controlling, sometimes irrational.  I won’t get into details, but Mia has had several anxiety attacks that have resulted in ER visits.

Positive vibes only, indeed.
Positive vibes only, indeed.

One visit resulted in my close to refusing the standard tests they do for oncology patients.  I knew it wasn’t tumor or shunt related.  The ER doctor looked at me like I was crazy when I told her it was an anxiety attack.   When you see your daughter hyperventilating in a restaurant from the smell you know why and you never forget that image.   Now don’t get me wrong, she is sweet, feisty, loving and hilariously awesome. But it’s sad to see how this disease manifests itself in ways you wouldn’t imagine.

For me, well that’s a whole different story.  Each time the phone rings when the kids aren’t with me my heart races, palms sweat, my hands get shaky and I say, “Shit.  What now?,” either out loud or to myself.  Until I see who is calling, I always assume it’s school or camp or a call from wherever Mia happens to be telling me there is an emergency.

When I am out in public attempting normalcy by meeting a friend for coffee or shopping at Target I forget my words, lose my train of thought, drop things.  It’s comical.  And pathetic.  I get so overwhelmed sometimes that I retreat and need to be home and don’t want to put that brave face on and do the things that come so easy to others.  I can shut out the world if I need to, except my phone is always on because I am perpetually waiting on that call I mentioned above.

This is how we roll, always ready for a trip to the ER, always having to be flexible with plans, always planning our days around what is best for Mia, how things work with her schedule, carrying ‘barf buckets,’ and changes of clothes, and anti-anxiety meds, and a host of other things.

My husband and I enjoy the music of The Grateful Dead.  I have for much of my life, as has Dan.  When the band announced their Fare Thee Well shows I so badly wanted to go, but knew it would never happen because getting out together, especially for more than a few hours, is difficult. We have some great friends and family members always willing to watch the girls, but we just never know how Mia will do no matter how comfortable she is with whoever watches her.

We gave up on going and planned to watch and listen via satellite.   It turns out that we were gifted with tickets to one of the shows, in a suite no less (extreme gratitude to E & S).  We were able to make it work with a split shift of sitters (thank you A and M) and off we went.  The whole time we were gone I was so certain something would happen and we would have to leave, I almost worked myself  into a panic attack.

The show was amazing, and even though we checked in a few times every hour Dan and I were able to enjoy ourselves and take it all in.  We got to experience a rare weekend night out, enjoying our favorite music and at the end got to breathe a huge sigh of relief that no emergencies arose.  So rare, so simple, so grateful.

Dan and I find comfort in knowing that we are the only ones that truly get this story of our family, riding out the unknown and scary ocean that is our life.    And we should cling together more in our little lifeboat instead of sometimes wanting to push each other overboard.  The toll cancer takes on a family is vast.  Our older daughter Rachel (4th grade) suffers too.  We try to do right by her and for her and yet we feel like she always ends up with the short stick of being a sibling navigating these waters.

Mia and Rachel, sisters.
Mia and Rachel, sisters.

How is Mia doing these days?  If you look at her she seems like any other kid her age, albeit a miniaturized version.  She’s happy, she loves camp and school, her dance class, her friends, snuggling, emojis and frozen yogurt.

At the end of July, we learned that after a year of stability on her fifth chemotherapy regimen followed by six months for off-treatment stability, there has been tumor progression and she needs to restart treatment. The sixth regimen is being taken via g-tube, which makes it so much easier to administer for both Mia and us.  And insurance approved it all after a long delay.

Beauty and cancer.  You wouldn’t think they go together, but they are related.  Cancer shows you what this is all really about and what matters.  And what doesn’t. Perspective changes as do we.

Mia and family.  Photo by Flashes of Hope
Mia and family. Photo by Flashes of Hope

Mia is thriving in her own way and we see the beauty in all of this clear as day.  Yet on super awful days we are still thankful for what we have now, because one day we may be fervently wishing and hoping we could go back to these easier days.  So twisted, so sad, so true.

Without love, day to day

Insanity is king.

J. Garcia/R. Hunter


This is an update to Mia’s Story was first shared in 2013.  You can read that post HERE.


If you don’t want to miss a single entry in the September Series, consider subscribing to my blog.  Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.