When I Had to Tell My Son He Has a Brain Tumor

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I gauged the impact that the CT scan results would have on my 16-year-old son, Adam. I delayed slicing into the volcanic pie of diagnosis, rarity of the disease, few treatment options, shortened life expectancy and the physical effects. I buried information in a place where only I watched it fester. Cliches told me I would know the right moment to tell him. Cliches (like their cousins, old wive’s tales) are correct as much as they are not. When could the right moment come to tell your son he has a brain tumor?

But it wasn’t my information to keep from him, even overnight. I knew it would change the way he lived, bringing a horror to his childhood that no kid should face — chronic illness and thoughts of mortality. Don’t get me wrong, I wanted to share the burden his pediatrician placed on me, but I was his mom, and I would not relieve myself at the cost of destroying his hopeful way of living.

I didn’t know where I’d find the words, but I was sure that anything I uttered after “you have a brain tumor” would just be white noise. As a mom, I rose in the morning and fell to sleep at night, spending every waking moment protecting my sons’ health, safety and happiness. My message, and these words would rob Adam of all three. The telling was on me.

When I dropped Adam and his brother at school in the morning, I was simply Mom, and while he went through the motions of grade 10, I met with his doctor, who had found a clinical explanation for his rapid growth, joint pain, spotty vision, profuse sweating and sleeplessness. By the time I picked him up, I had become an medical expert on his diagnosis, jumped into the uniform of medical advocate and assumed the role as the official disseminator of information. I became more than Mom because of a phone call, because of an office visit, because of tumor the size of a golf ball.

“I got the results of the CT scan today.” 

He studied my face, and I watched as his eyes widened, big enough to show white all the way around the chocolate-drop iris. Then they glazed in wetness.

He exploded into fist-punching: first on his legs and then on the dashboard. He shook his head wildly from side to side like he was escaping from a swarm of angry bees. Then, staring hard at me, tears streaking his face, he shouted, “No, Mommy,” “No, Mommy” through his sobs. My teenaged son was reduced to the reaction of young child in that instant.

I cried too, more from the guilt of inflicting this on my boy, than from the knowledge of what we were likely facing. With his stricken face and wounded body language, what eye contact I could engage him in begged me, “Say it isn’t true.” He was pleading with me. I was doubled over, the stabbing pain in my belly, my hand resting on his knee

I couldn’t fix this for him, take away the sting or push it to the edge of his thoughts until later. I could do that with a lost hockey game, failed test or harsh words on the playground. That is regular Mom stuff. 

Later, at his bedroom door, I fumbled out, “I’m sorry” and other placating phrases. He could not stir from stillness. He huddled, nestled in blankets and pillows, his lair for swallowing the bad news. It was strange for him to be so silent. He wasn’t a kid anymore.

Mom and her son standing back to back

We still see four sets of expert teams at three different big city hospitals with dreary regularity. The traveling, waiting and testing puts us side-by-side for an entire day, once a week, often more. Adam spends more time with his mother than he might by choice. I worry about what this is doing to his sense of independence. 

As the presence of the inoperable pituitary tumor has made us accept that he will continue to grow (even at six-foot-ten), so it has forced Adam and I to change how we are together. I got “cooler,” learning to respond calmly to his off-color sarcasm. I “lighten up,” while taking on whatever role he needs me to. That means being his admin assistant, getting my hands squashed at painful tests and responding to agonizing questions like, “Do you know when I’m gonna die?” I am medical advisor, advocate, comforter and pal. I am whatever he needs.

Meanwhile, Adam does his best to be patient, tailoring his teasing to be publicly acceptable and making me laugh so the strain of absorbing medical texts, documenting his results and deciding on surgery, radiation and medication do not bring me to a teary meltdown. We are “companions in arms” and “sidekicks,” where we are now. Our relationship has morphed with each doctor, hospital, surgery, symptom and piece of bad news. We have developed our own plan and definition of forever.

It is not my choice that I speak on his behalf in the significant medical meetings with world gigantism experts, the ones who will decide his future. I want him to run his own healthcare. For the most part he could now. Often I’m shushed politely and doctors redirect questions to Adam. He bristles, and replies, “I go through all this crap and she knows about all this crap. That’s how we do it! I have nothing to add to what my mom says. We are a team.” He needs it this way.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Caregivers Who Try to Be Strong Enough for the Both of Us

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Halfway through my sophomore year of college, I was diagnosed with a brain tumor. I spent that spring and summer in doctors’ offices and hospitals and bed. My family and friends spent that spring and summer right by my side. For months, I was unable to walk on my own; I lost parts of my vision; I couldn’t sleep or keep food down; I was angry and
was depressed. My family was strong and resilient. So one night, in a hospital bed a week into my longest and most trying stay, I wrote them this letter.

My loves,

It’s been a hard few months for us. We’ve been through a lot, and we have more to come. This isn’t easy, but we are doing the best we can. You are doing the best you can.

Thank you for being by my side. Thank you for every time you’ve held my hand and every time you’ve told me we will get through this, even when I didn’t believe you. Thank you for lying to me when I ask you if I look OK when I’m self-conscious about my bed-head. Thank you helping me up when I’m dizzy but have to use the bathroom. Thank you for pretending you aren’t watching me with held breath and a worried mind when I want to walk on my own. Thank you for lifting my wheelchair in and out of the car a million times. Thank you for the forehead kisses and for holding my hand during every needle or poke or prod. Thank you for driving me around to doctors and errands.

Thank you for loving me the same. Thank you for being by my side.

I’m sorry. I’m sorry you are so tired, which I can tell from your eyes. I’m sorry for the days when I’m irritable and frustrated. I’m sorry for the times I can’t muster up a smile or a good attitude. I’m sorry all we talk about is my health, but I promise I care about your life, too. I’m sorry life isn’t very fun right now. I’m sorry all your free time is taken up by my doctor’s appointments and running back and forth to the hospital. I’m sorry I’m not always myself.

I know this is hard for you. I know I’m not the only one in this fight, and I know you are hurting too. I know you aren’t as sure as you pretend to be when you tell me it’ll be OK. I see you when your eyes tear up, and I know your heart is full of worry; that is OK. You are trying to be strong for me, and I love you for that, but you don’t always have to be. I know there will be days when you are frustrated and tired. There will be days when you do not have enough strength to be strong for both of us; I will pick up your end on those days. We can take turns.

This is going to get harder. I’m going to be scared before I start treatment, but your hugs will help. I’m going to be tired and grumpy while I recover, so you will need your patience. I’m going to be bored and bedridden post-surgery, so I need your friendship and
company.

But I promise we will get through this, and I will get better. And when this storm passes and we find brighter days, I won’t forget you were by my side. I won’t forget every time you made me laugh when I was scared or hurting. I won’t forget the days you spent with me just lying in bed knitting or watching TV or entertaining me when books couldn’t. I won’t forget the hours you spent sitting by my hospital bed or the energy you used to push my wheelchair. And I hope you never face any storms, but we all do, and when your forecast isn’t so bright, I promise I will be by your side.

I love you,
Tori

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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4-Year-Old Living With Multiple Illnesses Has Ecstatic Reaction to 'Get Well' Cards

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Sometimes it’s the simplest things in life that mean the most, and for 4-year-old Caden Allen, that simple thing is a card from a stranger.

Caden, from Sutherland, Virginia, has many medical complications including severe acid reflux, asthma, allergies, an under-active bowel and bladder and a recently diagnosed brain tumor, KSL.com reported. Although benign, the tumor can still cause problems in the future as it grows and puts pressure on nerves, potentially affecting Caden’s ability to walk and talk.

In order to keep Caden motivated through his many doctor’s appointments and treatments, Caden’s mother, Alicia Allen, asked for people from all over the world to send him “get well” cards. People complied, and now checking the mail is Caden’s favorite part of the day.

I got my own box!” Caden exclaimed excitedly after getting the mail.

Check out Caden’s excited reaction to receiving his cards in the video below:

To send Caden a card, use the address below. 

“Cards for Caden”
4403 Chesdin Boulevard
Sutherland, VA 23885

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Her Husband Passed Away 8 Months Ago. He Still Made This Valentine's Day Special.

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In 2012, Jim Golay was diagnosed with brain cancer. Early last year, he learned that his tumor was inoperable, according to KCWY 13. He passed away last July at age 53, but thanks to some advance planning, his widowed wife, Shelly, will feel his love for the rest of her life.

This past Valentine’s day, Shelly Golay received a vase of roses from her husband at her home in Casper, Wyoming — eight months after Jim passed away, USA Today reported. Dumbfounded, she initially thought her children must have sent them. She learned that Jim had set up the posthumous delivery with a local flower shop. Golay posted a photo of the bouquet and the accompanying card to her Facebook page.

The card reads, “Happy Valentine’s Day Honey. Stay Strong! Yours Forever. Love Jim.”

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Via Shelly Golay’s Facebook page

He set up such an amazing gift for me to receive that,” Golay told ABC News. “That act of love to me is just true love in its purest form.”

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To the 2 Strangers Who Asked the Right Questions About My Daughter's Cancer

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“How is she recovering from surgery?”

As if it was totally normal to ask. As if the bald head and jagged bright pink scar was just another fact of life, like freckles or a mole.

You stood there in the hot sun with your children and the ice-cold lemonade. Sour lemon tamed with sweet crystals, summer in a cup.

I mentioned rehab and how well the scar was doing, and it was the most natural thing in the world. Like a child with a skinned knee.

No treatments, no cancer diagnosis, no talk of chemo. Just… how she’s doing now.

I didn’t ask how you knew. I don’t know if you had a child who struggled with their own trials. Or maybe a friend’s son or daughter. One who wasn’t “like the rest.” One who was different.

Perhaps not. Perhaps you just somehow knew, without asking. But I loved that you asked. More, I loved that you didn’t ask.

Superhero

“Are bubbles OK?”

Of course bubbles were OK. They weren’t going to hurt her. But you stood there, leaning against the rails. Your family surrounded you with a seemingly happy, healthy little boy delighting in the simple joy of bubbles.

You regarded us with a simple gaze, offering no commentary on what you saw. You noticed her differences, the bald head and hospital-issued wheelchair, the angry scar slashing her scalp. But all this you took in with frank simplicity, without question.

Just another fact of life.

No gawking, no endless stream of questions, no wanting to know what was going on with her. And at the same time, you expressed a simple consideration for her health. As if it was a simple fact of life, you wanted to make sure it was OK. Worried that a small activity, one that reflects the epitome of childhood and carefree happiness, could possibly present harm for a little girl.

She was different, but you saw her heart, the childishness that beats in the heart of every young person. The simple joy in watching free-falling iridescent spheres as they float between heaven and earth. Despite your concern of any risk it might pose, you wanted to include her.

Both of you, strangers on the street. I’d never met you, and I haven’t seen you since. A single passing moment, a fleeting brush of lives, two out of the millions on this earth.

It’s amazing the impact two strangers can have without even knowing it. Your careful consideration, your simple acceptance of reality, your perceptiveness astounds me. I hope you never lose that.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Dying Man Writes Hilarious, Outrageous, Downright Perfect Obituary for Himself

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This is a man who managed to maintain his sense of humor, even in the darkest of times.

Aaron Joseph Purmort, 35, died peacefully in his home in Minneapolis on November 25, after battling brain cancer since 2011, according to his wife’s blog.

In his final days, Purmort found a creative way to leave his friends and family — as well as countless strangers — with a smile after he was gone. With his wife, Nora, he wrote a lighthearted and funny obituary for himself. In it, he reveals he’s Spider-Man, calls for his son to avenge his death, and claims he was previously married to singer Gwen Stefani.

Courtesy of Instagram user "noraborealis"
Courtesy of Instagram user “noraborealis”
Screen Shot 2014-12-02 at 10.59.36 AM
Courtesy of Instagram user “noraborealis”

Below is the obituary, originally published in The Star Tribune:

Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father’s untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.

I’ve never laughed and cried more in one sitting,” Nora Purmont said in her blog, about writing the obituary with her late husband. “But I’m so glad we got to do this. I love this man so damn much.”

Instagram user noraborealis
Courtesy of Instagram user “noraborealis”

In this dark time, Nora Purmort has evidently also been able to maintain her sense of humor. She recently tweeted some funny remarks about her husband’s claim to have been married to Gwen Stefani.

A YouCaring page has been set up for the family; visit here to donate. Check out Nora Purmont’s blog, My Husband’s Tumor, for updates on the family.

h/t Reddit Uplifting News

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