2015: The Year of the Mutant

I gave my son cancer. Not a lot of mothers can say that and I’m sure none would want to. I also advocated for him and ensured that his cancer was taken away before it could spread.

At the age of 34, I thought I had almost everything I had ever wanted: a kind and caring husband, a beautiful two-and-a-half-year-old son, and a happy home in a nice neighborhood. I had left my teaching career when my son was born and was hoping to have another child to complete our family. I got pregnant in January of 2015 and quickly realized that something was wrong. I was cramping horribly and spotting, but my OB said to wait it out and that I was likely about to miscarry. After an ultrasound, the radiologist on the phone told me I had an ectopic pregnancy and needed emergency treatment. He also told me that I had a mass on my adrenal gland and needed to follow up with my primary care doctor. While the loss of my pregnancy was shattering in and of itself, the “mass” was worrisome as well.

Kari, Michael, and Owen

After several appointments with my PCP, she insisted that I have a biopsy of my adrenal gland tumor. I did something that saved my life: I Googled. I wanted to learn everything about this adrenal situation. My only health issue over the years had been a diagnosis of anxiety with panic attacks that had plagued me for seven years, but I was managing it fairly well. As I researched, I realized that my symptoms fit many criteria for a rare type of tumor called a pheochromocytoma, which produces massive amounts of adrenaline and closely mimics panic attacks. My doctor completely dismissed my self-diagnosis, stating that she treats anxiety every day and had only diagnosed one person in her entire career with pheochromocytoma. I held my ground and contacted an endocrinologist who worked in the same building as my PCP, who ordered several tests and saved my life. My fears were confirmed: I had tumors on both of my adrenal glands, which needed to be removed as soon as possible. The seven years of panic attacks had actually been caused by an identifiable, physical problem. The test results, coupled with the CT, MRI results and several other tests my new endocrinologist was smart enough to run, led to a diagnosis of a disease I had never even heard of: Multiple Endocrine Neoplasia type 2a (MEN2a). MEN2a is a disease caused by a genetic mutation, which results in tumor growth on multiple endocrine organs, specifically in the adrenal glands, thyroid, and parathyroid glands. I have medullary thyroid cancer (MTC), a very rare type of thyroid cancer. The only treatment for all of these tumors is surgical removal, as traditional chemotherapy and radiation do not work.

MEN2a is an autosomal dominant disease, meaning that my son had a 50% chance of having received the faulty gene from me. Over a long spring, summer and fall, we tested everyone in my family and, thankfully, everyone was negative. I was the first mutant of my family. Until, that is, my nearly three-year-old son was tested. I was completely devastated. I had prayed that my son would be negative. As a mother, I would have traded any amount of surgeries or suffering to keep my son healthy and to protect him from this life-changing disease. I apologized over and over to my husband for causing this situation. The guilt still wracks me at times. I haven’t yet figured out exactly how and when I will explain to my son, this beautiful little human, our diagnosis. And to make matters worse, in order to prevent his thyroid from becoming cancerous, he needed to have it removed before he turned five.

The time spent grappling with my son’s diagnosis, investigating the disease, and preparing for his surgery included several major surgeries of my own. On April 30th I had major open abdominal surgery to remove both of my destroyed adrenal glands. This left me with adrenal insufficiency – I take oral hydrocortisone daily to survive. Adrenal insufficiency is manageable, but comes with its own set of life-threatening worries. It is similar to diabetes in some ways, mostly because I need medication to survive. It is also different, however, because there is no current monitoring system to test myself to see if I need more medication. When most healthy people get sick, their adrenal glands support their immune systems and can produce extra cortisol. If I get the stomach flu and cannot take my oral medications, I can go into severe shock and need to go to the hospital to be treated. Unfortunately, given how rare it is, even the best hospital staff and emergency medical technicians may not know much (if anything) about adrenal insufficiency. So I live with the daily fear that, if I need emergency treatment, no one will know what to do to save my life. My quality of life has changed pretty dramatically. I am exhausted by little things and, while I may have several great days, I also have days that I’d rather spend in bed. My son is my reason for pushing myself to get out of bed in the mornings. I’m still afraid. I’m afraid of being a chronically sick mother who never has the energy to play or do fun things. I’m afraid he will resent me for giving him this disease. I suppose I live with a new kind of anxiety diagnosis.

Kari and Owen

A month and a half after my adrenalectomy, I had my thyroid removed June 20th along with several lymph nodes, one of which tested positive for the MTC. The cancer had spread outside of my thyroid. We don’t know how much cancer is in my body now, but my team of doctors monitors the cancer closely and that is all I can do at this point. I don’t know if that makes me a cancer survivor or not, because I live with cancer every day. And I have my whole life. But ignorance was bliss.

Once we finally got my son to a specialist in July, I had made up my mind: I wanted the surgery for him as soon as possible. My son had his picture taken at preschool two months before surgery and I remember lamenting, “This is the last school picture I will have of him without a scar across his throat.” Five months later we traveled across the country to find the best doctors. It was so much more difficult to be his mother during that trip than it had been being the patient through my own surgeries. No child should ever have to be hospitalized, but the surgery saved his life. A biopsy revealed that he already had cancerous cells inside his thyroid. I realized that the photograph was also the last school picture in which he had cancer. Although we can’t entirely rule out the possibility that he may develop other tumors in his lifetime, I’m doing anything and everything I can to make his life easier. I’m learning as much as I can about this disease and planning to raise money for more research and raise awareness.

Kari and Owen

My life is not what it once was, but my diagnosis has taught me to see everything in a completely different way. Taking my son to the park used to be a bit of a chore, but now I relish the fact that I can walk him there and watch the pure unbridled joy on his face. I feel like life slapped me in the face—it hurt and it hurts still. That slap also woke me up to everything around me. I live on slightly borrowed time, but we all do. We just don’t always think about it every day. Living in each moment and savoring it completely is a gift that this disease has given me and the disease can never take that away. I sometimes feel like I may be dying. But, in each and every moment, I am truly living.

27 thoughts on “2015: The Year of the Mutant

  1. Thank you so much for sharing your story. Many blessings to you, your son and your family. You are inspiring. What an incredibly difficult journey you are walking… but with such grace. Thank you x

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  2. Beautifully written Kari, you ARE truly living! Your boys are blessed to be guided by a mother who is so full of life, and will continue to advocate on their behalf, meanwhile live with the continuous strain of this illness. I know how hard it is to do just that each day, keep spreading your love and living your beautiful life ☺️💛 – Miranda XOX

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    1. Thank you Miranda. My story is different than yours, but I’ve drawn strength this last year and half from reading yours. Your positive attitude through it all and sense of humor are inspiring! I feel lucky to “know” you!!!!

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  3. Beautifully written by a beautiful & strong mama. Thank you for sharing your story & I hope by doing so you help many others 🙂

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    1. Thank you Lorna. I couldn’t have gotten through last year without you ladies and your support. Let’s be honest, I couldn’t have survived the last four years without you! Thanks for always laughing at my bad jokes. 🙂

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  4. Very well-written, Kari. Ver inspirational to us mothers, who are in your same situation. I too, have MTC and passed it along to one of my sons. He had surgery at age 11 and is now cancer free. Just reading your story affirmed that the road I travel us not easy, but I am not alone.

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    1. Thank you, Kelly! I’ve found that the Facebook groups taught me so much and made me feel less alone through everything. We may be rare, but we are not alone and there is strength in numbers. I’m so happy to hear that your son joined the group of children in our community who will not have to deal with the MTC as he grows. We will educate and support them to make the journey easier for them! Please contact me anytime!

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  5. Kari, your strength, words, determination, passion, and love for your son are truly inspirational. My heart aches for all of you on this difficult journey. Thank you for sharing and I cannot wait to see you and hug you.

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  6. Kari, I relate well to your story. Look how pro active you’ve already been by getting yourself and then your son to a specialist! I inherited my father’s cancer. On retrospect I think he had it my whole childhood but I didn’t know. He was dad. He had bad days but that meant his good days were that much more fun. He/I had the SDHB mutation. Dad had paraganglioma tumors that weren’t monitored as they would be today and spread and spread. His only sister died of paragangliomas and it was then I knew I could inherit a rare cancer but tumors didn’t appear until I was 50. I felt lucky. I feel every day is a bonus day. I’m 8 years into 4 surgeries and like you there is no cure and I have new mets in my liver . . . AND my 2 1/2 year old granddaughter is coming over today to play. That is my special reward for sticking around this long. I do have a son who has not been DNA tested. His motto in life “No Worries” . . . And if he were to develop tumors he’d never blame it on me . . .

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    1. Thank you for sharing your story, Cathy. Everything I’ve learned about SDHB makes it sound pretty difficult. Keep finding the positives!

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  7. Stay strong Bear! I’m so proud of your efforts to fight this and make a difference. Many people would feel victimized and simply give up. Keep fighting girl…for all of us.

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  8. My Dear Daughter, Bear, I want you to know that I am overwhelmed with your response to this situation. You are truly an inspiration to all of your family and friends. I guess your childhood nickname “bear” has morphed into a “Mamma Bear” role. Bless you, my child. I will always love you deeply. Dad

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    1. Hello, Davisons/Dahls. Thanks for sharing your story, Kari, which I’ve been following through your Dad. It sounds like you’re doing what you need to for yourself and your family. And I know their support (and that of many circles of your friends and acquaintances) will help sustain you all.

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  9. Hi, Kari! I happened across your blog and was so sad to hear this update. My youngest, Isaac, was in your 2nd grade class at Dickinson. He’s now finishing 10th grade at Tesla STEM high school and doing great; most likely heading toward Mechanical Engineering. Your little Owen is such a sweetie and you look like the same friendly, beautiful, vivacious person that you were when we knew you back when. None of us know what cards life will deal us. You seem to be facing them with a lot of determination, love and grace. Bless your sweet family. I am sure this will be a significant part of your every day, but not the only part. Thank you for the reminder to be truly alive and aware of all the wonder that we may otherwise take for granted.

    Julie Perrin

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    1. Hi Julie! Of course I remember Isaac, and your husband who helped us run Tech Club. Thank you so much for the kind comments. Please tell Isaac hello for me!!!

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  10. My dear Kari
    I happened across your story via yourFB connection with Lauren.
    What a remarkable story, know that we Wooster’s hold you and your beautiful family in our hearts.
    My children still remember you as the best child sitter ever. I know you are an awesome Mother as you are an awesome person.
    Keep up the positive, have no guilt, you have pursued all the right stuff.
    All our love, Jane Wooster

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  11. Dear Kari,

    What a story. As a mother with SAI and a 3YO I can relate to many of your feelings, especially those in your conclusion. My husband and I refer to the year+ where I was ill and undiagnosed as “The Black Year”. Things started getting better for me when I was hospitalized in June 2015 for pneumonia and consequently diagnosed with SAI. Your story is well written, and very clear. I wish you luck with your advocacy. I also hope that you and your son continue in health and hope that you to find yourselves in the care of committed and knowledgeable doctors. There is nothing better than feeling as if your doctors are part of your team, and nothing worse than feeling like they are not.

    Warm regards,
    Leslie Povall

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  12. Hi Kari, Just wanted to pass along that my daughter was diagnosed with MTC Medullary Thyroid Cancer in 2009. She started a foundation as well to find a cure as well as to find new drugs. Unfortunately Michelle’s had spread to her lungs before she was diagnosed. She was quite an inspiration to all who knew her as well as others with this disease. She was a fighter. Her foundation is REACTthyroidfoundation.org. On her website you can hear her story. We have several fundraisers for REACT throughout the year one being runners in the Chicago Marathon every year.

    God Bless you and your family Kari…🙏🏻🙏🏻🙏🏻💓💓💓

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  13. Oh Kari – You are so BRAVE and STRONG and it is an HONOR to know you!! Thanks for inviting me to your blog. I am really glad to stay in touch with you. Please know that I am praying for you and your husband and that incredibly darling boy of yours. He is BLESSED that you are his MOM!!! Unconditional love is the BEST GIFT!!!!

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