In November of 2005, I was diagnosed with a rare and aggressive cancer called malignant pleural mesothelioma at the age of 36. This is strange because this cancer caused by asbestos is usually found in men over sixty, rarely a young woman. But looking back I realized that my father used to work with asbestos when hanging drywall, and when he would come home I’d wear his dusty jacket to do my outside chores. That small amount of exposure changed my life forever.
The most shocking part was that the diagnosis came just 3 ½ months after giving birth to my daughter, Lily. In those three months, I was shedding weight so quickly, about five pounds a week, and my husband Cam and I began to feel concerned. When the diagnosis came in and I was told I’d have 15 months to live if I did nothing we were devastated! But my Lily saved me. Nothing could have caused me to fight harder than hearing I might not live to see my daughter turn two.
The next year of my life was a blur. I went into surgery in February of 2006 to have my left lung removed through a super invasive surgery. I spent the entire month of February in Boston, 18 of those days in the hospital. My baby girl went to live with my parents, 2000 miles away from me. I missed her entire 6th month of life and to this day I’m drawn to babies at that age! Exactly one month after my surgery I was finally able to fly to my childhood home to recover and be with her, so my parents could help take care of her while I recovered from surgery. I was not able to lift her out of her crib or do much more than just sit with her. I needed all the help I could get caring for her during the next couple of months. My husband had to stay at our home in Minnesota and work because bills don’t go away when you are sick – they still need to be paid. Then came four sessions of chemo, followed by 30 sessions of radiation! I feel blessed to be here today and have to thank my doctors’ and family’s support for helping me through that period of my life.
Fighting cancer, traveling for checkups, my limitations – this is all Lily has ever known. She grew up with this reality. As she’s aged she’s become more aware, started asking questions and really understanding what cancer is. Cam and I made the decision to be open and honest with her. She hears when I talk to other patients and comforts me when someone I know dies from the disease. For our family, it’s important to include Lily every step of the way.
It was around kindergarten that she noticed I didn’t have the same stamina as other parents. I couldn’t climb on the playground or chase her around the park without becoming out of breath, but I made sure to still be involved by helping in the classroom, baking together and more.
Every six months I travel from my home in Minnesota to my doctor at the Baylor College of Medicine for scans, just to make sure no tumors are growing again. Around 7-years-old Lily started to notice and could sense my own “scanxiety.” I remember one time I was getting ready to leave for an appointment. She said, “Mommy my tummy hurts” and I responded, “oh it’s probably something you ate.” She looked up at me with these big eyes, tears starting to well up, and said, “I’m afraid your scans won’t come back good. What if you have bad scans, mom?” It was at this moment I know she KNEW what was going on. So I took the time to sit down and explain everything. I have the best doctors and I go to check ups to make sure I take care of myself and we can quickly take care of it if something bad does happen. Prevention versus reaction is something kids understand. Explaining I’m doing this for the best and letting her know I’m here for her was the best thing I could do to reassure her.
My cancer is not the only health issue Lily has had to cope with. My dad was diagnosed with clear-cell renal carcinoma a few weeks before Thanksgiving 2014 and heartbreakingly that was his last holiday season with us. Due to complications with his health and the 600 miles between my home and my parents’, we were unable to spend Christmas together. Lily began to get upset that Christmas wouldn’t be the same as it usually was with her grandparents not there, so I again sat down with her and took the time to explain why, without sugarcoating anything. Kids are incredibly perceptive and she deserved the truth. It may not have been Christmas as usual, but we had a good time together and thankfully were able to fly out and ring in the New Year with my parents.
Today, Lily is involved even more so. Mesothelioma awareness is centered in September. This past September Cam and Lily joined me for a fundraising event called Miles for Meso to support the Asbestos Disease Awareness Organization. We went as Team Casa VSJ and together the 1,200 walkers/runners raised over $40,000! It was really amazing for Lily to see the team of Meso Warriors out there and understand why I’m always talking with other patients and their loved ones.
I love to speak with patients across all spectrums of cancer because I think it unites us. Helping through the tumultuous times is a passion of mine because I lived it, I experienced it and I want to support them in their journey in any way I can. One way is parenting. I can’t tell anyone how to raise their child because each family knows what individual approach is best for them. Personally, I wouldn’t promise that everything is going to be fine because you don’t know that, and I think pretending nothing is wrong and shielding a kid is a mistake. Luckily the approach Cam and I took worked for us, but that doesn’t mean it will work for everyone. Instead, when I do advocacy work and talk with cancer patients to help them through the process I try to provide suggestions or takeaways rather than specific steps.
Here are a few I’ve learned along the way.
1. Include children in the caregiver routine. Kids are intuitive. They notice your changes and know you’re sick. They need to be reassured that you are fighting! Ask them to help you in this fight, not as a primary caregiver, but as a partner. Invite them to cuddle while you watch a movie and recover from chemo, for example. Let them know they are an important part of the journey, not a tagalong or in the way.
2. Empower children to open up about their stresses. So much change can really affect their moods, behavior, relationships, and learning. Give them the security that though things may be crazy, you will cherish every moment with them and are open to talking about anything on their mind. Keep them in school and enroll their immediate community (teachers, friends’ parents) in your care so they can wrap your child in a protective bubble as well.
3. Offer a support system. Children don’t want to feel like the odd person out, so giving them resources like therapy or group camps where they connect with other kids going through the same thing can be beneficial. I’ve never sent Lily, but I’ve heard great things about Camp Kesem.
As challenging as a cancer diagnosis is for a family, the more you come together, the more you can all grow through it!