A journey in heartache leads to big-hearted action.
A NOTE FROM DGT's BLOGGER:
This week we are honored to welcome Heather Von St. James. Heather is a 12-year mesothelioma cancer survivor and activist from Roseville, Minnesota, who was given 15 months to live when her daughter Lily was just three months old. Since surviving mesothelioma, Heather has dedicated her life to fighting for regulations that limit exposure to asbestos and championing protections for environmental health, all in hopes of seeing an asbestos ban in the United States someday soon.
Heather's experience as a parent and an advocate offers incredible lessons in resilient, big-hearted parenting.
When people learn that my little girl was only three months old when I was diagnosed with mesothelioma, the reactions immediately go from sympathy to shock to sadness and they always ask, “How did you do it?”
How could I not?
I was faced with a terminal cancer diagnosis on November 21, 2005 and Lily had just been born in August. Heck, she still had that new baby smell, and here I was faced with the very real possibility of not being around to raise her. To say I was scared was an understatement.
Both my husband and I were fortunate to have incredible support from our families, so we did not have to face this possibility alone. My parents jumped in to raise Lily, while my husband and I traveled across the country for my life-saving surgery. During treatments, friends and families cooked, cleaned, and watched Lily so we could concentrate on healing and recovery.
As Lily grew, we never hid our story from her. I’m thankful she was so young during the worst of the treatment that she doesn’t remember anything. What she knows is what we have told her and shared with her. We are honest and upfront about what this cancer is, and she knows that it could come back but also knows I’m seeing a mesothelioma specialist to stay on top of it and ahead of it. We’ve had to have some pretty touchy discussions in her young 12 years and no preteen should carry those thoughts.
We encourage open, honest dialogue about cancer and the fears that come along with it. Most of the time she does really well, but then something will happen, like me getting sick, and her fears come out.
I was put in the hospital recently for early signs of pneumonia, which can be deadly with me since I only have one lung.
I know she was scared, so we called in our reinforcements to help out.
Friends and family at times like this are so vital. I made sure that I communicated with her from the hospital on Snapchat, which is her preferred texting method, and it helped. I asked her to send me funny videos and a stuffed animal to keep me company in the hospital. She herself had a bad cold, so coming to the hospital to visit wasn’t an option.
I was in the hospital for 2½ days and came home to one very happy kid. This is what works for us. I can’t say that this will work with every family out there.
I have found that including Lily in on my recovery gives her a sense of control over the situation. She is a great caregiver! But I’m here to say that in a health crisis, you need to do what you know is best for your family.
The other thing that has been of great help through the years is telling her teacher at school what is going on. This was especially important in grade school where she had one main teacher. This way, the teacher could anticipate anything going on and understand if she wasn’t quite herself.
Enrolling others around you in your decision not only empowers your child to accept what is going on, but lets them know that others care about them and what is happening. It is important to get extended family on board too.
Anyone in any caregiving role should be on the same page as you, so your child feels safe and secure no matter what.
I didn’t really reach out to anyone for resources during my cancer battle, partly because I simply didn’t know where to look and 12 years ago, the resources weren’t as readily available as they are now. I’ve since learned of a great family-oriented place that helps families cope with a cancer diagnosis: Gilda’s Club.
Gilda’s Clubs are named in memory of comedian Gilda Radner. Best known for her work on the original Saturday Night Live, Gilda died from cancer in 1989. Shortly thereafter, her family and friends opened the first Gilda’s Club in New York City to honor her wish that no one face cancer alone and to commemorate the life-changing support she received. Gilda learned how to live with cancer by connecting with others and by reducing her stress and aloneness. Gilda’s Club continues her legacy.
I know so many families who have benefited from membership in Gilda’s club. After all, cancer is a club that no one willingly signs up for, and having resources are key to getting through the tough times. There are 54 Gilda’s Club locations major metropolitan areas around the country. Discover a location near you here.
In addition to the help of such resources, I do know this much – kids are resilient. They have ways of coping with things that we don’t even understand sometimes. The important thing I have found is to give kids a safe environment to ask questions. It’s ok to not know the answers; you only can do the best you can. I’m proud to say that even with all of this going on in our lives and the constant reminder about mesothelioma, we have found ways to triumph over the tragedy.
We use the anniversary of my surgery as an occasion to celebrate life and raise money for two mesothelioma nonprofits that have made a huge difference in so many lives. One being the Mesothelioma Applied Research Foundation and the other is the Asbestos Disease Awareness Organization.
We took a day that could have such negative connotations and turned it into a party! We call it Lungleavin’ Day, the day my lung left. We throw a huge party, invite 100+ of our closest friends and family, and celebrate life and conquer fears. We mark the occasion by taking a ceramic plate, writing our fears on it, and smashing the plate into the bonfire in our backyard.
People LOVE it! I mean, how often do you get permission to smash a perfectly good plate? It is an incredibly cathartic moment and everyone really loves it. There is great power in giving a voice to your fears then smashing them to shards in a bonfire. The kids even love it. Often their fears are things like monsters or even broccoli, but nonetheless, they take great joy in smashing plates in a fire.
Turning things around from a ‘bad’ thing to something else is a great way to give your kids a sense of control over a situation. Lily is really involved in the planning and is in charge of the ‘Kiddie” area. We turn our upstairs into kid land and they have their own dance party and game time up there, while the adults have a great time outside and downstairs.
The best advice I can offer is this: trust your gut. You know your family better than anyone and you will instinctively know what is the best route to take if and when a health crisis enters your life. I know that honesty and enrolling others in our lives is what works for us. Resources are available and on the Internet, many are just a Google search away.
Just remember, you are a good parent. No matter what you do, it will be the right thing. Trust your gut, and know you are doing the best you can. Your medical team can be a great resource for materials and support groups, so don’t hesitate to reach out and ask. That is what they are there for.
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