Living LFS

Have you hugged a MUTANT today?

I have. 5 years ago I learned that not only did I pass a dreadful genetic mutation on to one of my children, all four of them had it. Just like me.  I think of how I never got a chance to meet my grandfather. How my children never got to meet my dad. I want to meet my grandchildren.

Our bodies don't fight cancer like "normal" people's bodies do.
Where we only have one cancer fighting p53 gene, Most people have two.

So cancers grow and grow and grow.

Sometimes two or three at a time. Sometimes in itty bitty children. Sometime more than one family member at the same time.

Families should stick together. They should NOT get cancer together.
Children should NOT get cancer.

Almost 80% of pediatric adrenocortical tumors have mutations in the tp53 gene.  Not only did Lily's tumor have mutated p53- all of her cells do. She is a mini-mutant. It means she is at much higher risk for developing cancer again. So we screen her and hope we will be lucky. That she will be lucky.

The other kids have the mutation. We have been lucky so far. We screen them and hope we will be lucky. That they will be lucky. Those that know us know we just finished this routine. It's stressful. But we do it because it's our best odds. It's a part of living with a hereditary cancer syndrome.

Lily's drawing of us walking. It's in our genes. 

50% of people with Li Fraumeni Syndrome, mutants- as we affectionately call ourselves for the mutation in our genes, will get one cancer before they are 30 years old. I was lucky. I beat the odds. I was 36 when I got my first cancer.  My brother wasn't so lucky. He was 15.

In 2009, I tried to find others with Li Fraumeni Syndrome online. Facebook connected us, this rare group whose sense of humor was as twisted and warped as their DNA. Yet I am convinced, these mutants exemplify the theory that adversity only makes us stronger. They are truly the most resilient, positive group of people I have ever met. I heard stories just like mine. I heard stories more heart breaking than mine. They researched for me, with me. I researched for them.  They cried for me, with me. I cried for them.  Then we laughed together. We grew stronger together. We talked about a need in our LFS community, a need for community. They all were Living LFS with me. We were Living LFS together.

We finally got to cash in years worth of virtual hugs at a LFS Conference in Boston.  Real Hugs. Real Mutants. People who understood what it was like to have Li Fraumeni Syndrome. And they were living with it. Even though LFS is rare, our stories are not. In the LFS community the stories are far too much like mine, generations of cancer, far too many kids with cancer, way too many cancers.

www.livingLFS.org

I am proud to be a part of a new organization that will focus on bringing mutants together to share those stories.  This organization is LivingLFS.  I am passionate about helping mutants find the information and support they need to make living with Li Fraumeni Syndrome easier. I sincerely hope that someday we can truly make an impact and support research that will change the fate of LFS. We are already planning our first mutant meeting in Portland this October! Just to keep life interesting between raising 4 mini mutants in a military family in between chemo treatments!

In order to do this, we needed funds for a meeting space and since the Team Mallory Shirt was such a huge success- we decided to give t-shirts a whirl for LivingLFS through a CustomInk Booster. And it worked! It's working! We already have enough support to cover the meeting room and even some snacks during the meeting. I am so proud of the community and support for mutants, especially since it is such a rare syndrome. If you would like to show your support for LFS and our mission of supporting those with LFS and raising awareness for this disease, please check out the link below or just tell someone if the subject presents itself that you know someone Living with LFS- because that could really make a huge difference to someone with LFS! Have you hugged a mutant today?

https://www.booster.com/livinglfs

It's not a tooma, it's a rock.

So the battle has begun again. Many do not know the sordid past of my tumor history or this particular part of my sense of humor. I personally have not had a tumor. And I don't really find them particularly funny. But sometimes you have to step outside and laugh a little and so tumor humor was born. I did not invent tumor humor- but I was raised by it. You have to deal with the hand you are given- even if you have to trade a few cards in along the way- you are still stuck with your basic hand. My basic hand was riddled with tumors. My dad and all of his siblings have or had cancer at least once- and only 2 of them are around to tell their stories. My brother and cousin both died from cancer in childhood. As my uncle recently informed me- you are allowed certain leeways when you are the oldest surviving member in the "dead zone". Tumor humor is one of those things. You make jokes because you have to, because the days are long enough- you need to laugh to get through. If you aren't ready for that- I suggest perusing something a little more benign(puns count...) like a blog about the weather. I'm sure if my grandmother had better sight and any knowledge of what computers can do- she would have a kickin blog about the weather- she can tell you down to the degree the weather anywhere she has ever lived or where anyone she has ever known currently lives or has lived. But this blog is gonna be about Lily, and her tumor which as she says" it's not a tooma, it's a rock in my belly."