In Memory of D’Ana Reed. Founder. Mutant. Sister. Friend.

 

D and Court

D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D’Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D’Ana lived is very much the foundation of Living LFS and refected in our core values: Community, Compassion, Respect, Integrity and Levity. D’Ana had brilliant ideas and was the first we’d go to when we needed ideas. She came up with the idea for our first T-shirt fundraiser- Have You Hugged A MUTANT Today?

D tre mills ramer mutant

She was the first to pack up and hit the road to visit a friend in need, her mutant family just gave her many more opportunities and these connections were so valuable, she wanted others to have the experience too. After many years of living with metastatic breast cancer, D’Ana passed away, as she lived, with the ones she loved most right there. We lost more than a mutant sister that day.

 

Courtney shared with us D’Ana’s words of wisdom and we know she’d want us to share them with you.

 

My sister and I have shared a lot of things over the years, but of all the things I could have possibly shared with her, a genetic disorder that makes you prone to multiple cancers certainly was not on the list. I wish this was one of the things I could have hidden from her so she couldn’t have it, like the “good Barbies” and other toys I used to stash in order to keep them from her clutches. If I could go back in time, I would much rather share those than share this. But we are here now together as Mutant Sisters and making the best of it. So I will share with you a few things that I have shared with her in hopes that you too will be able to find some bright spots on your journey.

Surround yourself with POSITIVE ENERGY.  A positive attitude and keeping company with positive people can and will get you through anything. Sure we all have bad days…we’re entitled, but try not to let them weigh you down.

BE SELFISH! Now is not the time for you to take care of the needs of others, they should be   reminding you to take care of yourself so you can be as healthy and happy as possible.

LAUGHTER is a daily necessity. Cancer is no laughing matter, but let’s face it…isn’t everything a little bit easier when done with a smile and a little bit of giggling?

LIVE life FULLY AND COMPLETELY. Be proud of who you are and the fact that you are a fighter. Keep trying new things, meeting new people, traveling and experiencing all that life has to offer.

-D’Ana Reed


Using Family Loss to Sing Awareness of LFS for Mo and Kerry

 

My name is Kathy Higgins. I have lost 4 family members to LFS.

 

lfs-bio-minus-photos-just-pics

KERRY

Kerry was first diagnosed with cancer at the age of 12, an osteosarcoma in her thigh. She received chemo and had multiple operations on her leg. Kerry also had several small cancer issues over the years, skin spots on her face and back. She was not diagnosed with LFS at the time because the year was 1995, and LFS was just being discussed.

KerryShe was 30 years old when she passed away in 2014. She had a recurrence of breast cancer from 2005. Without the LFS diagnosis, her breast cancer would not have been detected due to her young age. She had a double mastectomy in 2006 when precancerous cells were detected in her breast. Kerry knew there was a 93% chance those cells could turn into cancer. About 1% of breast tissue was left after the surgery and that is where the cancer started to grow, fueled by pregnancy hormones. Many LFS breast cancers are hormone driven cancers. Kerry was the mother of 2 little girls, ages 3 and 5. She had a loving husband of 8 years.

MO

Maureen.In 2002, our second daughter Maureen who was 18 years old at the time, developed a stage 4 adrenocortical carcinoma before we even knew she was sick. At this time, doctors decided it was time to look further into our family history. Maureen had surgery and chemo, but did not respond well to chemo. We lost her within 4 months.

 

FINDING LFS

Upon researching our family history, we discovered my husband’s dad passed away at age 37 in 1966 from a brain tumor. In 1993, my husband’s sister died at age 32 after battling 3 different cancers, Breast cancer, cervical cancer and leukemia over 2 years. Now LFS was discussed as a possibility and Kerry was tested and positive for Li-Fraumeni Syndrome. My husband also tested positve, but not until 2015, until then we presumed he was positive since Kerry was.

My husband Jim did not present with his first cancer until the fall of 2014 with a sarcoma in his arm. The sarcoma was treated with radiation prior to surgery in 2015. All went well until another sarcoma was discovered in his thigh in May 2015. The sarcoma was removed with no recommended follow up treatment by Dana Farber Cancer Institute. We are scheduled to go back to DFCI in November for follow up and to check for new cancers.

MAKING A DIFFERENCE

As a wife and mother, I was beside myself with grief and terrified my husband was going to suffer the same fate as Kerry, Maureen, his dad and sister. I felt so helpless to stop this disease. I decided to become an advocate for LFS awareness and raise money for research. I want to be able to help identify other families that have the same mindset we had, in that we were just an unlucky cancer family. That changed when our LFS diagnosis was found. LFS Awareness is key to survival. Many doctors do not know about LFS and are missing key signs in families that could be affected with this mutation. My goal is to travel to all of the doctors and medical facilities in my surrounding area and try to educate them about LFS. Then they can help LFS families stay healthy. Currently we have to travel 6 hours one way just to meet with a doctor that is familiar with LFS and can help us follow a healthy protocol to screen LFS patients for early signs of cancer. In this day and age, this is just not acceptable. So, in September 2016, I travelled to California to attend a rare patient advocacy training conference, so I can be a better, more effective advocate for awareness and fundraising for the LFS community.
I can never bring back my daughters, father-in-law or sister in law, but if I can even identify one family that could be saved from the heartache our family has endured, it will be worth it.

MO SONGS FOR KERRY

Mo songs for Kerry Hiigins fam

I started an organization called Mo Songs for Kerry.org with a couple of my girls’ friends and family. Every year we host a large fundraiser in upstate New York. Our 4th Annual event will be July 29, 2017. We use this event to raise awareness for LFS but also to raise money for research. Local news stations helped us do this for our past event, we had 4 different stories run in the local TV market. We are very grateful for the support our local media has given ups and the awareness of LFS. A portion of the proceeds also go to a local hospital run guest home that caters to families with loved ones in the hospital and patients who are going through long outpatient treatments.

Li-Fraumeni Syndrome is a very difficult thing to live with. You are always waiting for the other shoe to drop and you feel like the boy who cried wolf if you go in for every lump, bump or pain as if it is cancer returning. It makes living a normal life more difficult but at the same time you learn to appreciate every day you are given. If you are diligent with screenings, you can live a normal life.

LIVING LFS

We can not let living with LFS cause us to not live life to the fullest. WE will do our best to live and honor our girls and their memory by living life as healthy and happy as we can. We know this is how they would have wanted it. Kerry lived with LFS for 10 years and got married, started a business and had 2 beautiful healthy non mutant little girls. She carried firewood into her house 3 short days before she died and was entertaining all the people in her hospital room mere hours before she passed away. She lived life to the fullest even with the tremendous burden on her mind. I am very proud to be the mother to these two special ladies and I hope to make them proud with my efforts to make a difference. I will be a warrior beside my husband and do everything I can to help him be screened carefully and get treated right away if any signs of cancer appear.

I am very grateful for the LivingLFS.org website and support group where we can connect with other families going through similar problems. We are all stronger if we support one another and share our trials and tribulations as well as our joys of negative test results and positive treatment outcomes. Before discovering this website we did not know a single LFS family. Hugs and Prayers to all of you out there dealing with LFS. We are stronger together!