At 6pm on Friday, October 17th, 2014, mutants gathered in the Pine Room at the Embassy Suites in Portland, Oregon. As they munched on crudités and exchanged hugs, laughter spilled out into the hallway. While most would find the subject of hereditary cancer to be anything but laughable, this group of cancer fighting warriors knows that laughter truly is the best medicine. This is especially true when you get to laugh with others who know what it is like to live with Li Fraumeni Syndrome.
A round of Mutant Speed Dating got the evening started and gave everyone a chance to spend a few minutes one-on-one with someone else who has been touched by LFS. We shared stories of scars and scares, recovery and hope. There were spouses who got to meet other spouses for the first time. After the common topics of football and occupations were adequately explored, they ventured into other areas of conversation, the ones not usually touched upon, as the menfolk recognized that they were in the company of others who truly understood the fears of walking alongside someone who is living LFS.
A mini mutant found friendship with two other children, whose mother has LFS. They played hide and seek while the moms discussed reconstruction and testing and the particular issues of parenting with LFS. Young adults discussed the unique challenges of having multiple cancers by their early 20’s. Despite the unusual topics of conversation, it felt more like a family reunion than a support group social. The evening ended with everyone looking forward to seeing their new friends the next morning.
When we decided to meet in Portland, we thought it would be great to have a speaker for the group. I immediately thought of Dr. Ribeiro. Dr. Ribeiro graciously accepted our invitation to speak via conference call and prepared an amazing 30 minute presentation on Pediatric Adrenocortical Tumors as Sentinel Tumors for Detecting Germline TP53 Mutations. A summary of his talk and slides from the presentation can be found HERE. Dr. Ribeiro went on to spend another half an hour expertly answering questions from the group. His work is an excellent example of how screening and early detection can save lives.
|Dr. Raul Ribeiro’s Slide Show|
After Dr. Ribeiro’s talk, we broke for coffee, tea and fruit, then heard from Courtney Ma’at who spoke about Stress and LFS. She made profound comparisons between Post Traumatic Stress Syndrome and LFS. She also shared some tips on how to identify and to cope with the stress of LFS and will be sharing those with us in a future blog post!
We ended the meeting with an open discussion about future meetings(we are looking at October 2015- location to be determined) and possible fundraisers. We quickly posed for a group picture and I for one had a tough time saying goodbye- so, many of us caught a train to town and had a final dinner together!
I can not thank the Mutants enough for making this such a special weekend. It was an honor to be able to hear your stories and experiences. Thank you for traveling to share them with us. To the Mutant supporters- whether you are a spouse or family or a friend- we could not do any of this without you. To the Board Members of Living LFS, you are phenomenal and I am so impressed with the event that you pulled together in a few short weeks and I am excited to watch this grow. Thank you from the bottom of my heart for helping make this a reality. To Dr. Ribeiro who shared with us his time, experience and an amazing presentation, we are supremely grateful and indebted to you. To the Embassy Suites, who really worked with us to make this a great experience, we are thankful. And to Ami- whose knowledge and skills made this weekend one I know several mini mutants and mutants alike will always remember- THANK YOU! Jennifer Mallory