Created by Kevin Eastman and Peter Laird in comic book form in 1983, the TMNT named after Italian Renaissance artists made their home in the sewers of New York City. Preferring to be hidden from society they often ventured out to battle aliens, petty criminals, and evil overlords. They peaked in the 1980’s and early 1990’s due to their franchise popularity. In 1997 Venus de Milo was introduced as the first female turtle.
I first was introduced to the power of the TMNT by my sister Viola. She was working as a teacher at the time. She told me about an encounter she had with a youngster on the play ground who refused to come in from recess. When she approached the little boy he explained that his TMNT turtle shoes had become muddy. He was beside himself trying to clean up his sneakers. Viola had never understood the younger set obsession with the TMNT set (too violent and she had yet to embark on her artistic career.) Until after sitting down with this despondent child. I don’t remember the details of their conversation but she was a TMNT fan going forward based on their interaction.
The US National Library of Medicine describes “Li Fraumeni Syndrome is a rare genetic disorder that greatly increases the risk of developing several types of cancer, particularly in children and young adults.”
In 2016 I was diagnosed with breast cancer. Viola succumbed to metastatic breast cancer 3 years before at a time when genetic testing was focusing on BRACA. My Mom was diagnosed in the early 1990’s. Her mother, my grandmother died at age 30 ,when my mom was only 4 years old, long before the era of genetic testing. My mom is living strong at the age of 82.
When I was diagnosed with cancer it was recommended that I under go genetic testing. Reeling from a cancer diagnosis, I didn’t prepare myself for possible outcomes from the testing. My initial thought was that anything I can do to further research on this insidious disease would be helpful for others,
While still wrapping my brain around a double mastectomy I received a call from the genetic counselor on my way into work on my husbands car radio I hear the following “You have a very rare genetic mutation of your TP53 gene. This predisposes you to a number of cancers. It is recommended that you alert other family members of this finding.” White noise followed. What what? My children ages 16 and 12 might have this same mutation? I need to tell other family members about a possible ticking time bomb that they knew nothing about.
The boys and I and Dean sat in a room at Children’s Hospital to be briefed by a genetic counselor regarding Li Fraumeni Syndrome. Weighing the pros and cons of having these two lovely teenagers tested. A test that could change their lives significantly. I pretty much lost my shit trying to reconcile insurance policies and my kids’ right to know. Carson who had lived a life battling asthma said he wanted to take the test. Austin didn’t want to. It was explained to us that even if the boys didn’t take the test they would need to be treated as if they did indeed have LFS. What does that entail: blood tests, mri’s scans, etc.? Austin eventually agreed to the test as well.
A couple of weeks later Eric, the boys’ dad, me, Dean, Austin, and Carson went over the results. Austin has the mutation and Carson does not. Austin’s immediate reaction, “I’m glad it is me and not Carson.”
Austin begins his surveillance for LFS. Full body MRI’s, ultrasounds, blood tests and brain scans. I’m sitting at work calling Kaiser to get the results of Austin’s brain MRI and getting no response. Finally, I hear back from an on call doctor. Austin has a brain mass and will need further surveillance.
In a room at Children’s Hospital in Denver we meet with a Neurosurgeon and Pediatric Oncologist. Their prognosis is promising. Austin’s choroid plexus mass seems benign. Only way to know is to do a biopsy which the do not recommend. Best just to monitor.
Fast forward to the present. Austin wants more than anything to be a pilot. First step is to get his FAA medical approval. Austin has been trying for months to submit the required medical documentation to get approval. It has been a painstaking process. He submits forms and they ask for more. What if we hadn’t gone through with the genetic testing goes through my mind every time he receives a letter asking for more documentation?They wouldn’t even know. Is information really more power?
Carson wrote the following:
“I didn’t tell you that my aunt died from cancer.
She died from breast cancer
I didn’t tell you that my mom is a cancer survivor,
Because she had great cancer
I didn’t tell you that I have an older brother that will be in college soon,
because he is almost done with high school.
I didn’t tell you that my parents are divorced
When I was very young
I didn’t tell you that I might have a mutated gene,
That will make it more of a chance to get cancer
I didn’t tell you my family has been pelted with cancer their whole life,
Because the have a history of cancer.
I didn’t tell you that my cousin had a bad in May,
My family was very excited
I didn’t tell you that my dad hasn’t owned a house for many years,
Because he hans’t had enough money
I didn’t tell you that my mom and her boyfriend got engages.
Because they have been together for many years
I didn’t tell you that I love my family.
Folks with LFS often identify with elephants and TMNT as talisman for our journey through this often harrowing journey.