Lily-kayda's Family and Their Tales of Terrorizing Tumors: Team Mallory Takes on St. Baldrick's

There is that spot in my heart that aches when I think of what Lily went through druring chemo. It leaves marks that aren't polite to talk about at parties, but They are there, always. I think of what we all went through. The unknowns. The fear of losing her. The helplessness. The gracious help from family and friends. We were learning more details about Li-Fraumeni Syndrome, a risk we all carry. I had only met a couple others online at this point who "got it". The Ramers just lost their son Brent last year, after YEARS of cancering. And our hearts hurt. This shouldn't happen. Organizations like St. Baldrick's are making a difference.

Oh monkey.

Bella Boo- by Lily's side most of chemo

Phillip and Lily's special bond and ELEPHANT!!

sisters. first. forever.

This is how we feel about Childhood cancer.

SO in 2014, when Lily said she wanted to shave her curls, well that achey spot lit on fire. By now- I had a mutant posse of friends- each one fighting cancer in their own hell. Ah LFS- we got 53 problems but obviously a tumor suppressor ain't one of them. I had a tight knit group of sistahs, who became my life line as I navigated chemo for the first time. We told our kids about their kids. The Ramers(aka Ramernation) were going through the delights of everything LFS had to throw at them- multiple cancers in multiple children and NO clear path. Their momma Ann is one of few who I would go to to clarify science questions- she knew it all and if she didn't she'd find out. Somewhere in the middle of all of it, we formed living LFS, because we didn't want other families to be without the support we had found. She is one of the fiercest advocates I have ever met.

Living LFS mutant sistahs.

When Lily shaved her head for St. Baldrick's the first time- all those burning spots of PTSD flared up but mostly we all became empowered to see her - her strength. I was extremely honored that she wanted to honor me, but I have had a beautiful life. My heart aches for our little warriors, through no fault of their own, have their years cut short by cancer.

https://lilykaymonkey.blogspot.com/2014/04/finding-something-she-can-do.html

I don't always trust odds, numbers, risks. They are guidelines. There is just so much we don't know- so much just plain old LUCK. No one wants to beat cancer more than someone else- we don't want cancer to win. Yet as we wait yearly for scans, we try to make healthy choices, we try to live. We check in with our LFS friends - Brent and Lauren Ramer who seemed to be wholloped with one rare unicorn cancer or condition after another. The entire time we've known Brent, he'd been in chemo or dealing with a new cancer. Lauren has tumors pop up, they deal, and just keep living, she just finished chemo to have yet another tumor removed. . The odds are an analysis after the fact. We try to make a difference by sharing our stories, our experiences. Maybe one of our weirdisms will help someone else. If not, then there is research. Organizations like St. Baldrick's who fund severely under funded childhood cancer research and treatment protocols.

https://www.stbaldricks.org/blog/post/the-girl-who-beat-the-odds-lilys-story

In 2016, I had just been diagnosed with brain metastasis. The clock ticked loudly. We hunkered down. Just like Phil had the overwhelming need to take Lily to football games and disney, we needed to go to Europe. We never had a honeymoon, we are always day to day. That trip gave us so many memories and completely recharged us. We facetimed Lily fo her shave. It was not about me- it was about her doing what she could to help. She lost friends too, Haley, Abriana, Elikia. So many more were still fighting cancer, like Brent. Years of chemo and fighting and nonstop cancering. living cancer LFS style. but kicking ass and taking names- Chuck Norris style.

Lily rocking it after shave 2.
Photo credit:Debbie Leanne.

http://lilykaymonkey.blogspot.com/2016/03/lilys-second-shave-for-brave-st.html

So here we are - 2018. Lily signs up for her 3rd Shave. Not phased that she's now 13, that middle school crowd is kinda tough. Yet she is a force to be reckoned with. The little ginger haired toddler who napped almost exclusively in hospital rooms, is now almost a teen and last week says- I'm gonna shave for St. Baldrick's! Ok, why. For Lily. Ok then. We can all shave. Ok, see if Phillip and Kiera will. And of course when the youngest asks- the eldest teens say- yeah- that's a great idea and it suddenly becomes a competition as to who can raise the most money. They all set up their own pages and have told their friends. I had many many happy proud tears and big hugs of my mini mutants.

So I realize we ask a lot for help with fundraising. I appreciate our friends' and family's generosity. If this is a cause near to your heart- please pick a monkey and donate. If you can't decide, we've all agreed that Lily can be the default! All money goes to St. Baldricks!If you would be so kind as to share this blog, any of the kids' pages wide and far-we'd appreciate it! If you would like to join us (no shaving required) the event is April 22, 2018. If you'd like to hire out kids to do cleaning or lawn work or whatnot for donation- Mallory kids are at the ready. Bella already is helping make leis for me to earn $ for the shave.

Thank You for continuing to support Team Mallory and our Many Adventures, Especially adventures that Fight Childhood Cancer!