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!

Lily's Page

Bella's Page

Phillip's Page

Kiera's Page

Jen's Page

Cycles.

I have 3 girls.

Enough said.

Karma. Payback. I was NOT that tough a kid. THREE girls.

Phil is oldest of 6 boys. One sister. This karma is on him. And where is he? Bali.

I'm actually happy for him. He keeps sending me these glorious pictures of seafood(gag.) and beautiful scenery. Ambassador, goodwill, whatever the mission- he's earned some good food and star treatment. For the love of God- he works 3 jobs(he would disagree- but, well seriously) and takes care of US. 

I'm still trying to get a handle on my "cycles". The girls are still getting a handle on theirs. Bella technically does not have one yet. Hell, I don't have a uterus or ovaries- but apparently we are all in this together. Dobby ate a quarter stick of butter today- I guess we'll see how it goes.

We are all just trying to find our way through this crazy thing called life. We are living. It's messy. It's hard. And it is fucking beautiful. Sometimes I cry uncontrollably.  Sometimes I laugh. I text friends, I drink. Sometimes it's tea. Sometimes it's vodka.  What else can you do? The ups. The downs. The cycles.

I'm trying 4 week cycles of chemo instead of 3 week cycles. Literature says....standard of care says... well, we are used to going off map. My platelets held steady this month. That's good. My onc is concerned about the bone mets- scans are ordered- fingers crossed. Haven't taken a gander at the ol brain in awhile. Need to do that. I get a couple more good days each cycle now. That is good.  One shark at a time.

Kiera has a stress reaction- aka-almost break, could someday be a break-aka owie on her spine. Most likely from her competitive lil self (despite adamancy that she does not want to compete..)contorting herself in all kinds of ballerina craziness. She is resting from dance and healing. It breaks my heart. It's not huge, but she is such a beautiful dancer. She will find her zen. I have no doubt. She reminds me so much of me sometimes and god damn it I want better for her. She asks to stay home from school more often. Mom and I used to call them me days- then mental health days. My counselor friend says it's ok- one a month is reasonable. Kiera's now coincide with my tough weeks. It's her way of helping. I love it. I HATE it. Don't get me wrong- it's not all bad- just the growing pains. She's got to do it. For both of us. I want her to fly. She will.

Phillip has a brain. Seriously- he's 18- we were all kinda wondering. Research says something about male brain formation not complete until 25- IF. I . HEAR. THAT. ONE. MORE. TIME. I might form a brain and develop it up someone's... well anyhoow. He has a cyst- it's been there- and another one resolved- yeah us...and a smattering of lymphnodes that aren't concerning, but we will check on, because well we are tumorific. Hopefully its just allergies and well gross teen boy crap. I honestly love our mornings together. I missed him so much last year. He will do great things. He needs to take care of himself as much as he takes care of his friends...that sounds familiar. He just has to trust himself. He's got the wings, he just has to focus on using them. He will.

Lily. Almost 13. THIRTEEN!!! I can not, NOT cry just thinking about it. It could have gone so many different ways. It hasn't been easy. BUT it is ALWAYS worth it. It's not perfect. We are not perfect. But she is HOPE. She is my hope. She is my strength. She drives me out of my ever loving mind. I would not have it any other way. Before Lily, I did not know living with cancer. Cancer came, ravaged and left me to carry on, living after cancer. Well sort of, kind of. Each time is so different. I am thankful. For her spirit, the reminder. To Persist. To appreciate. To pray, even just for a little luck. She is my luck and I wish nothing but good luck for her. She can do so much. The glass ceiling- breakable. She will.

Oh dear Bella. I love her. May strangle her. God may not give us more than we can handle- well we are certainly testing boundaries with this one. I just think- if she was my first, second or third child- I would be at a complete loss. As the youngest- well- life. Cycles. Humans. Luck. She's gonna move mountains in the most random hysterical way. Or if it's easier to just fly over them.  She will.

Parenting- not for the weak. I may post the smiles and the good, we have our fair share of ugly. Everyone does. Marriage. Wow. And I married my best friend. The person I love more than anyone. The person I like more than anyone. Most days. Hell- tried to reproduce and carry on the gene pool. Need a few more floaties- but we keep swimming. Genes and humans- not perfect. Quite frankly a big hot mutated mess. Yet we love, we live, we pass on the cycle. Always trying to leave it a little better and prettier than we got it. Nailed it. Mic drop. *

*"better" and "prettier" are entirely subjective. Still nailed it.