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

Hair Trouble with Tribbles

Chemo does a lot of fun things to your body. One of THE most dreaded is hair loss. I've watched this side effect wreak it's physical and emotional havoc on many many loved ones and friends. It sucks. It sucks when you walk into walmart with a bald 4 year old and the looks of pity, the looks of despair, the looks of saddness.  Even more so are the looks from your loved ones, their despair and saddness when the person losing the hair- is you.

I was not afraid to lose my hair. I know women who have turned down chemo for no more than that reason alone. It's hair- it grows back.  All it needs is the right environment and time. Sometimes in order to get a plant to bloom it's best flowers- you have to dead head it. It then is forced to channel all of it's energy into growing roots instead of the pretty but temporary blooms. So although for a time the plant may be bare- once it's roots have latched on- the new flowers will be better, bigger and healthier.  Chemo is a form of dead heading.

It's not fun. The hair loss doesn't hurt, but my scalp was tender- like a sunburn. Hair usually starts thinning 3 weeks after chemo with any drug that causes hair loss. Last week mine started coming out in bunches. Bella would grab handfuls every time she walked by.  Gifted some crappy genes- I also got good, thick hair genes.

I took a shower and there was a tribble in the bottom of the tub. It was hideous. It was an obsessive compulsive nightmare. Anyone who's ever lived around girls- knows the shower drain issue is a huge point of contention. We shed.  The mass evacuation started.  The kids were having a tough time dealing, so I offered to let them cut it. Bella was the only one excited. Of course- the day of my first chemo she expected my hair to be gone, even adults have a tough time with the process- I had to explain to her it would take time. I knew one thing- I didn't want to battle it. It was going to happen and I wasn't gonna let it linger miserably with Donald Trump denial.

So after avoiding showers and watching the wisps of hair spiral around the bathroom while trying to dry it, I had enough. My friend Lani found a salon here, Salon808 whose owner Henry donates and styles wigs for cancer patients. She hesitated- the catch is they need to shave your head so the wig will fit right. No problem- I had already promised Bella she could do that. I asked her to call and  make an appointment and that would be our deadline. Thursday it was. The problem was getting Phil and Phillip and Lily on board. My friend Debbie was on call to share in the night and was kind enough to take pictures-all photos from here on out are with heartfelt thanks to Debbie Leanne who continues to bless me with her friendship, quick wit and photography skills despite throwing her into cramped spaces with poor lighting conditions. But there was wine...of course she brought that too.

Phil's faced much adversity in his life and most people have no idea. His compassion and no nonsense attitude was cultivated out of years of necessity. I hate that this cancer bullshit is bullshit and in anyway a part of his life. I could not and would not be the person I am without him beside me and I know he feels the same way. The hair is symbolic of the sickness and how much it is threatening our happily ever after. I get that. But I am a picker- I rip scabs right off and this one had to go. The deadline was key- for as much as he dreaded being a part of this major moment, he would never ever miss it. Although he did drag his feet plenty.

Debbie beat him to the house with treats and appropriately themed wine! Like I said- she's a keeper.

I texted my sister in law. Another amazing and selfless soul- to be at our beck and call while caring for 2 babies and still trying to get settled while her husband travels. But I knew my nephews were a necessary part of the distraction for both Phil and Phillip. Hopefully they won't feel compelled to cut off everyone's hair from here on out.

Lily requested to cut my ponytail off. If we had waited a day or two longer- there wouldn't have been one! Clumps of hair pulled out every time she tried to grab on. Someday I will read to her about Sisyphus and she will get it. She probably would anyhow.

Kiera wanted to stylistically cut my hair. A wedgy bob like hers.  She took her time and actually proved to be fairly skillful. I've had worse haircuts at supercuts.

Bella couldn't wait to shave it off, but kept herself busy collecting every bit of hair as it fell.

Well- this fuzzy picture was mine...won't let Debbie take the fall for this one.....

Phillip wanted no part of it. We coerced him into cutting a piece. I think I've shaved leg hairs that were longer than what he managed.















We tried a Miley Cyrus do...

And a flat top.....

And finally the full monty.....which is when it hit Lily.

But this is part of the process. I want my kids to know I face it head on. It's Ok if they want to do something different, but they are a part of me and therefore a huge part of this. Hair is temporary. I didn't break. Was it hard- sure. I know it was a zillion times harder on them.  Do I want to keep this look- not really. But without boobs and without hair- sometimes people are forced to look you in the eyes or look away- then you can really find out who needs to be in your life without all the pretenses. It's a lesson I would have much rather taught my kids over hot cocoa and a broken heart or a friendly spat, but you play with the cards you are dealt. And the ones that matter will make the journey with you, even if it's uncomfortable.

And in the end you also find out Bella never really wanted to shave your head- she just wanted a Tribble.