This VERY grainy photo is of my daughter, Brittany, with her photo she entered into the Marin County Fair. You can *just* see the blue ribbon behind her head : ) Yes, she took FIRST PLACE!!! I nearly, but didn’t, cry when we came around the corner and saw that ribbon. She has been my photographer for most of my Sew Weekly challenges this year as well so its nice to get some validation that the work you do IS good. Other than that which a mother gives : )
When she entered the photo she had to drop it off and wait to see if it would be accepted into the contest, that wasn’t a guarantee. Then it was but she wasn’t allowed to write any back story to the picture so she titled it “For my twin”.
Here is the back story – A few years ago my friend Crystal found herself in a nightmare that no one can ever imagine. Right around Halloween her daughter Ariel had a swollen eye and thinking it was pink eye they trotted off to the ER. Within a few days Ari was diagnosed with a very rare, very aggressive form of cancer called Rhadomyosarcoma. 350 cases are diagnosed a year in this county and on that day it was Ariel.
She started a treatment regime that included surgeries, 30 rounds of radiation, multiple scans and tests, 21 rounds of chemo and a rollercoaster of a year that she and her family emerged from exhausted but at least NED (no evidence of disease). Five months after she started her journey my husband was diagnosed with cancer so instead of bonding over make-up and cocktails we would talk about chemos and diets and late night crying sessions. There came a point in my husbands journey where the toll of taking care of him 24/7 AND working became too much and one night Brittany almost lost her mom. She called Heidi, a mutual friend of ours, who stepped in and made life tolerable again as she did so many times for Crystal. Between Crystal and Heidi, who is also Ari’s god mother, we ALL made it through.
Three years ago Crystal became the Chief Organizer and Bottle Washer for the St. Baldrick’s event that Oakland Children’s Hospital holds each year. St. Baldrick’s raises money and awareness for Pediatric Cancer Research by holding shaving parties where shavees are sponsored, each one trying to outdo the others in fundraising. The first year we helped out we looked out over the lobby at Children’s where the event was held to see a sea of blue – Oakland Police and Firefighters came out in droves, there were representatives from a dozen other police departments as well as the Coast Guard, family groups, friends….it was AMAZING. I think that year the event raised $100,000. Tow years ago we were going for $125,000 and made it a little over $150,000. For a short period of time we were the top event in the state, until the “46 Mommas” moved their event to L.A. to coincide with the “Stand up to Cancer” live broadcast. If you’re going to be outdone then having the “46 Mommas” sweep you is an honor : )
Last year, on Valentine’s Day, Ari was diagnosed with a relapse, just as plans were coming together for St. Baldrick’s. How Crystal and Heidi pulled it off it a testament to the strength you find inside you when you need it. This year we did over $170,000 but again, how they pulled it together just amazes me. Every year, Crystal’s husband and teenage son along with Ari’s TWIN sister have shaved their heads in solidarity. Elora, the girl in the photo, is Ari’s twin. This year Brittany took her camera and one really big lens and took hundreds of spontaneous portraits. She chose this one for a school project and most of the time when you say “Elora is shaving her head in honor of her twin sister who is fighting cancer for the THIRD time” you get tears.
So this is our tribute to a family that has been through so much, to a battle that literally changes every day. Ari is currently battling, she was able to come home from the hospital a couple days ago after getting her sinus’s cleaned out (the site of the original tumor) since she’s contracted a nasty infection called MRSA for short (it’s a super bug, the kind of thing you can only get if you are severely immunocompromised). She also had a bone biopsy of a suspicious large “tumor” in her femur that we had all thought was a progression of her disease. Turns out, in a VERY happy turn of events, that it was “only” a bone marrow die-off, with a possible secondary infection but NO CANCER CELLS. While it seems perverse to celebrate a marrow die-off and infection this is the world of cancer. This doesn’t mean she doesn’t still have cancer, she does. It just means that today it’s not in her bones. She has tumors in her brain and spinal cord and is not considered “curable”. They are trying to give her the best quality of life for as long as possible. When you hear a 13 year old girl say she’s not ready to give up, she’s still going to fight…it puts your own struggles into perspective. My mantra has become “Hey, if it’s not cancer, it’s fixable and everything will be fine.”
Crystal was instrumental in helping out with one of the most popular posts here, the Harry Potter/JK Rowling birthday post (July 31). Ariel and Elora are wearing the robes I made for them : ) Ari was still recovering from major brain surgery but had a smile that glowed and Elora was being her goofy wonderful self. I vowed that if anything happened with Ari then we would suspend the blog for a bit. We never had to do that but there were a couple of times we came close. We have no idea how much further this journey will go but whatever is needed from us, we’ll be there.
If you want to find out more about St. Baldrick’s you can go here.
If you want to follow Ari’s journey you can go here.
A few weeks ago the San Francisco Giant’s honored Ariel’s bravery and she threw out the first pitch. She was weak from chemo, scared and Sergio Romo walked and talked her through it. He has become a friend and fan of theirs, even re-tweeting “Ari-isms”. You can get updates on the Team Ariel facebook page as well as Crystal-isms : ) Ashton, who we featured March 28, was a friend of Ari’s and her mom Judy is a friend of Crystal’s. Such a small world.