Friday, August 29, 2014

Breaking Even

Another BIG day for Georgia this week, and this is the post I wrote for the St. Baldrick's blog:

When your child is diagnosed with cancer, numbers become a huge part of your life. There are measurements to track, dosages to follow, time periods to mark, and key dates to remember - all of which serve to quantify and make real an otherwise unfathomable event. 

In the case of my daughter, Georgia, a much-too-high white blood cell count indicated she had leukemia. No other alarming symptoms, just a number. She was officially diagnosed with Acute Lymphoblastic Leukemia (ALL) on December 31, 2009, the day after her 10th birthday. Those two days between her being 9 and 10 made all the difference in the classification of her leukemia (High Risk for ages 10 and up) and the treatment protocol we had to follow. She started chemotherapy on January 1, 2010, and went into remission on January 29th, but to keep her there, she still had to undergo 27 more months of treatment. Her protocol included countless pokes and blood draws, hundreds of chemo infusions, eight blood transfusions, three surgeries, 25 spinal taps, and over 4,000 pills.

I know all of this because I counted everything. I wanted every moment of her fight recorded and honored for the incredible feat that it was - and still is.
Some people say they enjoy working with numbers because it makes sense. Things are black and white, right or wrong, and there is no emotion or opinion involved. I used to agree with that notion, and when Georgia was diagnosed, I responded by trying to find some order in the whirlwind. So I calculated, tracked, and anticipated every number, every step and asked a  million questions. But I quickly realized that nothing about childhood cancer makes sense. There is no black or white, only many questions answered with, "It depends." Nothing is right about a child fighting for their life, and everything is wrong when as a parent, there is nothing you can do to protect them. And the situation is full of emotions and almost as many opinions.

And still, having that data and a proven treatment plan to cling to was a source of some comfort. Knowledge is power, and having even a basic understanding of what "her numbers" were and what they meant prepared me for what the day would bring so I could prepare Georgia. She was very engaged in her care, and I searched for every opportunity for her to maintain any amount of control, so just checking off each day in her treatment plan felt like a victory against the chaos.
Georgia took her last dose of chemo on April 29, 2012, and we've been celebrating the 29th of every month ever since. And today, August 29, 2014, she is 28 months off treatment. The break-even point. She has now been off treatment as long as she was on treatment, so starting tomorrow, every day that passes is one more day that she has over cancer. 850 days in the red, and now she's in the black.

But while we're celebrating, I've still got others numbers in my head. 46 - the number of kids diagnosed with cancer in the U.S. every week day. 80 - the percentage of childhood cancer survivors who will have severe or life-threatening conditions as a result of their treatment. 5 - the number of years post-treatment before we can say Georgia is officially cancer-free. (Less than) 4 - the percentage of federal funding that is directed to childhood cancer research.

This is why our family is dedicated to raising awareness, hope, and research funds for other families in the fight. Those numbers don't make sense, and we don't accept them. We know we can do better and have enlisted allies to change those numbers by supporting the St. Baldrick's Foundation. Finding cures and safer, less-toxic treatments for kids fighting cancer is our NUMBER ONE priority, and it is our obligation and our privilege to continue banging the drum as loud and as long as we have to until we see the end of childhood cancer.

On December 31, 2009, my daughter was 1 of 46 kids diagnosed with cancer. Today, she is a survivor who has turned the tables on leukemia and taken back every day she spent fighting it. Although a bit battle weary, she will continue to move forward, defy the odds, and own her victory, as she should, because she is truly #1.

Wednesday, August 27, 2014

Back to School

Such a BIG day today! Georgia is now a high schooler! The first day of school was actually Monday, but she spiked a fever on Friday evening and was in bed for three days. We took a quick trip to the pediatrician on Monday, and she said it was probably a bug, but because Georgia had been in the river at camp for two weeks straight, and her temp had hovered around 102 for two days, we should run a few tests to make sure it wasn't something more. She's feeling much better, and despite missing the first two days, she jumped into 9th grade today like the super STAR that she is! We can't wait to see what the new school year brings!

High School uniform!

Class of 2018, reporting for duty!

Friday, August 22, 2014

Home Again, Home Again

Camp closing today! Georgia's tribe, the Kiowas, got the big win, 
and she got a Silver M award for her arts & crafts work. 
It also appears we'll have a new camper on site next summer! 
Until then, Mystic Love to all from Georgia!

Thursday, August 14, 2014

Catch of the Day

Well, Georgia is thoroughly enjoying her third time at Camp Mystic! Her letters are full of exclamation points, and her pictures are all smiles. One picture from today reminded me of one from her first time at camp in 2011. She was still in the throes of treatment, but she was so happy - and determined! - to finally be at camp, she pushed through and had a wonderful time. And now in 2014, having to sit out last year made her return that much sweeter. I think it's interesting to compare these two pictures, with all of their similarities and big, big differences.

We also got great news from the survivorship clinic today - EKG and echo were normal! Now she can more than likely go two years until we have to do those tests again. We're so glad she's going into the new school year so healthy and strong - and ready to swim for the STARS! School is just around the corner, as is September, and we've got some plans to celebrate both, doncha know. Stay tuned!

Thursday, August 7, 2014

Extra! Extra!

SUPER Sib Alert! On Tuesday, Ivy cut 12 inches of hair to donate to Wigs For Kids! Georgia was so inspired, she went for a Pixie cut, too! And so ended our Mutual Admiration Society activity for the day.


Cousin Claire cut hers to donate, too!

Thank you, Birds Barbershop!

We'll be sending in these locks to make a beautiful wig 
for a child in treatment. Ivy's ready to start growing it out again!

Also in the news, literally, is the 46 Mommas Shave for the Brave! Since the event a week ago, we have been noticed by media outlets from around the world - England! Italy! Greece! Holland! And besides the many, many local outlets that featured individual Mommas' stories, we made national news with the Huffington Post, and I had the opportunity to share Georgia's story with  and The And we woke up Boston! Spreading awareness, near and far!

While I wrap up things from the shave, we're also preparing for Georgia to go to camp on Sunday. But tomorrow, she's having her first EKG and echocardiogram since diagnosis. We know she'll pass with flying colors and will be ready for two weeks at camp and then ... high school! She has much to look forward to, and we have much to be grateful for, so thank you, thank you for your continued support!