Wednesday, February 29, 2012

Leap! Leap! Leap!

We are literally leaping on this Leap Day as it also marks the two month countdown until Georgia is OFF treatment! More leaping! She is feeling so good and enjoying school so much, we are just bouncing off the walls around here. April 29th has been on our radar for almost two years, and it will be here before we know it. And we're READY!

Today also marks the five month countdown to another event we'd like to share with you: On July 29th, I'll be going to Los Angeles to SHAVE for the Brave with the 46 Mommas! In support of St. Baldrick's and the 46 children diagnosed with cancer every day, this group of moms from all over the country have gone bald and raised over $600K in their first two years, and we're hoping to break $1 million this year! I'm thrilled to be a member of the Class of 2012, and as this is our family's major fundraising focus this year, I would so appreciate your support. You can find my donor page here or by clicking the button in the sidebar. Thanks, y'all - and Happy Leap Year!

Monday, February 27, 2012

Knowledge is Power!

If you've spent any time around this blog, you've probably guessed by now that we're big believers in education - seeking out, soaking up, and sharing information. It's a belief that has helped Georgia and our whole family (and hopefully some of you) navigate this journey as we prepare for, and then reflect on, every step of the way. And so it was that Trevor and I went to Dallas this weekend for the Lone Star Blood Cancer Conference, presented by the North Texas Chapter of the Leukemia & Lymphoma Society. This free annual event is open to all patients, caregivers, and health care professionals, and the topics covered diagnosis and treatment, research, survivorship, and - first shot out of the barrel - the Methotrexate shortage. These folks came prepared!

We, of course, attended the ALL-specific breakout sessions, and it was very comforting to hear the same information there that we've been hearing from our treatment team here for the past two-plus years. And in a word, the news is GOOD. Georgia's post-treatment prognosis is GOOD. And so we are THANKFUL.

We also took the opportunity to visit with the different vendors at the conference, and Trevor registered with the National Marrow Donor "Be The Match" Program. It really is SO easy and could absolutely mean the gift of life if you're matched with someone in need of a blood stem cell transplant. There is only a 30% chance of finding a match within a patient's family, so the need is great. To join the registry, all it takes is a short donor information and history form and four swabs of your cheeks with ginormous Q-tips:

  And that's it!

As much as we've asked y'all to donate blood, this is equally important! Click these links for more information on the donation process (including some myths and facts - BTW, it doesn't hurt!) and how to join the registry (either online or by finding a donor drive near you). You could Be The Match!

And while we cats were away, our mice sure did play - with Poppa at the St. Catherine's (Grand)Father/(Grand)Daughter Dance. A great time was had by all!

Thursday, February 23, 2012

Run, Austin! Run!

From the Superhero Kids water stop at the LIVESTRONG Austin Marathon last weekend - what a great day! Georgia took her job very seriously, and she did an excellent job of keeping those runners hydrated:

Stack the cups

Fill the cups

Pass out the cups

Have fun and pose with superheroes!

Our stop was in a more remote section of the course, so we were able to get up close and personal with the runners. It's really an amazing and inspiring thing to see people pushing themselves in such an endeavor. And the sense of pride they must feel when they finish! Reminds of me of somebody else I know ... : )

Tuesday, February 21, 2012

Complex and Difficult - But Possible!

Big news just one week after we posted about the Methotrexate shortage - Today, the FDA approved the import of MTX from one pharmaceutical company and approved the application of another company to begin manufacturing preservative-free MTX in the U.S.. Even so, Dr. Peter C. Adamson, Chairman of the Children’s Oncology Group, said that while he was pleased that the immediate threat of a shortage had passed, "this is at best a Band-Aid approach to the problem.” He went on to challenge Congress to enact the legislation to fix this problem in the time-frame that he can get kids with ALL into remission: 4 weeks. His testimony (audio clip here) was informative and inspiring and provided what I imagine will be a battle cry for this issue until it is fully resolved:

"I certainly understand that passing legislation is complex, difficult.  I suspect, however, that it is no more complex or difficult than curing a child with cancer. And I can absolutely tell you, it is no more complex or difficult than what children with cancer face everyday.”

Amen. Thank you again for calling and clicking and sharing our Call to Action - it really made, and continues to make, a difference! We'll be back soon with a Marathon Day report!

Saturday, February 18, 2012

Keeping Up the Good Work

First, let me say a giant THANK YOU to everyone who responded to our Call to Action by contacting their representatives and spreading the word amongst their friends. As a result of your help, we had visits from folks all over the country - and beyond - and a lot of traffic made its way to the CureSearch and St. Baldrick's sites, which is exactly what we wanted. Once again, our awesome Friends of Georgia shared the love with all kids in the fight, and we can't say thank you enough!

As for the current status of the Methotrexate crisis, it looks like we will avoid an all-out shortage at this point. BUT the childhood cancer community remains focused on ensuring that this - or anything remotely similar - never happens again with these children's life-saving medicines. Bills, letters, and petitions continue to make their way to the powers that be, and hopefully, we will see some real progress sooner than later. All this to say, it ain't over til it's over. For more information on, and responses to, the Methotrexate shortage, click on these links:

In other news, I had the distinct pleasure of attending a Make-A-Wish Wish Granter training session this morning. One day soon, I'll get to play Fairy Godmother and help a child get their one heartfelt wish! I remember how excited Georgia and Ivy both were when the Wish Granters came to interview Georgia about making her wish, and I can't wait to be on the other side of the magic! I also learned today just how many volunteers it takes to keep the wish factory going, so if you're interested in donating your time, talent, or treasure to this incredible organization, go here to find your local chapter office and the many volunteer opportunities available in your area.

For tomorrow, we've got to be up with the chickens to help out with the LIVESTRONG Austin Marathon. In case you're out on the course, we'll be working Water Stop #15 at Mile 17 with our pals from Superhero Kids. Should be a great race, and we're ready to cheer on some courageous runners!

Enjoy the rest of your weekend!

Tuesday, February 14, 2012

Love and War

Happy Valentine's Day! We had such a great day around here - early morning kolaches, handmade Valentine cards and treats, and delicious cupcakes after dinner. Love was in the air even more than it usually is, and that is really saying something! 

But even with all we have to be happy about and grateful for, and as much as we are determined to always "accentuate the positive," we've been reminded quite loudly over the past week or so of the harsh realities of childhood cancer. In a nutshell, there is currently a crisis-level shortage of one of the most important medicines required for every Acute Lymphoblastic Leukemia protocol: Methotrexate (MTX). Throughout her treatment, Georgia has received MTX orally, by IV, and by injection into her spinal fluid in 24 day surgeries - and it is specifically the supply of this injectable form that is so low, some hospitals may run out within the next two weeks. The shortage has been coming on for a while now, but the decision by one of the four US manufacturers to suspend production of MTX for alleged "quality issues" really compounded the problem by creating a demand that the other smaller manufacturers can't keep up with. And while we of course want our drugs to be safe, remedying these quality issues (or finding other supply sources) doesn't seem to be a priority for all parties involved. Also, it's impossible to ignore the fact that MTX is a generic drug, for a supposed "rare" disease, which adds up to low profitability for manufacturers - a consideration that could quite possibly cost children diagnosed with a largely curable cancer their lives.

So, dear Friends of Georgia, we're asking for your help. The childhood cancer community has sounded a Call to Action and made it very easy for all of us to lend our voices. Below are links to pages for CureSearch and St. Baldrick's where - in FIVE MINUTES - you can let your Senators and Congressional Representatives know that Georgia needs preservative-free Methotrexate in order to stay in remission and complete her protocol for ALL. She's got one more day surgery to go - but think of the kids getting diagnosed today who will need at least three day surgeries in the next month. What will happen if the supply runs out? 

PLEASE click on these links, enter your information, and emails will be automatically sent to your reps. I did it and got an auto-reply from John Cornyn's office within minutes. It's so easy and can truly SAVE LIVES!

CureSearch (When you open this page, skip the links up top and scroll down to the bottom to put in your address, etc.. Once you hit "submit," it will automatically match you with your reps.)

St. Baldrick's (Again, your rep information will be matched to your address for you, so there's no need to search for it.)

And as for news on the drug shortage, here are some links to stories and articles, including the latest word that the pressure being put on these manufacturers is maybe making a difference already. But don't let that stop you! PLEASE share this post with anyone and everyone, and Keep Georgia - and all of these kids - On Your Mind!

I know that's a lot of information, and I'll be happy to answer any questions or help in any way. We are truly waging a war against leukemia and all childhood cancers, and we so appreciate your continued support. 

Love wins.

Thursday, February 9, 2012

Cinco de Mayo!

That's the day of Georgia's VICTORY Party - put it on your calendars! Also, Ivy's making her First Communion that morning, so it's going to be an extra special day! We're planning a Saturday afternoon cake-and-ice cream social, and we'd love for all Friends of Georgia to be there - even virtually. We'll have more details soon, so keep an eye out for your official invitation!

Georgia has an appointment tomorrow for IV meds and a quick visit with Dr. Neff. He's almost fully recovered from his back surgery, and we're glad that he's back in the office, telling corny jokes and talking in crazy accents. But no monkey walking - yet. : )

Our girl is feeling great and really looking forward to her end-of-treatment party at the clinic. Such a long journey, but she has persevered, and we are just so proud of her. And grateful beyond measure.

Have a great weekend, y'all!

Thursday, February 2, 2012

The State of Affairs

Saturday is World Cancer Day, and we want to share an email we recently received from St. Baldrick's about the current state of affairs in childhood cancer research:

Hi friends,

It’s a little-known fact that only 4% of federal cancer research funding is directed to childhood cancers. And recent reports from the National Institute of Health show that research grant funding has reached its lowest point in history with the percentage of reviewed applications that receive funding at a meager 18% (read more).

Childhood cancers, already underfunded compared to other cancers, are included in the current cuts, so parents, who are in a race against the clock to save their children, are told that the resources are now scarcer than ever.

Officials at the National Cancer Institute report curing childhood cancers would be comparable to curing breast cancer in terms of patient years of life saved. Yet no reasonable person would argue breast cancer has “enough” resources, and certainly the widespread support for this important cause indicates the public, as well as the government and nonprofit sectors agree.

With the proliferation of retirement funds, college savings plans and insurance options on the market, I don’t believe people are unconcerned about the future – particularly their children’s. Why then should we accept that childhood cancers are less deserving of support, and why do children receive so little?

Is the quality of science employed to treat children inferior? Unquestionably, the answer is no. In fact, many of the greatest breakthroughs in cancer came from pediatrics: Chemotherapy and bone marrow transplantation were first developed for children; the first gene therapies were undertaken in children; and the success of clinical trial and cooperative research in pediatric cancers have historically outpaced the progress in adult cancer groups. Today, success in adult cancers is measured in months, while success in childhood cancers is measured in years. I could go on. The bottom line is, with far fewer resources than their adult counterparts, childhood cancer researchers have achieved much for cancer patients of all ages.

And yet, more children still die of cancers than any other disease. When will be the right time to conquer the #1 disease killer of our children?

Success is achieved by rewarding hard work and progress with expanded opportunities. To help the St. Baldrick’s Foundation remain on the cutting edge of funding research that will make a real difference for kids fighting cancer, 19 of the country’s leading pediatric oncology researchers gathered for the second Research Priorities Summit in January. All cancer patients would be well-served if pediatric researchers were armed with the resources to make more breakthroughs.

Thankfully, you and the St. Baldrick’s Foundation are doing that.

The time to act is now. Share this report. Involve a friend.

Together, let’s CONQUER,

Kathleen Ruddy

Executive Director

St. Baldrick’s Foundation

Pretty powerful stuff. Y'all have always been so supportive of our fundraising efforts, and we hope you'll continue to make childhood cancer research a priority. "Together, let's CONQUER."