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We will again be walking in the Northeast Ohio CureSearch Walk for Children’s Cancer. This year’s event is on Saturday, September 28, capping off what will hopefully be a productive and effective Childhood Cancer Awareness Month (don’t get me started on the pink versus gold ribbon debate). I’ve set up a Team Austin and welcome anyone to join us. I also must mention that, upon my suggestion, the friends and family of Becca Meyer have established Team Becca, currently in first place for both walkers and dollars raised. If you’d like to join or donate on Becca’s behalf, that is totally fine with us. The reasons we walk are all the same anyway. Those reasons, in a repost from last fall, are here:

From a September 2012 article about the Walk, as published in The Heights Observer:

Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”

And that’s just it: Our work is not done.

Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.

No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.

Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.

Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .”  I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.

Please join us for the CureSearch Walk on the 28th, if you can. Stand with us. Walk with us. With Austin. With Becca. So we don’t have to add another name to this list next year. Because our work isn’t done.

 

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I never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway.  Thank you to those who joined us or donated on our behalf.  We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning.  The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up.  “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for.  I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.

The overall event was nice, raising more than $60,000 for research.  My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to.  Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success.  I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns.  And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.

But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection.  Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September.  Keep your pink confined to those 31 days, dammit!

Okay, that was harsh and selfish, and probably isn’t the answer at all.  Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February.  Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board.  Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment.  And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”

So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.

There are too many balloons in this scene:

Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:

Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”

And that’s just it: Our work is not done.

Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.

No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.

Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.

Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .”  I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.

Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.

Ah, fall, my favorite time of year.  It still feels like summer, of course (and still is summer, of course), but I do so love September. Fires in the backyard on cool weekend evenings, high school football games, and Childhood Cancer Awareness Month.

Yeah, it may not get the attention that October does, with pink ribbons exploding out of storefronts and tiny percentages of your lipstick purchase going to breast cancer research, but it is just as necessary and just as deserving of public notice.

I’m not going to drown you in all the stats (at least not today), but I will tell you what my family will be doing this month.

This afternoon, as soon as I pick up the boys from school (and show off my new haircut — pics to follow), we’ll drive out to Avon to give a talk at a golf event, raising funds for Rainbow Babies & Children’s. Tomorrow evening, we’ll tune in to the live televised Stand Up To Cancer fundraiser, an every-other-year favorite for us. I recently received an email that said that a photo I submitted of Austin might (key word, there: might) be used during the show. So tune in to ANY of the major networks on Friday and keep your eyes peeled.

I am also currently trying to get the Cleveland Heights University Heights schools to adopt St. Baldrick’s as their district-wide charity. I have pretty strong feelings about teaching kids the value of actual giving — as opposed to just bribing them with prizes and incentives, like the current Pasta for Pennies fundraiser does. But I’ll save that tirade for another day.

And on Saturday, September 29, our family will be walking — hopefully alongside many of YOU — in Northeast Ohio’s CureSearch Walk. Team Austin is still preeeeeeeeetty small, but I know a few people who could change that.

And if you ever wonder why this is all necessary, take a look at this image, posted recently on St Baldrick’s Facebook page, under the heading Why fight cancer?

So much for biking, it’s time for walking.

The CureSearch Walk for Children’s Cancer, to be exact. Many of you have walked with us for this event before, although it’s been almost a year and a half since we last had that pleasure because they moved the date from May to September to coincide with Childhood Cancer Awareness Month. This year’s Walk will be on Saturday, September 29 from 9 to 1 (it’s not truly that long, but the timing includes pre-registration, the walk itself and the ceremony afterwards).  I know it’s right smack in the middle of fall soccer season for the elementary kids, but I do hope many of you will be able to join us, even if just for part of it. The last one was very powerful, described here, and it means so much to all of us to see Austin and Braedan’s friends walking along beside them (and hey, I’m not asking you to shave your heads or anything!).

All the details can be found here and the homepage for Team Austin is here.  It’s only $10 to register and free for anyone under 16 (needless to say, though, a small donation is deeply appreciated).  Of course, I concentrate my fundraising efforts on St. Baldrick’s (more on that shortly), so I’m not asking for big donations or major fundraising campaigns from any of you, but that sea of red is a beautiful sight. Walk with us, if you will.

 

For those of you who are local, there are a few great ways to support the CureSearch Walk even if you’re unable to actually walk on that day. (Although if you are able to walk, please do! Register here.)

The two events below honor the memory of Olivia Crowley, a Cleveland Heights girl who lost her three-year battle with Ewing’s Sarcoma at the age of ten, shortly before Austin was born. I didn’t know her, but I know some of you did and have heard that she was a vibrant and loving child and a beloved student at Ruffing. Her parents are the co-chairs of the Northeast Ohio Walk and Mark and I have had the pleasure of working with her father on a variety of cancer-related issues.

So, in Olivia’s honor, raise a glass and a fork to help Reach the Day when all children diagnosed with cancer are guaranteed a cure:

May 16-22: “Olivia’s Pasta” special at Marotta’s Restauran— (2289 Lee Road in Cleveland Heights). Marotta’s is offering “Olivia’s Pasta”: fusilli pasta tossed with artichoke hearts and fresh spinach in a lemon cream sauce, served with a field greens salad and crusty Italian bread (available for eat-in or take-out). The cost is $24, with 100% of proceeds donated to the CureSearch Walk. The special may last longer but be sure to get yours while it lasts!
May 28:  “Kegger for the Cure”— The Crowleys’ friend Shawn Paul is hosting a party with BBQ and beer for a $25 donation; all proceeds are going to the Walk. Saturday, May 28 from 6:00 PM to 10:00 PM, 3140 Corydon Road in Cleveland Heights. All are welcome.

Walk with Austin.

The CureSearch Walk for Children’s Cancer on Saturday, June 4 will raise awareness and critical funds needed for research into the prevention and treatment of childhood cancers.

While we all hear a lot about the advances made in cancer treatments, the truth is that for pediatric cancers, progress is painfully slow. Most national dollars go to adult cancers, and drugs and procedures then trickle down to kids. Sometimes this works fine, but it fails to recognize the impact of long term side effects on those who still have fifty or sixty or seventy years of life ahead of them.

I remember countless times when we were making medical decisions for Austin and his oncologist would list the potential side effects, things like heart failure or secondary leukemia, that might occur ten or twenty or thirty years down the road. We would worry and fret, wishing we had options, but his oncologist would always say, “You can’t worry about what happens in twenty years. You have to get to twenty years.” So we did what we had to and, while we are of course thankful for each moment we get today, he nonetheless has a lifetime of major health issues ahead of him.

It doesn’t have to be that way. It shouldn’t be that way. We must insist that doctors and researchers (and funders, both individual and federal) work in a way that guarantees progress. Currently only 5% of the budget of the American Cancer Society goes toward pediatric cancers. The same is true for the National Institutes of Health. Major nationwide fundraising activities, like Relay for Life (often hosted by high schools and colleges), dedicate less than 5% of their dollars to childhood cancers.

We can do better. CureSearch and the Children’s Oncology Group are the key to making a difference. They are conducting the research that may be too late to help Austin but could cure the child who is diagnosed today and another who is diagnosed tomorrow and another the day after that. All you have to do is sign up to walk on Team Austin on Saturday, June 4 at Wade Oval. Follow the steps I outlined here to make your registration as painless as possible. And make sure you join our team!

You may not cure childhood cancer. But you can take a first step.

You know, I don’t usually use this site as an advocacy tool, but I probably should given the enormous inequities in funding for cancer research and especially pediatric cancer research. That is a topic for another day but right now, I’m going to simply copy an email that went out yesterday from CureSearch, the nation’s major fundraising arm of the Children’s Oncology Group, which coordinates, conducts and shares all the research and treatments done on childhood cancers among more than 210 hospitals across the country. (St. Baldrick’s funnels its dollars through CureSearch as well to fund grants for member hospitals.)

There are so many reasons to hope that our nation’s leaders are able to reach an agreement on the budgets for this and next year, but for me, right now, today, cancer research is one reason that cuts across all the boundaries that usually divide us.

Hard to disagree with funding research for the more than 13,500 children who will be diagnosed this year. Or for the more than two-thirds of those who will face devastating late effects from their treatment (like Austin). Or for the more than 2,500 who die each year.

Hard to disagree with that.

And now, the official message:

URGENT Action Alert

Dear CureSearch Advocate:
As many of you are aware, there is a lot of Congressional debate around both FY 11 appropriations and the FY 12 budget this week.
Last week, a letter was sent from One Voice for Against Cancer (OVAC) Member Organizations (OVAC is a coalition of Oncology Patient Advocate Organizations) to House and Senate leaders. The letter urges House and Senate leaders to work together to restore the funding that was cut in the original proposal H.R. 1 for programs involved in the fight against cancer.
As of today, Congress and the Administration are at an impasse on FY 11 spending. If no deal is reached by Friday, government operations will shut down. This would impact cancer research and prevention programs in the following ways:
·         New patient enrollment in clinical trials would be discontinued;
·         No new grants would be awarded;
·         Patient information hotlines, such as 800-4- CANCER, would not be staffed;
·         CDC grants would not be awarded; and,
·         Additional health care family services might not be staffed
The latest rumors about the negotiations suggest that the Democratic and Republican parties are still several billion dollars apart and that there is also disagreement over the policy riders that are in H.R. 1. Based on the current state of play, the NIH would be cut by a smaller amount than what was included in H.R. 1. The funding level for the CDC would be comparable to the level provided in H.R. 1.
We urge CureSearch Advocates to call members of Congress with the following message. Members of Congress should be asked to encourage their leadership to complete their work on FY 11 and to reject cuts to NIH cancer research programs.
The House Budget Committee is marking up its FY 12 Budget Resolution this week. The mark-up is expected to last until midnight. Many amendments are expected to be offered by members on both sides of the aisle. It is expected that at least one amendment will be offered to protect NIH funding. More information on this amendment and the committee mark-up will be provided as it becomes available.
To contact your Congressional Member visit the CureSearch Advocacy Network
Suggested talking points:
While progress has been made in the fight against children’s cancer, there is still much to be done. We recognize the difficult fiscal choices confronting Congress in today’s environment, we nevertheless urge Congress to provide NCI and its children’s cancer research programs with the support necessary to maintain and expand the gains made in recent years. Please continue your support for NIH and the critical role it plays in developing and maintaining treatment options to cure children’s cancer.
The pediatric cancer research enterprise has made great strides in the last 40 years by increasing the overall 5-year childhood survival rates to 78 percent, but our work will not be complete until we reach 100 percent. In fact, the mortality rate for some solid tumors and rare cancers has changed very little in the last decade. Cancer remains the leading cause of death by disease for our nation’s children, claiming the lives of approximately 2,500 children each year. When measured in life years lost, this devastation is even more dramatic. Further, the treatments used to save children’s cancer patients are highly toxic and can have serious long-term health consequences. Approximately two thirds of all childhood cancer survivors will experience a late-effect from their treatment, some of which are severe or life threatening. In short, we need more effective, safer therapies for our children to give them longer, healthier lives. Reduced funding will halt progress and squander advances.
Children’s Cancer Facts
·         Each year, 13,500 children are diagnosed with cancer.
·         Children’s cancer affects all ethnic, gender and socio-economic groups.
·         The average age of children diagnosed is six.
·         More than 40,000 children undergo treatment for cancer each year.

Mailing Address:
CureSearch for Children’s Cancer
4600 East West Highway
Suite 600
Bethesda, MD 20814
US

Contact Name: Cynthia Duncan
Telephone Number: (240) 235-2212

I have some answers to the what-can-I-do-to-help question and this time not one of them involves going bald!

First, and this one is relatively easy no matter where you live, give blood. Austin has been using up his fair share from the blood bank lately so it seems like we ought to refill the coffers in his honor. And if you’re so inclined and have the time, give platelets too. Donating platelets takes a little longer and can’t be done as frequently as giving blood, but is important nonetheless.  Maybe some of you who do this on a regular basis (Chris) can chime in with some advice in the comments section since I’ve never done it myself. I mentioned to my mom the other day that I’d been meaning to and she said, “No! You need to save your strength! Let other people do that.” I don’t really think it’s all that debilitating, but I’ll let the rest of you take that burden away from frail little me. Of course, your platelets wouldn’t necessarily go to Austin (although they might since he gets them so often!) but they would certainly go to some other deserving patient in need.

The next thing is fun and something I hope many of you will participate in. CureSearch, which I’ve written about on the Sites of Interest page, is hosting walks all across the country this spring, summer and fall to celebrate and honor children whose lives have been touched by cancer.  Cleveland’s event is Saturday, May 8 at Wade Oval and includes a short walk (I think it’s just around the pond or something — they never mention a distance on the site so it can’t be long), plus games, music and food. It’s perfect for the whole family and a  great way to celebrate Austin while also raising money for important research (CureSearch is where St. Baldrick’s dollars go as well). The event costs $10 for adults and is free for children under age 16. I just registered Team Austin and am hoping to have 100 people join his team (we’re up to four right now: me, Mark, Braedan and the little man himself) so please plan to come out and walk with us.

The registration page can be found here but beware that the photo on the page is not of Austin. I can only upload one that’s smaller than 50KB and I don’t have a file so small!  Silly, but you already know how cute he is:

Oh, and one more: wish us well for tomorrow’s GFR. Let’s hope this little kidney is still kickin’.

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