Thursday, May 31, 2007

Other Events in Baker Park on July 22

There are a couple of interesting things going on at Baker Park, in addition to our Walk, on July 22. The following is from the Frederick County calendar of events.

** Weekly Carillon Recital
Recitals on the Joseph dill Baker Carillon in Baker Park, an instrument of 49 bells in a 70 foot tower of Baltimore Granite. 12-12:30 pm. Guest carillonneurs from all over the world play 6-6:45 pm.

** Summer Concert Series
Outdoor concerts feature local, regional, national and international performers. Baker Park bandshell 7-9 pm. www.CelebrateFrederick.com

I love the bells!
~ Elizabeth
www.becgoteam.com!

Wednesday, May 30, 2007

Tuesday, May 29, 2007

Register Now and Receive a T-Shirt and Bracelet!

Hi! I wanted to make sure that everyone who wants to join us for the Walk Around the Park in Frederick on 7/22 has the opportunity to get the T-shirt and bracelet! If you can't come, but want a T-shirt anyway, we can do that! We have to provide quantities and sizes in the next couple of weeks. Please let me know your T-shirt size now and we'll deal with the registration form (below) when you arrive or you can mail it in. Please pass this along to others who would be interested. I'll be posting a picture of the T-shirt in the next few days. Thanks ~ Elizabeth

e-mail me with your T-shirt size egr2058@yahoo.com
www.becgoteam.com!
http://egr2058.blogspot.com





Sunday, May 27, 2007

Flyer for BNA - 2 kids lost in 2 years

After Bradley died, we found out that the son of a co-worker at BNA (the company that kindly accepted my application for a sabbatical) also had Ewings Sarcoma. Maramtaye Seck had achieved remission, but was dealing with relapse when we found out. It's VERY odd that one company should have two families afflicted with this beast, given that there are only about 200 new cases in the US each year. It would have been just wrong for the flyers I posted at BNA to be all about our boy only. Many thanks to his mother, Robin, to provide this picture and information for this flyer, which I put up on bulletin boards at work.
~ Elizabeth


Saturday, May 26, 2007

Black Wednesday at the FDA

Just makes ya want to spit. ~ Elizabeth

From the Wall Street Journal Online.
BLACK WEDNESDAY AT THE FDA.
By MarkThornton, M.D., Ph.D.Dr.

Mark Thornton is the founder of SarcomaFoundation of America (SFA)http://www.curesarcoma.org

The article:
http://www.investorvillage.com/smbd.asp?mb=971&pt=msg&mn=112292

First paragraph
"May 9, 2007, should be cited in the annals of cancer immunotherapy as Black Wednesday. Within an eight-hour period that day, the FDA succeeded in killing not one but two safe, promising therapies designed and developed to act by stimulating a patient's immune system against cancer. The FDA's hubris will affect the lives and possibly the life spans of cancer patients from nearly every demographic, from elderly men with prostate cancer to young children with the rarest of bone cancers."

For more information on the drugs in question:
http://www.drugs.com/nda/junovan_070509.html
AND
http://www.drugs.com/nda/provenge_070509.html

Silent Auction

The best places to go to find support for your Team Sarcoma are the local businesses that you and your family patronize regularly. I approached our first business, a French restaurant that we go to for special occasions 2-3 times a year, with great nervousness and trepidation. Would they see me as an opportunist, seeking to capitalize on our association? No! I was greeted warmly, treated with great kindness and came out of it with a $70 gift certificate!

My team-mates Elena and Chrystie had a meeting, brainstorming, what could we do with this item to raise money? We came up with the idea of a silent auction. In a silent auction, you set up tables with the items available laid out, each with a piece of paper for people to put down their names and the amount they bid on that item. At the end of the day, the person with the highest bid wins. Ooo, ooo, now I get to design another form - the Silent Auction bid form! The team is off and running, collecting more gift certificates, free passes to wineries, items that can be compiled into gift baskets, who knows what else will be added by the time we're done! I'll update this blog entry with the items as they come it. Our first:

Cafe de Paris, Columbia, MD $70 Gift Certificate!

Thanks for reading my blog!
Elizabeth
www.becgoteam.com!

Friday, May 25, 2007

Team Sarcoma 2007/Bradley - California

Team Sarcoma/Bradley now has two geographic sites! B's sister Brandi has created Team Sarcoma 2007/Bradley - California which will have a 5K Walk Around the Lake in Mission Viejo, CA. A true "sister team" ..... Welcome, Brandi and team!

http://www.bradleycalifornia.blogspot.com/

~ Elizabeth
www.becgoteam.com!

Wednesday, May 23, 2007

Tuesday, May 22, 2007

The Sarcoma Knows No Borders Bracelet


One of the things that registered participants in the 5K Walk Around the Park will receive is a Sarcoma Knows No Borders bracelet.

"The background color is a swirl of a pathology slide of a sarcoma patient. The bracelet is reversible. "Sarcoma Knows No Borders" is printed on one side and on the other side the word "sarcoma" is printed in 13 of the world's languages. We use the phrase "Sarcoma Knows No Borders" because sarcomas can occur anywhere in the body and they don't discriminate on age, gender, race or creed and they occur in countries all over the world. Each bracelet is individually packaged and comes with a brief 'Sarcoma Facts' sheet"

If you are interested in obtaining some of these bracelets, please send a note to info@liddyshriversarcomainitiative.org.



Sunday, May 20, 2007

Sign up Sponsors with our New Sponsor Form!

Double-click the image to enlarge and print!
~ Elizabeth
www.becgoteam.com!



REGISTER FOR THE 5K WALK AROUND THE PARK!


TEAM SARCOMA/BRADLEY 2007

5K WALK AROUND THE PARK

The friends and family of Bradley Rice and the Liddy Shriver Sarcoma Initiative are joining forces to help increase public awareness of sarcoma and raise funds for sarcoma research. Please join us in Baker Park on July 22 for a scenic 5K Walk around the Park and help us fund a sarcoma-related research grant in Bradley’s name.

Pre-registered walkers will receive a Team Sarcoma 2007 T-Shirt and a “Sarcoma Knows No Borders” wristband. Please register no later than June 8 to allow time for shipping! All walkers are encouraged to obtain one of our Pledge Collection forms to sign up sponsors. If you are unable to walk, your sponsorships and donations will be gratefully accepted!

We will have snacks and sodas in the gazebo throughout the day. At the end of the day, there will be a drawing for generously donated, fabulous door prizes!

Also, as we end the day of walking, we will write on balloons the names of our loved ones who have lost their battles against cancer and release them in their honor and memory.

WHERE: The gazebo in Baker Park

WHAT TO BRING: Water bottle, sunscreen and a hat. Umbrellas if it’s raining.

DATE: Saturday, 7/22/07

TIME: 8:30 - 2:00 Join us anytime!

We do this walk in memory of Bradley Rice, who died too young.

Visit http://www.becgoteam.com/ or call Elizabeth at 410-715-9746 for registration details.

A Too-Big Newspaper Ad

I haven't gotten the publisher's requirements for ads in the paper yet, but here's my first design. We'll see how much it changes before it's run.


4-page folded flyer


These two documents can be printed back-to-back/landscape and folded to create a 4-page flyer. The picture on page 2 was taken while B was in treatment. Pages 1 and 4 are below. Pages 2 and 3 are above. Don't ask.























Friday, May 18, 2007

Proper 5K versus the Mosey

OK, so people have been asking me how long the walk is going to be and exactly where it would go ... and I've been saying well, um, I haven't gotten around to that yet ... no, no specific distance, people can walk as far as they want to .... and that turned out not to be a good answer, though moseying around parks always sounds lovely to me. The problem was that, back in March when I first started thinking about this, I couldn't find any good maps of the park, much less marked routes.

Clearly, the time had come to tromp around the park with a cheapie pedometer and attempt to select a route and estimate distance. Before starting, I stopped in at the Dept of Parks and Recreation at Baker Park to ask about acceptable means to mark a route - ribbons? signs? No need! The smiling, helpful attendants presented me with brand new, fresh-off-the-presses, pre-marked maps, one of which was a measured 5K route! I tossed the cheapie pedometer aside, scanned the map, added notations of helpful landmarks, and here it is. We are now doing a proper 5K instead of a mosey. Double-click the image to enlarge.
~ Elizabeth
www.becgoteam.com!




Wednesday, May 16, 2007

Craft Night at RMH

After the Wish List Drive for the Baltimore Ronald McDonald House is over, I'm moving on to Craft Nights. All those trips to the craft stores to get the doodads for the donation boxes opened my eyes to a whole world of kids crafts. Here are some of the things that look like they'd be fun - maybe the kids will like them too :-)
~ Elizabeth








Walk Around the Park Pre-Registration Form!

OK, so we have a bunch of people coming to the Walk Around the Park. That's what I hear, and it's good to hear! The Shriver's are generously shipping to us "sarcoma knows no borders" wristbands and Team Sarcoma T-Shirts. They need to know how many. And what sizes. Thus is born the pre-registration form, to capture these details so that as many people as possible can take advantage of this opportunity. As usual, double-click the image so you can actually read it.
~ Elizabeth
www.becgoteam.com!



New Sponsor Form - Give by Credit Card!

Zowie, we now have a sponsor form that includes the option to give by credit card! There is a 3% fee to use the service, so for every $100 donated, LSSI gets $97, but that meets the goal of holding administrative expenses to 3% or less. Here's the new Sponsor Form. Double-click the image to enlarge the image. Now I have to update the sponsor form on the Team Sarcoma 2007/Bradley website, which, in case anyone has forgotten is www.becgoteam.com!















Tuesday, May 15, 2007

Marinol

Marinol, as some of you may know, is a cannabinoid pharmaceutical product (Solvay Pharmaceuticals) that uses a synthetic version of THC - the stuff found naturally in marijuana - to control nausea and increase appetite. When Bradley was ill, we asked more than one doctor about Marinol as he was having difficulty with side effects of traditional nausea reducers. They hemmed and hawed, looked the other way, and did not offer an RX for Marinol. So we were left with either continuing to experiment with the usual stuff or going afoul of the law to procure a "cannabinoid" product on our own. That was a couple of years ago.

Lo and Behold, at Ms M's last oncology visit, I picked up a box of tissues in the infusion center on which was an ad for Marinol in bold orange, "A unique pathway to multiple benefits"! How's that for spin! And out there for all to see and request. There is progress in this world after all.....

Monday, May 14, 2007

Blue Days

It's a sad day in the world of my on-line Ewings Sarcoma support group. In the last month, we've lost 4 young adults to the beast. Others are in end stage, or opting to end treatment because it can only make them sick but not cure them. Of those that are in remission, several struggle with the kind of heart problems that are usually associated with old people (caused by chemo), long-term radiation damage and/or face on-going orthopedic surgeries to replace prosthetics. Blech. The disease sucks, the treatments suck, the after-effects of the treatments suck. Please pray to the god of your choice for a breakthrough, to hear "Eureka" come from the labs, for hope.
~ Elizabeth
Fight for the Cure
www.becgoteam.com

Wednesday, May 9, 2007

There's ALWAYS room for lasagne

On my last visit to the Ronald McDonald House, I asked Joshua Harden (the volunteer coordinator) if they needed more lasagne, and he replied with a big grin, "There's ALWAYS room for lasagne!"

So, here's what a bunch of single-serve lasagnes look like by the time I'm done with them. The fully baked lasagne is divided into freezer safe, snap & seal containers. The ingredient labels are printed on 3 1/3" x 4" white mailing labels (Avery template 5164) and slapped on the top of each container. This way people with dietary restrictions can figure out whether they can eat it or not. I stay away from things that kids traditionally object to, like big chunks of mushrooms, onion or peppers. There are chunks of tomato in the Bertolli, sorry kids. The goal is to provide quick energy on the fly, coverage for missed meals and comfort food for late nights.

=======================================
What’s in the lasagna?

Organic Bertolli Spaghetti Sauce with extra seasonings:
Minced onion, minced garlic, oregano,
parsley, salt, pepper
Noodles
Mozzarella cheese
Ground beef
Cottage cheese
Parmesan cheese

ENJOY!
=======================================

This is the specialized container that I use for transporting the frozen lasagne to Baltimore. It's lightweight, insulated and, best of all, ensures everyone sees me coming in the door.



Until next time, Lasagne Lady Elizabeth
Visit my website



"A Forgotten Cancer" Video Presentation and Translations

The video presentation “A Forgotten Cancer”, which is part of the editorial “An International Sarcoma Awareness Week” in the April 2007 issue of ESUN, has been translated into Chinese, French, Italian, Japanese, Polish, and Spanish. Toward the end of each of these translations, a link is given to sarcoma centers and sarcoma advocacy resources in China , France , Italy , Japan , Poland , and Spain respectively. These translations were made and the resources identified with the help of sarcoma oncologists, patients, and survivors in each country.

The original English version is at: http://tinyurl.com/35l7mz Resources in English: http://tinyurl.com/2gnaq3 and http://tinyurl.com/z63uq

You can use the following links to access the translations:

Chinese: http://tinyurl.com/2txmf8
Resources in China : http://tinyurl.com/2tsjge

French: http://tinyurl.com/ysejjr
Resources in France : http://tinyurl.com/3xl7dw

Italian: http://tinyurl.com/2ls7mc
Resources in Italy : http://tinyurl.com/3bqv7e

Polish: http://tinyurl.com/3af9ng
Resources in Poland : http://tinyurl.com/2vh4nv

Japanese: http://tinyurl.com/296rfh
Resources in Japan : http://tinyurl.com/yr46sa

Spanish: http://tinyurl.com/25auzr
Resources in Spain : http://tinyurl.com/37kbzy

The Editorial, “An International Sarcoma Awareness Week” is located at http://tinyurl.com/2eokjt.

Wednesday, May 2, 2007

Ms M

Wow, it's been so long and I've yet to post an update on Ms M. Ms M is the client I drive to chemo every week as part of the American Cancer Society Road to Recovery Program. Ms M is a lovely elderly lady who has a cancer that is only kept in check by chemo but cannot be cured. She manages to keep her spirits up most days and always has a friendly word for those she meets at the chemo center and pharmacy. Now, because of her advanced age and weakened condition, some family memers have moved in with her to help out. While she appreciates their help, recently she's been grumbling a bit about how it would be nice to have her place to herself again. To sum up without getting into detail, she just wants to be able to do what she wants, when she wants to do it. It made me a little sad, for in essence, she was saying the exact same thing as Bradley during his treatment. Young adult and elderly patients often have this in common - they want privacy and independence. Fiercely. They want to tell all the middle-aged people who are suddenly all in their business to please just do what they have to do, as far as helping, and then GO AWAY! It's sure not unreasonable. Unfortunately, when therapy isn't going as well as you'd hope, someone needs to be there to pick up the phone when fevers spike, or when a hundred other things go wrong. The state of cancer treatment programs is getting better, but we're sure not where we need to be. Thanks for reading my blog!
Elizabeth
www.becgoteam.com

RMH Wish List Donation Drive Box: Decorating 101




There are two posters in a set. The white sign is mounted to the back of the donation box so that people see it at eye level. Foam board is used for the white sign, as it needs to stand up straight. It includes a large printout of the wish list and an envelope containing a smaller version printed on index-cards. The blue sign is attached to the front of the box. It includes an RMH information sheet and a large printout of the wish list.

Shopping List / things to look for around the house
White foam board
Blue poster board
Wide blue Duck Tape
Blue Scotch painters tape
Laser inkjet white index cards, for the take-along wish lists – Avery template 5388
Inkjet & laser compatible matte white 8.5 x 11 sticker paper, for photo and logo images
Clean white 8.5 x 11 paper, for printed material attached to the posters
Kitchen, school and baby-themed stickers of items on the wish list
Self-stick glitter paper for the star on the blue poster, unless you can find one in the sticker aisles of your craft stores.
Blue “Ronald McDonald House” – Colorbok Blueberry Casual alphabet stickers. There’s no size on the package, but they measure 1 ¼”. 2 packs are required for one box.
Sparkly blue “Wish List Drive” – RoyalBrites Project Works Letters 1.5 x 1.5”. 2 packs are required for one box.
White “Our House is Full” – PermaSign Helvetica Caps Self-Adhesive vinyl letters 1”, found in the sign-making department, not the craft department
Red “We Need Your Help!” – PermaSign Helvetica Caps 2” vinyl letters
Big Box – I used a U-Haul shorty wardrobe box
Blue envelope to hold index cards for take-along wish lists – this one was found in a desk drawer in a stationary set my mother bought me 20 years ago.
The “aluminum foil” and “tall kitchen bags” labels on the wish list are cut from packages from our kitchen and applied with clear tape.

Technically speaking, if you do this the same way I did, you will need the following:
Color printer.
Photo image editor to resize the images from the RMH website. You may also be able to get assistance in re-sizing photos at your local printing shops.
Word processor to create large and small wish lists and information sheet.

Computer-based tasks:
Enlarge the photos and logos from the website or have them enlarged and saved to *.jpg files.
Print the photos onto the sticker paper.
Print a small-print version of the wish list onto the index cards.
Print two copies of the full-size wish list. Change the default bullet color to red to make it more visible. Add a red border.
Print one copy of the RMH Information page. Use the same border that was used for the wish list.

Crafty tasks:
Cut out the photos and logos in shapes that suit the design. Use sharp scissors to avoid wrinkles.
Cut out the star from the glitter paper if you couldn’t find one on the shelves.
On the white foam board, put a piece of the wide blue duct tape about 8” from the bottom of the sign to denote the point at which the sign meets the box.
Use the wide blue duct tape to create a border around the white foam board, to both protect the edges and provide a frame for the poster. I positioned it with ½” on the front of the foam board and wrapped it around to the back.
Tape the 8.5 x 11 printouts on first, using the skinny blue tape.
Stick on letters using a straight edge as a guide. No pencil line is needed; if it looks like a child did it, so much the better.
Stick on the rest of the stickers.
Tape the blue envelope where it will be seen, folding back the top of the envelope so it’s not in the way. Put the take-along index cards in the envelope.

VOILA!
With any luck, you will have done in a few hours what it took me two weeks and five trips to the craft stores to figure out!!