A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Let There Be Grace

Grace: A Child's Intimate Journey Through Cancer and Recovery

Do you ever have days where your emotions are mixed with joy, sadness, and every kind of emotion in between?  I can’t help the tears in my eyes right now, or the way they billow and bulge until they plop onto the desk in front of me.  I heard yesterday what I have been hoping is not.  I heard my friend Soozie is near the end of her life.

Soozie is not a child.

Soozie is young—way too young to leave this world, to bring her brilliant spirit with her.  Although I have only known her a year and we have never met face to face, I know Soozie will be a part of who I am for the rest of my life—whether she is here, or with our Father in Heaven. 

I first met Soozie when she sent me a very polite FaceBook message saying that her loving brother, Si, had bought her my book.  I believe Si was the very first person in his country to buy it! Soozie, or Susan at the time, told me about how her brother is her caretaker as she is fighting cancer. Ever since, I have delighted in her messages.  Every time I don’t hear from Soozie for awhile, I know she must be fighting.

After a long pause in her messages this past spring, Soozie sent me news I will treasure and truly cherish for the rest of my life. Do you know what Soozie did? Soozie loves horses, and she named her horse’s newborn miracle Grace!

This is Grace! Thank you Soozie.

Usually, I write about childhood cancer. Today is different.

Today I give thanks for life and for a friendship I will always have inside me– in this life and the next.

I love you Si.

I love you Soozie.

Thank you for helping me learn about Grace.

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Circle The Wagons: Do We Truly Care For Our Young?

Grace: A Child's Intimate Journey Through Cancer And Recovery

There is a part of me that aches all over, knowing this is the final day of Childhood Cancer Awareness Month. I don’t want it to end.  Each year, as September arrives, I feel encouragement and hope that this, this will be the year that awareness of childhood cancer will take a giant leap. Half-way through this month, I was still looking for Gold Ribbons. The only Gold Ribbons I have seen are the Gold Ribbons on the profile photos of my Facebook friends—childhood cancer families. I have seen quite a few pink ribbons this month making an early appearance… kind of like the stores display merchandise before the holiday is anywhere in sight.

Forty-six children are diagnosed with cancer each day in this country.  Less than 3% of funding goes to fight childhood cancer. Seven children die each day in our country. There is no known cause. There is no known prevention.

How do we live amidst this death and destruction of children without rising up? I have learned the most about childhood cancer not from books, or from doctors, nor even from my own experience. I have learned the most from listening to families of children who have fought. They have a way of seeing straight through rubble to what is truth.  The truth is, we need to act swiftly and strongly to give to research.

May I offer the insight of Mr. Tom Nunn:

“Pink is popular for many reasons and justifiably so. It deserves research and funding for a cure but so does Gold for Childhood cancer. “If a coast guard helicopter was called out into the ocean to rescue ten people on a sinking boat, one of whom was a child, you know that he or she would without a doubt be the first one in the basket up to the helicopter. So why then does that same human response not apply here with Childhood cancer? Let me tell you why, it is because not enough $$ can be made by big pharmacy to invest into the medicine. OUR CHILDREN DESERVE MORE DAMMIT! We are letting them sink on a boat bobbing in the ocean of Childhood cancer.”
                                                        ~Tom Nunn, Max’s father

Not enough $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ can be made developing new treatments for children with cancer. Not enough money can be made off sick children to justify developing new, less toxic treatments.

I am sorry, but I find this sick!

I pray for an Awakening. 

Surely we cannot wait one more day to do something— anything— everything– to help stop childhood cancer.

Today’s suggestion of how you might help save a life…

Please give blood.

I had the opportunity to speak today at United Blood Services. I read the part of my book where I describe my first transfusion. I looked up after reading my five minute excerpt to glimpse at my mom in the back of the room.

She was wiping her tears.

Someone saved my life… and you can save someone else’s.

http://www.youtube.com/watch?v=87Y0lzZ9WY8

When our Awakening comes, we won’t need to concern ourselves with Gold Ribbons or what they stand for. We will ,naturally, without a thought to the cost, Circle-The-Wagons Around Our Young-In-Need.

This is the World I dream of Awakening to and the World I am working for.

Jamie Rendall lived to be 5

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Mission Possible

Grace: A Child's Intimate Journey Through Cancer And Recovery

Your mission, should you choose to accept it, is to click to help make this happen…

The Isaiah Alonso Foundation has been nominated to win a free brand makeover, ad campaign and website, provided by advertising agency Chimpanzee.  https://www.facebook.com/chimpmybrand

Voting runs until midnight EST on September 30th. Every single vote really matters!

 

https://www.facebook.com/questions/10150294239110172/

Please vote. It will only take a minute of your time.

There are many others who are dedicating their lives; I know we can take the time for a little clicky-poo to help The Isaiah Alsonso Foundation. Did you know that one of the 46 Mommas is Cheryl Alonso, Isaiah’s mommy?

                                                                                                                                                                                          Mrs. Jodie Nunn is someone I look up to and admire.  She has taught me  things about life… and I have never even met her. Jodie and her family      make me look for how I can do more to help stop childhood cancer. If  more of us become just a bit more like the Nunn’s, the Mission to stop  childhood cancer is certainly possible.

 Ms Cheryl, Ms Jodie, and all of the 46 Mommas make me know we can all  do more. We can all give more. 

 Yes… until there is not a speck of hair on our heads… if that is what is  takes.

 From Mr. Tom Nunn to his beautiful wife (and 46 Momma) Jodie:

 “I look up to Max‘s Momma more today than I thought was possible. I  am so sorry Jodie that you had to do today what you wanted to do that  I wish no Momma will ever have to do again some day. You made Lilly  and I so very proud and added even more meaning to Max’s life and  legacy than I ever imagined possible. I still hurt the same as you do too  but we have taken one more step forward to ending the monster                           little c.                  I Love You Jodie.”

 

46 Momma Jodie Nunn

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Don’t Stop Believing

Here I was, sitting and thinking about the team. My friend posted Emmett’s hope flag hanging in Union Station in D.C. Instant tears, knowing that he and everything he has endured is honored and respected and he is spoken for! I love you, my Little Lion Man!

           ~Angela Williams

46 Mommas Banner in Union Station

I thought of the 46 Mommas all day today—especially when it reached 2:00 p. m. PST. I knew that a few of the Mommas would be sitting in the chairs, ready for TheBigShave. Have you imagined what they would feel like? I’m not talking about the new-found breeze on their heads, but what it must feel like inside. Each one of the Mommas has a huge reason why they are there. Somehow I know each of them would give more than their head of hair if it meant that pediatric cancer research would be fully funded. They all know that when that day comes—full funding for research—we will begin to make huge strides toward cures.

This is why they Shave For The Brave.

If you haven’t yet, please considering adopting a Momma.

Here is a video introducing each of The Amazing 46 Mommas…

http://www.youtube.com/watch?v=TxJTi93URwc

Thanks for the Inspiration Anna!

“At 5:00 EST, 46 of the most beautiful women in the world will become bald. Their children had no option of losing their hair. These ladies are in D.C. at Union Station. Some have lost their children to cancer, some have children still in battle & some have survivors (but the worry never stops). Each shaved head brings awareness and money towards research and a cure for childhood cancer.”

                                                                 ~Jeri Where’saCure Geary

Thank you Angela, Anna, and Jeri. May the money raised today for St. Baldrick’s lead to what we are all working for, hoping for…

Don’t stop believing.                                        

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Leaders Who Lead

Grace: A Child's Intimate Journey Through Cancer and Recovery

In a world where we are lacking respect and trust for our elected officials, I have a huge breath of the freshest air you could ever imagine.

Ready?

Deep breath in…

The Andrew McDonough B+ Foundation: Delaware State Representative Greg Lavelle is, again, donating his pay raise to charity. For the second year in a row, he has selected The B+ Foundation as one of the beneficiaries of his salary hike!

 Delaware State Representative Greg Lavelle – GregLavelle.com

www.greglavelle.com

Okay, now let that breath out in one great big whoooooooooooooop! Representative Greg LaVelle is a total stranger to me; at the same time, if I ever met him in passing, I would feel obligated to squeeze the ever-loving stuffing out of him (maybe I could donate that to The Blanket Fairy!)

You know me by now– always looking for those undiscovered, creative ways to help children with cancer! Speaking of creative ways of raising money for pediatric cancer research, Rally Foundation is quite clever…

Rally Foundation

I am happy to be teaming to help Rally Foundation raise money for pediatric cancer research during the month of September!

https://www.facebook.com/photo.php?fbid=10150375068436042&set=at.366729161041.189443.58432741041.100000747848829&type=1&theater

Rally Foundation and Grace $ for Pediatric Cancer Research

Blackstone Wine– Corks Against Cancer

“Blackstone Wine is donating $1 to Rally Foundation for Childhood Cancer Research for every bottle sold in Sept/October for their Corks Against Cancer campaign! This opportunity is nationwide, go buy a bottle (or case) today, tell your friends, and share the page! Cheers!”

Rally Foundation– 46 Faces of Cancer

http://www.youtube.com/watch?v=D4YPtRk1myI

Continuing on the 46 faces theme… tomorrow, there will be live video of the 46 Mommas doing what they gathered in Washington D. C. to do.

http://www.ustream.tv/channel/bald-moms-rock-46-mommas

http://46mommas.com/index.php/in-the-news/press/item/press-release-sept-13-2011.html

Sleep well tonight Mommas. May you dream of a time to come very soon where each of our elected officials, and each of our citizens, place the needs of the children above their own. Thanks for leading us.

May God’s blessings rain down mightily upon you.

 

 

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Right Next to Your Undies

Grace: A Child's Intimate Journey Through Cancer and Recovery

“ 46 Mommas Shave for the Brave do not fear the clippers as they have already experienced the worst that can happen in a parent’s life. Bald is nothing to a momma but a new hairdo and the means to start a conversation and bring awareness.”

~Alyson Rich Weissman

As 46 Mommas pack their bags to fly to Washington D.C., I am thinking of each one of them. Today, I am adding each of the 46 Mommas to the nomination list for The Big Heart Red Carpet Awards for Childhood Cancer Awareness Month. Just in case I have not mentioned it, each of the nominees is a winner! This is not a competition. This is gratitude-filled recognition for each and every nominee!

Amber Burns Chillicothe, MO, 64601, US
Amy Brennfoerder Plano, TX, 75025, US
Amy Cagle Guntersville, AL, 35976, US
Amy Carter Arlington, TN, 38002, US
Amy Raub Grand Prairie, TX, 75052, US
Angela Atherton Carlsbad, CA, 92009, US
Annemarie Kulikowski Rockland, MA, 02370, US
Bonnie Mulieri Holbrook, NY, 11741, US
Brandy Pace Jonesboro , AR, 72401, US
Brittany Snead-Butcher Coal Grove, OH, 45638, US
Cheryl Alonso Radcliff, KY, 40160, US
Danielle Leach Arlington, VA, 22204, US
Dawn Talley Little Rock, AR, 72205, US
Deb Fuller Woodstock, IL, 60098, US
Debbie DePew New Pensington, PA, 15068, US
Debra Nickell Milford, OH, 45150, US
Diana Foley PLANTATION, FL, 33324, US
Diana Lipski Madison, AL, 35756, US
Donna Cassidy Hartsville, SC, 29550, US
Ginette Lamberti-Lacchini Staten Island, NY, 10301, US
Holly Carr Wendell, NC, 27591, US
Janet Pollok Bastrop, TX, 78602, US
Jennifer Cartwright Wichita Falls, TX, 76308, US
Jennifer Malcolm Gibsonton, FL, 33534, US
Jessica Diaz Rialto, CA, 92376, US
Jessica Jensen Spokane Valley, WA, 99216, US
Jodie Louthain Greenwood, IN, 46142, US
Jodie Nunn Morley, MI, 49336, US
Karen Singletary Cairo, GA, 39828, US
Kathleen Henry Fayetteville, NC, 28314, US
Kelli Tracy Marietta, GA, 30066, US
Kim Blue Wilkinson, IN, 46186, US
Laurie LeSage Angola, IN, 46703, US
Maggie Travers Cordova, TN, 38016, US
Melissa Whipple Canastota, NY, 13032, US
Mindi Finch Spokane, WA, 99223, US
Monica Fochtman (Marelis) Okemos, MI, 48864, US
Nakia Arrington Raleigh, NC, 27610, US
Patti Phillips Luthersville, GA, 30251, US
Rebecca Thacker Fort Bragg, NC, 28307, US
Rhonda Ebrom Corpus Christi , TX, 78412, US
Samantha Senkbeil Nampa, ID, 83686, US
Sarah Smith Columbus, GA, 31904, US
Shannon Hayes Spring, TX, 77373, US
Susan Heard Easton, PA, 18042, US
Suzanne Wozniak Chester springs, PA, 19425, US
Theresa Duffin Doylestown, PA, 18902, US
Tiffany Taylor Cincinnati, OH, 45236, US

Can I tell you something, Mommas? I know you will be returning home with a little less (like your head of hair,) but I will let you in on a secret. There is something in your suitcases you did not pack yourselves. With each of you, I send my deep respect, genuine appreciation, and my very best wishes for an incredibly fun fundraising time together. I stuck it all in your bags, right next to your undies, when you weren’t looking!

I love you!

Please let me know if you would like an experienced shaver to help!

About Ready to Sport my Dome

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Gold Ribbons

Grace: A Child's Intimate Journey Through Cancer and Recovery

September is Childhood Cancer Awareness Month.  It has been officially declared by President Obama over a year ago.

http://www.whitehouse.gov/the-press-office/2010/09/10/presidential-proclamation-childhood-cancer-awareness-month

I have yet to see a single Gold Ribbon in a public place this entire month.

We are tragically unaware.

I am not suggesting Gold Ribbons will cure childhood cancer; I am wondering why there are no Gold Ribbons.

What crawls up the back of my spine is that I know that lack of public knowledge about childhood cancer is costing lives.

Costing children’s lives….

To me this means war.

And so, from my own little corner of this World, I write, speak, raise money, and journey in HopeMobiles.  I know that my contribution to the war is a little drop in the bucket.  I also know that I am not alone. I love knowing others who have joined to help the kids in many different ways.  I want to thank you, everyone, for all you are doing. I need to give you one great big group hug right now!

Can you breathe???????

So, little itty bitty Melinda will keep doing my MelindaThing and please, everyone else keep doing your Thing too!

Maybe next year, we will see Gold Ribbons.

Gold Ribbons are great; the real victory will be a cure.

Children's Mercy Hospital

 The more we join together, the faster we will get there…

Directory of childhood cancer organizations

http://curechildhoodcancer.ning.com//page/childhood-cancer-directory

Alex’s Lemonade Database Project

http://www.mychildhoodcancer.org/?LQID=1&origin=facebook

46 Mommas Shave for the Brave at Union Station

http://www.stbaldricks.org/events/46mommas2011

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Please Sir, May I Have Some More?

Grace: A Child's Intimate Journey Through Cancer and Recovery

“It gives me great pleasure to announce the formation of The Children’s Oncology Group Foundation. The COG Foundation will be able to directly receive philanthropic funds from both individual supporters and organizations.  One key advantage of the Foundation is that it enables COG’s leadership, comprised of a multidisciplinary team of doctors, nurses, laboratory scientists and other allied professionals, to direct funds raised for childhood cancer research to the areas of highest need and opportunity. In an era of rapid scientific discovery, this direct link will allow COG to rapidly respond and support research and new discoveries that have the greatest potential to benefit children with cancer.”

                               ~Peter C. Adamson, M.D.

                                 Chair, Children’s Oncology Group

Source:

http://www.keepandshare.com/doc/3140841/a-letter-from-the-chair-of-the-cog-1-pdf-september-14-2011-11-11-am-463k?da=y

This is great news. I will never forget my doctor, Dr. Dan, explaining to me how the collaboration between medical professionals in The Children’s Oncology Group and their sharing of information from studies has led to saved lives.  I feel the need to repeat Dr. Adamson’s words, “in an era of rapid scientific discovery”!!!

Speaking of “rapid scientific discovery,” did you notice this article from the New York Times about using gene therapy to “train a person’s own immune system to kill cancer cells”? It may be possible that this is the beginning of a whole new way of fighting cancer:

“In essence, the team is using gene therapy to accomplish something that researchers have hoped to do for decades: train a person’s own immune system to kill cancer cells.”

 http://www.nytimes.com/2011/09/13/health/13gene.html?_r=1&pagewanted=all?src=tp

 With all of this encouraging news, I realize that the enormous strides we need to take will require funding for research. It will be next to impossible to achieve adequate funding without raising lots and lots of awareness about childhood cancer. This is why I am thrilled about what has happened with Ellen and The Blanket Fairy! The Blanket Fairy has not given up “Making Some Noise” on The Ellen Show Facebook Page. She has one more message for all of us to share with Ellen:

Please save this photo and then go to Ellen’s page and post the following: 

 

Please COPY AND PASTE THIS:

Ellen PLEASE view this video “Letters To Ellen”. These letters were written to you by kids all over the United States on behalf of the hundreds of thousands of children all around the world. 

http://www.youtube.com/watch?v=yX67K-Y-a7k

Please go to this page and post and share this on your walls and blogs. We need to make more noise to get our mission accomplished! STOP CHILDHOOD cANCER!

The Ellen Show Page: http://www.facebook.com/ellentv?sk=wall&filter=1

At first I thought, gosh, Ellen already did such a kind thing, maybe we should just be grateful and not ask for more.  Suddenly, the image of Oliver Swift dashed through my brain.  He asked timidly, even though he had already been served, “Please sir, may I have some more?”

I hope that Ellen knows we are asking for more because we are grateful. We are asking for more not to fill our own overstuffed bellies, but for the ravaged little ones who cannot ask for help themselves.

For them, we politely ask, “Please Ellen, may the children have some more?”

Remember the Kids Childhood Cancer Awareness

 Ethan’s Army News

Join us for the 3rd Annual Ethan Jostad Softball Tournament this Saturday Sept 17th at the Cal Ripken Fields in White City on Hwy 140. Kristy Cook will be playing on Team Ethan helping the Ethan Jostad Foundation battle Childhood Cancer. Come get her autograph and watch the teams play ball. Food vendors, venue for the kids, fun games, Field Dedication & Balloon realease at Noon. Huge raffle with over 60 items. More details listed at www.ethansarmy.org on the event tab.

ethansarmy.com

www.ethansarmy.org


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Ellen Loves The Blanket Fairy!

Grace: A Child's Intimate Journey Through Cancer and Recovery

“Ellen Got An Amazing Gift!” 

This is a quote from Ellen’s website. I love this! I really, really, really love this!!!

Thank you to everyone who supported The Blanket Fairy, helping to get Ellen to notice the beautiful gold package in the mailroom.  I have been amazed again and again by the strength, endurance, purpose and tenacity of the group I am truly honored to be a part of…

The Group of People Who Fight to End Childhood Cancer.

I witnessed this spectacular group of people join together for the cause of raising awareness for childhood cancer.  I want to give a special thank you to @abolishcancer for your help spreading the word on Twitter.

Did you see Ellen’s photo album? It was covered with Blanket Fairy Posters from all of us! It would have been impossible for anyone to miss.

Congratulations! This is a victory for children with cancer.  

Ellen Loved Her Gift From The Blanket Fairy!

On Ellen’s site today is a video!

http://ellen.warnerbros.com/2011/09/ellen_got_an_amazing_gift_0914.php

To Ms. Ellen DeGeneres,

Thank you. I have to pause now because my eyes are giving me trouble and it’s hard to see. This touches me deeply that you and your staff took the time to notice and share the desperate need of children with cancer. I want you to know that what you have done by taking notice– posting the video on your site about The Blanket Fairy—it lets us know that someone out there cares.  This gives us stamina to fight on for the children.

Thank you, Ellen, for the stamina.

Now, a gift of dance and comedy for you…

Faith, the Dancing Princess    http://www.youtube.com/watch?v=RdeJhGoC9NQ&NR=1

Gummy Worm Fate   http://www.youtube.com/watch?v=bsVt3bMMM8Q&feature=youtu.be

Finally, if you have your buzzers handy and feel the need to use them next week, 46 Mommas are going to Shave for the Brave in Washington D. C.  It might even be therapeutic, I don’t know. I do know a few of the Mommas and I know they are among the bravest, most kind women you will ever meet on this Earth. They are moms whose hearts have personally been crushed by the blow of childhood cancer. Yet, they fight on for the other children. These women have my utmost respect.

Ellen, you have my utmost respect as well. You heard the cries of thousands of people and you responded with genuine warmth and kindness.

I will never forget your kindness,

Melinda

Please bring your shears Ellen!

Please add this photo

to Ellen’s link  https://www.facebook.com/ellentv?sk=wall&filter=1

to ask Ellen to join the 46 Mommas next week!

Happy Birthday (September 14) to Alexa Nawrocki, a sweet angel baby girl with a special place in my heart.

For my praying friends, please pray for Melissa Masters, currently in ICU at Children’s Mercy and for

Nicholas George

http://www.nickybear.com/

 

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Ellen and The Blanket Fairy

Grace: A Child's Intimate Journey Through Cancer and Recovery

What a beautiful package,  Blanket Fairy!  I know what lies on the inside must be even more beautiful… to catch the attention of Ellen… all for the purpose of helping children with cancer.

I know your game, Blanket Fairy.

I love your game, Blanket Fairy!

Anyone else want to help out the Blanket Fairy while you sit in front of your computer with a tweet here, a Facebook message there?

Please copy, paste, and send into cyberspace for others to share, as requested by The Blanket Fairy:

I have shared this with over 1 million people so far this morning. Please share and go post on Ellen’s Show page at least. Thanks so much 🙂

I just got the delivery signature confirmation and this package is in the studio. It got there late this morning. Please everyone take 30 seconds to share this and post the following on walls. ♥

Ellen this package was delivered to your studios today. Please be on the look-out for it. There is something very special inside that I handmade just for you. It is called Package of Hope for a reason… and when you open this up you will see why. With Much Love The Blanket Fairy ♥

Gold Package for Ellen


http://www.facebook.com/pages/The-Blanket-Fairy/490397070410?sk=wall

PLEASE POST THE ABOVE ON THESE LINKS BELOW:

http://www.facebook.com/ellentv

and

http://www.facebook.com/ellentv?sk=wall&filter=1

and on twitter at:

http://twitter.com/#!/TheEllenShow

Tweet this: Ellen this package was delivered to your studios today. Please be on the look-out for it. ♥ TBF and if you can attach a picture of the package above that would be great!

‎Okay, Blanket Fairy, make the GOLD moment happen! 

Note to Ms. Ellen DeGeneres…

You know, Ellen, The 46 Mommas are going to “Shave for the Brave” in Washington D. C. next week, on September 21 at Union Station.  Seriously. 46 moms will shave their heads to raise money for St. Baldrick’s and pediatric cancer research. I would love for you to consider joining them— not to shave your head, but to see first-hand the desperate need to raise funds to stop childhood cancer.  (If you feel you absolutely need to join them in ridding your cabeza of hair for this great cause, please, for the kids, do! If you will, I will too!!!!!!!!!!!!)  

I would love for you to see how this tremendous group of women is raising money toward a cure.

Washington D. C. September 21st.

46 Mommas Shave for The Brave.

I imagine you have someone who can make the reservation for you. Please have them do it!

Just in case Washington D. C. has a bit of a fall chill in the air, don’t forget to bring the gift from The Blanket Fairy, you will be warm as toast!

 Love you, Blanket Fairy… love you Mommas… Love you Ellen… Love you warriors…

 

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