A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for September, 2011

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!



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

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


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.                                        

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.


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


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!


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


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.



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.



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

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.


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


Alex’s Lemonade Database Project


46 Mommas Shave for the Brave at Union Station


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



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.”


 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: 



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. 


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.



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!


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,


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



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






and on twitter at:


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…


The Pain of Caring

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

On any day our lives can change.

At any moment, our lives can change.

On this day of remembrance, ten years after 9/11, I feel sorrow.  As television stations show news clips of the destruction of the World Trade Center again and again, all I can think of are the lives. I think of the lives lost and the lives that have been drastically changed by the catastrophe. 

In the senseless violence of these acts of terror, I find myself asking, “What can I learn from this?” The answers spin around in my head, making me dizzy. There is so much to learn from this. What I am learning from this is not complex, but plain, simple truths…

—We are mortal.

—Our time here is short.

—Since our time here is short, we have no time for hatred.

—Our purpose here is not to gather and “get”, but to seek out and give.

—What The Media World tells us is important means zippo in the Great Scope of Life.

—We need to love deeply, fully, holding nothing back at all.

My heart is with the suffering—those who are grieving a loss– those who are fighting for their lives– those who are helping loved ones fight for their lives. With everything in me, I want to be a building block for change that will relieve suffering.  I want to notice when people suffer and not turn away.  I want to be grateful for all of the people who give me love. I want to be especially grateful for those who are close to me; the people who will always and forever love me unconditionally.

I feel that sharing in the suffering makes us more Heart Aware.  There is a love I have inside me that comes straight from the pain of caring. I would not trade this love for anything.

Please don’t be afraid of the pain of caring; it is great nourishment and terrific exercise for our hearts.

One year ago yesterday… never forgetting…

Isaiah Alonso


Thinking of Isaiah





Hold Them Close

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

The incidence of invasive pediatric cancers is up to 29% in the past 20 years. Source: PAC2 & CureSearch

One week from tomorrow, I will have the honor and opportunity to sit in the Reading Chair to share excerpts from my book at the Central Coast Book and Author Festival. The event takes place from 10-4 at Mission Plaza in San Luis Obispo on Sunday, September 18th.  Will those of you who have read Grace please help me choose what you think would be the best passages, so that I can use my time best to raise awareness for childhood cancer? The people organizing this event had no idea that September, along with being Literacy Month, is Childhood Cancer Awareness Month as well. They do know now!

Maybe this for one… from Grace

“I heard myself groan and pried my eyes open to look at the clock. Believing it was morning, I was shocked to see it was only midnight. Ugh. I tried to adjust myself to get more comfortable, but I found my weakness overbearing. I didn’t want to move. Heck, I couldn’t move. I let out another moan. My stomach hurt so badly. The pain was nearly unbearable, like barbwire was trying to be churned up and digested in my belly. The cries and moans that escaped from my lips woke Mom, who slept on the fold-out bed nearby. As she turned to look at me, I blubbered and groaned in pain. I just couldn’t help myself—that was one of the worst moments of my life. Mom reached for my small hand that hung, motionless, over the side of the bed. The tears flowing down my cheeks settled on my pillow, making it wet and soggy. I didn’t believe where I was or how I felt. It was all too intense, too scary—too mind-blowing. Lying there, I wondered if other people besides Nurse Cyndi and Mom knew of my suffering. While I sobbed, groaned, and experienced total and complete helplessness, people were sitting on their couches watching Jay Leno with a tub of Häagen-Dazs. My mind tried to grasp this concept, but it became too exhausted and failed. Words only from hell will begin to suffice in describing how I felt that night. The only thing that gave me hope was the warm, soft touch of Mom’s hand.”              copyright Melinda Marchiano 

 As I was saying in my last post, it’s those mini-lights of love and hope that help get us through the most difficult times. If we are not careful—and grateful—we miss them all. No matter how bad things got, I had Mom’s warm hand. My message here to all of the families who feel they can do nothing to help the suffering of their beloved child who is fighting cancer is to let you know that the best thing in the world was to have someone just be with me, just love me, just hold me.

So hold them close. Know that your presence, warmth, and love are exactly what they need—even if they cannot express it.

Hold them very close.

Reefie Needs our Help

 An update for everyone who has fallen in love with Reefie:

Please continue your support for this amazingly strong and incredibly lovable boy!


by Charmeon FortheCure Carneson on Friday, September 9, 2011 at 2:29am

“OMW Dont know where to start. Ryan and Lydia are blown away. Such positivity, such incredible hope. Thank you Lord and everyone for getting him to this incredible hospital. Dr. Shah wants Reef back as soon as Novemberr as an inpatient for a week and then for an outpatient for 1 year. God knows how we are going to raise that amount of money in so short a space of time. Dr. Craig is soooo positive, says they have had worse contractions of hands and those kids are now using their hands perfectly. OPERATING WOULD BE A HUGE MISTAKE. They will have him eating, drinking talking and using his hands in a year. Dr. Shah says Cyclosporin is known to affect the hearing adversely and Reef may need to be fitted with hearing aids. The have a new drug on the market which apparently after his ONE WEEK of inpatient treatment will clear up his GVHD. GVHD WILL NOT BURN ITSELF OUT as we have been told, the contractures would only get worse and Reef would land up in a wheelchair. They are sorry that he was not seen to earlier. They have not seen a child with such bad GVHD before because they NEVER let it get this bad before treating it. REEF WILL HAVE TO HAVE ANOTHER PORT INSERTED. They also recommend that he see a pulonologist (horrified at the piece of port that is still in his chest) an opthalmologist, an orthopaedic surgeon – oh so may specialists. THEY WERE AWESOME – everything Reef had done he got a little toy, at one stage he dropped his toy, a nurse swooped down grabbed it, sterilised it and gave it back to him. GET THIS HE WILL BE ENROLLED IN SCHOOL there in December as they encourage that he mix with other children.
HE MUST NOT HAVE HIS BABY INNOCULATIONS NOW as we have been advised,. OH Lord I could ramble on here for hours – So much positivity at 2.30 am had my head reeling. Ryan will need a work permit in order to stay in the country that long. I AM IN TEARS HERE AND JUST CANT STOP – THANK YOU TO EVERYONE FOR GIVING REEF THIS CHANCE TO BE A NORMAL HEALTHY LITTLE BOY.”

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