A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for September, 2011

Millions of Mini-Lights

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

Amid the turmoil and chaos that is childhood cancer there are millions of mini-lights. By mini-lights, I mean moments of intense joy and happiness. Today, I am so happy, I feel like the lights are more like a beacon!

Happy 7th Birthday Braden!

My buddy, Braden Hofen, turned seven years old today.  Not one of us can come close to imagining the battle he has been through. Braden may be only seven years old, but I look up to him. He helps me be who I want to be and who I need to be.  It’s easy to get our thoughts twisted around by the routine of living our daily lives—and then—someone brings us back to reality. Braden has taught me about reality, about loving, and about courage.

Today, Big Bear, as your adorable mom, Deliece calls you… I send you HUGE Big Bear Hugs.  Please hold onto them because I will be coming to collect them soon.

I want to share with you all of you the elation and joy we feel along with Braden’s mom on this day that many believed would never come… 

Deliece shared these feelings today:

*** So today is all about celebration and happiness!  Today is a day that I’m wearing my HOPE shirt and shouting “TAKE THAT cANCER” as loud and long and to as many people as I can!!  TAKE THAT cANCER!!! You DID NOT get today!! Braden wins this one!!!!

*** Thank you LORD for this day…truly a miracle! I was driving home from Price Chopper where I picked up his John Deere cake for his friends party tomorrow and was smiling and laughing so much I was bawling and had to pull over to get it together! Happy through my entire SOUL! Thank you Lord, thank you!!

Does anyone have any Kleenex nearby? Why is it that tears of joy feel so good?

Braden’s victories makes me want to work harder so that the day we find a cure will be closer. If we all work as hard as Braden has to fight cancer, I don’t see how the illusive cure cannot be right around the next corner. If Braden  can work this hard– remember he is still a kid–what excuse can we possibly have as healthy adults not to do all we can to stop childhood cancer?

Braden, lead the way my little buddy…

Braden’s Hope for Childhood Cancer

Happy Seventh Birthday Braden!

Isaiah Alonso Foundation asks us to “Like” this page:

Please “like” this page. LaFontaine Hyundai will donate $1 to childhood cancer research through Hyundai Hope on Wheels for every like!

https://www.facebook.com/LaFontaineHyundai?sk=wall

 

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Butterfly Kisses and Ordinary Grace

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

“If you know someone who has lost a child or lost anybody who is important to them and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them that they died. What you’re reminding them of is that you remember that they lived and that’s a great, great gift.” ~ Elizabeth Edwards

Two outstanding nominations have come in for the Big Heart Red Carpet Awards for September’s Childhood Cancer Awareness Month. What makes me very happy and full of hope for our future is that both nominees are my age. If you think of teenagers as self-centered, obnoxious, difficult beings who don’t give a darn about anyone but themselves, I have three excellent examples of teenage selflessness that will turn your opinion around.

The first nomination is for Lauren Clements and the non-profit she created called Ordinary Grace. (Yes, I do like that name!!!) Lauren has a huge heart for children with cancer, dedicating her time and efforts to make their lives better.

The second nomination is for Lindsay Kunik and Holly Walsh and their non-profit, Butterfly Kisses Care Baskets.

Ordinary Grace and Butterfly Kisses Care Baskets have similar missions. Lindsay describes their mission:

“Butterfly Kisses is a 501(c)(3) nonprofit organization that operates with several major goals. First, our goal is to lift the spirits of children fighting terminal illness and their families. As we saw firsthand with Ellie, cancer is a family disease. It does not only affect the child, who is diagnosed, but the parents, grandparents, siblings, friends and so on. We pride ourselves in making the entire family our focus. Secondly, our goal is to raise awareness for childhood cancer through involving as many people as possible. We encourage everyone to help, whether it is through a monetary donation, a donation of a toy, making cards for the children, or simply sharing with a friend about Butterfly Kisses. As two 16-year-olds who started this organization off of babysitting money alone, we believe that everyone can make a difference. It isn’t all about the monetary donations or the money we raise, but about the spirits that we touch, and the lives that we move. This is a big part of who we are and what we believe. It is our belief that there is no excuse for not getting involved. We appreciate $1 or $100, 1 card or 100 cards, 1 toy or 100 toys. Everyone has the ability to make a difference through Butterfly Kisses.”

With Lauren Clements at Braden's Run

This is your daily opportunity to be a childhood cancer advocate while only lifting your finger for a click!

The Andrew McDonough B+ Foundation

Have you voted today? Remember, for this contest we have to VOTE DAILY in order to win $50,000 for The Andrew McDonough B+ Foundation to help families of children with cancer nationwide. With 46 kids being diagnosed daily, many families need our help. Click “Vote for this Idea” at http://pep.si/oFeHcX.

SPREAD THE WORD! 

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The Truth Is, It Takes Sacrifice

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

“A man never stands as tall as when he kneels to help a child.” ~ Abraham Lincoln

 “If our American way of life fails the child, it fails us all. ~Pearl S. Buck

“Children are one third of our population and all of our future.”  ~Select Panel for the Promotion of Child Health, 1981

“Children are the world’s most valuable resource and its best hope for the future.” ~John Fitzgerald Kennedy

“It is easier to build strong children than to repair broken men.” ~ Frederick Douglass

In recognizing this month of September as Childhood Cancer Awareness Month, I am happy to share these quotes about children.  Today, and every day (believe me!!!!!) I want to give an outpouring of loving thanks to the people who work with and treat childhood cancer patients.  I have heard people say over and over again, “How can anyone do that… work with very sick children?” Right now, at this very moment, I want to express my sincere gratitude to everyone who “is able” to work with sick kids. Thank you for choosing the path you have chosen so that I – and many other children—are able to be here today.

I want to personally thank Dr. Dan, Dr. Gonzalez, Dr. A., Dr. Keshen, Dr. Pickert, and the entire staff at Cottage Hospital.

When I imagine the sacrifice it takes, not only to achieve the needed education, but to live each day with the great emotional impact of their occupations, my respect and admiration grows for everyone who has stepped into the “ring” of fighting childhood cancer.  What would we do if no one sacrificed?

The quotes above remind us that “our” children are more than worth sacrificing for. Giving now to help stop childhood cancer will certainly act as an “Insurance Policy” for our children in the future. You don’t need to get a medical degree, or work in a hospital, or even work with sick children… we all have something to give. 

Sharing from Max’s Facebook page:

600 CHILDREN get DX with cANCER a day 365 days a year. 200 children die from it each day 365 days a year. Is your child safe? $$ = Protection for children. Please buy a policy from www.curesearch.org, www.stbaldricks.org orwww.alexslemonade.org and treat your children’s future like you would your auto. Are your Children’s future in good hands? No restrictions apply, valid worldwide. STOP CHILDHOOD cANCER!

“The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be, another child like him.” ~ Pablo Casals

46-7 Stop Childhood cancer

 

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The Blanket Fairy

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

I want to thank Britta Fleeson for the very first nomination– The Blanket Fairy— for the Big Heart Red Carpet Award for this National Childhood Cancer Awareness Month of September.  I find this fascinating… it is just as I had imagined… The Blanket Fairy would never show up to any award ceremony because he/she operates anonymously.  I will admit that I have had the extreme honor and pleasure of meeting The Blanket Fairy, but I have sworn to keep the identity of this loving and talented person a secret.

It’s okay Blanket Fairy— it just makes all of us love you even more. Would you like to know what The Blanket Fairy does? He/she donates soft blankets of love to children fighting pediatric cancer.  He/she follows blogs, Facebook and sites like CaringBridge to notice if a certain child needs a lift and then contacts that child’s parents about a gift that their child would enjoy. Warm, soft blankets played a huge role in my healing!!!  To receive something like this must be a wonderful moment that lasts and lasts for a child with cancer.

What a perfect nomination!

Would you like to volunteer to help The Blanket Fairy in  some way?

http://theblanketfairy.weebly.com/volunteer-fairies.html

Do you have more nominations?

Everyone have their gold ribbons on?

Just checking.

Love you Braden!

For anyone asking me, “Melinda, why the heck won’t you be still about all this childhood cancer stuff?”   I can’t.  You see, each day, children die from cancer.  It’s horrifying to me that it takes so long for childhood cancers to be detected.  It’s unfathomable to try to comprehend why childhood cancer receives so little funding in comparison with adult cancers.  Less than 2% of federal funding for cancer research goes to childhood cancer research. This first video does an excellent job of helping you understand this point; the second one reminds us all that time is short, that life is precious, that we all have to give sacrificially until we find a cure.  Please give generously from your resources.

The Pie: Childhood Cancer

http://www.youtube.com/watch?v=fjp1es04qgE&sns=fb

Michael Tells it as it is

http://www.youtube.com/watch?v=PW20UOk4sqU&feature=share

 

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Big Heart Red Carpet Awards

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

Have you ever noticed (I’m not sure that it’s possible not to notice!) the headlines on the magazines available for purchase at our grocery store checkout stands? Right along with the latest headlines of the latest happenings of celebrities, there are captions commenting on how excellent it is that someone has lost weight, or how dreadful it is that someone has packed it on.

I have a hard time managing my brain when I look at those. I have a hard time managing my heart when I realize that we, as a society, value what our outer shells look like much more than we value the wholeness of our hearts. Is it just me, or is something sickening and wrong with this? I am not suggesting we discontinue bathing and grooming. I just think that The Grand Prize of Life cannot possibly lie in becoming The Thinnest, The Most Beautiful, or even The Most Famous.

I think the Grand Prize of Life lies much deeper… down in the deepest part of us.

Will you please help me look for winners of The First Annual Childhood Cancer Awareness Month Big Heart Red Carpet Awards?

I am looking for foundations, businesses, and individuals who have opened their hearts (wallets are appreciated, but certainly not necessary!) to fighting childhood cancer.

melinda@melindamarchiano.com

It’s way past time we start giving awards where they are truly deserved.

Know what’s funny…. if there were an award ceremony for this, no one would show up. These people already have their “prize.” They have helped children with cancer. They don’t need or want accolades or praise.

Those aren’t The Prize.

I leave you with —reminders of the reality of childhood cancer…

Andrew McDonough

Written by Andrew’s family…

 This B+ Hero is Andrew – the reason we fight so hard for a cure. Andrew was diagnosed with Leukemia (AML) on January 29, 2007, just 48 hours after playing 4 soccer games. His body went into septic shock and his heart stopped. Doctors said he wouldn’t live through the night, but he proved them wrong. He underwent nearly 50 surgical procedures, 4 strokes, multiple hemorrhages and a brain aneurysm that forced him to be airlifted to Jefferson Hospital in Philadelphia for emergency brain surgery. We were told he was the sickest child the hospital had ever treated. After 167 days in the hospital, Andrew passed away on July 14, 2007. www.caringbridge.org/visit/andrewmcdonough

 

46/7 is real... are you?

Written by Carla Mota…

… like always up all night fearing for my daughter… indescribable how it is to live fearing that your daughter might die… only someone who walks in my shoes will truly know the heartbreak I live with and for all of you who don’t, get on your knees and thank God NOW and beg him you never find out !!!

Update on Reefie... he's on his way to the U.S. today!

Written by Randy Hinton…

“If you force radiation ,steroids, and chemo on a condemned prisoner without his permission he can SUE THE STATE AND WIN. If you do it to a child it is called “Best medicine available”.

Praise the Lord for Remission

Written by Nikki Katz of Teddy Bear Cancer Foundation…

“Teddy Bear Cancer Foundation is currently working with a family whose three year old daughter is battling a Wilms Tumor. The family recently had to move out of their home into a small two bedroom apartment and have no furniture. If you or someone you know have any of the following items and wish to donate them please contact Nikki at 308-9941 or via e-mail.

Be sure to share this e-mail with friends, family and coworkers.

Queen bed, sheets, comforter, two pillows & pillow cases

Twin bunk bed, sheets, comforter, three pillows & pillow cases

One Twin Bed mattress

Sheets and comforter for a toddler bed

Small couch and chair

Dining room table with six chairs (not big)

TV

 DVD player

Standing lamp or two

Side Table for table lamp

Bookshelf

Thank you for your time and consideration.”

 

Reality check to all of America!

I will be awaiting your votes for the True and Most Deserving Winners in This Life.

 

 

 

 

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Think About the Unthinkable

 

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

Welcome to the month of September.

This is National Childhood Cancer Awareness Month. 

“The White House announced today that September has been declared National Childhood Cancer Awareness Month.

President Barack Obama made the proclamation to highlight the recent successes in treating pediatric cancer and to underscore the challenges still facing young people dealing with life-threatening diseases.”

From an article in Hem/Onc Today, dated September 2, 2011 (today!)

http://www.hemonctoday.com/article.aspx?rid=87148

My friends, I ask you to continue your fight against childhood cancer. For those of you who may read these words who have never looked to face the world of childhood cancer, I ask you to turn and look.

What I want you to see most of all is not a “what,” but many “who’s.”

The children…

It is our serious responsibility to care for the young in our society. If each and every adult knew that tomorrow, 46 random U. S. children will be “chosen” as cancer victims, I don’t see how we can live on without swift, determined action. I don’t see how we can look at these faces and not think about how their lives matter. The dearest way we can show  that their lives matter is to make a difference for the children of the future.

Breanna

Thank you to everyone who is building the Childhood cancer War Machine for your hours of dedication, sweat, and tears. You know exactly who you are.

I do too.

For everyone else, please bring yourself to think about what is truly “Unthinkable.”

Children do get cancer.

If we know the truth, well…I guess we each have to think about it, and then think about what part we each play in that truth.

Without a doubt, we are all called to action.

Max...

 

“Unthinkable” by Alicia Keyes (played by Melinda in my Team Max Shirt (which by the way is a fashion “must have!”)

http://www.youtube.com/watch?v=pDI8FC_kMm8

Go ahead… think about the unthinkable… 

Beware, you will fall in love with the children, over and over again.

Fair warning.

 

 

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