A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Orbs of Beauty

Grace

 
 
 
 
“Of course, looking forward to things or evoking wonderful memories from times past is great, but I began to realize, lying in that hospital, that I didn’t want to just “get through” my days. I wanted to live them and not throw away the precious days God gives to me.”
 
 

Children facing cancer fight it with exceptional grace. They reveal a beauty about life through their fight. Surrounding them, there is an aura of wisdom. Within them, their unimaginable strength, true courage, and their love for life all mix together to create an Orb of Beauty.  

I wish you could know them. I wish you could feel just one of their hearts. I wish you could see how they “just fight their cancer,” and how they do it without complaint. I wish you could see their eyes looking up into yours as they pretend not to hurt.

These children are heroes. They light the lives of everyone they meet. They remind us of what we take for granted every minute of every day. They unveil our selfish ways.

 All around them, they shine their Orb of Beauty.

People wonder why I am going to shave my head… 

I wonder… how is it that we can be more like them?

the faces of childhood cancer

My St. Baldrick’s Participant Page:

http://www.stbaldricks.org/participants/melinda

Thank you to everyone who signed!

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

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Hunter

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

 

“My humanity is bound up in yours, for we can only be human together.”

~Archbishop Desmond Tutu

 

Yesterday, I wrote about families who have suffered the greatest of losses who turn their grief into hope for kids of the future. Great loss and great suffering can serve as powerful motivators for good. The enormous challenge for those of us who work to raise awareness for childhood cancer is the delicacy of the task. If we pound people with horrible images of The Truth, (even though it is The Truth,) no one will look, and no one will learn. But if we combine those images of The Truth in a wise and compassionate way, like Mike Gillette has done for Day 3 Preview of The Truth 365, we can reach out to the humanity we are “bound up” with. I have HOPE that humanity will listen with delicate, sympathetic hearts, and engaged and active minds.

Yes, I would like all of humanity to become engaged in the mission of ending childhood cancer. Please don’t look at me with those crinkly eyebrows. It is not too much to ask all of humanity to care about these kids. 

The Truth 365 Healing Hunter Foundationhank you, Lenore and Zen, for sharing your gift of Hunter with the world.  (HealingHunterFoundation)

The Truth 365 Day 3 Preview

http://www.youtube.com/watch?v=DudMv3_Brxk&feature=youtu.be

Lenore Davis, Hunter’s mom wrote beautiful thoughts from her heart on The Truth 365 Facebook page today…

“Woke up this morning with very puffy eyes. Didn’t realize Zen and I were going to see our lives flash in front us last night before we went to bed. It was almost as if a sweet lil’ piece of us died all over again. 

Watching the amazing tribute that TheTruth365 pieced together for Hunter was extremely touching and very heartwarming. We were not expecting to see so many deeply felt images of Hunter’s adorable face get placed to a song that seemed so appropriate. After viewing it, both of our faces laid in tear soaked pillows. Still in disbelief of what happened to our lil’ love. Zen reached over and held my hand, and as soon as a piece of his warm, loving body touched mine…I held on for dear life. Such a connection to Hunter I feel through him. Our pain coincides and our broken hearts collide in a way that I feel will bond us together forever, and keep Hunter sweetly by our sides. 

Thank you once again, Mike and TheTruth365, for honoring our precious Hunter amongst so many other special lil’ souls…those that have turned into golden angels and those that are still fighting. Zen and I are truly honored to be standing with you and feel ever so grateful to be contributing to this cause. These magnificent children are being heard and their words and their stories are tenderly piercing the hearts of thousands of individuals who can, and will, make a tremendous impact. 

Much love, strength and peace and many, many blessings to all of the families out there whose lives have been touched by childhood cancer. Lenore, Zen and Angel Hunter Zen”

Hunter…

Let our love for your beautiful face and your sweetest of spirits, guide us and strengthen us on the road to a cure.

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Stand Up 2 Cancer and Taylor Swift, Turning Tears Into Hope

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

“And we wept that one so lovely should have a life so brief.”

~ William Cullen Bryant

“One so lovely”…

The attention to childhood cancer in last night’s Stand Up 2 Cancer production was HOPE for my spirit. Stand Up to Cancer has partnered with St. Baldrick’s to create a Dream Team; research means HOPE in so many ways. There are children who need treatment options now, right now.

PAC2 brought me this great news in my inbox today! I could not summarize this or explain it any better:

“Headed into last night’s show, while SU2C had funded some childhood cancer specific research, it had yet not formed a Pediatric Dream Team (i.e., larger, higher-dollar, multi-institutional research projects).   There are seven existing SU2CDream teams.  

But yesterday’s show and the collaborative efforts of St. Baldrick’s and SU2C are going to change that.  It almost seemed like the majority of the show was focused on kids!  Having Julia Roberts caution viewers that cancer “kills a child every four hours in this country.”  Having Justin, St. Baldrick’s Ambassador Kid, featured so prominently, having Taylor Swift dedicate her song to Ronan, and the hearts touched by Avalanna’s story are all giant leaps forward for childhood cancer awareness!!  Reaching a nationwide audience no matter what channel you tuned in!!  Leveraging our ‘normal’ audience an order of magnitude, or two!! 

 Hopefully a prime example of Awareness–>Funding–>Research–>Cure”

Thank you to PAC2 for always bringing us updated news!

Taylor Swift’s song to Ronan:

http://www.youtube.com/watch?v=1ITrd7fM6aY

When we see the faces of childhood warriors, the youngest among us who fight cancer, they seem to always, always have a smile, even when their suffering is great. While they suffer, they think of others. They don’t want others to be sad because of their suffering. They don’t want to be their suffering.

“People know me for my happiness. I don’t want people to think of me for sadness.”

~ Jack Bartosz (August 24, 2012)

And so these brilliant spirits among us teach us strength. They teach us about courage and about what is truly important in our lives. They teach us not to be petty, or mean, or frustrated. Instead, their characters lead us to better ourselves. They lead us to the paths of compassion, gratitude, acceptance, and pureness of love.

I love them. I love these children with every speck of my heart. For this reason, I am one very happy Melinda! Stand Up 2 Cancer has stepped up to the plate for the kids!

SU2C, YOU ARE AWESOME!

Taylor Swift…

I keep searching for the words to thank you for your beautiful song, but it’s hard for me to see the screen while I type– and there are no words. If you could see the tears falling over my cheeks, you would instantly know the extent of my gratitude. Tears of the gratitude type speak volumes. Thank you!

To all of my AMAZING nurses, and to all the others… Thank you!

Did you know you can Be a Part of The Cure?!

 

 

 

 

 

 

 

 

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I Got in Trouble on Twitter

I have had a Twitter account for over a year, but I have just begun regular tweeting in the last couple of months so that I can help spread the word about childhood cancer and also to receive regular updates from various cancer information sources. One of the strategies that the founder of the Oprah Please Do A Show on Childhood Cancer uses to grow the page is tweeting. She tweets to different celebrities– people who have huge Twitter followings– and asks them to retweet about “Liking” the page. Her Twitter name is @PiedPiperinKC, and when she gets someone to retweet, all of the rest of us “Followers” retweet the tweet. Got all that????

Okay, so here comes little @1ballerina (me!) trying to help the cause. I retweet everything that comes along, but I start to think, “Hey, I could actually tweet some of my own if I just copy @PiedPiperinKC’s tweets and start sending them off to other people she hasn’t sent to. I’m feeling really good about sending off tweets to help raise awareness for childhood cancer– working to save lives– when poor little @1ballerina gets a swift CYBERSWAT! I received a return tweet from an obviously disturbed recipient. Warren Whitlock, who has an enormous Twitter following, told me not to send him “Spam” and then told me he would have to “report me.” I followed with a “Is this Spam?” tweet and he politely replied with the definition. I had no idea that I could get in trouble and have people “Report me” on Twitter! How many tweets can I send before I cross over the line to SPAM? If I change up the wording just a bit in each one, does that disqualify my word-shuffled tweets from being classified as SPAM?

What the heck happens to poor little @1ballerina if I do get “reported”??????????????

Who ARE  the Twitter Police?

I hope they don’t catch me… I am going to have to type my childhood cancer awareness tweets in the dark of night… and hope they don’t GET me.

May I remind all of you one more time why I am willing to risk the Twitter Police?

http://www.kmbc.com/r-video/25662362/detail.html

Sometimes we have to ruffle a few feathers on our way to saving children’s lives. I am very sorry Mr. Whitlock for ruffling yours… @1ballerina really didn’t mean to.

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

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ARCs of Grace Have Arrived!

Last Friday, I was feeding Brownie, my neighbor’s dog.  It was late in the day, after school and dance.  I had already fed Brownie his two scoops of food and given him his pill-in-a-treat. He had finished eating, and I had already talked sweet “doggie talk” to him so he wouldn’t be so lonely for his people.  Brownie has trouble with his back legs, so he lies down when he eats. Each time I took care of him, I would rotate the bowl to make it easier for him, and when he was finished I would brush him. I miss him.

Anyway, I was finishing up with Brownie when I heard the familiar sound of the UPS truck rounding the corner onto our street.  Since Brownie lives quite a distance from our house, Mom and I raced down Brownie’s driveway so we could look down the street to see if the UPS truck would stop at our house (we knew that ARCs would arrive any day.) 

The Brown Truck drove past our house and pulled into the circular driveway just past ours. 

Mom joked that the Brown Truck would come back to our house after turning around in that cicular driveway.

She was right!!!!!!!!!!!!!!

The Brown UPS Truck pulled up in front of our house and a man climbed out with a dolly and rolled three big boxes of Gracie Goodness to our front door… translated:

ARCs of Grace: A Child’s Intimate Journey Through Cancer and Recovery are here, and I am so happy to share!

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Kairol Rosenthal

My favorite thing about the whole book endorsement process is meeting new people.  It has been fascinating, and an amazing study in human nature.  I love seeing how people respond.

One person who responded with tremendous warmth and kindness is Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Besides being a fellow cancer survivor, she shares my love of dance as well.  It means so much to me that she took her very valuable time to read my work, and she responded with a heartfelt and well-thought out endorsement for Grace: A Child’s Intimate Journey Through Cancer and Recovery.  

Kairol told me that she gets inundated with endorsement requests from authors who write about their cancer experience.  I can imagine her email inbox exploding.  And then I very gratefully acknowledge what she has done for me.   Kairol, thanks so much for showing your care for cancer kids in such a beautiful way.

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Photos

My "what I used to look like" look!

My "what I used to look like" look!

This is me dancing between chemo and radiation. I'm tired, nauseous, and light-headed....but dancing!

This is me dancing between chemo and radiation. I'm tired, nauseous, and light-headed....but dancing!

Antonio, my stuffed gorilla, came with me every day to radiation dressed differently. Here he is sporting his Cottage Hospital shirt.

Antonio, my stuffed gorilla, came with me every day to radiation dressed differently. Here he is sporting his Cottage Hospital shirt.

Me and the crew from the clinic (from left to right) Nancy (a.k.a. Zippy), Nurse Pam, Me, Dr. Dan, and Robin

Me and the crew from the clinic (from left to right) Nancy (a.k.a. Zippy), Nurse Pam, Me, Dr. Dan, and Robin

Great Aunt Phyllis and I, fellow cancer survivors with hair sproutin'!

Great Aunt Phyllis and I, fellow cancer survivors with hair sproutin'!

A girl from dance sorta "dared" me to come in the next day with a mohawk.......I did.

A girl from dance sorta "dared" me to come in the next day with a mohawk.......I did.

2008 Arroyo Grande Relay for Life

2008 Arroyo Grande Relay for Life

Just a few of the luminaria bags that lit the Relay track in memory or in honor of someone who battled cancer.

Just a few of the luminaria bags that lit the Relay track in memory or in honor of someone who battled cancer.

I spoke at the Teddy Bear Cancer Foundation Luncheon in October 2008.

I spoke at the Teddy Bear Cancer Foundation Luncheon in October 2008.

I was Marie in the Civic Ballet of San Luis Obispo's Nutcracker in December 2008.

I was Marie in the Civic Ballet of San Luis Obispo's Nutcracker in December 2008.

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Photos

Photos

These Disney gloves got a lot of use, and they also created many smiles and laughs.

These Disney gloves got a lot of use, and they also created many smiles and laughs.

My fourth and final round, I played "Can't Help Fallin' in Love With You". There was a piano on the adult floor, and I played for some of the pediatric nurses.

My fourth and final round, I played "Can't Help Fallin' in Love With You". There was a piano on the adult floor, and I played for some of the pediatric nurses.

Nurse Cyndi kisses my bald head before my very last hospital chemo.

Nurse Cyndi kisses my bald head before my very last hospital chemo.

Me and Ricco (my IV pump) get decorated for my last hospital chemo party!

Me and Ricco (my IV pump) get decorated for my last hospital chemo party!

So many "Melinda supporters" came to the party!

So many "Melinda supporters" came to the party!

I had to go back for one last outpatient day of chemo, and to celebrate, I went with a Hawiian theme.

I had to go back for one last outpatient day of chemo, and to celebrate, I went with a Hawiian theme.

This is me and my doctor, Dr. Dan, the greatest guy eva!

This is me and my doctor, Dr. Dan, the greatest guy eva!

One extremely boring day, I discovered stuffed animal wigs+mom's camera=fun!

One extremely boring day, I discovered stuffed animal wigs+mom's camera=fun!

My redhead look

My redhead look

My "the sun will come out tomorrow" look

My "the sun will come out tomorrow" look

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Photos

Photo

I received "Beads of Courage" for every procedure, poke, day of chemo, ect. This is me collecting them during my second round of chemotherapy.

I received "Beads of Courage" for every procedure, poke, day of chemo, ect. This is me collecting them during my second round of chemotherapy.

Here I am discovering my true inner baldness!

Here I am discovering my true inner baldness!

Larry, our dog, was my "therapy dog" at home.

Larry, our dog, was my "therapy dog" at home.

Larry had it pretty good when comforting me!

Larry had it pretty good when comforting me!

Mom told me to not play with my food, but it gets pretty boring in the hospital...you know?

Mom told me to not play with my food, but it gets pretty boring in the hospital...you know?

Nedding to stay busy, but not feeling well enough to do anything major, I baked and cooked quite often.

Nedding to stay busy, but not feeling well enough to do anything major, I baked and cooked quite often.

This was my first blood transfusion, which took most of the day. I began to play with my tube in various ways!

This was my first blood transfusion, which took most of the day. I began to play with my tube in various ways!

I became the master of balancing things on my head. This is only one example, a water bottle with a straw carefully placed on top. The bald head gave me a little (ok, a lot) of an advantage!

I became the master of balancing things on my head. This is only one example, a water bottle with a straw carefully placed on top. The bald head gave me a little (ok, a lot) of an advantage!

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Photos

Photos

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Photos

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