A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘cancer’

Taylor Swift, Thank You for the Spoonful of Love

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

Dear Taylor,

Since I heard the news about your response to the invitation to go with Kevin McGuire to his prom, I cannot stop smiling. It is truly stupendous that, rather than declining the invitation to his prom, you created your own invitation for Kevin to be your date for the ACM Awards!

I want you to know that this gift you are giving to Kevin goes far beyond the actual evening of your date. Each day between now and then, Kevin has the gift of looking forward to meeting you. When treatment times get rough, he has your gift to help heal his body and heart. When Kevin kicks cancer’s rear into remission, your gift will also lead him to help others.

Your heart-gift does not stop there.

Do you realize the impact of your actions on the entire childhood cancer community?

You see, the world of childhood cancer is packed full of suffering and sorrow. Children endure tortuous treatments, and parents crumble as they watch what no parent should have to see—what no child should have to endure. The reality of fighting childhood cancer is that the fight goes on and on. Even when treatment finally ends, 2/3 of children who survive will deal with life-long effects from the medicines that saved them.

Because of all this, it is absolutely necessary to add huge doses of love to the treatment protocol for children with cancer. To these children who are fighting for their lives, every bit of care has enormous meaning. A smile, a warm hug, a laugh, an open heart… all of these are more precious than gold.

How do I know?

I am a seventeen year-old survivor. Moments of love gave me the ammunition I needed to fight to get well. I won’t ever forget.

This is why what you have done for Kevin means more than what you ever imagined, to a multitude of people. Although Kevin is the one who received your invitation, I feel as elated as if it were me who received your warmth and love. Your gift to Kevin is a huge spoonful of love to all of us who work to stop childhood cancer.

Thank you for your loving heart and for the huge spoonful of love,

Melinda

I found this video with your song… 

Taylor Swift “The Best Day”

Believe in Magic Children’s Charity Pirates and Princesses

Creating moments of love!

Reef was diagnosed three years ago today-- Go Reef!

http://www.savebabyreef.com/

 

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Share Dreams and Wishes with Kevin and Owen

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

As thoughts of Kevin McGuire and his second battle with leukemia raced through my mind today, I also thought of Taylor Swift and her incredible act of kindness in asking Kevin to attend the ACM Awards as her date. I am still awestruck by how fast word spread through Facebook, and I want to thank each one of you who took the time to like his page and pass on the request. I admit that I rarely watch TV, opting to dance every night instead, but I will be sure to have myself plunked in front of the television on April 1st so that I won’t miss a moment of “Kevin & Taylor” coverage!

Along with thoughts of Kevin today, I also thought about Owen McMasters. Owen and Kevin have something in common. They are both in need of the drug methotrexate for their treatments—the medicine shortage we have been so very concerned about.

Owen and his parents spoke with Sanjay Gupta on CNN about their concern over the shortage of methotrexate.

Owen has decided for his Make-A-Wish to wish that children will be able to receive the life-saving drugs that they need to live. What a heroic, loving, and generous wish! Yet, there is something very, very wrong when a child needs to use his Make-A-Wish so that children can get the medicine they need to live.

Shouldn’t this supply problem already be taken care of by responsible adults?

St. Baldrick’s gives us an update on the current shortages of drugs used to treat childhood cancer.

When we are speaking of a child’s life or death need for medicine, we must ask ourselves, who is responsible for making certain that each child who needs medicine will receive it?

Let’s all take responsibility; let’s make Owen’s wish come true.

“But how?” you ask.

Let’s make Owen’s wish come true the same way that everyone helped make Kevin’s dream date come true…

Please speak up and spread the word!

Owen McMasters

 

 

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Taylor Swift’s Surprise Response to Kevin McGuire

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

There is no end to what we can accomplish when we work toward a goal from our hearts. What Kevin McGuire’s sister imagined would never happen, took a highly favorable turn toward the Even-More-Than-Anyone-Can-Imagine. Thanks to everyone who supported the Facebook Page that Victoria McGuire created for her eighteen year-old brother, Kevin will have something incredible to look forward to, as he battles leukemia again.

Four short days ago, I asked readers for help liking Kevin’s Page…

https://gracemelinda.com/2012/02/22/will-taylor-swift-say-yes-to-kevin-mcguire/

Although the Facebook page asks Taylor Swift to go with Kevin to his prom, Taylor’s response one-upped the request when she found she was unavailable on Kevin’s prom night. Instead, she invited Kevin to be her date for the ACM Awards!

Taylor wrote this response to Kevin on her Facebook page:

 “Kevin, I’m so sorry but I won’t be able to make it to your prom. But I was wondering, the ACM Awards are coming up. Would you be my date? Love, Taylor”.

The news story:

This news thrills me in so many ways. I find it thrilling to think that Kevin’s spirits will remain hopeful and positive through the worst of times in his treatment. It’s thrilling to know there is a young celebrity walking in our midst that has—first of all—responded to this heartfelt request, and–second of all– has responded with utmost kindness and compassion.  

Clearly, Taylor Swift’s talents go far beyond what we have enjoyed musically. Her physical beauty and musical talents have Earthly limits, but she has shown her heart has a beauty and grace that knows no bounds.

Taylor, I will always remember how you have shown Kevin the love inside you that is not of this Earth.

May many others follow your lead…

Kevin is Going to the ACM Awards with Taylor Swift!

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Will Taylor Swift Say Yes to Kevin McGuire?

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

I learned of a courageous young man named Kevin McGuire today. Kevin was diagnosed with leukemia when he was thirteen. After winning the first battle, Kevin—now eighteen—has learned that he must battle cancer again.

The full story–

Having been diagnosed when I was thirteen, I cannot imagine what Kevin is feeling right now. I do know that every ounce of love and care for Kevin will make a difference for the better in his current fight and in his future recovery. Those who have never known anyone with cancer cannot comprehend the complexity of treatments or the horror that someone’s body goes through while raging war against cancer. I have found that teens face a very different added emotional struggle that goes along with the physical fight.

A fellow teen survivor sent me this message last week–

“I thought no one else knew the hell and loneliness.”

What I want to describe is the deep need for us to give from our hearts to help Kevin. He not only needs methotrexate (thank you again to those who yelled, kicked, clicked, and screamed,) but he needs everyone around him to help heal him by lifting his spirit over and over again. Healing Kevin’s body is but a portion of the battle.

It sounds to me like the very best Spirit-Lifter for Kevin, would be for Taylor Swift to take him to his prom!

Taylor Swift take KEVIN MCGUIRE TO PROM!

https://www.facebook.com/events/338272569549921/

Please like this page, and let’s gather all of the Spirit-lifting medicine for Kevin that we can find. Okay, all together, on the count of three…

Taaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaylor!!!!

I bet she already have a dress to wear…

Please Say Yes, Taylor!

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Way to Yell, Kick, Click and Scream– I am SO Stinkin’ Proud of You!

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

I want to get down on my knees and thank each and every one of you who yelled, kicked, clicked and screamed about the shortage of the drug methotrexate. According to PAC2, who I must continually thank for uniting us and educating us, “the methotrexate crisis is averted”! The childhood cancer community has come together in these past few weeks, with a voice that has been heard! Like I said in the title to this post, “I am SO stinkin’ proud of you!”

This news came today from a FDA webinar:

1)    The FDA has approved APP Pharmaceutical’s application to manufacture preservative free methotrexate

2)    Manufacturing at Hospira has increased earlier than expected

The FDA concluded:

“We now have sufficient available supplies and will continue to see more in weeks to come.”

Further updates will come, as there are other potential drug shortages on the horizon.

If you would like to listen to the webinar, call 800-839-8792.

I send a huge thank you to Dr. Adamson from CHOP, for leading us in the legislative battles that loom around and about childhood cancer. Your leadership truly blesses us. Please keep doing what you are doing… saving children’s lives. You help give clarity to the issues for those of us who want to learn what we can do to help stop childhood cancer.

Dr. Adamson speaking about the drug shortage on PBS News Hour:

 youtube.com/watch?v=-HciX6

Finally, I’m thinking that Dr. Adamson must be a pretty fun guy to hang out with. (I see all of you laughing!) Anyone with a sense of humor, (direct and to the point) like the one he shows below, has got to be okay! 

In the quote below, it appears that Dr. Adamson challenges Congress to complete passing this legislation in the same it takes for him to get children with ALL into remission. He is not joking.

FOUR WEEKS 

“I certainly understand that passing legislation is complex, difficult. I suspect, however, that it is no more complex or difficult than curing a child with cancer. And I can absolutely tell you it is no more complex or difficult than what children with cancer face everyday.”

~ Dr. Peter C. Adamson, Chairman, Children’s Oncology Group

 Emma Grace is someone fighting cancer today…

What a beautiful girl she is!

Let’s continue our fight for her and for all the other children fighting.

We are with you Emma Grace-- all the way!

Way to Yell, Kick, Click and Scream my friends!

It is clearly apparent that somebody cares. Nice work.

Yes… nicely done.

 

 

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Life is one Breath Away From Death

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

“The whole of life is but a moment of time. It is our duty, therefore, to use it, not to misuse it.”

~Plutarch

This quote has extra special meaning to me right now, as I squeeze every drop of time from each day. I love knowing that “the whole of life” is “but a moment of time.” If we could see our lives as a whole more often, I believe mankind would include many more people of action. Something about the pace of our lives makes us view it all too often through the Zoom In Button. We see the teeny-tiny picture, but have no clue where it fits into the great scope of life.

When we hit the Zoom Out Button, the Grand Scope of Humanity comes into focus. We are able to see past the dirty laundry pile, into the external world that is calling for our help. From that external world is where I hear children’s voices calling to me. When I look to see who is calling, I hesitate knowing there is someone in need. Will I be able to help? What if the problem is way too big for me to handle? What if I allow this calling to change me? What if try my best to make a difference and fail?

“The fact is, that to do anything in the world worth doing, we must not stand back shivering and shaking at the cold and danger, but jump in and scramble through as well as we can.

~Robert Cushing

Action. What we need in order to stop childhood cancer is action. We need not be concerned about what is the right way or wrong way—just to make a way. I agree with Robert Cushing; it’s okay if we “jump in and scramble through as well as we can.” Even though finding a cure for cancer seems like an enormous and out-of-reach goal, we all better jump in and start “swimming” toward the goal of raising money for research that will lead to a cure.

Oh yes, there will be those who shake their heads and wonder why you would ever “waste your time” working toward a goal that is unattainable. There will be those who wonder why you have chosen what you have chosen to do to be of help. There will be those who scoff and snort and mumble when they see you working hard for a cause.

“Great spirits have always encountered violent opposition from mediocre minds.”

~Albert Einstein

But then…

There are people who dream big and work hard to create reality out of their vision. May I please introduce you to someone I learned of this past week?

The Andrea Rizzo Foundation (@DreasDream on Twitter)

http://www.takepart.com/photos/exclusive-carrie-ann-inaba-use-her-dance-skills-inspire-kids-cancer

Andreas dream and spirit live on through the joy children receive from this foundation.

I leave you with two opportunities for Childhood Cancer Advocacy with only a click…

Yes, if you click, it means you are a person of action!

Journey for a Cure— Ipads to cancer kids in the hospital

http://pep.si/rN6Mjf

Wet Will-E Water Balloons on Facebook

Please like this page and type “Isaiah Alonso Foundation Please!”

https://www.facebook.com/wetwillewaterballoons

Each one of us needs to become a person of action. If we recognize our lives as the gifts that they truly are, we become people who use, rather than misuse, our lives.

Life really is one breath away from death.

Thank you Anna! I agree!

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My love to you, Carol Burnett

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

Yesterday, Mom and I traveled to Santa Barbara to help the Teddy Bear Cancer Foundation sell raffle tickets for their Fall Fundraiser at the Lobero Theater.  Mom and I worked as a team;  I became quite bold in asking people if they would like to purchase raffle tickets! I believe I even cracked the “toughest nut” there! If you are scratching your head and wondering why the Lobero Theater sounds like a familiar name, it is because it is the same Lobero Theater I write about in Grace … the pageant location.

It was one of those spectacular Santa Barbara days when the ocean sparkled while the majestic mountains gazed loving down upon the brilliant expanse. For as long as I have known about Teddy Bear Cancer Foundation, they have always had a Fall Luncheon for their big fundraiser. This year was different. This year, Teddy Bear planned an evening of comedy to honor Carol Burnett.

Now, I need to give you a little background. My mom is one of those rare people who are never excited about celebrities. Her “celebrities” are children with cancer and those who help them. But—when she heard that Teddy Bear was honoring Carol Burnett, she lit up like a Christmas tree and began bubbling over with joy and laughter. She told me all about Carol’s show that she watched growing up and how Carol’s humor is like no others. My mom absolutely loves Carol Burnett!

When the big screen dropped down across the stage last night, and clips from Carol’s show began playing, I saw exactly what Mom was talking about. When Carol stepped to the podium to speak, I felt exactly what Mom had spoken of. Carol’s heart is huge. I say this not just because she helped Teddy Bear raise a lot of money to help families in need, but because she has a genuine love for her fellow humans. Something tells me this is why Carol’s humor is the absolute best ever, because of her tremendous care for those around her.

I learned something else about Carol last night. Carol lost her daughter, Carrie, to cancer.

It must have been very difficult for her to be there last night. I am grateful– extremely grateful– to Carol Burnett. I know firsthand how vital it is for us to support foundations like Teddy Bear. They helped save my life when I was imprisoned in the darkest pit imaginable. With their help, I received the help I needed to heal.

I want to thank everyone who attended last night, everyone who purchased raffle tickets (!), and I want to thank Carol Burnett for providing a beautiful bouquet of hope for children fighting cancer.

Carol… you have my love and deep respect forever.

Laughter is outstanding medicine for life!

http://www.youtube.com/watch?v=4bJoEfjHbvc&feature=related

http://www.noozhawk.com/article/100411_teddy_bear_cancer_foundation_fundraiser_to_honor_carol_burnett/

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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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