A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for February, 2012

What if I’m Not Taylor Swift?

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

With all of the excitement this past week about Taylor Swift asking eighteen year-old cancer patient, Kevin McGuire, to be her date for the ACM Awards, I hope that our excitement will lead us all to look inside ourselves and ask what we have, personally, to give. I mean, what if our mere presence does not elicit the excitement that Taylor’s does?

What if I am not Taylor Swift?

I am so happy you have asked. We can do plenty. Remember the four-year old boy named Kyle who needs a bone marrow transplant and is looking for a match? If having an opportunity to directly save a child’s life appeals to you, please register with Be The Match. 10,000 patients need transplants, and only one half of those patients will receive one. The very generous woman below is in the process of donating.

Amanda Simas Giving Someone Life


 

This next story will inspire you; I bring you the example of Sean. Sean is not yet an adult, yet he is raising money for St. Baldrick’s in honor of his twelve year-old cousin, Maeve, who is fighting osteosarcoma. St. Baldrick’s funds more in childhood cancer research grants than any organization except the U. S. government.

Sean’s St. Baldrick’s Fundraising Page

For good measure, I am delighted—truly delighted– to bring you the final option I will suggest today.

You can fill a child fighting cancer with pure joy by making it snow!

http://triangle.news14.com/content/top_stories/654306/family-creates-snowy-scene-to-make-memories-with-young-leukemia-patient

How terrific it is to know we don’t have to be Taylor Swift in order to truly bring joy to children fighting cancer.

Time to get going now… to make it snow!

https://www.facebook.com/pages/Blake-Jordans-Miracle/140550415991818?ref=ts

Blake Jordan needs a miracle kidney

 

 

 

 


 

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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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Dancing With Love for The Children

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

Dance, dance, and more dance filled my day today… you know how happy that makes me! We (Civic Ballet of San Luis Obispo) are rehearsing for our Spring Gala Performance.

Every time my body moves to music, I remember how I felt inside when I was physically unable to dance. It’s a memory that makes me overcome with not sadness, but with overwhelming appreciation that I am able to once again do what I love to do. Even though nearly four years have passed since my cancer treatment, my gratitude has not faded; it has grown.

As I celebrate my ability to move, I cannot help but think of children who are in the middle of their fight with cancer. How can I move through space to beautiful music and not notice there are others who cannot?

 http://www.youtube.com/watch?v=5c8HvpeRWrc

Today, I think of Trey…

“Okay for those that believe in the power of prayer, I could really use your help … Please Pray ♥!! I’m still not feeling good :(. Running a fever and had night terrors … Please pray that it’s just a normal kid sickyness … please! Below is my Mommy’s post from last night :(. Please pray for strength and peace for her and Daddy too.”
“Afraid to fall asleep. I can’t sleep when he’s “healthy” …afraid if I go to sleep I may never see him again. He keeps waking about every 40mins with a 20 min long night terror. God please just grant us a break.”

 

I think of Alyssa…

https://www.facebook.com/pages/We-love-you-Alyssa/299248763468174?sk=wall

http://www.giveforward.com/helpsupportteamalyss

I leave you with an opportunity to be an advocate for children with cancer. All you have to do is click away!

Pablove Foundation

“For every new “Like” Content Chemics will donate $1 to The Pablove Foundation. What are you waiting for?”
https://www.facebook.com/contentchemics

Thinking of Alyssa


 

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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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Penn State Dance Marathon and a Boy Named Kyle

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

Wow, wow, wow!

The Penn State Dance Marathon (THON.org) has raised $10,686,924.83 for pediatric cancer research!

THON.org is the largest student-run philanthropy on this Earth. The Penn State IFC/Panhellenic Dance Marathon raises funds and awareness for the fight against pediatric cancer. In 1973, a group of students held their very first dance marathon; the 39 couples who participated raised $2,000. Now, THON has over 700 dancers, 15,000 student volunteers, and it has raised more than $78 million to benefit The Four Diamonds Fund at Penn State Hershey Children’s Hospital.

http://www.thon.org/whatisthon/cancer_facts

THON is a shining example for all of us who work to stop childhood cancer. I absolutely love to see and hear about young people caring about others. Truly, I wish children would learn more about philanthropy in school when they are very young. I wish they could have many opportunities before them to think of others and to learn altruism. Teaching children to care for others gives them a unique dose of gratitude for their own lives—it teaches them they are a person of worth because they have something to give.

What a concept, right? Because they give, they have a special value. A person’s value does not come from what they “have,” but from what they “give.”

To the THON dancers and volunteers, thank you! You have given more than your time, effort and money. You have inspired us, encouraged us, and lit a path for us to follow.

And now, I need to tell you about a boy named Kyle. Kyle is four years old; he needs a bone marrow transplant, and his family is desperately seeking a donor. They have created this site to help find one…

Could it be you?

http://kyleneedsyou.org/

One little cheek swab will let you know if you are a match.

Let’s spread the word and help save Kyle’s life.

Kyle Needs All of Us

 

 

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There Once Was a Blog About Childhood Cancer

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

Once upon a time– long, long ago, and in this very land we live in– there was a girl who wrote a daily blog to help raise awareness about childhood cancer. With a deep care in her heart for all children who have faced the battle, she sought to make a difference in our world for them. Because childhood cancer is pitifully overlooked and underfunded, she knew she needed to join other childhood cancer awareness advocates in sharing and speaking the truth. She knew her role in this life as a survivor was not just to be grateful for her own life, but to work passionately to stop childhood cancer.

Alas, this young survivor entered her senior year of high school. Amid all of the studying for her challenging advanced placement courses, she began applying to colleges. With future options spread out before her, she knew, without a doubt, that she wanted to study to become a pediatric oncologist. And so, the college applications began, as the girl wrote essay after essay with the hope of being accepted to a great school. Double alas, the reality of paying for her college education sent her on a “Scavenger Hunt” for scholarships, and the essay-writing and packet-making reached a fever-pitch!

But something huge has been missing from her life. She needs to educate people about childhood cancer. She needs to share news; she needs to be aware so she can make others aware. Her passion and purpose have been buried under the weight of preparations for the future. She has had to keep reminding herself that there is purpose in the applications, that they are so much more than just “papers.” Her sincere hope is that all of the application work will translate one day into saving the lives of children.

So now, with a huge smile, and a breath of relief, this girl is about to re-enter the World of Blogging About Childhood Cancer.

It is SO good to be back!!!!!!!!!!!!

Please do all that you can to make our voices heard—thank you PAC2 for all of this information about the severe shortage of methotrexate.  It is true, “Our kids need ACTION NOW!”

New York Times Article—“Supply of a Cancer Drug May Run Out Within Weeks”

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=2

Dr. John Maris testified before Congress about the shortage

http://curechildhoodcancer.ning.com/forum/topics/dr-john-maris-chop-testomony-to-congress-on-the-drug-shortage?xg_source=activity

Please take swift action—as if it were your child who needs this medicine to survive…

President Obama, The White House: 202-456-1111
FDA: 888-463-6332

Find and call your rep here.

Call the 5 companies who have stopped/slowed production. Press the option for “adverse effects” & tell them how you feel:

APP Customer Service
1-888-386-1300
Bedford Customer Service
1-800-562-4797
Hospira, Inc. Customer Service
1-877-946-7747
Mylan Institutional
1-888-258-4199
Sandoz Customer Service:
1-609-627-8500

Finally click here to contact your legislators now and urge them to cosponsor the Preserving Access to Life-Saving Medications Act now!

(Thank you PAC2!)

 We must act now!

Why???

Out of respect for this brave warrior’s family, the names in the following quote will remain anonymous. I know this is not what people want to see or hear… but it is truth. Today, this is what one incredible cancer child faced. This is what the family faced.

“It won’t be much longer. His breathing is rapid and shallow. His chest sounds crackly and he’s been coughing up foamy white stuff. (  ) suctioned some out and saw blood in the tube. This is horrendous. I don’t think he’ll make it through the day, but I don’t know. So sick to my stomach right now.”

Our choices are:

1)      Look away and do nothing

2)      Act boldly

I choose to act boldly. Please, allow your love for children to stir you to immediate action.

With my deep respect to all those who choose action, I give thanks for you!

I love Reef! He is calling all of us to action

 

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