A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

Dear Cancer,

Dear Cancer,

Three years ago, on December 18, 2007, Dr. Dan called to tell me that my second biopsy revealed your identity– Hodgkin lymphoma. You were so clever in your hiding, so adept in disguising your destruction, that you nearly got away with suffocating me before we even found where you were lurking. I remember a feeling of power over you just learning your name. You became my instant enemy.

You did your very best Cancer, you really did. You fooled my friends, doctors, and most of my family.  You whittled me down to 79 pounds. You brought me to the brink of death time after time and ravaged everything in your path.

What tortures me most is seeing other children suffer and die… and you know that.

But guess what Cancer?

By the Grace of God, I have family, friends, and a medical team who have helped me to rise far above your treacherous grasp. Not only am I out of your grasp, but I am turning around the attack. Yes Cancer, you heard me right. I am out to get you. There is nowhere you can hide.

You know Cancer, every time I share my story, or someone reads Grace: A Child’s Intimate Journey Through Cancer and Recovery, people become more aware of you and the horrors of your existence. The more aware we all become of you, the more money will raise to fund research for your swift demise.  And I haven’t even begun my college education which I plan on dedicating to eradicating you.

Your Glory Days are over Cancer. I advise you to start shopping around for your cemetery plot.

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Dear Oprah…

Dear Oprah,

I thought long and hard about what I want to do for my Make-A-Wish—where I want to go, who I want to meet. It seemed to be the toughest decision in the world. Each desire that popped into my head left me feeling even more indecisive, and I was left searching for what I truly wanted.

Then, it came to me; it was so obvious. I want awareness. I want better care. I want understanding. I want hope. I want a voice for all of the kids and families who are too beaten down by cancer that no one can hear their cries. People know very little about childhood cancer and greater awareness will lead to earlier detection and SAVE LIVES.

I wish with all of my heart and every fiber of my being that someone, at last, educates people about childhood cancer. My wish is, in fact, not just a single desire, but the wish of thousands and thousands of people.  Yes, childhood cancer is sad, but if we acknowledge it, face it head on, and make everyone aware of it, many children’s lives will be saved and many parents will not have to lose their child.

My wish is the single most passionate, heartfelt desire I have ever known, and with your help, I am hoping and praying that it will come true.

With my sincere appreciation for considering my wish,

Melinda 

In her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, Melinda Marchiano offers an honest and inspiring portrayal of her cancer experience through the eyes of a teenager and proves there is medicinal value in love and laughter.  Melinda and I share a common bond.  We are survivors.  And we believe in the importance of empowering fellow survivors to live life on their own terms.  By sharing her story, Melinda is giving a voice to this global epidemic that needs immediate attention.  I am grateful to Melinda for having the courage to speak up and for her generosity in helping others fighting cancer.   – Lance Armstrong      

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

 

                                                               

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Will Oprah Respond to over 10,000 Requests?

As of today, there are over 10,000 “likes” on the newly created Facebook  page asking Oprah to do a show on childhood cancer.

http://www.facebook.com/pages/Oprah-Please-Do-A-Show-On-Childhood-Cancer-Our-Kids-Need-Your-Help/156632377680799?ref=ts

If you would, please “like” the page as well. Please take a moment to browse the stories of some incredibly brave children. There are also links on the page to organizations who offer help for pediatric cancer research. St. Baldrick’s Foundation is the world’s largest volunteer-driven fundraising program for childhood cancer research. I understand that there will be some moms appearing on Stand up to Cancer tonight who shaved their heads to raise money for St. Baldricks’s and childhood cancer research.

Why all this talk about raising awareness and research? Because a cure is within our reach. If a cure is within our reach, we need to start reaching now– and stretch as far as we possibly can! Let’s grab the cure and save children’s lives!

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CureSearch and Children’s Oncology Group

I am not quite ready to move on from CureSearch and how they support Children’s Oncology Group. I remember one of my first appointments with my oncologist, Dr. Dan, when he told us about CureSearch and Children’s Oncology Group. He was very enthusiastic about how the “Pediatric World of Cancer” shared information and how this has led to major improvements in saving the lives of children with cancer. Children’s Oncology Group is highly responsible for this. Without all of this information sharing about clinical trials, I would be living in heaven right now.

One more thing that I will always be grateful to CureSearch for is for having up-to-date, accurate, and understandable information on their website. Can you imagine how my mom must have felt when she found out that I had a huge, scary, un-nameable blob inside my chest? Dr. Dan was kind and compassionate when he strongly suggested to my mom that she should go to the CureSearch website for information (somehow he knew that my mom is a major information gatherer; something about having a child with cancer made her even more so!)  Just knowing that there was a place to go for truth was an enormous blessing to her– and to me!

http://www.childrensoncologygroup.org/

This is COG’s mission from their website:

The mission of the Children’s Oncology Group (COG) is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. To accomplish this mission, the Children’s Oncology Group:

  • designs and conducts clinical trials to define optimal therapy for children and adolescents with cancer. Currently, COG has more than 110 Phase I, II, and III active clinical trials which enroll approximately 5,000 patients annually, with > 70,000 patients in active follow up.
  • conducts laboratory research which will translate into more effective treatments with reduced short- and long-term side effects.
  • seeks to identify causes of childhood cancer with an ultimate goal of developing prevention strategies.
  • conducts research to improve quality of life and survivorship.
  • seeks international partnerships, when necessary, to fulfill its mission.

Guess who is in a clinical trial with follow-up care? Me.

There is a bumper sticker that I feel applies to our tax dollar priorities, and it says this:

“It will be a great day when cancer research, clinical trials, and treatment for children with cancer is fully funded– and prisoners need to hold a bake sale to pay for their medical care.”

Really???????????????????

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CureSearch Helping Children

 

 

 

Today, I want to tell you about CureSearch. The work that CureSearch has done in the past to support the Children’s Oncology Group  has very likely led to my life being saved. This is an amazing association of more than 5,000 experts in this field who are passionately dedicated to eradicating childhood cancer.

Quoted from CureSearch Website:

CureSearch for Children’s Cancer is dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. Together, we are committed to conquering childhood cancer through scientific discovery and compassionate care.

CureSearch Children’s Oncology Group is a network of more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.

http://curesearchwalk.org/htmlcontent.asp?cid=102631

CureSearch is organizing walks to raise money. Perhaps you would like to slip on those walking shoes, get some excellent exercise, and raise money to make a difference for children. At this moment, I am giving thanks for those who have supported CureSearch in the past. These people helped save my life. I intend to use this life I have been given to help save the lives of other children. Please join me and do what you can to help CureSearch keep doing their miraculous work!

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Lance Armstrong Helping Children with Cancer

The information in this link makes me very happy!

http://www.wapiyapiclassic.com/

On September 26, Lance Armstrong will ride to help Wapiyapi raise money for families affected by childhood cancer. I can imagine that Lance has his schedule packed with events– that he would take time to do this inspires me so much! I love that he realizes how important it is to help families who have children battling cancer. Not only does he recognize the truth, he actually does something about it. Yes, inspiring!

Once again, I thank Lance Armstrong for leading us in this global battle against cancer. I thank him for caring not only for adults fighting cancer, but for caring deeply about children battling cancer as well. I am joining Lance in this fight, and I invite you to join as well. Together…

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Oprah! Please Do a Show on Childhood Cancer!

http://www.youtube.com/watch?v=IgC6YKlrG9A

There is a newly created Facebook page with the title above that I would love to have all of you “like.” Even though this page was just created yesterday, there are already over 2,000 people who have joined in the request.

There is so much that people need to know about childhood cancer. I think that when children suffer, it is difficult for people to see and hear about. I understand. The important thing is, if no one looks, no one sees, no one will help and these children and families who are barely hanging on are alone in their nightmare. We cannot do this– we cannot let these children and families claw and struggle their way through the misery. Yes, it is horrible– but what we can do about this is beautiful.

It’s time for us to take off our “Fuzzy Glasses” and look at the realities of childhood cancer that exist before us. I pray that my book will do for these families and children exactly what I intended it to do… help. I want to thank this “sister” of a 2 year-old cancer patient for sharing this with me after she read Grace: A Child’s Intimate Journey Through Cancer and Recovery:

“My mom bought an early copy, and I’ve been up all night reading (and re-reading) it. It’s indescribable… it’s the first time I’ve ever read/heard of a story that was similar to that of my sister and family. Everything that you went through…. the fighting against this illness, the SURVIVING, even the depression that you went through after remission, was something that my family endured. Your detailing of treatment was what I needed, to hear in words what my baby sister was going through. She was too young to articulate her pain, and your book put into words what I saw everyday for two-and-a-half years. I thank God that she was too young to be depressed about her situation…but I wasn’t. I struggled for years, even after she was given a clean bill of health, with anxiety and depression and God knows what. Your book helped me realize that I wasn’t alone.

I just wanted to send you a message and let you know that you are really one of the most amazing people I’ve met. Seriously. Thank you for putting into beautiful words your experiences with cancer… your book is something that I’ll keep forever.”

There are so many ways we can reach out and help. What a blessing it is to be able to help!

 

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International Charter of Rights

Are you familiar with Matthew Zachary? How about “I’m Too Young for This?” I have to tell you that they are doing one amazing job of giving everything they have to help young people (15-40) with cancer. Now, they are working together with other organizations, like LIVESTRONG, to create an International Charter of Rights for young people with cancer. Young people face many different challenges when confronted with cancer than those who are older.

For one… it takes much longer for young people to get a diagnosis and many times, we are misdiagnosed. Very unfortunately, as most everyone knows, this means that their cancer spreads further. I can personally connect with this. It took nearly four months of going to the doctor every week (and having her look at my mom and I like we were out of our ever-loving minds!) and my mom had to stand her ground and demand tests before I finally received my diagnosis. Four months. Four months!

Imagine how much cancer can spread in four months!

In the meantime, I was slowly suffocating. I realize this is not my doctor’s fault.

And I am not the only one. I care about the others.

Here comes the easy part…  this will only take a moment to show your care.

Please sign the charter. You may save someone’s life. 

Thank you i2y Stupid Cancer, Teenage Cancer Trust, CanTeen, LIVESTRONG,  and SeventyK.!

I love my life!

 www.cancercharter.org

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Revealing the Identity of Someone #2

It seems like many moons have passed since I quizzed you on who you think might be Someone #1… and then I compounded the puzzle by adding Someone #2.

Don’t you love guessing games?

Here come the clues:

Someone #2 is a best-selling author, television host extraordinaire, founder of Cassidy’s Place, Cody’s House and Association to Benefit Children, and someone who cares deeply about children. I am deeply honored, and more grateful than my words can say, to tell you that I received a beautiful endorsement from Kathie Lee Gifford for Grace: A Child’s Intimate Journey Through Cancer and Recovery.

I imagine that Ms. Gifford has a schedule that keeps her flying swiftly about her life.  Then, someone like me comes along who requests her time and attention. Just knowing that she took the time to look at my book makes me so happy. It lets me know that there are people who truly care about changing lives for the better… even people who are very successful.

It seems to me that being successful means greater responsibility. Success is a blessing. We then have the responsibility to use what we have to help others. Yes, we need to be excellent stewards.  Life is short. We have so much we can give, and nothing feels better than giving.

Thank you Someone #2!  Miss Kathie Lee Gifford, you touch my heart with your gift to me and other cancer survivors. You motivate me to be generous, and you have given me a master lesson in stewardship.

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Relay yesterday, Johnny Tan Interview Tomorrow

Relay for Life this past weekend was awesome! Our team, Team Trilogy, raised over $17,000 for the American Cancer Society, and all of the Arroyo Grande teams together raised $93,000! It is remarkable to see what all of these dedicated people do– it is truly God’s work. The feeling of love that surrounds this whole event is something I wish for all of you to experience. Consider joining a team next year. You will truly make a difference and what you receive in your heart will be so much more than what you give from your time and your wallet. Trust me. I speak the truth.

Tomorrow morning, at 8am PST, I will be talking with Johnny Tan:

http://www.frommymamaskitchentalkradio.com/blog/2010/06/25/melinda-marchiano-author-of-%e2%80%9cgrace-a-child%e2%80%99s-intimate-journey-though-cancer-and-recovery-%e2%80%9d/

I would love to have you call in with questions at 347-327-9995. Life is always more fun and more rewarding when we do it together. Please join me!

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