A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Dr. Dan’

Open Letter to All Who Have Ever Helped Children with Cancer

Thank you.

Thank you from the depths of my soul. 

Without you and your beautiful hearts to help children with cancer, without your sacrifice, the celebratory events of this past Mother’s Day Sunday would never have happened. Without you, our precious daughter would have been taken from this world 11 years ago. Without you, I wouldn’t be sitting here with tears of joy falling freely from my eyes while my huge smile happily hurts my cheeks.

Without you, this day would have only been in my dreams of what could have been. Because of you, this day became reality. And of all days, this day was on Mother’s Day. As parents, we have hopes and dreams for our children, and most of us hope that one day, our child will fall in love and marry the person who has captured their heart. 

On Mother’s Day, I had the enormous blessing of seeing our daughter marry the love of her life. The horror and the terror of her childhood cancer treatment could not help but be present in my mind and my heart. Children who have been stolen by cancer and the parents who grieve their loss were present as well. My heart spread all the way across one spectrum to the other. 

M and V wedding photo Holy Trinity Veil

As I placed my head on my pillow that amazing night, I scrolled through a few photos I had taken. The emotions I held captive all day suddenly burst through the dam, and the floodgates opened. The stimulus? A photo of Melinda’s pure joy as she dances her first dance with her new husband. In the background, a man looks on with a look on his face that made me wonder what the thought behind that look was. I quickly recognized that his expression says, “I get to see the Happy Ending!” The man? Melinda’s pediatric oncologist, Dr. Dan. 

Melinda and V 1st dance wedding

With a most humble gratitude, I thank each of you: doctors, nurses, child life specialists, clinicians, technicians, researchers, and the advocates I am honored to work with every day. 

With renewed commitment, I promise to do everything I can to help stop childhood cancer… so all children… and all families… can receive their happy ending, too. 

I love you dearly. I owe this joy in my heart to each of you. Thank you!

 

 

 

 

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It Takes Two to Speak The Truth

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

“It takes two to speak the truth—one to speak and the other to hear.”

~Henry David Thoreau

September is National Childhood Cancer Awareness Month. This past weekend, I had the opportunity to participate in a project that is bringing together the entire childhood cancer community– a project I believe will change the future of childhood cancer. I remember my oncologist, Dr. Dan, explaining to me how the cure rates for childhood cancer have improved remarkably, because of the sharing of information through Children’s Oncology Group. I have since learned how there are multiple childhood cancer foundations working hard to raise money for pediatric cancer research, many of them started by families whose own child has fought cancer. By taking a stand alongside one another, we can have a larger impact, and make a greater impact faster. By joining together, we can learn and share The Truth.

The project, The Truth 365, seeks to create “One Voice” for all. In creating One Voice, we can “speak the truth,” creating the opportunity for individuals, private corporations, and for our elected representatives to “hear.” With all of my heart, I have hope that our Voice will not bounce off of numb ears and numb hearts. I want each one to accept a bit of responsibility when they “hear.”

The Truth is, childhood cancer research is overlooked and underfunded. The Truth is, childhood cancer researchers must spend many of their working hours applying for grants. I don’t want brilliant pediatric cancer researchers spending their precious time writing grant applications; I want them in the lab, finding causes and cures. Sadly, in the world of pediatric cancer research, this is The Truth. If funding for research is the greatest obstacle standing in the way of ending the suffering of thousands of children, what are we waiting for?

The Truth is, funding for pediatric cancer research is an extreme, high priority for us as individuals, as a country, and as a world. Let’s stand together for action now. Time is of the essence. Children are dying… seven each day in the United States alone.

This is a pledge to our children of today and a promise to children of the future. We are looking into the face of greatness here– greatness in the form of ending human suffering.

That is, our Baby Humans.

                                                                        Photo/Image by Mike Gillette

 

 

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Chemo Talk Across from the Chemo Hut

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

From Grace:

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 My entire family was crunched into the small space, sitting on random chairs and stools. Dr. Dan pulled a rickety chair into the circle, his expression instantly setting a somewhat grim tone and feeling in the cramped room. He explained that it was The Chemo Talk, something all of “his kids” must hear. In other words, it was my right as a patient to know of all the possible side effects. With a heavy heart, and a soul of lead, I listened to him recite a long list of potential complications. They were as simple as a headache to as deadly as a heart attack. I was speechless. Looking at my parents and brothers, their somber faces made an eerie sensation tickle my body. They had never looked so serious in all my life, and it was extremely frightening. I stared down at my PICC line. I wanted to go home. I didn’t want to do this. The chemotherapy, my lifesaver, was just as scary as my disease. I had a choice, but I didn’t have a choice. I could either slowly suffocate to death or take on the possibly deadly effects of chemo and hopefully kill the Hodgkin lymphoma. I felt stuck, helpless, and hopeless. I thought that if the mass didn’t kill me, then the chemo would. I was so confused, thinking I had to be the closest to death that I had ever come in order to be saved. It all didn’t make sense to me. The feeling of uncertainty in the air was driving me nuts. I couldn’t help but think, “What am I getting myself into? Is this really necessary? Is this the only way?” And even, “Would I really die if I didn’t do chemo? Would it really kill me?” The answer was, “Yes.” I finally realized, with my pee ready and my newly arrived chemo set, not to mention the 13 x 9 x 8 centimeter mass sitting in my chest, I had to do it. There was no turning back. Peering at Dr. Dan, my mom, and my dad, I felt a sort of thankful anger and frustration for them. They were saving me, but by torturing me and practically killing me. Uh, thanks?

copyright: Melinda Marchiano

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

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If we could stop cancer without cutting, poisoning, or burning…

When people hear the words, “You have cancer,” I wonder which fear is bigger, fear of cancer or  fear of  treatment. 

Arms Wide Open Childhood Cancer Foundation

I love this foundation for their work for less toxic treatments!

This video is titled, “Cut, Poison, Burn”

http://www.youtube.com/watch?v=SCmr2OGmMDQ&feature=youtube_gdata_player

Ronald McDonald House in Phoenix

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Go Ahead… Jump In!

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

Today is a gratitude day… as grateful as every day has been since my outstanding medical team helped rid my body of cancer. My three-year scans just came back “All Clear.” For Dr. Dan, Nurse Pam, Nanci, Robyn, Zippy, Jaynie, and everyone else at Cottage Hospital, I give you my love and thanks! I apologize for not being a “normal” patient and thank you for dealing so “gracefully” with my Melinda-ness!

Rather than let “Survivor’s Guilt” overtake me to the point where I cannot function to help others, I have found it necessary to tweak that thought and those feelings into action that will help. The hardest part of all for me is knowing of children who die each day from childhood cancer– knowing the suffering they have faced and the suffering of their families. There is no “Half-Way” point of caring about childhood cancer patients… either you jump right in and become submersed, or you stand on the sidelines with little understanding of what is truly going on.

Fair warning: Jumping in will give your heart the ride of its life.

Truth: Jumping in will bless your life with truly remarkable heroes!

Children's Healthcare of Atlanta making Children Happy and Health

I just read this news from PAC2 about Andrew McDonough B+ Foundation ! Does it get any better than this? Dancing to raise money to fight childhood cancer??????????? Northwestern University– thank you for jumping in! Happy Dance Time!

I will rewind life a bit for my next posts so that I can begin sharing more about the Hope Tour after we left New Orleans. 

Children's Healthcare of Atlanta

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

I am very excited about my first bookstore book signing tomorrow at Barnes & Noble on State Street in Santa Barbara.

http://store-locator.barnesandnoble.com/event/3065003

One of the things I am most looking forward to is seeing my “Santa Barbara friends”!!!!!!!!!!!!!!!!!! My mom talked with Jaynie, my Child Life Specialist, this past week, and she is going to come– and I think she might even bring Rowan!

Who is Rowan?

Rowan is a 122 pound Leonberger and incredibly amazing therapy dog:) I can’t begin to tell you how much healing that Rowan brought to me as the chemo dripped into me.

I love Rowan!

It will be so much fun to see everyone. I hear that dearly loved Dr. Dan will be coming by with his family and guess who else said he will come by?

My mentor, who, without his splendid information, I would not be signing anything tomorrow– or seeing any of the people I love.

Thanks Matt.

Also, without my amazing, loved bunches and bunches, medical staff, there would not only be no book, there would be no Melinda:)

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