childhood cancer | Melinda Marchiano

A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

Hairless or With a Head Full of Hair

I have been unable to focus on much else this week, but my upcoming shave for St. Baldrick’s/Pediatric Cancer Research tomorrow at Oakland Children’s Hospital. Friends are asking if I am nervous, and all I feel is excitement! I can see faces cringing back at me in horror, as they ask themselves (yes, faces ask themselves questions all the time,) how can this terribly deranged girl feel such a thing?

Any family who has been touched by childhood cancer knows why I am excited; they know exactly why I have chosen — this time– to go bald. When I read of another child who passed today, from childhood cancer, I fought back tears. Then, I decided I would let them go. I decided I would let that feeling of pain and torture and loss and helplessness and hopelessness penetrate my soul.

Now, I ask you to do the same. Imagine our most precious, most delightful humans on Earth suffering and dying from cancer.

I ask you now, “Would you not do the same to help them?”

Childhood cancer will continue its terror unless many, many of us do something. The “something” I can do tomorrow… through the help of many thoughtful and generous friends… is raise money for research that will help strangle the enemy called cancer.

Oh yes, cancer is my enemy. I will happily let those hairs fall to the floor tomorrow. As each individual hair falls to the floor, each one carries with it a prayer for the end of childhood cancer and a commitment to do all I can–hairless or with a head full of hair.

http://www.stbaldricks.org/participants/mypage/579474/2013/

I just hope I don’t scare anyone… especially Debbie!

From Grace:

Mom and I were on our way home in the car, and we slid to a stop at the giant blue mailbox in front of our post office. Rolling down my window, I stretched out like a giraffe reaching for a leafy dinner. Plop!

The envelopes fell in and disappeared. Just then, a lady who works at the post
office, who we have known for years, came strolling out with a large container
to collect the pile of mail.

My first thought was, “Look! It’s Debbie!”

But then I recalled that my appearance was slightly different from when I’d seen her last.

“Oh crap! I’m bald!” I cried, fumbling for my beanie.

She neared the box—everything seemed like it was National Geographic slow. Not wanting to explain my whole story in my exhausted state, I scrambled, found my hat, and jammed it in an awkward way atop my head. Mom found an opening in the traffic, and we zoomed away. I felt like Mrs. James Bond.

Scream laughter erupted from Mom and me. That was a close one. There were times when we cried together, there were times when we laughed together, and there were times when we laughed and cried together. This was one of those moments.

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Ben Franklin’s Doo and Cindy Lou Who

I remember talking with my mom about the impending loss of my hair when I was beginning cancer treatments. We both wondered how it would happen. I mean, would it all fall out at once? Would I wake up one morning with a huge “nest” on my pillow? Would it fall out in clumps here and there? As we imagined different circumstances, we would end up laughing until our bellies hurt. Never did we imagine what actually happened… and never, ever did we imagine it would be so funny that we would laugh about it for years to come!

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

Dad nearly collapsed , and his eyeballs bugged out from his head. I guess that was the first time he ever really noticed the progression, or shall I say regression, of my hair loss. What occurred was quite fascinating. I had expected for hair to fall out everywhere, leaving patches of hair and no hair until all was gone. But instead, my one-eighth-inch part grew wider and wider until a stripe of a little over an inch created almost a “freeway” on my head. Hmm . . . Route Baldo . . . kinda has a ring to it. Anyway, each attempt to brush my hair resulted in more lanes being added, my own personal “tax dollars” at work. I needed some cones to set out.

A bit further on in Grace:

The mirror was a visual aid in grasping the reality that I had just about as much hair as a naked mole rat. My male-pattern baldness was most prominent where my part once stood. From there on out, the forest became slightly thicker. The near crop circle on my head was disturbing, yet hilarious. The phases went from top to bottom, and looking into the future, I saw myself with almost a “curtain” of hair along the side of my head, but nothing on top. I laughed so hard that it hurt.

“Mom,” I shouted, still in a slur of giggles, “I’m gonna look like Ben Franklin!”

We laughed until our bellies hurt, our eyes were watering, and we were nearly
peeing in our pants. And then . . . we laughed some more.

As my crop circle continued widening to the extent of covering my entire head, I would gather the few strands into a tiny pony-tail on top of my head. My mom called me Cindy Lou Who… “who was not more than two!”

After this photo was taken, I returned home to the razor…

From Grace:

With Mom on one side and Nicholas on the other, we crawled down the hallway, as if preparing for launch. My hand grasped the metal hair buzzer on our bathroom counter. I was ready. With a “click,” I fired it up . . . all eyes watched my steady hand. As though using my own personal, mini-lawn mower, I executed a perfectly straight line from the center of my forehead to the crown of my head.

I paused. It was an epic moment, and I knew it . . . everyone did. The now free hair floated elegantly down to the waiting floor as I began to form a parallel row. Feeling the cool air on my bare head, I giggled. It was something virtually no one experiences, let alone a thirteen-year-old girl.

I followed the contour of my head. I had never really known what shape it was. The tiny, delicate hairs slid down the back of my shirt, making me itchy. Carefully, I formed a giant circle on the top of my head, trying hard to make it as even as possible. The circle grew larger, just as a crop circle mysteriously forms in cornfields at 3:00 a.m.

Suddenly, I stopped and stared at the stranger reflected back at me. I had purposely ceased midway to, truly, be the one I resembled. I was Ben Franklin. With only straggly hair running around the majority of my head’s circumference, I depicted the founding father perfectly! Laughter erupted, and I found a chuckle that squeezed shock, excitement, embarrassment, and joy right out of me.

I am thinking I should Bring Ben Back– even for a few moments on my shave day– this Saturday, March 30, at Oakland Children’s Hospital for St. Baldrick’s Foundation.

http://www.stbaldricks.org/participants/mypage/579474/2

Kids need fun. Adults need fun.

Cancer is no fun.

Let’s stop cancer together.

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One Happy Bald Head

With less than a week to go until my Shave Day for St. Baldrick‘s and pediatric cancer research, I want to share my feelings when I discovered I was going to be bald… the first time…

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

This is what Dr. Dan spoke of. This is also the first time he used the word “chemotherapy,” his New Jersey accent giving it a unique sound. My heart, a hair-raising roller coaster, plummeted down and did a double loop before finally ascending to the top again. Suddenly, that “medicine” that “melted the mass” revealed its true identity. I was totally and completely taken aback. Me. Chemo. It was unreal, like a fairy tale . . . actually a nightmare.

I looked to my dad, his eyes seemed watery. Instantly, I could see it hit way too close to home. His dad, my grandpa, had received chemotherapy for a very rare blood disorder, but sadly, he passed away that June after a long, grueling battle. My dad’s face read, “Oh no, not my daughter, not her too.”

It was quiet . . . too quiet for my comfort, and way too long for my comfort.

Breaking the silence, I asked, “Will I lose my hair?”
“Yes,” Dr. Dan confirmed.

Whoa. What a concept. I pictured myself resembling ET more than my own family. The positive, comedic side of me could not help but break through the layer of seriousness that coated me.

“Well,” I chimed, “I won’t have to put up my hair in a bun.”

That brought a much-needed laugh to the dismal room, with Dr. Dan’s deep chuckle making me laugh uncontrollably. Once our momentary silliness ceased, we got back down to business. I had one more inquiry that was haunting my mind.

“Will I still be able to dance?” I questioned, my eyes donning a soul-twisting, puppy dog look.

The answer somewhat surprised me.

“For the most part, yes,” he replied. “We have a young man who played football through treatment.”

That’s all I wanted to know. I was set . . . content, a whole and complete person.

Imagining myself bald as a newborn, dancing in class, I wondered how the other girls would react. I pictured shocked faces the first time I returned to dance, no one being able to concentrate with me in the room.

This second time, my bald head will laugh when it feels the wind tickling its barrenness. This time, my bald head will know it shines like a dome for the kids. My bald head will smile, knowing it gave up its crop for the purpose of ending the suffering of children with cancer. I am going to have one heck of a happy bald head!

Thank you from my heart to each of you who has supported my efforts with your donations, your encouragement, and your kindness.

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Beyond the Cure, Beyond those Dreams

The National Children’s Cancer Society

“We serve as a financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer. Since our inception, we’ve provided more than $57 million in direct financial assistance to more than 33,000 children nationwide, and we work closely with over 300 hospitals and pediatric oncology units throughout the US.”

There is no way I can count the times in these past months of my freshman year at Pepperdine that I look around, take in where I am, and then gasp– realizing how blessed I am. For anyone who has visited the campus, you know there are many long, steep staircases for students to navigate from one place to another– as Pepperdine is built into the Malibu hillside that looks out over the Pacific Ocean. There was a time, not so long ago, that I dreamed of being strong enough to just walk across my room. This not-so-distant memory creates a strong context for the world I now see around me. Being healthy enough to notice what is around me, being healthy enough to take part in the world around me, and being healthy enough to use my life to maybe help someone else’s is “Beyond” my wildest dreams of those days I was flattened on my bed.

Now, outside my dorm room, there is a view that… well… the vast, blue, expansive Pacific! I love the students, dancers, professors, and the atmosphere here! I love learning here. Before I began attending Pepperdine, I never even imagined a college where I would be able to combine my curiosity to learn Bio-Chemistry, my passionate desire to continue to DANCE, and my deep need to grow in my faith. I have all of that; I am so happy here I could scream… or cry… or both!

Without scholarships, my education at Pepperdine would be out of my reach. I am thankful to Pepperdine University, and also to one other organization that has helped me tremendously. The organization I am speaking of is the National Children’s Cancer Society and their Beyond the Cure Scholarship Program. I am very, very thankful to be a recipient of a 2013-2014 Beyond the Cure Scholarship.

http://www.beyondthecure.org/scholarships-2012-2013

I want to let my fellow student/cancer survivors know that the 2013-2014 Beyond the Cure Scholarship Program is now accepting applications. If you are younger than 25 and have been accepted to an accredited educational institution, and you are a childhood cancer survivor (diagnosed before age 18,) then I encourage you to apply.

Application

http://www.thenccs.org/Document.Doc?&id=219

Renewal Application

http://www.thenccs.org/Document.Doc?&id=220

Beyond the Cure Scholarship Information

http://www.beyondthecure.org/scholarships

“The Beyond the Cure Scholarship Program awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. A total of $125,000 was awarded to 38 childhood cancer survivors for the 2012-2013 academic year.”

Application deadline is April 1, 2013

I am sending this off with great love and respect for my fellow survivors of childhood cancer. May you receive all the help and support that you need to reach for your wildest dreams…

… and don’t be afraid to reach even further… “Beyond” those dreams!

Go Waves!

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What A Gift to the World

This is International Childhood Cancer Day, a day we can learn to expand our focus on childhood cancer to include not just children in our own country, but throughout the world. For me, the problems of late diagnoses, toxic treatments, late effects, shortages of medicines, and a dire lack of development of new, more effective—less invasive—treatments keep me focused on all we need to do as a country. We have so much to do. This should not be discouraging, but encouraging. Be encouraged there is a growing army of people who know The Truth about childhood cancer. Be encouraged by becoming an individual who does their part. One way to do your part is to let our elected officials know that childhood cancer research is a top priority.

St. Baldrick’s Foundation has made it easy—like, really, really easy to contact your representatives.

Go ahead…. it takes just a few minutes, and you will know you did something to help!

http://www.capwiz.com/stbaldricks/issues/alert/?alertid=62399601

Did you do it yet???

Please don’t read on until you do!

If you would like to learn more about World Child Cancer:

http://www.worldchildcancer.org/who-we-are/our-latest-news/

One way that we will be able to better treat children with cancer in the future is to gather data on childhood cancer survivors. Alex’s Lemonade Stand is doing just this. If you are a survivor, or your child is, you have an opportunity to provide vital information that will help researchers develop better treatments for kids who come along after us.

Please take the time to help Alex’s Lemonade Stand in this very important mission and pass this link on to others who might be willing to help.

http://www.alexslemonade.org/treatment-journal

When we do discover those new treatments for more cures…

what a gift we will have to give the world!

What we really need, and really want, is an end to this…

“( ) passed away on January 25, 2011 from a glioblastoma multiforme brain tumor. He fought cancer for 3 years and 7 months. He was known for his compassion and kindness. He was once asked, “What would be the greatest super power that a person could have?” Ben’s response was simple, but powerful – “Forgiveness.””

“Even though he is nearing the end of his earthly life, he hangs on for the love of his family. Please keep them in your prayers and thoughts. No one parent should be in this position. No child should have to fight to live and especially not for 5 years, only for modern medicine to have still failed him. We Need A Cure! Too many families, too many children- It doesn’t make sense”

“Surgeon just came out for a break ( ) is doing great. Her tumors were a lot worse than they thought but praise God she has been able to remove the most difficult ones so far. The vascular surgeon is in there now reconstructing her iliac artery. She will finish removing the rest of the tumors and then reconstruct her ureters. Then she will apply the hot chemo wash to her entire abdominal cavity.”

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I Want to Make All of Them Full

Definition of “Full”

Containing or holding as much or as many as possible; having no empty space

This past Friday night, I had the honor of dancing at Wish Night for Make-A-Wish Tri-Counties. I had the honor, and the great pleasure, of dancing to Becca Solodon’s original song, “Through the Fire.” Becca was diagnosed with cancer when she was sixteen, and she lost one of her legs to the beast. I have known Becca for a few years, through the Teddy Bear Cancer Foundation where she now works. The most accurate way I have of telling you who Becca is…. is to tell you her photo belongs next to the word “SWEET” in every dictionary. She has dedicated her life to making a difference for kids with cancer. She has an unsurpassed special beauty in her voice and in the music she writes and performs.

Topping off the musical talent of the evening was Wish “Kid” Jessica McKenzie, who has studied voice at UC Berkeley. Her gorgeous vocal performance had everyone on their feet clapping when she was finished.

I was overjoyed to be there! The whole evening, I kept envisioning all of the kids I have met who are fighting for their lives. Looking at the people in the room, I gave thanks for their hearts. Some of the people there were Make-A-Wish volunteers, like John MacFadyen, who was the fabulous MC for the evening.

Some were Make-A-Wish employees, like Shanna Wasson-Taylor, CEO of Make-A-Wish Tri-Counties, who was honored for seventeen years of service. I must also mention Linda McKenzie, my most incredible Wish Planner! The others were those who had paid to come, people who gave more money for auction items, and people who raised their hands to personally choose and fund a portion of a child’s wish.

After several wishes were funded, there were no more hands raised, and John asked one more time. We all looked at the bar graph showing there were some children whose wishes were not fully funded– and there were some that were not funded at all.

There was a man who raised his hand…

“I want to make all of them full, ” he offered.

Poor John, I think he nearly fell off the stage. He was speechless. The entire room of people stood and applauded this man’s generosity. It was an incredible moment!

Full… “no empty space”

This generous man left “no empty space” in the hearts of the children. He made them all full. With this kind act, he left no empty space in his own heart either.

… I can “see” the kids everyone helped that evening. I “see” the moms and dads and siblings who will be blessed.

Hope and Joy and Love are beautiful things to share; this is what Make-A-Wish does as their specialty!

Gramma & Poppy, always supportive, were at Wish Night!

http://www.youtube.com/watch?v=2SZ0hJpwZMw

Childhood Cancer survivor Becca Solodon rehearses her original song, “Through the Fire” before Wish Night for Make-A-Wish Tri-Counties. It was an honor to be there… to dance to Becca’s beautiful music, and to help make more wishes come true.

Written

on February 12, 2013

Video

St. Baldrick’s Poetry

Beauty, Compassion, Hope, Change
Help me re-define Beauty
Turn Compassion into Action
Show the Power of Hope
Convey the Meaning of Sacrifice for Change

St Baldrick's Flyer

http://www.stbaldricks.org/participants/mypage/579474

Written

on February 8, 2013

World Cancer Day… “Clouds”… and Freedom

As human beings, we are endowed with freedom of choice, and we cannot shuffle off our responsibility upon the shoulders of God or nature. We must shoulder it ourselves. It is our responsibility.

~Arnold J. Toynbee

My emotions drift from one place to another on this day we call World Cancer Day. My first emotion is “Goodness Gracious” (honestly, words a lot stronger than that!) There is a killer loose and wild on our Earth who strikes everywhere at once—one who leaves a trail of destruction like no other disease here on the globe we call home. Until we trap, capture, and disable the enemy named cancer, we cannot truly be free. The People Shells we embody on Earth will forever be threatened, and perhaps even worse, our loved ones’ bodies will be threatened.

Adults do have some degree of control over preventing certain types of cancer, but for children, there is no known cause. In my case, I ate vegetables grown organically from our garden from the time I was born, which makes me skeptical of those who are quick to suggest that the cause for childhood cancer is diet. My hunches are that the causes are more tied to environmental and genetic factors, but hunches are just that, hunches.

Research, research, research.

I will say it again, research.

People often-times create New Year’s Resolutions; I would like to suggest we create a resolution and renew it yearly on World Cancer Day. If each of us finds even one thing we can do, one thing we can sacrifice, to bring “peace” to the People Shells of our world, imagine.

… imagine our world without cancer.

Zach Sobeich is fighting a cancer that has no more treatment options. This beautiful song, “Clouds,” is his love-gift to the world. Let’s share it widely– with great hope Zach’s music will inspire our world to be a safer place where we can live without fear.

https://www.youtube.com/watch?feature=player_embedded&v=sDC97j6lfyc

Please sacrifice, give to cancer research, support patients in their fight, and believe our efforts will lead to the extinction of cancer.

Freedom!

Bye Bye World Cancer Day…

Thank you Zach, for your inspiration and beauty in our world.

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Jack Andraka, Hope for Early Diagnosis

“A man of genius makes no mistakes; his errors are volitional and are the portals of discovery.”

~James Joyce

Finding cancer in early stages is a key factor to a patient’s survival. Jack Andraka, who happens to be fifteen years old, appears to have just changed the course of the future of cancer detection. Jack found out he won the Gordon E. Moore Award at Intel ISEF for developing a sensor that has tested 100% correct in diagnosing pancreatic cancer. I had to listen to this next part several times because I really wanted to believe what I was hearing…

Jack’s sensor can diagnose before cancer becomes invasive!

This video of Jack describing his work– and of the announcement of his win– is worth every bit of your time to watch!

http://www.youtube.com/watch?v=pmVzs3-GNBc&feature=endscreen&NR=1

Jack’s enthusiasm and joy seriously made me cry when I saw this!

Jack… Jack… you give me HOPE!

For those who advocate for children with cancer, this is breathtaking news. I realize that childhood cancers are different from adult cancers, but this discovery must also mean a whole new world of research possibilities for detecting childhood cancers at early stages. This is news that renews my hope that children with cancer will be diagnosed sooner. That terrifying statistic, “80% of children who are diagnosed with cancer are diagnosed at late stages, compared with 20% in adults,” will become one of the past.

Without a doubt, earlier diagnoses will mean less suffering and more lives saved.

Wow Jack!

I am so stinkin’ proud of you!!! Thank you.

I am going to have to do a Happy Dance with Willie the Wave!

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Orbs of Beauty

“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?

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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A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

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Definition of “Full”

Containing or holding as much or as many as possible; having no empty space

Full… “no empty space”

This generous man left “no empty space” in the hearts of the children. He made them all full. With this kind act, he left no empty space in his own heart either.

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Jack’s sensor can diagnose before cancer becomes invasive!

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