Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘CURE childhood cancer’

Going Bald Again…This Time for The Kids

GraceBrushing my teeth in a reflective daze, I stare at my shampoo bottle…I won’t miss it.  Nor will I miss my brush… bobby pins- none of them.  I imagine what it must be like to feel the tickle of the breeze on nothing but delicate fuzz.  Towel in hand, I think about how many strokes it would take to dry my head.  Staring into the mirror, I try to envision others’ questioning glances.  Oh that’s right- I knew… I know.  Yet recollection is a mysterious thing.   While I can vividly recall my chemo-ridden body reaching for the razor five years ago, the chaotic emotions of the time have instead been replaced with gratitude, excitement- hope.

            Who am I to have a choice?  They don’t.  I didn’t… once upon a time.  My own trials through cancer have been glossed over with the faces of kids around the country- of those whose stories I heard while sitting intently at their bedside.  Amazement continues to knock on my soul. 

There is no choice but to fight-  no choice but to bitterly resist the chemo bag hanging beside you, yet surrender to it…  place your absolute trust and hope in it.  What if… what if you had so much certainty in that little, seemingly harmless, bag that you could let go… trust… know.  That you could give in and not face fear of slipping… slipping…. leaving. 

This is my desire, and one that the St. Baldrick’s Foundation works towards daily.  The number once private funder of childhood cancer research, they hold events worldwide each year.  St. Baldrick’s raised $33 million last year; this money provides grants for researchers who are working tirelessly to find less toxic treatments and cures for those children who face, and will face the same beast I did.  As my heart overflows with appreciation for my own life, yet sadness that others still fight the battle I know all too well, I find that hope is the path that must be taken. 

I have decided to join in St. Baldrick’s mission and participate in an event that is taking place on March 30th, 2013 at Oakland Children’s Hospital.  The deal?  No more shampoo… no more bobby pins, brushes… or anything of that sort.  In an effort to be in solidarity with cancer kids everywhere, to raise awareness, and to raise money to fund research grants, I will be shaving my head…. again.

If I refuse…I lose.  It is as simple as that.  What is hair, anyway?  Something that keeps your head warm- something that gets tied back or covered up on bad days.  It can be straightened, gelled, curled, and colored.  However, many people don’t realize what else it can do- create awareness, provide greater funds for research, better treatments, and hope for each and every child fighting. 

I am just one person, but if everyone allowed that thought to build a wall in front of them, no change would ever happen… no amazing things would take place.  And so I choose to do what I can…give what I can in this life that can, at times, tell you to give up- to not give because “it is not enough.” I encourage you to do the same.  We never lose by giving… only by passing an opportunity to give our own unique contribution.

For information about St. Baldrick’s and their mission, please visit: http://www.stbaldricks.org

To support my individual participation, my team, and children with cancer everywhere, please visit:

http://www.stbaldricks.org/participants/melinda

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

“God Gives Children With Cancer Something Extra”

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

Continuing my thoughts from yesterday’s post about the need for celebrities to Step up to the Plate to become dedicated advocates to help raise money for childhood cancer research, I want to acknowledge some people who have come up to bat. One person I want to thank is Jeff Gordon, for his compassion and dedication to establish Jeff Gordon’s Children’s Hospital . Another person who has given from his heart to help children with cancer is Jeff Foxworthy. Mr. Foxworthy has been an advocate for children with cancer for many years. He has helped CUREChildhood Cancer, and he has also helped me.

It was nearly a year ago when I began sending out requests for testimonials/endorsements for my book. I wish I could communicate all that I learned from this process. It was highly educational; I learned a lot about the human spirit. Right away, I heard back from a kind woman named Maggie, who told me that she forwarded my request to Mr. Foxworthy and he responded swiftly and with compassion. This told me he is one of the special people with a loving heart for children. I also learned has given from his heart to help Duke University Children’s Hospital. The words he chose for his endorsement told me he has spent time with childhood cancer warriors; he is not just posing for photos with bald children to boost his likeability. (Do people really do this?????)

This is what he wrote for me, and what he wrote to help other children with cancer:

“I have often said God gives children with cancer something extra. They are remarkable and inspiring people to be around. Melinda tells her story with such honesty and openness that you can’t help but be touched and encouraged. This is sure to be a blessing to all who read it!”

He included a note, saying that I could edit it or “throw it in the trash can!”

I just love Jeff Foxworthy!

Others celebrities who stopped their lives to respond kindly included Ray Romano and Kathie Lee Gifford… I send my deep gratitude to each of them for their contributions.

The responses to my request were as varied as the people who inhabit our Earth. Some people responded with kindness, even when they chose not to help. One response that came from a famous young singer (who I will not name at this time,) I will admit, was a bit disturbing… it ruffled my mom’s feathers.

This was the response from her publicist: “I don’t think childhood cancer applies to _______.”

Now, for my mom, a no answer was just fine. But this statement, for my mom and I imagine for many other parents, was just the same as stating, “I don’t care about children with cancer.” Does childhood cancer have to “apply” to us before we realize that it is the responsibility of every living, breathing adult to care for the children in this world? How can it be that there has not been one new therapy approved to fight childhood cancers in the past twenty years, yet our technological advances have grown exponentially?

This is entirely unacceptable.

Children who “make it” through their tortuous treatments are losing their battle after the battle. The treatments are so toxic that the side effects when treatment ends can be brutally painful and life-threatening.

This is why I keep writing… everyone needs to hear… everyone needs to help.

My friend, Breanna, who I have been asking you to pray for, left this Earth for heaven last night. She made it through her treatments, but effects from treatment caused complications that were too much. Please pray for Breanna’s family, and please do everything you can that will help find a cure.

Breanna (on the right) and her friend Sammie

No Money– Just a Few Minutes!

My friends, today I have another “free” opportunity to show how much you care about improving the lives of children with cancer.

http://www.thepetitionsite.com/1/CureChildhoodCancer/

Also, have you ever wondered how much you really do know about childhood cancer? Have you ever wondered how much you don’t know?  There is a short survey to help you:

 (http://www.surveymonkey.com/s/XQGLLQS

There may be some surprises for you. I will admit there was a big surprise for me. I was shocked to learn what a  pitifully tiny amount that the American Cancer Society contributes for childhood cancer. Hmmmmm…. I may have to work on them to create a “Childhood Branch.” I mean, kids are “Americans” too!

Does it appear to you that I am on a mission? Yes, I am certainly on a mission! There is no way I can sit back and do nothing… I truly love the children. They need us!

Surprise from Jeff Foxworthy;Response from Dr. Maya Angelou

When I wasn’t dancing this past weekend, I was going over the first page proofs for my book.  Linda, the lovely woman who edited my book with her “editorial feather duster,” did an outstanding job.  I appreciate the fact that she really knows her stuff, and at the same time she allows me to be me… meaning I need to make up phrases and words that don’t necessarily exist in anyone else’s speech, or even in a dictionary.  I love that Linda let me be me in my writing, but at the same time, she corrects all of those nasty little nit-picky things (like nit-picky!)  Seriously, I have never loved purple marks on my papers like I do with Linda’s marks on my first page proofs for Grace: A Child’s Intimate Journey Through Cancer and Recovery.

An email response arrived in my inbox today from an assistant for Dr. Maya Angelou.  Yes, I sent an endorsement request to Dr. Angelou sometime in early March. Rather than feeling disappointed that she is too busy to look at my book, I feel grateful for the kind reply from her assistant.  They could have rolled their eyes at my request, and blasted me back with a, “YOU?!! YOU want a WHAT???!!!!!”  But kindness and civility prevailed throughout their polite decline of my request. 

And now… what a smile I still have upon my face! Yes, I know it is a smile I usually reserve for when I am filled with pure joy from dancing, but a pure joy surprise appeared in my mailbox today.  I opened an autographed photo that was signed to me along with a beautiful note that was written on the coolest of cool stationery  The note has his name pressed into it  and cowboy boots on either side of the paper.  And the note and photo were signed… Jeff Foxworthy.  Have you checked out his PSA for CURE Childhood Cancer?

http://www.curechildhoodcancer.org/default.asp?contentID=69

Thanks Jeff… for showing you truly care about children fighting cancer.  My gratitude runs deep and wide.

Jeff Foxworthy, Dr. Wharam, and Cure Childhood Cancer

What an interesting project this book endorsement requesting is!  Being a teenager, and a first-time author, I had no idea that after you write a book, you need to “raise it.”  I am very fortunate to have someone who  has helped me tread through the murky waters of book publication, and I will never forget him telling me, “Now that you have published Grace, you need to raise her!”  What the heck does that mean?  Well, I am finding out.  I was just so deliriously happy at this time to be holding my words in book form, I didn’t really care if anyone ever read it!   It is such a funny process… it’s like when you put some corn kernels in a pot, turn it on, and then things start to crackle and pop. 

Crackle and Pop… I am ready for the popping sounds to reach ear-popping decibals.

Grace – Cough Medicine Excerpt

I wish that my mind could be permanently wiped clean of the memories of my cough medicine. I want so much to be able to see that little, evil, orange bottle in the cabinet and not involuntarily shiver and cringe. Imagine the most rancid, disgusting substance on planet earth and multiply it by 1,000. Wah-lah! My cough medicine. I can recall myself scrunched up in rollie-pollie position while I desperately downed Hall’s and warm tea…nothing worked.

copyright by Melinda Marchiano, author of Grace

Grace – Chest x-ray Excerpt

 

     As I stood there, splattered against the target board like a swatted fly, I prayed for results. I prayed for death. Not of me, but it. After I had changed back into my own clothes in the tiny, curtain-closed room, I emerged.

     “Can we see them?” I heard Mom ask the technician.

     “Sure,” he replied, tilting the computer screen slightly toward us.

     Woh, it was my chest. White areas illustrated bones, tissues, and organs… I saw a lot of it. My invasive blob was quite apparent and I silently snarled at it; it didn’t answer back. It was so weird staring at myself, but being myself all at the same moment. It was confusing to my mind, this being the first personal x-ray it had seen.

     “Wow, that used to be all white there,” Mom observed, pointing to a dark, black area.

     I held my breath, I was overjoyed.

copyright by Melinda Marchiano, author of Grace

Grace – Discovery Excerpt

     “I think we finally found it,” my mom told me as she shut off the car.  

     “I think that we might have found the culprit… I just have a feeling.”

     I stared at one old, worn out paint line in the parking lot. It was white and rough, stopping at one point before continuing on. Strange the things we remember. I could literally recreate the entire experience… not that I would want to or anything.

     The last thing my mom told me as I stumbled out of the car was, “Whatever we find, we’re going to get it.”

     Why are doctor’s office clocks so loud? They seem to “death tick,” each second a loud clunk that makes your heart leap. The room was really cold, and I had goose bumps and the chills. I examined the little, clear jar of cotton balls for a few minutes, and then, I heard the door opening. Every hair on my body stood on end. I had a weird tickle in my stomach that I blamed on breakfast. Dr. Gonzalez wore her usual, glowing grin, but a look in her eyes displayed great concern. She greeted us and perched atop her stool. All was quiet for just a moment, and then she began.

     “Well, we found something on your CT.”

     She hesitated, and a millisecond of relief came over me, but it was just that, one teeny-tiny ounce of joy before my entire world melted around me.

copyright by Melinda Marchiano, author of Grace

Grace – Hair Excerpt

     Shortly after I arrived home, I received a visit from my Gramma, Grandpa, Great-Aunt Ruth, and Great-Uncle Wen. I could see a strange look on their faces as they rounded the sharp corner into the room. I almost felt embarrassed for being in the state that I was and thought that a “You Get What You See” sign would be appropriate. Watching them come closer, I pictured one of those cheesy soap operas. You know, one where the sick person lies in the bed, practically dead, while people come to see them one last time. It all seemed like a soap opera, depressing, and way too dramatic for my comedic flair. I was afraid that I would not be treated like “Melinda” anymore, that things would be different between myself and those who I knew. But I realized quickly that it was the same people I love dearly, and that they had come to share their love with me.

     My Great-Uncle Wen and I have an ongoing joke where I tell him, “I like your hair!” I gently pat him on the head, while a deep, low chuckle emerges from his smiling lips.

     He then turns to me, repeats the same hair-frizzing motion, and says, “I like your hair!”  We end up laughing together, each rubbing each other’s heads.

      So this time, when he announced the famous line, I joked, “Enjoy it while you can!”  

     Laughs erupted from everyone in the room. It made me happy.

copyright by Melinda Marchiano, author of Grace

 

Grace – First Chemo Day Excerpt

“Are we done?” I mumbled indistinguishably.

I opened my eyes as much as I could, the towel over my head obstructing my view. I saw faint, blue blobs, nurses masked by an un-clearable blur. I tried to say a few other things to them, but my mouth was not capable of producing words. It was as if the cable connecting my brain and mouth had been severed, and it became frustrating. I then realized the intense pain in my left arm which radiated all the way up to my shoulder. I saw a strange contraption hooked on at the bend in my elbow, and when someone adjusted it, I grimaced in pain. I wondered where my parents were.  We were done, right? Right?

Suddenly, I heard Dr. Dan’s voice as he reentered. Several nurses flipped me on my left side and began to scrub my lower back, practically my rear end. It hit me. It was not over…I had awakened right in the middle of it. Panicking, I shut my eyes, thinking that I could make myself return to unconsciousness. But when I slammed my eyelids closed, I witnessed something just as scary, I was hallucinating. Just about every possible color flew around in a whirl, making me the dizziest I have ever been. It was a dizziness that, if it was possible to die from dizziness, would have killed me. Also, for an instant, I saw the image of my mom, and I remember crying out to her in my head.

Thinking she was all too real, I screamed, “Mom! Mom! Come back! No, I need you!”

Her loving face was sucked into the spiral of flying colors like a dust mite up into a vacuum. My heart couldn’t take it, I opened my eyes once again, but terror gripped me. It was either the nightmare of all nightmares, or I was a spectator of my own surgery. I thought it was the end, I was almost positive that this was what it felt like to die. I was going insane, and nobody had a clue. Just when I thought I had nothing left, I remembered something. It was a Bible verse that my mom had taught me. She had said it to herself as she was in labor and gave birth to my brothers and I. Not knowing where else to turn, I turned to God.
“I can do all things through Christ who strengthens me,” I whispered internally. “I can do all things through Christ who strengthens me,” I repeated.

And that was it. I knew that no matter how painful or frightening it got, I could do it. I was in awe by how it spoke to me. I told myself that if we can do anything with the Lord’s help, then we should not be afraid of anything. Pain is just pain, and God went through so much more of it for us than I can even imagine. God can do this, it is easy for him, and he lives within me. Therefore, I can do this, no, I will do this. Just as the Spirit of the Lord empowered my soul, the big, long needle pierced my pelvis. The pain was so intense that I let out a bloody yet silent cry inside my head. It was like nothing I had ever experienced…or hope to experience again. And as Dr. Dan harvested my marrow, I talked to myself.

“The Lord is good. He is here with me,” I remember saying.

I pictured Jesus, my savior, taking all of the suffering from me, bearing it all himself. I knew that He would do this for me, and just the thought of it seemed to numb some of the discomfort. I am not sure if I finally returned to sleep or passed out from the pain but, after that, I have no recollection of anything. Maybe even the Lord, with his heavenly, pure anesthesia, heard my prayers.

copyright by Melinda Marchiano, author of Grace

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