A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘CURESearch’

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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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

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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

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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

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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

 

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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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Grace – First Biopsy Excerpt

     The time had come. I heard the squeaky wheels even before I saw a man with a stretcher pull up to my door. I was relieved and ready, but jittery and procrastinating. I went to the bathroom one more time, funny how we overlook the simple things like going to the restroom before surgery. Realizing how weird the patient ID tag around my wrist looked, I gave in and crawled under the starchy, white sheets on the stretcher. I had made a big step toward grasping the tough reality. Mom and Dad walked along side as I was wheeled up, down, here, there, and everywhere by Joe, a great guy who became my personal driver, if you will. I cracked a smile… it was kind of fun. But my self-pity got in the way. I felt so screwed up. Probably one of the weirdest things is having people stare at you as you roll by. They hesitantly peek, as though they’re expecting a mangled, undistinguishable thing to glide past. They sure did get a surprise when I went by, smiling and waving at them. Yeah, I milked that stretcher ride like Miss Pepperoni in the Parade of Pizza. We pulled up to a humongous door, it splitting as Joe pushed a Paul Bunyan size button mounted on the nearby wall. Once again, a whole new world was revealed. The planet OR. It must have dropped about 15 or 20 degrees when we entered the pre-op area, and I snuggled in deeper under my blankets, trying to shake off the uncomfortable chill. Lying down, I was unable to see the schedule board, but my mom later told me what it read. In big letters, I was written on it like the Catch of the Day, battered, fried, with a side of slaw and unlimited soda refills. Nah, just kidding.

     It said, “Melinda Marchiano– Anterior Mediastinal Mass.”

copyright by Melinda Marchiano, author of Grace

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Grace – Oral Contrast Excerpt

     With already one down, I chugged another nauseating bottle of oral contrast. For those of you who are not familiar with this delightful substance, I shall explain it to you. It comes in a clear, glass bottle, one that makes you believe that the milkman just pulled up in his horse and buggy with fresh, ice-cold milk. It reads, “Barium Sulfate,” a.k.a oral contrast. When you glance at the back, as if to read the “nutrition facts,” you are informed that it can interestingly be taken orally, intravenously, or rectally. That made me appreciate the fact that I was drinking it. But, ah, the taste. At first whiff, it emits a vanilla scent, and you are momentarily tricked into thinking it is a sweet, smooth milkshake from your favorite fast food place. But as soon as the foul liquid slides to the back of your mouth, the chalky, bitter taste creeps up and hits you like tax day. Your mouth becomes pasty and dry, along with the glamorous bloating, stomach upset, nausea, dizziness, and loss of appetite. To add a cherry on top of the sundae from hell, you must fast before your scan. I pictured my belly, it screaming for food, but only full of the sloshing, nightmare milkshake. So I had my moments of weakness and crabbiness, and I also directed several hateful comments toward the innocent glass bottle. But I eventually got it down without any choking, gagging, etc.

copyright by Melinda Marchiano, author of Grace

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