A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Teenage Author’

Hold Them Close

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

The incidence of invasive pediatric cancers is up to 29% in the past 20 years. Source: PAC2 & CureSearch

One week from tomorrow, I will have the honor and opportunity to sit in the Reading Chair to share excerpts from my book at the Central Coast Book and Author Festival. The event takes place from 10-4 at Mission Plaza in San Luis Obispo on Sunday, September 18th.  Will those of you who have read Grace please help me choose what you think would be the best passages, so that I can use my time best to raise awareness for childhood cancer? The people organizing this event had no idea that September, along with being Literacy Month, is Childhood Cancer Awareness Month as well. They do know now!

Maybe this for one… from Grace

“I heard myself groan and pried my eyes open to look at the clock. Believing it was morning, I was shocked to see it was only midnight. Ugh. I tried to adjust myself to get more comfortable, but I found my weakness overbearing. I didn’t want to move. Heck, I couldn’t move. I let out another moan. My stomach hurt so badly. The pain was nearly unbearable, like barbwire was trying to be churned up and digested in my belly. The cries and moans that escaped from my lips woke Mom, who slept on the fold-out bed nearby. As she turned to look at me, I blubbered and groaned in pain. I just couldn’t help myself—that was one of the worst moments of my life. Mom reached for my small hand that hung, motionless, over the side of the bed. The tears flowing down my cheeks settled on my pillow, making it wet and soggy. I didn’t believe where I was or how I felt. It was all too intense, too scary—too mind-blowing. Lying there, I wondered if other people besides Nurse Cyndi and Mom knew of my suffering. While I sobbed, groaned, and experienced total and complete helplessness, people were sitting on their couches watching Jay Leno with a tub of Häagen-Dazs. My mind tried to grasp this concept, but it became too exhausted and failed. Words only from hell will begin to suffice in describing how I felt that night. The only thing that gave me hope was the warm, soft touch of Mom’s hand.”              copyright Melinda Marchiano 

 As I was saying in my last post, it’s those mini-lights of love and hope that help get us through the most difficult times. If we are not careful—and grateful—we miss them all. No matter how bad things got, I had Mom’s warm hand. My message here to all of the families who feel they can do nothing to help the suffering of their beloved child who is fighting cancer is to let you know that the best thing in the world was to have someone just be with me, just love me, just hold me.

So hold them close. Know that your presence, warmth, and love are exactly what they need—even if they cannot express it.

Hold them very close.

Reefie Needs our Help

 An update for everyone who has fallen in love with Reefie:

Please continue your support for this amazingly strong and incredibly lovable boy!

http://www.gofundme.com/ReefieCarneson-Family

A MIRACLE IN THE MAKING
by Charmeon FortheCure Carneson on Friday, September 9, 2011 at 2:29am

“OMW Dont know where to start. Ryan and Lydia are blown away. Such positivity, such incredible hope. Thank you Lord and everyone for getting him to this incredible hospital. Dr. Shah wants Reef back as soon as Novemberr as an inpatient for a week and then for an outpatient for 1 year. God knows how we are going to raise that amount of money in so short a space of time. Dr. Craig is soooo positive, says they have had worse contractions of hands and those kids are now using their hands perfectly. OPERATING WOULD BE A HUGE MISTAKE. They will have him eating, drinking talking and using his hands in a year. Dr. Shah says Cyclosporin is known to affect the hearing adversely and Reef may need to be fitted with hearing aids. The have a new drug on the market which apparently after his ONE WEEK of inpatient treatment will clear up his GVHD. GVHD WILL NOT BURN ITSELF OUT as we have been told, the contractures would only get worse and Reef would land up in a wheelchair. They are sorry that he was not seen to earlier. They have not seen a child with such bad GVHD before because they NEVER let it get this bad before treating it. REEF WILL HAVE TO HAVE ANOTHER PORT INSERTED. They also recommend that he see a pulonologist (horrified at the piece of port that is still in his chest) an opthalmologist, an orthopaedic surgeon – oh so may specialists. THEY WERE AWESOME – everything Reef had done he got a little toy, at one stage he dropped his toy, a nurse swooped down grabbed it, sterilised it and gave it back to him. GET THIS HE WILL BE ENROLLED IN SCHOOL there in December as they encourage that he mix with other children.
HE MUST NOT HAVE HIS BABY INNOCULATIONS NOW as we have been advised,. OH Lord I could ramble on here for hours – So much positivity at 2.30 am had my head reeling. Ryan will need a work permit in order to stay in the country that long. I AM IN TEARS HERE AND JUST CANT STOP – THANK YOU TO EVERYONE FOR GIVING REEF THIS CHANCE TO BE A NORMAL HEALTHY LITTLE BOY.”

San Antonio Loves Their Children

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

When Mom and I started out on our Hope Tour, we were excited about all of the unknowns we would be surprised with as we travel. First thing this morning, we walked from our San Antonio hotel to Christus Santa Rosa Children’s Hospital. On our way, we were delighted with a great surprise. Walking in front of us was a man with earphones that had to be playing, “Tell The World That Jesus Lives,” because he was singing it at the top of his lungs so everyone could hear. He was punching his arm in the air and loving life.

Yes. This man blessed our day with his faith; he sang with his whole heart, and it made no difference that it was off key!

The blessings continued as we met the Child Life Specialist, Jennifer, and saw the wonderful hospital. They have an amazing library with a lot of books for the kids and they even have computers in the library so families can stay in touch with loved ones by email. Another favorite part of the hospital was “The Cow.”  All of their Hem/Onc patients placed their handprints on The Cow. I don’t think the impact of that will ever go away. Even their emergency room was decorated with bright, lively colors and decorations that would make any sick child feel better in some way. I am so happy to have had the opportunity to see what San Antonio has done for their children. They must love them a lot! And Jennifer, I am very, very happy to meet you!

Jennifer and the Hem/Onc Cow with Precious Handprints

Before we took off for Houston, we walked to The Alamo. (Told you I didn’t think we could leave San Antonio without going!) Some people say that it’s just some old buildings, but there is so much more if you stop to feel and not just look. What I will remember is the room where the women and children survived as The Alamo fell. I looked into that room, and it wasn’t just an old room in an old building. Real people who lived and loved and died left a big impression on me today.

I made a couple of friends at the Alamo

 

To top off our day today, we met a very special man and his wife. Many of you know this lovable man from the videos he so carefully, kindly, and compassionately puts together for children fighting cancer. We met John Gavin and his wife, Linda! I will share with you that John is even more lovable in person, and Linda is just the same. What a beautiful gift John has given to many of us; I am grateful for his heart for children.

Mr. John Gavin and his wife Linda with hearts bigger than the size of Texas!

Tomorrow morning, we are off to Texas Children’s Hospital and MD Anderson…

 

 

HugoHopeMobile will be buzzing around Houston tomorrow!

Greetings From Arizona

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

This morning, just as the roosters began crowing, Mom and I hopped into our Jeep Patriot rental car (who we have already fondly named “Hugo”) and began driving eastward. The windows are decorated with my non-award-winning artwork– childhood cancer awareness and HOPE signs. The back is packed to the brim for our three week trip, and I am so excited about the adventures and the possibilities that lie ahead. 

Each day brings new responses from the children’s hospitals we have contacted; although they have never heard of someone doing this, they have been wonderfully receptive and kind. Tomorrow morning, before we leave Arizona, we will see the brand new children’s hospital here in Phoenix. I won’t be able to visit with any of the children here because they are moving to the new hospital. I want to thank Teri from Phoenix Children’s Hospital for trying her very best to make it happen! Their staff is delighted about the move, and I have discovered that even the hotel desk clerk speaks of the new hospital with pride. 

Adventure is fun. Adventure with a huge purpose is thrilling. 

I know there are many, many children across the U.S. who would love to be healthy enough for adventure. I am grateful– so grateful– to be healthy enough to travel to see the children. I pray with all of my heart that my visits will somehow help to give them hope and strength. I pray this Tour will bring more people to help the children, more money for research, and that it will bring what we truly need right now…

A Cure!

Nurse Cyndi Kissing my Dome

Fight Like A Girl Post This Month is Poetry

 

 

 

 

 

http://www.thefightlikeagirlclub.com/2011/06/one-who-should-not/

 

 

 

 

Coming to a Town Near You… I HOPE!

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

Good morning, friends. It’s nice to have my brothers home from college for the summer. Even though they’re busy with their work schedules, and one is also extremely busy with his play schedule, I love seeing their faces and grabbing them with a big hug as I pass them in the hall. Maybe I’m thinking this morning of this because, in a few days, Mom and I will be leaving home for three weeks. Neither of us has ever been gone from home for that long. We need to get in lots of hugs before our departure! This of course includes Larry!

Since I last posted our BullHorn Itinerary, our trip has altered—or fine-tuned as Mom says. As we communicate with people and hospitals, she is “refining” so our trip can be the best it can be. Is there someone you know in a hospital in one of these places we will be visiting? This Hope Tour wants to meet them. Do you live in one of these places? Would you like me to share with your group? I there any way I can help bring childhood cancer awareness to your community when I am there? Please let me know!

melinda@melindamarchiano.com

6/17 Phoenix, AZ

6/18 El Paso, TX

6/19 San Antonio, TX

6/20-6/21 Houston, TX

6/22 – 6/25 New Orleans, LA

6/26 Atlanta, GA

6/27 Chapel Hill, NC

6/28 – 6/29 Philadelphia, PA

6/30 – 7/2 Boston, MA

7/3 Niagra Falls, NY

7/4 Indianapolis, IN

7/5 Leawood, Kansas

7/6 Denver, CO

7/7 Salt Lake City, UT

7/8 Sacramento, CA

I have to tell you, it is so exciting to hear from you! Joanne, Khadi, Deliece, John & John (That is two Johns, not someone named John & John!) … thank you! Each one of these people is doing great things for children with cancer, and I am honored and blessed to have the chance to thank them in person. Something very wonderful happens when people with the same passion connect. Yes… it’s like 4th of July fireworks! Crackle, crackle, BOOM!

It’s time to get the signs ready for the car windows.

46/7   

Thank you, Michelle, for sharing your beautiful design and most of all for your commitment to fighting childhood cancer. Your design will be shining on our car from Sea to Shining Sea.

I’mBringin’BunchesOfSpiralNotebooks&Pens

Hmmm…. Wonderin’ what I will have to write about?

Hope 46/7

The Quiet Place of My Heart

 

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

This is finals week.  My last final was today! Wow. Wow,wow,wow,wow!

So now, dance performances are over until August and school is out tomorrow.  Sigh…

Guess what I cannot wait to do?

Meet you!!!

I am leaving a week from tomorrow, and now that I have a moment to take in what is about to happen in my life, I feel like I need to go to the quiet place of my heart to seek Guidance.  How can I, little Melinda, leave this world a better place? How does this intersect with my great desire to help children with cancer? I pray that every step of our journey will help kids with cancer. I hope the  children I meet will share their lives with me in their own beautiful ways. I hope while I am gone, you might think about doing something like the following… making lemonade:)

 

 

One lovely way to help raise money for childhood cancer research this summer is to make some lemonade and have some fun.

Lemonade Stands near you

http://www.alexslemonade.org/search/alex_search

My friends at Pablove on Twitter asked me to vote for this boy… I love him!

http://kidswhogive.com/vote-on-entries/entry/?submissionId=57

Finally, one more linky-dinky today…  This is why we need research for less toxic treatments. The treatment is deadly for too many children… one is too many.

http://news.yahoo.com/s/hsn/20110525/hl_hsn/childhoodcancertherapiestiedtogastrointestinalissues

Okay… I found one more to share. I want to thank KSBY and Carina Corral.  You always show you care about ending childhood cancer, and I am grateful.  I am really grateful.

http://www.ksby.com/news/teenaged-cancer-survivor-and-published-author-adds-more-to-her-list-of-accomplishments/

Mom and I have tweaked the end of our trip a bit… I will update the schedule soon.  I really don’t own a BullHorn and I probably wouldn’t use it if I had it.  Well, hmmm… there is a situation for just about everything… and I am quite passionate!

I will love to meet you along the way!

I am going to go back now to that quiet place of my heart.

God whispers from the quiet place of my heart.

 

 

Grace Recieves A Silver Medal Ippy Award– Finalist in Benjamin Franklin Best First Book Nonfiction

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

It’s two days after Mother’s Day, and today, I am writing about my mom.

As I begin to type, I search for the words to begin what I want to say–and instead of words–tears come rushing like rainfall down my face.  I love her.  I love her so much.

My mom listens to me.  She believes what I say. Without this gift she has given me, my cancer would not have been discovered until much, much later.  I would have suffocated.  But, my mom believed me when others did not.

And then… when my heart needed to give back in order to heal, guess who supported me every single step of the way? 

Then, when I began writing as a way of healing, she looked forward to hearing what I had written.  She believed it was something that could help others.  She took all of those spiral notebooks with scribbles and she typed the 90,000 words I had written into book form.  Have you ever typed 90,000 words?

It would have been easier to submit my story to a big publishing house at this point… but my mom’s Mama Bear instinct wouldn’t allow her to let someone else have the rights to my work.  She says it belongs to me as long as I am a minor! 

The next step has been an unbelievable amount of work for her, working to establish our publishing company, Happy Quail. Not many mothers and daughters have the opportunity to work together for a cause that both are passionate about.  By establishing Happy Quail, we have been free to make decisions about publishing my book that will benefit children with cancer.  Yes, the Quail is VERY Happy when we can do anything to help toward a cure!  

My mom has worked so hard that Grace: A Child’s Intimate Journey Through Cancer and Recovery has been honored with the following Independent Publisher Awards:

From IBPA website:

“The IBPA Benjamin Franklin Awards, which includes fifty-six categories recognizing excellence in both editorial and design, is regarded as one of the highest national honors in small and independent publishing. Winners will be announced at IBPA’s Publishing University, just prior to BookExpo America.”

2011 Benjamin Franklin Awards: The Bill Fisher Award for Best First Book (Nonfiction)

http://www.ibpa-online.org/pubresources/benfrank2011_finalist.aspx

Ippy Awards Silver Medalist Juv-Teen Young Adult Nonfiction #24

http://www.independentpublisher.com/article.php?page=1442

The very, very best thing about these awards is that they will help children with cancer. Awareness is the first step toward giving hearts stepping up to help.

Mom, your giving heart will make a huge difference—beginning right now—in the lives of not only children with cancer, but others whose light has gone out for a bit.

Your love for me is lighting the world. 

Coming out from school when my first books arrived!






Who Says a Watched Pot Never Boils?

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

Yesterday, I returned to Santa Barbara to the place where I received my life-saving treatment for cancer. Now, three years after my treatment has ended, I am reminded again how Cottage Hospital and the people who work there will always bring my heart to its utmost openness. I loved seeing Nurse Lisa and Nurse Cyndi (yes, the very famous Blue Chemo Fairy!) My visit wasn’t for tests or scans; it was to help raise money for Children’s Miracle Network Hospitals during their yearly fundraising event. Cottage Hospital is a Children’s Miracle Network Hospital. 

It means a lot to me to return each year for their fundraising event. I had the opportunity to encourage radio listeners to support Cottage Hospital and then do the same in a TV interview. Three years ago, I sat with my pink beanie covering my completely bald head while Paula Lopez asked me questions for a Children’s Miracle Network vignette. Yesterday, I had the pleasure of speaking again with Paula… only this time, with a full head of hair and the ability to breathe!

Three years ago…

http://www.sbch.org/Portals/1/Skins/CottageHealth/html/marchiano.html

 When Mom and I first walked into the cafeteria, who should we see?

A therapy dog all dressed up like a nurse!

Guess who else we saw? (For all who have read Grace!)

Dr. Pickert!  Guess what else?  He gets nicer and nicer every time I see him!

There will never be a time when I visit Cottage Hospital that I don’t gasp with trembling gratitude. The reality of my illness, the memory of me in that hospital bed… me rolling down the hall to surgery… me receiving treatment that saved my life… make me bow my head with humility.

Thank you, to everyone at Cottage Hospital.

Most people have heard of the concept “Survivor’s Guilt.” I find that my survivorship has had the opposite effect on me.

I think of Breanna, Max, Noah, Jayden, Nick and all the children whose lives I need to honor with my tireless devotion to what their lives mean. I will never forget them. This means fighting for a cure every day.

Life is one time. Living a “Lukewarm” life won’t do for me.

Turning up the heat to High…

Hi Life!  Full Blast Ahead!

Who says a watched pot never boils?!

One way to be the White Swan:)


Colored Hands for Brodie

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

Welcome to the month of May.  Is it just me, or is time moving at warp-speed?  I love May!  May is springtime and flowers and dance performances.

Mr. Boot has made his exit from my life. Bye Mr. Boot!

Heeeeeeeeeeellooooooo dance studio!!!!!!!!!!!!!!!

Are you feeling “spring-y” and wanting some fun? Want to help a young boy with cancer at the same time?  I love this idea from Sherry, who wants to help a four year-old boy who is battling a brain tumor. The boy’s name is Brodie, and Brodie likes to draw on himself. (Is it just me, or does this totally endear him?!) If you enjoy drawing on yourself—or even if you do not—this is a prime opportunity to put a smile in the heart of a boy who is in the midst of his battle with cancer. What do you say we get out the markers, write a message on our hands to Brodie, take photos of our brilliant artwork and email it to gobrodie@me.com ?

While you are wracking your brain for that creative saying (or dull- it doesn’t matter!) to write on your hands, I will pass on inspirational news, in case you have not yet heard:

St. Baldrick’s had their biggest fundraising year yet!

http://www.stbaldricks.org/about-us/headlines/view/headline/title/History+Made:+Largest+Fundraising+Year+Yet/id/1432

I hope this serves as motivation for everyone fighting childhood cancer, both individuals and organizations. The only way we will win the war against childhood cancer is through cooperation.  The more we communicate and share information, the fewer “dark, sinister alleys” there are for cancer to hide out in. The way my mom envisions it is like a game she used to play when she was little called Red Rover. Neighborhood kids would choose two teams. The teams would link arms (not just hold hands, but link arms because the bond was stronger) and then call over someone from the other team to try to run through to break the bond. If the person couldn’t break through, then they had to join the other team. Let’s use the Linking Arms/Red Rover concept to destroy childhood cancer.

Cancer will end up on a team all by itself—a Loser!

Please link, link, link.  Let’s make it so that cancer will have nowhere to run to and nowhere to hide. It’s sometimes easy to become discouraged… especially when we hear news of another child lost. This time, the child is Nick.  I ask you for prayers for his family. 

I ask you to wash away every bit of discouragement and replace it with a fire of hope.

When you send your photo to Brodie, remember that your action is so much more than what your mind measures it to be. When you give your time or your resources to fight childhood cancer, please remember it is so much more than your one act.

You are a crucial element of the united bond that will make change.

Makes life worth living, doesn’t it?

Kick Butt Brodie

www.melindamarchiano.com

Facebook/Grace: A Child’s Intimate Journey Through Cancer Recovery

LoveBug, Legislation and Beaver Dams

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

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

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