A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for August, 2011

What in the World? Simple.

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

I think about what in the world I am supposed to be doing in this world.

The answer comes to me as plain and simple:

I am here to give glory and honor to God by loving and blessing others.

In this age where life is becoming more and more complex, I suggest we simplify… beginning with, “God is Love,” and “Love is God.”

Our world would have no reason to fight for “Religious Reasons.” There would be no such thing as “believing in God or not believing in God,” because we all have love inside us.

Simple.

God is love.

1 John 4:8

Whoever does not love does not know God, because God is love.

 

So, Miss Melinda Philosopher of the Day, what are you going to do with your love?

I will begin by getting on my knees to give thanks for all the love inside me and for every single person who has given me love. I promise to not waste it; I promise to give it away.

Khadi and I made a friend outside Boston Children's Hospital!

 

I see September on the horizon. My “supposed to be doing” is obvious.

I need to tell everyone that September is Childhood Cancer Awareness Month and get every corporation, business, organization and individual “On Board” for raising money for a cure for pediatric cancer.

Simple.

 

Have you signed this petition?

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

Braden’s Hope Foundation asks us to keep Harley Combs in our thoughts and prayers.

 

 

 

 

 

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Are We Giving It? A Tribute to Ethan Jostad

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

Ethan Taylor Jostad

Sadness.

I feel great sadness today for the world’s loss of this boy. With this link, I want to share Ethan’s brilliant, joyful spirit.

http://www.youtube.com/watch?v=3OcJZ6hk2EQ&NR=1

His made-up song tells a tale that only a child with cancer can tell. It breaks my heart to know that this is what children with cancer rejoice over. It breaks my heart to know that Ethan’s family’s hearts are broken. How they must miss Ethan!

Truth.

I love laughing and joking and being silly. I love finding humor where there is no humor to be found. There is not one speck of humor to be found in the suffering or death of children. We all need to locate the softest part of our hearts and open that part to give everything we have to stop childhood cancer.

*** Childhood cancer is the #1 cause of death by disease in children under 20.

*** When children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults. Many children are originally misdiagnosed, which leads to greater suffering and many times, death.

*** One in five children diagnosed with cancer will die. In some forms of childhood cancer, one in five will live.

Today, I encourage every healthy person reading this to consider giving blood. Blood donors save lives. Blood donors save cancer children’s lives. I know because I am one of them. Some generous donor saved my life during cancer treatment… not once, but twice.

We all have something to give. That something might be circulating through your veins right now. With most sincere gratitude, thank you to everyone who gives this treasured gift of life!

I will say it again, “We All Have Something to Give.”

The important question is, “Are We Giving It?”

With love for Ethan Jostad

Remembering Ethan…

 http://www.youtube.com/watch?v=KXVWNRATaiw&feature=player_embedded#at=163

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A Single Flame…

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

What would we ever do without friendships? Sometimes– if we are very fortunate, we find people to enjoy life-long friendships with. My mom has this kind of a friend in Gregg Kaufman. They met in junior high school and they have remained friends forever. I have been the truly appreciative recipient of his friendship through all of my years, including his loving support throughout my cancer battle. A card would show up in our mailbox, or Gregg would show up at our door with fluffy socks and a cozy blanket. He always had words of encouragement, and he showed his care in every way and every chance he would get.

Gregg asked me if I would come to speak to his Rotary Club this past week and to speak last night at the Morro Bay Relay for Life. It felt great to be able to do something for Gregg for a change! The Luminaria Ceremony is my very favorite part of Relay. I thought about the emotional impact I feel each time I attend Relay and wrote a poem to share last night at the Luminaria Ceremony. 

 A Single Flame …

beyond its rippling edges is a vast space no eye can see.

It is here the worst of fears have been confronted,

and tears have been shed in the light of joy, and the dark of sadness.

It is here patience has been shoved again and again,

all while trust clings tightly to its feeble legs.

It is here faith has crumbled before being built anew, and here that existence

has finally peeked out through the crystal clear window of perspective.

It is here that the greatest of battles were fought,

although most will never know of them …

It is here that an army rose up,

coming together for one purpose-one soul.

It is here that loneliness pierced abounding support,

and here that roads twisted, turned, began, and sadly, ended.

That one, single flame is an intricate and delicate story … if you listen quietly you can hear it speak of its life-paths chosen and un-chosen.

When multiplied, the sheer quantity of softly glowing flames

can overwhelm the mind and sink the heart.

There is an innocence in their glow …yet ever-present is an incredible strength,

a quiet strength, often an unknown strength.

To stare at your flame is to feel your life sweep over you in an instant …

emotions flood the heart,

but none can dilute the immense amount of gratitude already there

To stare at a flame that contains not only a story, but a spirit is to be made numb … No words …

And then, a little miracle takes place inside …

every emotion blends and mixes while inability to feel melts away.

And in an instant hope arrives through hopelessness …

and through hope, purpose …purpose for every, single flame

Copyright Melinda Marchiano August 6, 2011

Aquarium at the Entrance to Duke Children's Hospital

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Has Anybody Seen my Warp Drive Button?

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

Welcome to Friday, August 5th!

 The very first thing I want to share with you is this video of 10-year-old Lily Anderson singing our National Anthem on 7/28/11.

Lily’s spectacular performance was part of “Rally Night” a special event for kids fighting cancer. Lily has been fighting cancer since she was diagnosed with Stage 4 Neuroblastoma Cancer in 2009.

http://mlb.mlb.com/video/play.jsp?content_id=17409281&topic_id&c_id=mlb&tcid=fb_share&v=3

Lily, you make me smile the kind of smile that begins on the inside and it grows until it escapes on the outside! I look forward to following your future events!

Lily Anderson

Lily Anderson

One more bit of news to share—and this is great BIG news if you like Mini Coopers!

Children’s Cancer Association [CCANews@Joyrx.org] is having a drawing where someone will win a 2011 Mini Cooper S Hardtop! If you would like to help them raise money and have a chance at driving away in a Mini at the same time, click on this link for more information:

 https://app.etapestry.com/hosted/ChildrensCancerAssociation/OnlineRaffle.html

I am finding it extremely difficult to believe that school begins in less than two weeks… phew! What happens if there are ten billion things I need to do before it begins? I can see you smiling and nodding your heads.

“Get going Melinda! Get going!!!”

Please excuse me while I locate my Warp Drive Button…

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You’re Not Supposed to Know That Yet

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

After visiting Children’s Healthcare of Atlanta, Hugo HopeMobile headed northward through Georgia and South Carolina until we arrived at our destination for that evening, Chapel Hill, North Carolina.  Mom and I were both struck by the large amount of road construction through South Carolina and especially North Carolina. People have told me how beautiful North Carolina is. One thing we were delighted to discover is how much they care about making their highways beautiful; there were colorful flowers growing everywhere along the interstate.

North Carolina flowers in bloom!

Duke University and Duke Children’s Hospital were first on our schedule for early the following day. We loved the area, the enormous trees shading the streets and buildings, and the homes with wrap-around porches that spoke, “Come sit in my rocking chair and eat this delicious apple pie Grandma just took out of the oven!”

Our stop at Duke Children’s was quick. They are one of the hospitals with strict rules about having no visitors under 18, so we stopped long enough to give them a book for their resource library before we fired up Hugo once again. We traveled through Virginia and Washington D.C., where we could see the Jefferson Memorial, the Washington Memorial, lots of domes, and a military helicopter that nearly skimmed Hugo’s roof as we gawked at the sights.

I believe this is the first Gold Medal Award Driving Day of the Hope Tour for Mom. We got off the interstate in Baltimore after our Washington D. C. adventures to take a look at Johns Hopkins. Without going into any gory details, I would not recommend driving through Baltimore. Our journey ended this day as we pulled into our hotel in Philadelphia quite late at night. I do remember the two of us plopping down on our beds like floppy fish!

Hope Tour Story to be continued…

Now, to the present day…

I turned to Mom this morning and stated, “Life is hard.”

She looked at me lovingly and replied, “You’re not supposed to know that yet.”

It’s true, my life is, and always will be, different. Knowing what I am “not supposed to know yet” makes me that way. Since I cannot change my “differentness,” I feel a great responsibility to use it wisely. My intent and my great desire are to transform it into hope.

I will admit that it is hard to do, especially when I see great suffering and great loss.

Today, I heard news of the loss of one of the most inspiring cancer warriors I have been blessed to learn about… Kendall. My love goes to Kendall’s family and to Benji, the greatest buddy Kendall could have ever spent time with. I know that everyone on the staff at Children’s Hospital of New Orleans must be very, very sad—they loved Kendall so.

http://obits.nola.com/obituaries/nola/obituary.aspx?n=kendall-oliver-springman&pid=152841778#.Tjguqyt0Aq6.facebook

If you would like to take action to help, this is one way you may save a child’s life. I know of a little girl named Lexi who desperately needs a transplant. One swab of your cheek will tell you if you have the opportunity of a lifetime to save a child’s life.

joinmarrow.org

http://www.marrow.org/JOIN/Join_Now/join_now.html and then input the referral code: FriendsofLexi

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