A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Grace: A Child’s Intimate Journey Through Cancer and Recovery’

Suffering is Optional

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

Diffuse Intrinsic Pontine Glioma. DIPG. Today, there is no known cure for DIPG, and only 1 percent of DIPG patients survive more than five years past their diagnosis.

Dr. Gordon Li said, “Thirty years of numerous clinical trials have all failed.”

School-aged children most often get this type of cancer—a tumor that is impossible to surgically remove because it grows tangled in the brain stem.  Chemotherapy does not shrink the tumor and radiation brings only temporary remission.  Researchers at the Stanford University School of Medicine and Lucile Packard Children’s Hospital are starting a phase-1 clinical trial of a vaccine-based treatment and will be enrolling fifteen newly diagnosed patients. This trial is funded by a 1.5 million grant from the National Institutes of Health. Can you imagine a vaccine that will cause the body to produce immune cells that recognize and destroy tumor cells?

Now, this just makes me want to do research even more!

http://www.physorg.com/wire-news/74421171/study-of-vaccine-for-childrens-brain-cancer-seeks-participants.html

­­There are twelve major types of childhood cancer. We need– absolutely need– to find help for children diagnosed with DIPG, and all forms of cancer.  I hope the scientists at Stanford make a huge discovery!

Like many of you, I have been thinking of Ethan.

…  I think of how he lived through his pain. I think of how he loved. I think of how he chose to be Sunshine to everyone whose life he touched.

I read this quote from “Unknown.” It reminds me of Ethan, Kendall, Max, Natalie, Braden, Kate, Jade, Anais, and all children who choose to fight cancer with hearts spilling over with love.

“It’s just pain.”

“Pain is inevitable. Suffering is optional.” ~Unknown  

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Ethan

 

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

Tonight, I want to thank the Jostad family for allowing all of us to be a part of Ethan’s life, even though many of us live far away. I thought about Ethan today, and I thought of his family as they celebrated Ethan’s life.

Below are five anonymous quotes from Ethan’s Facebook page tonight:

***What a beautiful difference one single life has made!!!!!!!!!!

***You will never be forgotten sweet Ethan!!! Much love to you Kim and Chris, thank you for    sharing Ethan’s Celebration of Life with us. You are beautiful, strong, and loving people. My thoughts and prayers are with you daily… and I join you in the fight against childhood cancer!!!

***Thank you all that attended Ethan’s service both in person and Live online. Your presence was appreciated. Over 440 supporters tuned into the live service. Thank you all so very much! RIP Ethan Jostad. We love you!

***Ethan’s celebration was inspiring and touching. I am here for you and will be honored to continue to fight in Ethan’s name for a cure for cancer. Bless you Kim, Chris, Tanned, Ella and all family members.

***Thank you for allowing us all to be a part of your celebration. Ethan still amazes me! I will be thinking of you and keeping you in my heart as the night grows quiet.

 

“As the night grows quiet,” I too will be thinking of Ethan and his family.

 

 Ethan Jostad

 

 

 

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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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Children’s Hospital of Atlanta, Aflac, and Carl Edwards

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

The wild storm held off just long enough for us to reach our hotel in Atlanta before it busted loose with strong winds and buckets of rain. The drive from New Orleans seemed to go quickly as we drove over Lake Pontchartrain; it was enormous and beautiful in the early morning sun. The hurricane damage to the trees is still very evident in areas around the lake. Before we knew it, we were already through Mississippi and on the tree-lined interstate driving through Alabama. One very odd thing we noticed about Alabama was there was not one bird in sight. They must have been hiding in the trees!

Georgia was a surprise. I did not expect the beautiful streets that had tree branches laden with leaves covering them. It felt cozy and comfortable.

We met Jessica from Children’s Healthcare of Atlanta early in the morning. We discovered that parking around children’s hospitals can be challenging, but Jessica very kindly met us out in front to offer us up-front parking. We discovered that kindness is just one of Jessica’s qualities as she proceeded to give us a terrific, informative tour of their children’s hospital. Aflac is a huge support to CHOA… if you would like to see how they help: http://www.choa.org/childrens-hospital-services/cancer-and-blood-disorders/about-us/how-aflac-supports-us

With Jessica at Children's Healthcare of Atlanta

My brother, Nicholas, is a huge racing fan. He is a senior who is studying mechanical engineering. He is on the Hornet Racing Team at Sacramento State where he helps to build and design their race car that they bring to competition each year. I have become educated about racing through Nicholas, and one of the NASCAR drivers who has become my favorite is also a huge supporter of CHOA. Carl Edwards has devoted his time and money to help. For those of you who are not familiar with NASCAR, Carl does a back-flip each time he wins a race. After one win, he took out the Beads of Courage necklace that a cancer patient had given him and placed it around his neck. There is a photo of this in one of the art rooms for children, along with the trophy he won from this race.

Thank you again, Jessica, for the tour of your amazing children’s hospital. Thank you to Aflac; may you be an inspiration to many other corporations!

Carl Edwards, you were already my favorite because of your warm spirit. I guess that now you must be my Ultra-Favorite!

Carl Edwards Photo at Children's Hospital of Atlanta

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Go Ahead… Jump In!

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

Today is a gratitude day… as grateful as every day has been since my outstanding medical team helped rid my body of cancer. My three-year scans just came back “All Clear.” For Dr. Dan, Nurse Pam, Nanci, Robyn, Zippy, Jaynie, and everyone else at Cottage Hospital, I give you my love and thanks! I apologize for not being a “normal” patient and thank you for dealing so “gracefully” with my Melinda-ness!

Rather than let “Survivor’s Guilt” overtake me to the point where I cannot function to help others, I have found it necessary to tweak that thought and those feelings into action that will help. The hardest part of all for me is knowing of children who die each day from childhood cancer– knowing the suffering they have faced and the suffering of their families. There is no “Half-Way” point of caring about childhood cancer patients… either you jump right in and become submersed, or you stand on the sidelines with little understanding of what is truly going on.

Fair warning: Jumping in will give your heart the ride of its life.

Truth: Jumping in will bless your life with truly remarkable heroes!

Children's Healthcare of Atlanta making Children Happy and Health

I just read this news from PAC2 about Andrew McDonough B+ Foundation ! Does it get any better than this? Dancing to raise money to fight childhood cancer??????????? Northwestern University– thank you for jumping in! Happy Dance Time!

I will rewind life a bit for my next posts so that I can begin sharing more about the Hope Tour after we left New Orleans. 

Children's Healthcare of Atlanta

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Bigger, Wider, Deeper

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

Hugo the HopeMobile returned to California one week ago. After three weeks, 3 days, 28 states, and well over 7,000 miles, it has taken me an entire week to process all that has happened so that I can place some of it into words. I feel that it will take my entire lifetime to fully grasp the meaning of this epic journey. I wish– I wish there were words big enough, wide enough and deep enough to describe to you how much this trip has impacted me. I am a different person than when I left home on June 17th.

Being able to visit so many places and having the opportunity to meet absolutely amazing people has made my heart bigger. I love how there is always room for more love in our hearts!!! The people I met taught me to have a wider view of how we need to give without holding back and how we need to express our love with passion and action. I love how when we set out to give our love away, it always comes back so much bigger than what we give.

I witnessed God’s mercy, grace, and His goodness. I felt His deep love. 

People ask me now if it was sad to visit the children who are very, very sick. It was just the opposite. As much as I hate what cancer does and as much as I hate the suffering it causes, meeting the children was a joy! They gave me so much more than I could ever give them; that is the plain truth.

At each stop, I thought of all of the children I know who have left this Earth way too soon because of cancer. As thoughts of these children who are no longer here filled my mind, my heart went immediately to all the people who suffer with this kind of hole in their hearts. I know there is nothing that can fill that hole.

Deep, deep love remains. This deep love has given birth to many forms of hope that help children with cancer. While we were in Philadelphia, Mom and I had the great pleasure and honor of meeting Joe and Ali McDonough from Andrew McDonough B+ Foundation. We loved meeting and talking with them! By combining their love for Andrew with their own enthusiasm and positive outlook, they have been able to raise money that is desperately needed for pediatric cancer research.

Joe and Ali McDonough from Andrew McDonough B+ Foundation

Now, I need, and want, to give a very special thanks to Joann, Bill, and Char from Alexa Nawrocki Pediatric Cancer Foundation. This foundation is named after Joann and Bill Nawrocki’s daughter, Alexa. Alexa battled cancer when she was two. In her loving memory, they began helping others.

Imagine what it must feel like to have someone give you food when your child is fighting for their life.

Imagine what it must feel like to have someone help you financially when it is time to bury your child.

Imagine how I felt when I met Joann for the very first time on our Hope Tour and she presented me with a check from Alexa’s Foundation to help toward our mission!

What means the most, is not the money, but they believe what I am doing is important—that it can make a difference. From the deepest part of my heart, I want to thank Joann, Bill, Char, and Alexa’s Foundation.

I finally got to meet Joann!!!

From this Bigger, Wider, Deeper Viewpoint, I wish that I could do everything to make a difference. I realize it’s going to take each one of us doing our part.

From this Bigger, Wider, Deeper Viewpoint, I can see the entire puzzle. I can see how we all need to be whatever part we can be of fighting childhood cancer.  Each piece is for the children,  and in its entirety, it is absolutely breathtaking. 

Stopping childhood cancer is about as beautiful as it gets.

 

 

 

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