A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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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

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…

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

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

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.

 

 

 

The Child First and Always

Wheeeeeeeeeeeeeeeeew!

After nearly 7,000 miles, visits to 15 children’s hospitals, cancer centers, and childhood cancer research labs, I am overflowing with HOPE. Our visit today to Primary Children’s Hospital/Huntsman Cancer Institute in Utah was our final visit. Here, I had the unique opportunity to speak to a room filled with patients, hospital staff, and physicians. I want to thank Elaine Pollock and Dr. Josh Schiffman for their help and support to make this incredible day possible. Having this time to share my story and offer personal insights on how we can better help children fighting cancer makes my heart fill to the top. Being able to tour Dr. Josh’s lab, having him show me the research he is working on, and hearing his perspective on how we can stop childhood cancer by preventing it through genetic studies makes my heart leap to the point of skipping beats! I absolutely love how he believes research begins with the patient and then moves to the lab, rather than the other way around. I need to thank Alex’s Lemonade Stand for believing in the work he is doing– for the research grant they have provided for his studies. At the same time, I want to encourage other childhood cancer foundations, corporations, and individuals with bulging wallets to consider supporting his work. 

Finally, I need to encourage people who truly care about stopping childhood cancer to give as generously as they can. Research costs money– plain and simple. Research like Dr. Josh is doing will cure childhood cancer by preventing it in the first place.

What a remarkable goal. 

Let’s believe. Let’s give. 

It’s all about loving the children. As the sign outside Primary Children’s states boldly…

“The Child First and Always”

 

The Earth is Filled to the Brim with God’s Glory

When my mom and I began this Children’s Hospital Hope Tour, I had high aspirations of writing each night to tell you what happens each and every day. Our schedule has been very tight, and we are filling our days to the tippity-top! There have been many surprises along the way, and we have met people we thought we would never have the chance to meet. When we return home, I look forward to filling in all of the details.

My truest intention on our Hope Tour is to bless the children who are currently fighting cancer to give them hope. My purpose is to give. You know how it feels when everything in you tells you that you need to step out in action? There is no way Mom and I could not set out to complete this mission of our hearts. What I need– and want– to share with you today is how we feel God’s presence each moment of each day… how we feel we are receiving, rather than giving. 

As we drove through upstate New York, Pennsylvania, Ohio and Indiana today, at every turn, we were overwhelmed with God’s goodness. The beauty of the land that God has given us overwhelmed us again and again, till our eyes brimmed with tears. The great fields of crops and scenic red barns that dotted the land gave me a gratefulness I have not known until this day. Today, I am struck how grateful I am for this Earth God has made for us– for this land that produces the food that sustains us and this land that truly shows us who God is and how much He loves us. 

It is true that He loves us so. It is true that He has filled this Earth with His glory. We need to protect and nourish this land of ours. As our love gift to Him, let’s be good to this land and good to each other.

There is no doubt. I have seen it with my eyes. I know it in my heart. 

The Earth is filled with God’s glory!

God's Glory all around us

Bye Bye New Orleans, Hello Atlanta

Without internet connection for two days, I feel there is so much I have missed sharing!

Very first, I want to thank Tiffany at New Orleans Children’s Hospital for helping me to be able to meet individually with children fighting cancer and their parents. This is the very first time I had the opportunity to go to each room to meet the children. I will be entirely honest with you when I tell you that my intention– each time I entered a new room– was to share hope with everyone I met in the room. By the time I walked out of each room, it was me who was inspired by the children. Each child, from little bitty ones, to teenagers, gave me something in my heart that I cannot even describe with words, as hard as I search for them. I met a one-year-old boy who had spent eight weeks in intensive care, with kidney failure and liver failure. Yet, there he was, sitting up by himself in the window seat of his room, like a real-life miracle. He was a bit timid at first, but when I showed him a photo of me with no hair and a therapy dog, he relaxed and smiled. The teenagers I met were very different than the little ones. They have a much greater understanding of what they are facing, and I could sense their fear. When I pointed to their beds and told them I was right there where they are three years ago, I could see their expressions change.

I could see HOPE.

And this is why Mom and I are traveling on this mission. We want HOPE for all of the children fighting cancer. We want less toxic treatments that will allow more children to live and to live a healthy full life after their battle. More people need to come forward to help, just like Benji Palus. I had the amazing opportunity to meet Benji at New Orleans Children’s Hospital when I was finished meeting with the children. Knowing how Benji volunteers hours and hours of his time to help children at the hospital, I imagined he must be quite a special person. When I actually got to meet him, his warmth, joy, and love far exceeded my expectations. Is there anyone who would like to hop on board the stop childhood cancer battle and become Benji-like? These hospitals need volunteers like Benji; the children need them and the parents need them. Sorry about the photo posts– click to see the whole photo!

With Benji and Tiffany at New Orleans Children's Hospital

On Friday night and Saturday, Mom and I attended the American Library Association Conference. To our great surprise, we met someone who helped us through my cancer treatments. When I was first diagnosed, my social worker, Robyn, gave us books and information. One of the books was written by a mom whose child survived cancer, and her name is Nancy Keene. I can see many of you who have lived in the world of childhood cancer nodding your heads like you know exactly who she is. Well, she and her lovely daughter, Allison, had a booth at the conference and Mom and I nearly screamed with delight when we saw she was there! We spent a long time talking together, and meeting her was the absolute highlight of the whole conference!

Today, we arose quite early and pointed HugoHopeMobile toward Atlanta. We traveled from Louisiana, through Mississippi, through Alabama, and into Georgia. Tonight, we are plopping into our beds in Atlanta. Tomorrow morning, we’ll be rising and shining early to go to Children’s Hospital of Atlanta. After that, we’ll continue northward to North Carolina. Unfortunately, I heard back from Duke Children’s Hospital. and I have to be eighteen to be able to visit with patients. 

Looks like I will have to use my time there wisely. I have an appointment to look at the University. Dr. Kleinerman told me some very great things about Duke University! I will be filling out college applications this coming fall. 

One way or another, cancer, I am out to stop you!

Wisdom on the Wall of Livestrong Headquarters

                                      

Louisiana, Wow!

HugoHopeMobile brought us from Houston to Louisiana today! There were drivers along the way who waved at us; they must like our childhood cancer HOPE signs on Hugo. Our drive today was filled with “ooooooohs” and squeals as our eyes feasted on the lushness of the land. I had no idea that there would be roads we would travel here in Louisiana that are built like bridges above the bayou waters– and they go on for miles and miles. The city of Baton Rouge had our jaws dropping to our chins as we gazed at the huge port. And most exciting of all was when I saw my very first legit mossy Louisiana bayou tree! 

Tomorrow morning, we will go to New Orleans Children’s Hospital and tomorrow night, we will attend the American Library Association Conference. I am very, very happy that we are receiving gracious replies from the hospitals we want to visit along our way. I am grateful to each and every person at each hospital for helping me on this mission. What mission is this, Melinda, you ask? 

***Each school day, 46 children are diagnosed with cancer in the U. S.

***Each day, 7 children die of cancer in the U. S.

***When children are diagnosed with cancer, 80% have advanced stages of the disease, as compared to 20% in adults. This is due largely to lack of awareness.

***Childhood cancer research is shockingly underfunded when compared with adult cancers

I am on a mission to help these children. They truly need our help. Please think about what you might be able to do– what you might be able to give. Please consider giving money or time. The very best thing you can give is your true understanding. Once you understand, there will be no way you cannot do something, anything, to make a difference for the future of our dear children.

Sorry no photos… the hotel internet connection won’t allow me to today!

Itinerary

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 – 7/8 Salt Lake City, UT

7/9 Sacramento, CA

7/10 Home

 

 

 

Dell Children’s Hospital and Livestrong Headquarters

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

Gosh, I barely know where to begin to tell you about this epic day of the Hope Tour!

Bone dry Texas finally received the rain today that they have desperately needed for months. Mom and I busted out our umbrella and made a mad dash through the pouring rain to HugoHopeMobile and fired him up to head from Houston to Austin. Yes, I it was backtracking, but for very good reason. We had the opportunity to tour Dell Children’s Hospital and Livestrong Headquarters. There is no way we could miss it!

The three-hour ride through lightning and heavy rain seemed to fly. Everything we saw along the road was interesting, and we gut laughed most of the way there and back about the silliest things. When I first saw Dell Children’s Hospital, it struck me how important it is for us to care for our sick children. We were met right as we walked in by a lovely and kind woman, Kip, who took us all around the hospital to see what an incredible facility they have. We learned that Dell Children’s is the only “Green Certified” children’s hospital in the world! Natural lighting, central gardens, and beautiful, spacious rooms make the hospital very child-friendly. All the rooms are private, they have a wonderful library (and librarian– Hi Gabby!) and they also have a Livestrong Survivorship Center. One of our very favorite things we saw was a fire engine X-ray machine!

Fire Engine X-Ray Machine at Dell Children's Hospital

After visiting Dell, we drove to Livestrong Headquarters where we met Leigh for a tour I will never forget. Right away, Mom and I were struck with Leigh’s warmth. I will tell you that Livestrong Headquarters was nothing like my imagination had dreamed up. Everything, from the building, to what was inside, to the way they run the organization, was truly ingenious. It is perfectly obvious that there are extremely sharp people running the foundation, and they do an incredible job. Yes, my word for everything I saw today at Livestrong is INGENIOUS!

 

Topping off our epic day, we returned to Houston and met my mom’s cousin, Kathy and her husband Rusty for a seafood meal I will remember for a long time! Tomorrow, the HopeMobile heads for New Orleans… visiting New Orleans Children’s Hospital on Friday morning.