A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for September, 2014

Curefest DC Welcome Event at Nationals Stadium

National Angel QuiltIf you missed CurefestDC this year, you can always begin planning for next year’s event that will take place on September 19th and 20th, 2015. After attending this year, I find it is a must for me to begin planning on attending next year as well.

The Welcome Event at Nationals Stadium was a wonderful time of entertainment, fun games, great food, and treasured times meeting others. Thank you to Arms Wide Open Childhood Cancer Foundation, Stillbrave Foundation, Smashing Walnuts Foundation, Children’s National, and Kyle’s Kamp for sponsoring the event! Families were decked out in their foundation and team support t-shirts. As we entered the stadium for the CurefestDC event check-in, the National Angel Quilt was gorgeously displayed. I had read about the emotional impact the quilt has on those who see it for the first time. I felt I was “ready.” There is nothing that can prepare one for this. On first glance, it is massive. The sheer size of the quilt speaks volumes about how many kids have suffered and died from childhood cancer. Seeing the children’s faces and reading their birth and death dates… 

At first, I felt I couldn’t breathe through the huge lump in my throat. Then, I had to stand back against the wall. As my body finally breathed in a breath, it came back out of me in a whimper. The whimper took over. It felt like I breathed in each one of those children’s souls and breathed out their suffering. I stood back to weep, not caring who saw me, not caring what anyone thought. My thoughts were, “This is why we are here. This is why we all need to step up for research for cures.”

National Angel Quilt

National Angel Quilt

Capitol Building

The Welcome Event was super-kid-friendly. Kids enjoyed a bounce house and lots of crafts and games. For some reason, they would not let me in the bounce house (ha ha!) This meant I needed to go back to the food table and eat an icing-topped cookie that looked like a baseball. Yum! The entertainment was spectacular; I was happy to see and hear Nicole Ricken perform again and to see her sister, Alyssa as well.

Nicole Ricken performing at CurefestDC 2014 Welcome Event

Nicole Ricken performing at CurefestDC 2014 Welcome Event

The fun went on and on, with Tattoo Tom Mitchell from Stillbrave Foundation spreading joy and tattoos. I am officially tagging Tom as a Kid-Magnet!

Tatto Tom spreading joy and tattoos

Tattoo Tom spreading joy and tattoos

“One day, the whole world will feel the touch of gold.”

~Dr. Irene Koesters

Curefest Welcome Event t-shirt

Curefest Welcome Event  — One Voice for Childhood Cancer

The very best thing about the Welcome Event? 

Voices for childhood cancer combined with action against childhood cancer.

Know what? This is a deadly combination for childhood cancer. 

Keep it up.

Curefest 2014 180

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

 

 

 

 

 

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Dear Cincinnati Bengals – Coming Together For a Greater Purpose

Austin Munoz Moorpark Football Senior Night

Austin Munoz –Moorpark Football Senior Night

Dear Cincinnati Bengals,

Thank you.

As a parent of a childhood cancer survivor, I praise your recent decisions surrounding Devon Still and his daughter, Leah, who is fighting stage 4 neuroblastoma. No one knows the darkness of those words, “Your child has cancer,” than parents who have heard them. No one knows the hopelessness, the despair, the panic, or the chaos of that moment than parents who have lived it.

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“Dealing with cancer is like a whole different world.”

~Devon Still

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What you have chosen to do is a mark of excellence. Your decision to retain Devon— even when his mind and heart were quite understandably elsewhere— is top-notch. Your organization’s decisions demonstrate the strength of character, compassion, and integrity of those in your front office. If I could, I would hug each and every one of you. As I did, you would see the tears in my eyes that are now rolling down my cheeks. It’s hard for me to believe that not everyone makes choices like you have. It touches me deep into my soul to see you have chosen humanity over financial gain. I believe you will see this is a wise choice as well in the not-so-long-future. Devon will become an even better player than he has ever been. Once you have witnessed your child fight for their life, you become a warrior too… one who will move the heavens and Earth to accomplish your goals.

Cincinnati Bengals, you are one class act.

And you haven’t stopped there. Not only have you retained Devon, but you have gone an entire football field farther by stepping up to raise money for pediatric cancer research! This is a gift that will save children’s lives!

Leah will be in my prayers. Devon, his wife, and his family will all be in my prayers. The entire Bengal organization will be in my prayers of gratitude.

Thank you for kicking childhood cancer out of Paul Brown Stadium!

May many other organizations follow the lead you have taken. You have set a fine example of coming together for a greater purpose!

With sincere thanks and squishy hugs,

Lee Marchiano

Momcologist & Childhood Cancer Advocate

“It’s not all about competition. It’s not all about what you can do on the field, but we come together for a greater purpose.”

~Devon Still

youtu.be/xl0sjEWKYI8 

Photo shared from Twitter @dev_Still71

Leah Still

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http://www.cincinnati.com/story/sports/nfl/bengals/2014/09/14/cincinnati-bengals-devon-still-leah-still/15647737/

Help the Bengals SACK PEDIATRIC CANCER

https://www.pldgit.com/campaign/768450939739702307

Devon Still jersey– $15 goes to pediatric cancer research. (Over $400,000 raised in just four days!)

http://www.cincyshirts.com/cincyshirts//still-strong-devon-still-shirt.html

 

 

If Childhood Cancer was in Human Form…

Nurse Cyndi, the Blue Chemo Fairy

Nurse Cyndi, the Blue Chemo Fairy

The truths in my last post about what childhood cancer has in common with landing on the moon continue to circulate through my mind and heart. What speaks loudest to me is that we are ignoring the urgency of the need for cures for childhood cancer. There is so little awareness of childhood cancer that we accept “what is.” Many people assume that any child with cancer can go to St. Jude’s Children’s Hospital and receive free treatment that will cure them for life.

Ugh.

There is no known cause for childhood cancer.

Getting a proper diagnosis for a child with cancer can be an all-out mission of searching.

When a child is diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults.

Treatment for childhood cancers (if there is one) are ancient.

“Research for children with cancer-especially for those with solid tumors like sarcomas and brain cancer—lags nearly two decades behind their adult counterparts.”

~Eugenie Kleinerman, M.D., Division Head, Division of Pediatrics, TheUniversity of Texas MD Anderson Children’s Cancer Hospital

NCI funding for childhood cancer research has been dwindling, with a 30% decrease over the past decade. Pediatric cancer research receives a tiny 4% of the total NCI budget. This is critical. Federal funding for pediatric cancer research is vital, due to the fact that pharmaceutical companies do not see returns on their investments like they do for developing drugs to treat adult cancers. Virtually all the funding for pediatric cancer research comes from the NCI. Cuts to this budget greatly harm the Children’s Oncology Group and block medical discoveries that will lead to saving the lives of our children.

“Accounting for inflation, NCI’s funding has decreased by more than $1.1 billion (24.7 percent) since FY 2003.”

(The American Recovery and Reinvestment Act of 2009)

Where I really want to go here is beyond the statistics. We are talking about children. We are talking about children who are fighting for their lives. We are talking about seven children dying from cancer each and every day in our country. We are talking about lack of research which means outdated treatments that cause a lifetime of suffering—if a child does indeed survive.

Imagine…

Imagine that childhood cancer was in human form, not disease form.

Would we carry on with our lives as if we had not a care in the world while an assassin showed up and killed 7 children each day in this country? Would we call in the FBI, the Navy Seals, and every single solitary team that could possibly snuff out this killer? Would we develop ways to protect our children from this evil monster? Would we wait a day, a week, a month, a year, to act? 

If childhood cancer was in human form, we would have already captured and killed it.

Just because childhood cancer is in disease form does not mean this is not urgent!

As I prepare to travel to Washington, D.C. next week for childhood cancer events, including Curefest, I keep thinking of Erin Griffin and Gabriella Miller. Both girls spoke at last year’s event. This year, they will not be able to attend in person. They will be viewing the event from heaven.

This IS urgent! THIS IS URGENT!

Sometimes I wish childhood cancer was in human form. I wish it could meet Mohammed Ali in his prime in the ring.

Pin The Bag of Chemo on the Mass

Pin The Bag of Chemo on the Mass

Guest Blogger: Lee Marchiano

Something you can do today to help end childhood cancer:

https://www.curebraincancer.org.au/page/98/petition

http://4sqclobberscancer.com/2013/02/24/dear-congressman/

 

What Childhood Cancer has in Common with Landing on the Moon

IMG_2650We are nine days into September, Childhood Cancer Awareness Month. While I feel thrilled and encouraged by more Gold Lighting victories for childhood cancer awareness, there are times when I realize just how far we have to go before we even come close to becoming societies educated about the number one disease killing our children. One of these times struck me right between the eyes.

I learned, just a day ago, that Neil Armstrong’s daughter, Karen, died of a brain tumor in 1962. Wow.

Given the excitement of this kind of job, why did Armstrong choose to join the space program? Hansen says he isn’t sure, even after all his research, but he pointed to the fact that Neil’s daughter, Karen, died of cancer at the age of two in early 1962. “I think it had a very fundamental effect on Neil’s marriage, on his family, on Neil’s own career,” Hansen said.

“It was only four or five months after his daughter’s death that Armstrong put his name in for astronaut selection. Hansen believes that Armstrong “saw Apollo as a way of refocusing his energies and doing something important, and it was a way for him to really deal with his daughter’s death.”

                                                                ~James R. Hansen, Biographer

Further, I learned that a child who is diagnosed with DIPG—the same type of cancer Karen died from—is treated today with the exact same treatment.

A child diagnosed with DIPG today is treated with the exact same treatment as a child who was diagnosed in 1962!

With the tremendous advances in every area of human life since 1962, it is appalling that this is true.

When Melinda and I were in Washington, D.C. this past June for Childhood Cancer Action Days, we planned extra time to visit museums. Something about seeing the exhibits where people gathered together to stand up for their human rights made me look at the current state of childhood cancer advocacy in a more focused light.

Solving the problems surrounding childhood cancer is not going to happen without a joining together of forces, without establishing specific goals, or without sacrifices. Just like Neil Armstrong refocused, today there are numerous bereaved parents who are “refocusing” their “energies and doing something important.” These parents are heroes. I would love to begin naming a list of them, but I know that is not what they want. They don’t want their names honored; they want their children honored. They want awareness that leads to funding for research that will bring less toxic treatments and cures for childhood cancer.

I won’t name them. History will name them. History will remember them. Your children and your grandchildren, and their grandchildren will have a better life here on Earth because of the sacrifices these heroes are choosing to make today. Someday in the future, I will stand in that same museum and read about these people and the great advances they achieved toward cures for childhood cancer.

The most recent communication I received from PAC2 states exactly where we need to begin to be certain that a child will not be diagnosed with cancer 52 years from now and receive the same treatment as today! After typing “52 years”, I cannot breathe…

Go to the moon challengeFrom: PAC2 https://www.facebook.com/PeopleAgainstChildhoodCancer/photos/a.372700847313.154528.370104237313/10152297179327314/?type=1&theater

#ChildhoodCancerChallenge

#GoToTheMoonChallenge

What childhood cancer has in common with landing on the moon is history. The history of Neil Armstrong’s loss of his precious daughter, Karen, must awaken us. We have been “asleep,” for 52 years while our children have been crying out to us for help. Like Neil Armstrong, we have the opportunity to make history. In order to make history, we must create and carry out specific goals, just like they did in the 1960’s in their quest to land on the moon.

“Actually, with cancer, the end of each day is a goal, and waking up in the morning is a victory.”

 ~Melinda Marchiano, Grace: A Child’s Intimate Journey Through Cancer and Recovery

It’s time to combine all forces on deck. There is not a moment to waste.

History is being made each moment. Take the #ChildhoodCancerChallenge

Commit. Sacrifice. Focus. Act. Adequate funding for childhood cancer research must begin today for quicker cures.

This will be better than any moon landing could ever be! The end of childhood cancer…

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Guest Blogger: Lee Marchiano

The Beginning of the End of Childhood Cancer

A Day of Yellow and Gold Times Square“Cole, you are doing something big, my son.”

~ Tony Stoddard

Today is a day of gratitude.

All I can think of is Tony Stoddard and his son, Cole.

All I can think of are the children who have suffered through childhood cancer and all the people who love them.

September—Childhood Cancer Awareness Month– is here. Those long days of hard work by childhood cancer advocates all year long are beginning to bear fruit. Last night, New York City gave every one of us who has been sucked into the world of childhood cancer a treasure. You see, we know how hard these children fight, and we have witnessed how they suffer. Our dearest friends are parents who have endured the worst of the worst. How can any of us even imagine our child looking to us, like Cole did, saying they will never grow up to do anything?

Seeing 1 World Trade Center, the Helmsley Building, and Times Square light gold for childhood cancer awareness does something inside me I cannot even describe. It makes me cry. The tears are tears of sadness, joy, and hope all tangled together in one big ball.

http://www.myfoxny.com/clip/10541893/times-square-goes-gold

This my friends is the beginning of the end of childhood cancer.

Cole, you are doing something VERY big. Your daddy’s love for you shines bright, glittery gold. Dear little boy, you are helping us all to do the right thing.

We will not relent. In fact, we will join forces.

Yes… the beginning of the end…

Thank you, Cole. 

 #GoGold #WorldGoGold #EmpireGoGold #Gold4KidsCancer 

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Guest Blogger: Lee Marchiano

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