A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

Penn State Dance Marathon and a Boy Named Kyle

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

Wow, wow, wow!

The Penn State Dance Marathon (THON.org) has raised $10,686,924.83 for pediatric cancer research!

THON.org is the largest student-run philanthropy on this Earth. The Penn State IFC/Panhellenic Dance Marathon raises funds and awareness for the fight against pediatric cancer. In 1973, a group of students held their very first dance marathon; the 39 couples who participated raised $2,000. Now, THON has over 700 dancers, 15,000 student volunteers, and it has raised more than $78 million to benefit The Four Diamonds Fund at Penn State Hershey Children’s Hospital.

http://www.thon.org/whatisthon/cancer_facts

THON is a shining example for all of us who work to stop childhood cancer. I absolutely love to see and hear about young people caring about others. Truly, I wish children would learn more about philanthropy in school when they are very young. I wish they could have many opportunities before them to think of others and to learn altruism. Teaching children to care for others gives them a unique dose of gratitude for their own lives—it teaches them they are a person of worth because they have something to give.

What a concept, right? Because they give, they have a special value. A person’s value does not come from what they “have,” but from what they “give.”

To the THON dancers and volunteers, thank you! You have given more than your time, effort and money. You have inspired us, encouraged us, and lit a path for us to follow.

And now, I need to tell you about a boy named Kyle. Kyle is four years old; he needs a bone marrow transplant, and his family is desperately seeking a donor. They have created this site to help find one…

Could it be you?

http://kyleneedsyou.org/

One little cheek swab will let you know if you are a match.

Let’s spread the word and help save Kyle’s life.

Kyle Needs All of Us

 

 

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There Once Was a Blog About Childhood Cancer

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

Once upon a time– long, long ago, and in this very land we live in– there was a girl who wrote a daily blog to help raise awareness about childhood cancer. With a deep care in her heart for all children who have faced the battle, she sought to make a difference in our world for them. Because childhood cancer is pitifully overlooked and underfunded, she knew she needed to join other childhood cancer awareness advocates in sharing and speaking the truth. She knew her role in this life as a survivor was not just to be grateful for her own life, but to work passionately to stop childhood cancer.

Alas, this young survivor entered her senior year of high school. Amid all of the studying for her challenging advanced placement courses, she began applying to colleges. With future options spread out before her, she knew, without a doubt, that she wanted to study to become a pediatric oncologist. And so, the college applications began, as the girl wrote essay after essay with the hope of being accepted to a great school. Double alas, the reality of paying for her college education sent her on a “Scavenger Hunt” for scholarships, and the essay-writing and packet-making reached a fever-pitch!

But something huge has been missing from her life. She needs to educate people about childhood cancer. She needs to share news; she needs to be aware so she can make others aware. Her passion and purpose have been buried under the weight of preparations for the future. She has had to keep reminding herself that there is purpose in the applications, that they are so much more than just “papers.” Her sincere hope is that all of the application work will translate one day into saving the lives of children.

So now, with a huge smile, and a breath of relief, this girl is about to re-enter the World of Blogging About Childhood Cancer.

It is SO good to be back!!!!!!!!!!!!

Please do all that you can to make our voices heard—thank you PAC2 for all of this information about the severe shortage of methotrexate.  It is true, “Our kids need ACTION NOW!”

New York Times Article—“Supply of a Cancer Drug May Run Out Within Weeks”

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=2

Dr. John Maris testified before Congress about the shortage

http://curechildhoodcancer.ning.com/forum/topics/dr-john-maris-chop-testomony-to-congress-on-the-drug-shortage?xg_source=activity

Please take swift action—as if it were your child who needs this medicine to survive…

President Obama, The White House: 202-456-1111
FDA: 888-463-6332

Find and call your rep here.

Call the 5 companies who have stopped/slowed production. Press the option for “adverse effects” & tell them how you feel:

APP Customer Service
1-888-386-1300
Bedford Customer Service
1-800-562-4797
Hospira, Inc. Customer Service
1-877-946-7747
Mylan Institutional
1-888-258-4199
Sandoz Customer Service:
1-609-627-8500

Finally click here to contact your legislators now and urge them to cosponsor the Preserving Access to Life-Saving Medications Act now!

(Thank you PAC2!)

 We must act now!

Why???

Out of respect for this brave warrior’s family, the names in the following quote will remain anonymous. I know this is not what people want to see or hear… but it is truth. Today, this is what one incredible cancer child faced. This is what the family faced.

“It won’t be much longer. His breathing is rapid and shallow. His chest sounds crackly and he’s been coughing up foamy white stuff. (  ) suctioned some out and saw blood in the tube. This is horrendous. I don’t think he’ll make it through the day, but I don’t know. So sick to my stomach right now.”

Our choices are:

1)      Look away and do nothing

2)      Act boldly

I choose to act boldly. Please, allow your love for children to stir you to immediate action.

With my deep respect to all those who choose action, I give thanks for you!

I love Reef! He is calling all of us to action

 

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Life is one Breath Away From Death

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

“The whole of life is but a moment of time. It is our duty, therefore, to use it, not to misuse it.”

~Plutarch

This quote has extra special meaning to me right now, as I squeeze every drop of time from each day. I love knowing that “the whole of life” is “but a moment of time.” If we could see our lives as a whole more often, I believe mankind would include many more people of action. Something about the pace of our lives makes us view it all too often through the Zoom In Button. We see the teeny-tiny picture, but have no clue where it fits into the great scope of life.

When we hit the Zoom Out Button, the Grand Scope of Humanity comes into focus. We are able to see past the dirty laundry pile, into the external world that is calling for our help. From that external world is where I hear children’s voices calling to me. When I look to see who is calling, I hesitate knowing there is someone in need. Will I be able to help? What if the problem is way too big for me to handle? What if I allow this calling to change me? What if try my best to make a difference and fail?

“The fact is, that to do anything in the world worth doing, we must not stand back shivering and shaking at the cold and danger, but jump in and scramble through as well as we can.

~Robert Cushing

Action. What we need in order to stop childhood cancer is action. We need not be concerned about what is the right way or wrong way—just to make a way. I agree with Robert Cushing; it’s okay if we “jump in and scramble through as well as we can.” Even though finding a cure for cancer seems like an enormous and out-of-reach goal, we all better jump in and start “swimming” toward the goal of raising money for research that will lead to a cure.

Oh yes, there will be those who shake their heads and wonder why you would ever “waste your time” working toward a goal that is unattainable. There will be those who wonder why you have chosen what you have chosen to do to be of help. There will be those who scoff and snort and mumble when they see you working hard for a cause.

“Great spirits have always encountered violent opposition from mediocre minds.”

~Albert Einstein

But then…

There are people who dream big and work hard to create reality out of their vision. May I please introduce you to someone I learned of this past week?

The Andrea Rizzo Foundation (@DreasDream on Twitter)

http://www.takepart.com/photos/exclusive-carrie-ann-inaba-use-her-dance-skills-inspire-kids-cancer

Andreas dream and spirit live on through the joy children receive from this foundation.

I leave you with two opportunities for Childhood Cancer Advocacy with only a click…

Yes, if you click, it means you are a person of action!

Journey for a Cure— Ipads to cancer kids in the hospital

http://pep.si/rN6Mjf

Wet Will-E Water Balloons on Facebook

Please like this page and type “Isaiah Alonso Foundation Please!”

https://www.facebook.com/wetwillewaterballoons

Each one of us needs to become a person of action. If we recognize our lives as the gifts that they truly are, we become people who use, rather than misuse, our lives.

Life really is one breath away from death.

Thank you Anna! I agree!

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Pharmaceutical Companies Challenge

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

The U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

Treating children with cancer is not profitable for pharmaceutical companies.  Without huge changes to the PharmaceuticalCompanyGreedMachine, we will continue to fail the children of our country. Childhood cancer is the number one cause of death by disease in the United States.  Since the causes of childhood cancer remain a mystery, it seems to me that our country should be pouring time, sweat, and money into finding the cause and to creating a cure.

Instead, it seems to me there are many ostriches with their heads and necks stuck deep in the sand.  They don’t want to pull their heads out and look around because the truth will be ugly.  The ugliness is not childhood cancer; the ugliness is the fact that childhood cancer continues its rampage of destruction while we sit idly by.  I don’t have their financial documents in front of me for audit, but I will bet that pharmaceutical companies are making a large enough profit where they would be able to donate a few million for altruistic purposes like wiping out childhood cancer.  Yes, I call on each pharmaceutical company to audit the hearts of your CEO’s.

“The world will not be destroyed by those who do evil, but by those who watch them without doing anything.” ~Albert Einstein

Imagine how difficult it is for a child to fight cancer. Then, take in this reality…

“In the past 30 years ONLY ONE new cancer drug has been approved for pediatric cancer.”

                                                                                       ~Pablove Foundation

Can we, knowing this truth, sit with our mouths silent?

I cannot.

For the children who survive childhood cancer, 2/3 will suffer some form of lifelong effect from the treatment. All too often, it is the treatment that kills a child fighting cancer. All too often, it is the treatment that causes extreme pain and suffering.

http://abcnews.go.com/Health/story?id=2553765&page=1#.Tr7zREOa9tN

“We are desperate for new treatments. We have not had a single meaningful improvement in pediatric cancer medication in decades and the children have paid the price,” says Dr. Peter Adamson, chief of the Division of Clinical Pharmacology & Therapeutics at The Children’s Hospital of Philadelphia. “Even though we cure four out of five pediatric cancer patients, even those who survive often go on to have lifelong side effects from the treatment we give them.”

This news story tells more about the difficulty of getting big pharmaceutical companies to develop new, less-toxic treatments for children with cancer…

 http://abcnews.go.com/Health/CancerPreventionAndTreatment/big-pharma-treat-childhood-cancers/story?id=14571277

What a sad truth it is to know that it will take legislation like the Creating Hope Act to lure pharmaceutical companies into doing what is the ethically right thing to do.

I invite all pharmaceutical companies to prove me wrong… show us that the health and happiness of our children are more important than any amount of profit you can gather and store.

Please don’t wait. Time is paramount.

Please continue your support for Reef

http://www.savebabyreef.com/

1,000 Candles for Baby Reef on Facebook:

https://www.facebook.com/groups/70216977000/

 

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Peace and Aloha Auntie Priscilla

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

Priscilla Jayne Valdez became my Auntie Priscilla not because of any blood relation, but because of a strong connection of our hearts.  My mom met Priscilla when she was fourteen and a freshman at Claremont High School. They have been friends ever since.

One of the things I hear over and over again from families who have a child fighting cancer is how things change once their child is diagnosed. It’s not only the day to day dealing with health and life and death issues, it is dealing with many new emotional issues as well.  There will always be someone—friend or family– who is not able to handle the reality of the illness. Some people flee from your life as if they are fearful they will become sick too if they stay around.  On the other hand, there are family and friends who draw near, remaining right by your side in case there is any way they can help.

My Auntie Priscilla is one of those family/friends who have always been by my side.  In the midst of my treatment, after my treatment, even during the creation of my book, she has been a constant support. Over twenty years ago, one of Auntie Priscilla’s friends lost their baby girl to cancer. She never forgot, and she has always given generously to help stop childhood cancer. She has taught me about kindness and generosity by her example.

While I was in treatment, Auntie Priscilla and I grew very close as a bond grew stronger and deeper and a treasured understanding of each other developed.  She has fought health problems for a decade. 

“My mom and I traveled to Irvine to meet up with Priscilla and her daughter, Tanya. Our incredible friends from Washington have supported me every step of the way. Priscilla, unfortunately, was in extremely poor health, and when I was asked whether or not I wanted to go, I did not even take a single second to think about it. I had to go. I had not seen her in nearly five years, and I had to go thank her.

I’ll tell you, just to put my arms around her, look into her bright hazel eyes, and show her my gratitude was unbelievable. Amazing. Funny thing, too, I suddenly had a new sense of compassion for her. Always having felt sorry that she had to go through all that she went through, I now had a different feeling toward her. It was as if I could not only see her pain, but feel it as well. I know what it is like to be that sick.

Auntie Priscilla, you are incredible, and I love you so, so much. You have done so much for me, and I am at a loss for words to express my gratitude. You are so strong, and you have a heart of pure gold.

Going to see her helped me to remember to cherish every step, every breath, and every improvement in my recovery. I was reminded that, although life is so, so tough, and I’ve been through the wringer, I still have so much to be grateful for.”

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

On October 27, 2011, Auntie Priscilla left this Earth.  I have no doubt she is now in the arms of our Heavenly Father. As I drove home from dance on this same night, it was late and the clear sky was filled with stars. I drove past the Avila Beach exit and around the corner on the 101, heading south into Shell Beach when I noticed a brilliant star in the sky. It was so bright I thought it had to be a planet. Just as this thought passed through my brain, the shimmering star began to shoot across the sky over the ocean, displaying the most spectacular astronomical event I have ever witnessed.

Auntie Priscilla called me her Little Angel. 

I think my Auntie gave her Little Angel one last amazing gift of love.

Peace & Aloha Auntie Priscilla

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Got YOU SeniorMadness!

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

SeniorMadness is trying its best to keep me far from the Land of Blogging for Childhood Cancer. Whenever a week goes by without writing a post, I feel badly because I know that childhood cancer continues its destruction.  With everything in me, I need to do all I can to stop it. 200 children around the globe are going to die today, and 600 more are going to get diagnosed.  I refuse to allow SeniorMadness to gobble my words.  I love sharing what others are doing, and I love sharing news about advances in research. 

Yesterday, I read this terrific news from St. Baldrick’s:

St. Baldrick’s announces more than $5.1 million grant to the Children’s Oncology Group! For the first time, this year’s grant will also help COG member institutions open four specific high-impact clinical trials which they might otherwise not be able to offer their patients.

http://www.stbaldricks.org/media-and-photos/media-stories/view/headline/title/St.%20Baldrick%E2%80%99s%20Foundation%20Announces%20$5,140,000%20Grant%20to%20the%20Children%E2%80%99s%20Oncology%20Group/id/1559

Clinical trials are the breeding ground for hope for a cure for cancer. While sharing about St. Baldrick’s, I also need to mention and thank the 46 Mommas for their tireless support for St. Baldrick’s. 

Speaking of research, news from Kids Cancer Research Foundation today is about T-Cells.

T-Cell therapy involves taking out the child’s T-Cells, making them stronger, and linking them to a mouse antibody that is then injected back into the child to target the Neuroblastoma (NB) cells.

The T-Cells are natural killer cells, kind of like Pac Men. The mouse antibody portion of the combination helps identify the NB cells, thereby brining the T-Cells to the Neuroblastoma cells to be killed.

Dr. Louis, from Texas Children’s Hospital/Gene Therapy at Baylor College, just published their T-Cell trial in the journal “Blood.” Out of 19 children in 2 groups, 8 children had no disease after frontline treatment. After 3 years, not one of the 8 relapsed. Frank Kalman, executive director of Kid’s Cancer Research Foundation, reports, “Numbers like this don’t exist in NB (neuroblastoma) research.”

Continuing on the subject of research, I want to tell you about a very fun activity coming up this weekend to help support CureSearch.  There is a very brave boy named Sy Sherman who has inspired his Aunt Rachel to “Kick It” into high gear to fight childhood cancer. If you live in the San Francisco Bay area, please check out this great event that will take place on Saturday, October 29th.

 http://www.kick-it.org/events/kicking-cancer

Finally, I want to share a petition. (You know how much I love sharing easy, clickable ways to be an advocate for childhood cancer!)

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

Click, click… nice… way to go!!!

And you, SeniorMadness… hee hee, got you  this time!

You "Kick It" Sy!

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My love to you, Carol Burnett

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

Yesterday, Mom and I traveled to Santa Barbara to help the Teddy Bear Cancer Foundation sell raffle tickets for their Fall Fundraiser at the Lobero Theater.  Mom and I worked as a team;  I became quite bold in asking people if they would like to purchase raffle tickets! I believe I even cracked the “toughest nut” there! If you are scratching your head and wondering why the Lobero Theater sounds like a familiar name, it is because it is the same Lobero Theater I write about in Grace … the pageant location.

It was one of those spectacular Santa Barbara days when the ocean sparkled while the majestic mountains gazed loving down upon the brilliant expanse. For as long as I have known about Teddy Bear Cancer Foundation, they have always had a Fall Luncheon for their big fundraiser. This year was different. This year, Teddy Bear planned an evening of comedy to honor Carol Burnett.

Now, I need to give you a little background. My mom is one of those rare people who are never excited about celebrities. Her “celebrities” are children with cancer and those who help them. But—when she heard that Teddy Bear was honoring Carol Burnett, she lit up like a Christmas tree and began bubbling over with joy and laughter. She told me all about Carol’s show that she watched growing up and how Carol’s humor is like no others. My mom absolutely loves Carol Burnett!

When the big screen dropped down across the stage last night, and clips from Carol’s show began playing, I saw exactly what Mom was talking about. When Carol stepped to the podium to speak, I felt exactly what Mom had spoken of. Carol’s heart is huge. I say this not just because she helped Teddy Bear raise a lot of money to help families in need, but because she has a genuine love for her fellow humans. Something tells me this is why Carol’s humor is the absolute best ever, because of her tremendous care for those around her.

I learned something else about Carol last night. Carol lost her daughter, Carrie, to cancer.

It must have been very difficult for her to be there last night. I am grateful– extremely grateful– to Carol Burnett. I know firsthand how vital it is for us to support foundations like Teddy Bear. They helped save my life when I was imprisoned in the darkest pit imaginable. With their help, I received the help I needed to heal.

I want to thank everyone who attended last night, everyone who purchased raffle tickets (!), and I want to thank Carol Burnett for providing a beautiful bouquet of hope for children fighting cancer.

Carol… you have my love and deep respect forever.

Laughter is outstanding medicine for life!

http://www.youtube.com/watch?v=4bJoEfjHbvc&feature=related

http://www.noozhawk.com/article/100411_teddy_bear_cancer_foundation_fundraiser_to_honor_carol_burnett/

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Circle The Wagons: Do We Truly Care For Our Young?

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

There is a part of me that aches all over, knowing this is the final day of Childhood Cancer Awareness Month. I don’t want it to end.  Each year, as September arrives, I feel encouragement and hope that this, this will be the year that awareness of childhood cancer will take a giant leap. Half-way through this month, I was still looking for Gold Ribbons. The only Gold Ribbons I have seen are the Gold Ribbons on the profile photos of my Facebook friends—childhood cancer families. I have seen quite a few pink ribbons this month making an early appearance… kind of like the stores display merchandise before the holiday is anywhere in sight.

Forty-six children are diagnosed with cancer each day in this country.  Less than 3% of funding goes to fight childhood cancer. Seven children die each day in our country. There is no known cause. There is no known prevention.

How do we live amidst this death and destruction of children without rising up? I have learned the most about childhood cancer not from books, or from doctors, nor even from my own experience. I have learned the most from listening to families of children who have fought. They have a way of seeing straight through rubble to what is truth.  The truth is, we need to act swiftly and strongly to give to research.

May I offer the insight of Mr. Tom Nunn:

“Pink is popular for many reasons and justifiably so. It deserves research and funding for a cure but so does Gold for Childhood cancer. “If a coast guard helicopter was called out into the ocean to rescue ten people on a sinking boat, one of whom was a child, you know that he or she would without a doubt be the first one in the basket up to the helicopter. So why then does that same human response not apply here with Childhood cancer? Let me tell you why, it is because not enough $$ can be made by big pharmacy to invest into the medicine. OUR CHILDREN DESERVE MORE DAMMIT! We are letting them sink on a boat bobbing in the ocean of Childhood cancer.”
                                                        ~Tom Nunn, Max’s father

Not enough $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ can be made developing new treatments for children with cancer. Not enough money can be made off sick children to justify developing new, less toxic treatments.

I am sorry, but I find this sick!

I pray for an Awakening. 

Surely we cannot wait one more day to do something— anything— everything– to help stop childhood cancer.

Today’s suggestion of how you might help save a life…

Please give blood.

I had the opportunity to speak today at United Blood Services. I read the part of my book where I describe my first transfusion. I looked up after reading my five minute excerpt to glimpse at my mom in the back of the room.

She was wiping her tears.

Someone saved my life… and you can save someone else’s.

http://www.youtube.com/watch?v=87Y0lzZ9WY8

When our Awakening comes, we won’t need to concern ourselves with Gold Ribbons or what they stand for. We will ,naturally, without a thought to the cost, Circle-The-Wagons Around Our Young-In-Need.

This is the World I dream of Awakening to and the World I am working for.

Jamie Rendall lived to be 5

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Mission Possible

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

Your mission, should you choose to accept it, is to click to help make this happen…

The Isaiah Alonso Foundation has been nominated to win a free brand makeover, ad campaign and website, provided by advertising agency Chimpanzee.  https://www.facebook.com/chimpmybrand

Voting runs until midnight EST on September 30th. Every single vote really matters!

 

https://www.facebook.com/questions/10150294239110172/

Please vote. It will only take a minute of your time.

There are many others who are dedicating their lives; I know we can take the time for a little clicky-poo to help The Isaiah Alsonso Foundation. Did you know that one of the 46 Mommas is Cheryl Alonso, Isaiah’s mommy?

                                                                                                                                                                                          Mrs. Jodie Nunn is someone I look up to and admire.  She has taught me  things about life… and I have never even met her. Jodie and her family      make me look for how I can do more to help stop childhood cancer. If  more of us become just a bit more like the Nunn’s, the Mission to stop  childhood cancer is certainly possible.

 Ms Cheryl, Ms Jodie, and all of the 46 Mommas make me know we can all  do more. We can all give more. 

 Yes… until there is not a speck of hair on our heads… if that is what is  takes.

 From Mr. Tom Nunn to his beautiful wife (and 46 Momma) Jodie:

 “I look up to Max‘s Momma more today than I thought was possible. I  am so sorry Jodie that you had to do today what you wanted to do that  I wish no Momma will ever have to do again some day. You made Lilly  and I so very proud and added even more meaning to Max’s life and  legacy than I ever imagined possible. I still hurt the same as you do too  but we have taken one more step forward to ending the monster                           little c.                  I Love You Jodie.”

 

46 Momma Jodie Nunn

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Don’t Stop Believing

Here I was, sitting and thinking about the team. My friend posted Emmett’s hope flag hanging in Union Station in D.C. Instant tears, knowing that he and everything he has endured is honored and respected and he is spoken for! I love you, my Little Lion Man!

           ~Angela Williams

46 Mommas Banner in Union Station

I thought of the 46 Mommas all day today—especially when it reached 2:00 p. m. PST. I knew that a few of the Mommas would be sitting in the chairs, ready for TheBigShave. Have you imagined what they would feel like? I’m not talking about the new-found breeze on their heads, but what it must feel like inside. Each one of the Mommas has a huge reason why they are there. Somehow I know each of them would give more than their head of hair if it meant that pediatric cancer research would be fully funded. They all know that when that day comes—full funding for research—we will begin to make huge strides toward cures.

This is why they Shave For The Brave.

If you haven’t yet, please considering adopting a Momma.

Here is a video introducing each of The Amazing 46 Mommas…

http://www.youtube.com/watch?v=TxJTi93URwc

Thanks for the Inspiration Anna!

“At 5:00 EST, 46 of the most beautiful women in the world will become bald. Their children had no option of losing their hair. These ladies are in D.C. at Union Station. Some have lost their children to cancer, some have children still in battle & some have survivors (but the worry never stops). Each shaved head brings awareness and money towards research and a cure for childhood cancer.”

                                                                 ~Jeri Where’saCure Geary

Thank you Angela, Anna, and Jeri. May the money raised today for St. Baldrick’s lead to what we are all working for, hoping for…

Don’t stop believing.                                        

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