A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Dancing With Love for The Children

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

Dance, dance, and more dance filled my day today… you know how happy that makes me! We (Civic Ballet of San Luis Obispo) are rehearsing for our Spring Gala Performance.

Every time my body moves to music, I remember how I felt inside when I was physically unable to dance. It’s a memory that makes me overcome with not sadness, but with overwhelming appreciation that I am able to once again do what I love to do. Even though nearly four years have passed since my cancer treatment, my gratitude has not faded; it has grown.

As I celebrate my ability to move, I cannot help but think of children who are in the middle of their fight with cancer. How can I move through space to beautiful music and not notice there are others who cannot?

 http://www.youtube.com/watch?v=5c8HvpeRWrc

Today, I think of Trey…

“Okay for those that believe in the power of prayer, I could really use your help … Please Pray ♥!! I’m still not feeling good :(. Running a fever and had night terrors … Please pray that it’s just a normal kid sickyness … please! Below is my Mommy’s post from last night :(. Please pray for strength and peace for her and Daddy too.”
“Afraid to fall asleep. I can’t sleep when he’s “healthy” …afraid if I go to sleep I may never see him again. He keeps waking about every 40mins with a 20 min long night terror. God please just grant us a break.”

 

I think of Alyssa…

https://www.facebook.com/pages/We-love-you-Alyssa/299248763468174?sk=wall

http://www.giveforward.com/helpsupportteamalyss

I leave you with an opportunity to be an advocate for children with cancer. All you have to do is click away!

Pablove Foundation

“For every new “Like” Content Chemics will donate $1 to The Pablove Foundation. What are you waiting for?”
https://www.facebook.com/contentchemics

Thinking of Alyssa


 

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Will Taylor Swift Say Yes to Kevin McGuire?

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

I learned of a courageous young man named Kevin McGuire today. Kevin was diagnosed with leukemia when he was thirteen. After winning the first battle, Kevin—now eighteen—has learned that he must battle cancer again.

The full story–

Having been diagnosed when I was thirteen, I cannot imagine what Kevin is feeling right now. I do know that every ounce of love and care for Kevin will make a difference for the better in his current fight and in his future recovery. Those who have never known anyone with cancer cannot comprehend the complexity of treatments or the horror that someone’s body goes through while raging war against cancer. I have found that teens face a very different added emotional struggle that goes along with the physical fight.

A fellow teen survivor sent me this message last week–

“I thought no one else knew the hell and loneliness.”

What I want to describe is the deep need for us to give from our hearts to help Kevin. He not only needs methotrexate (thank you again to those who yelled, kicked, clicked, and screamed,) but he needs everyone around him to help heal him by lifting his spirit over and over again. Healing Kevin’s body is but a portion of the battle.

It sounds to me like the very best Spirit-Lifter for Kevin, would be for Taylor Swift to take him to his prom!

Taylor Swift take KEVIN MCGUIRE TO PROM!

https://www.facebook.com/events/338272569549921/

Please like this page, and let’s gather all of the Spirit-lifting medicine for Kevin that we can find. Okay, all together, on the count of three…

Taaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaylor!!!!

I bet she already have a dress to wear…

Please Say Yes, Taylor!

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Way to Yell, Kick, Click and Scream– I am SO Stinkin’ Proud of You!

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

I want to get down on my knees and thank each and every one of you who yelled, kicked, clicked and screamed about the shortage of the drug methotrexate. According to PAC2, who I must continually thank for uniting us and educating us, “the methotrexate crisis is averted”! The childhood cancer community has come together in these past few weeks, with a voice that has been heard! Like I said in the title to this post, “I am SO stinkin’ proud of you!”

This news came today from a FDA webinar:

1)    The FDA has approved APP Pharmaceutical’s application to manufacture preservative free methotrexate

2)    Manufacturing at Hospira has increased earlier than expected

The FDA concluded:

“We now have sufficient available supplies and will continue to see more in weeks to come.”

Further updates will come, as there are other potential drug shortages on the horizon.

If you would like to listen to the webinar, call 800-839-8792.

I send a huge thank you to Dr. Adamson from CHOP, for leading us in the legislative battles that loom around and about childhood cancer. Your leadership truly blesses us. Please keep doing what you are doing… saving children’s lives. You help give clarity to the issues for those of us who want to learn what we can do to help stop childhood cancer.

Dr. Adamson speaking about the drug shortage on PBS News Hour:

 youtube.com/watch?v=-HciX6

Finally, I’m thinking that Dr. Adamson must be a pretty fun guy to hang out with. (I see all of you laughing!) Anyone with a sense of humor, (direct and to the point) like the one he shows below, has got to be okay! 

In the quote below, it appears that Dr. Adamson challenges Congress to complete passing this legislation in the same it takes for him to get children with ALL into remission. He is not joking.

FOUR WEEKS 

“I certainly understand that passing legislation is complex, difficult. I suspect, however, that it is no more complex or difficult than curing a child with cancer. And I can absolutely tell you it is no more complex or difficult than what children with cancer face everyday.”

~ Dr. Peter C. Adamson, Chairman, Children’s Oncology Group

 Emma Grace is someone fighting cancer today…

What a beautiful girl she is!

Let’s continue our fight for her and for all the other children fighting.

We are with you Emma Grace-- all the way!

Way to Yell, Kick, Click and Scream my friends!

It is clearly apparent that somebody cares. Nice work.

Yes… nicely done.

 

 

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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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