A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

Croak Cancer, Croak!

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

Swirling feelings from many directions have me spinning a bit today. I am very, very excited about being one of 251 people throughout the world who have been chosen to be 2011 LIVESTRONG leaders. At 7:00 am, I listened to my very first LIVESTRONG conference call. May I please admit that one of my favorite things about the experience was hearing different accents from all over the world? This is something I love about LIVESTRONG—they see cancer as a “global threat” that needs immediate attention. Truly, the entire world needs to notice, needs to learn, and needs to act now to fight cancer.  I am grateful for this opportunity to help LIVESTRONG make survivors stronger each day… and most of all, for the opportunity to help make cancer so weak that it croaks.

Yes… I wish cancer would croak.

As this day has progressed, I received news… bad news. I have an event scheduled for this coming weekend for the University of Art in San Francisco; they are raising money for the University of San Francisco’s Children’s Hospital. For a couple of months now, I have been communicating with a lady named Rachel who is planning this event. I haven’t heard anything from her for the past two weeks—until today. She has been spending countless hours at USF Children’s Hospital because her nephew, Sy, was diagnosed with a rare form of cancer two weeks ago. She has been planning this event out of the kindness of her heart to help fight pediatric cancer, and now, she is personally affected by the horror of  her loved one being struck by this terrible beast. Please pray for Sy.

To top off the swirling, I received mail today. I received Breanna’s program from her memorial service. Her mom, Helen, was very kind to send it to me.  I cried looking at her photos. I cried looking at her smile. I cried imagining what her family is feeling. I cried to know that she fought so hard, suffered so much, and now she isn’t here.

Yes… I wish cancer would croak.

Croak Cancer, Croak!

My buddy, Braden Hofen is telling cancer to croak too. In his own words, “Take THAT cancer!”

Go Braden! Go Sy!

Braden says, "Take THAT cancer!"

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I Want to be a Mommy Someday

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

“It may sound odd to discuss fertility issues still decades away as parents agonize over whether a child will live or die.”

 

When a child is diagnosed with cancer, one of the very last things on parents’ minds is what cancer treatments might do to their child’s future fertility. Even further from their minds is investigating what might be done before their child begins treatment that might help their child become a parent in the future, if they should choose to do so.

Dr. Kyle Orwig, of the University of Pittsburgh is leading a study to help preserve young cancer patients’ fertility. Being the Biology/Chemistry nerd that I am, I find all of this fascinating. Further, Dr. Teresa Woodruff of NorthWestern University’s Oncofertility Consortium is working with young female cancer patients to protect their fertility. Most of us have heard of freezing eggs or sperm, but these researchers are going beyond to find help for those children who have not yet reached puberty. Girls are born with all of the eggs they will ever have, but these eggs remain “immature” until puberty… so harvesting for the purpose of fertilization is not currently possible.

I send my sincere thanks to Dr. Orwig and Dr. Woodruff. Thank you for your efforts, not only for saving the lives of children with cancer, but for clearly focusing on future quality of life issues for survivors.

Once again, my heart goes deep into parents’ hearts out there… to those who must keep making health care decisions minute by minute for their child with cancer. There is so much to think of… and now here is one more thing.

Oh how these parents love their children!

There is help and there is hope brewing– fertility preservation for future childhood cancer survivors. I know, without a doubt, I would love to be a mom someday.

I pray that one day God will grant me this gift, this blessing. I pray more survivors will receive this same blessing as dedicated, caring researchers work toward this goal.

http://www.charter.net/news/read.php?rip_id=%3CD9LQI4S01%40news.ap.org%3E&ps=1018

Carley Parker... Ballerina & Survivor

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The Incentive is Love, not Money

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

I just conducted a very interesting childhood cancer experiment. I Googled “Childhood Cancer News.” The results I found are puzzling, and frankly disturbing.

 

The first article I found is dated October 11, 2006. Yes, really. Let’s see… nearly five years have passed, but this is listed at the top:

“ABC News: “Dark Side of Being Cured of Childhood Cancer”

If you do read this article, notice that it mentions Dr. Anna Meadows… the doctor I have written of before, telling how much I admire the work she has done in the area of childhood cancer survivorship. As more children are “cured” of cancer, this area of childhood cancer survivorship and quality of life issues will become something health care professionals must address.

“Today 80 percent of children with cancer become long-term survivors.”

“By the time survivors are 30 years out from their cancer diagnosis, however, almost 75 percent of them have a chronic health problem and 42 percent die or have severe life-threatening conditions.”

Hmm…. a little unsettling, no?

I love what Les Robison has to say:

“The No. 1 lesson is that we have to pay attention to long-term consequences,” said Les Robison, chair of epidemiology and cancer control at St. Jude.”

We desperately need less toxic therapies that will still assure a cure, but won’t leave permanent damage. Still, nearly five years after this article appeared in print, it is “current” news for childhood cancer.

Really? Really, really?

The reason?

Drug manufacturers cannot find a way to profit from the development of new, less-toxic treatments for childhood cancers… if they cannot profit from it, why would they ever do it? Instead, they stick to the development of new therapies for adult cancers that they can make huge profits from.

Arms Wide Open Foundation, established by Dena and Billy Sherwood, is on a mission to change this. There is even pending legislation that will hopefully encourage companies to take the plunge into helping children with cancer with incentives.

I can think of forty-six “Incentives” —the number of children diagnosed with cancer in the United States every school day.

I can think of seven more “Incentives”—the number of children who die from cancer each day in the United States.

A child’s life is worth so much more than “Incentives.”

Cure Childhood Cancer

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Burr Under Your Saddle?

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

Do you ever feel like you need a large dose of reality to keep your life priorities in order? Just in case you do… or maybe even if you don’t think you do, I know where you can receive a swift, long-lasting dose.

Click:

http://www.facebook.com/Oprah4KidsCancer

There are so many stories. I guarantee your heart will not want to read the stories. I guarantee it will be hard and heartbreaking. I guarantee if you push yourself through it and truly take in the meaning of these stories, your life will receive a huge Gift of Life Prioritization.

“Aniel French received his wings yesterday and we found out his closest friend Alex Brown is waiting to receive hers… their bravery and faith is and was unfailing and an inspiration to all that knew them, including their doctors and nurses.”

This, my dear friends, is the world of childhood cancer.

Imagine being a child, fighting the horrific disease that is cancer– and on top of it all—losing your closest friend to the same dreadful illness.

… and we get a Burr Under Our Saddle when we have to “do chores.”

Right about now, I am thankful I am able to do chores.

And you? Be truthful.

Do you need a Life Prioritization Gift to get that Burr out from under your saddle?

Go ahead. Click. Read. Be moved. Cry. Be changed.

Don’t you just know we all have so much more to give than we are giving?

I do.

Nine Boxes of HOPE

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You Do Not Have a Soul

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

Destiny Freeland was diagnosed with Stage IV Ewing’s Sarcoma… she has been through surgery, chemo and radiation treatments. I want you to look at her smile; I want you to look in her eyes. Inside of that People Shell that is giving her so much difficulty is her beautiful soul. Does it boggle your mind as much as it does mine to see Destiny with such pure tranquility in her eyes?

After I wrote about People Shells, I came across this quote:

“You do not have a soul. You are a soul. You have a body.”
~C.S Lewis

Through Destiny’s eyes, I see that she already knows this. She is not her body.

I believe this same enlightenment lives within all children who fight cancer or life-threatening diseases. They know they are a soul. They know the delicateness of life, they know their life purpose… they know there is only time for love. I can see it all through their eyes– the windows to their souls. I absolutely love the honesty and the purity of their souls.

Somehow, these children know that their bodies are temporary shells. Somehow they know that they have an important mission here on Earth. How is it possible that the smallest and sickest are working the hardest to teach us life truths?

It is time for us to follow their lead. Let’s start taking notes.

Imagine if each of us had that same honesty and purity in our souls… oh beautiful World!

Thank you for teaching us Destiny

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Logjam

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

When I miss communicating with you for a few days, I get all messed up. It’s like all of the things I want to share with you get plugged up like logs in a logjam. Then, in order to share my “logs” in an orderly fashion, I have to straighten them out of their tangle before they will proceed with any recognizable order.

Let’s see… Log #1 out of the gate…

Did you hear that Lance Armstrong has retired from professional cycling to dedicate his focus to fighting cancer? Most of you know how much I admire Lance and how much he inspired me during my treatment and recovery. I have seen stories in the news recently of Lance visiting children’s hospitals… can you guess where I am going with this? I sure would love to see LIVESTRONG expand their STRONG ARM in order to devote more of their efforts to combating childhood cancer. I think it’s great that they have the very unique LIVESTRONG at School where teachers can download age-appropriate materials to help their students learn about cancer. Did I tell you that I applied last month to be a LIVESTRONG Leader? Giggles… I forewarned them that I would be “infiltrating for the advancement LIVESTRONG’s childhood cancer subdivision!”

Log #2… untangling…

My mom and I have been working with a great guy, Benn, who is designing a new website for me where people can buy Grace: A Child’s Intimate Journey Through Cancer and Recovery. The site is www.melindamarchiano.com

Log #3… straightening…

We did some research before we chose a merchant processing system and we are very excited to tell you that we decided on a Give Back program that benefits Children’s Miracle Network Hospitals. Cottage Hospital is a Children’s Miracle Network Hospital and the people there saved my life… we love this choice!

Most importantly of all, I am thinking of and praying for all of the children who are fighting cancer and recovering from cancer today. I am thinking of the families who love their little warriors and who would go to any lengths to help them in any way. I am thinking of those brothers and sisters whose hearts are crushed by the site of suffering.

And for the moms and the dads who keep pouring out your love… till it can only come out in a drip… may God bless you and fill you up to the top again with His Living Water.

Prayers for Savannah

 

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Toss The Match

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

It will not be long before I begin my United Way grant project. One extremely important message that I want to be sure to let the students know is that they are able to do great things. Good things take a lot of time and a lot of effort. Sadly, it seems like many people in our society look for the Easy Road.  In fact, there are people who will spend tons of time and effort pursuing the Easy Road, rather than buckling in for the hard work it takes to create something of value. This is misleading and damaging to our youth.

Melinda’s Message #1:

Work hard to create something of value.

This hard work can take a multitude of forms—from studying hard to become the best student they can be– to recognizing a need in their community/world and dedicating their time and effort to fill that need.

This is my belief: Kids have tons of energy, creativity, joy, passion, and love inside them. They want to be able to help people; it makes them feel value. When kids give from their hearts and feel their lives have value, there is no stopping what they can accomplish to make our world better for all of us.

Sorry… here is Melinda with the “Raw” truth again.

“Work hard students.”

I am sure some students will want to run and hide, but there will be those kids who have kindling inside them… just ready to ignite…

Can’t wait to Toss the Match!

“Don’t let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity.” I Timothy 4:12

Prayers for Morgan...

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Where oh Where is There Great Information?

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

I have a question for you. Where do you go for up-to-date, accurate information about childhood cancer? Where can you look for important facts, pending legislation, a list of resources, a summary of what other childhood cancer foundations are doing, personal stories, and much more?

People Against Childhood Cancer, or PAC2.

This organization was started by someone I look up to. If I am looking for answers to important questions about childhood cancer, this is the man I ask. And you know what? He always, always, takes the time to answer my questions with sincere helpfulness. I appreciate the way he takes lots of information from many sources and synthesizes it into a meaningful package. I love how it is a place for many organizations to share their voice.

I love how this man has given his heart and soul to make the world a much better place for children fighting cancer. I love how this man is working his ever-loving you-know-what-off to do all of this and, at the same time, raising money in memory of his son to fund pediatric cancer research.

The man I am speaking of is Bob Piniewski.

Here is a great opportunity to help him in his current efforts to stop childhood cancer… Bob will be shaving his head to raise money for St. Baldrick’s.

http://www.stbaldricks.org/search/everythingresults/searchValue/bob+piniewski/submitEverything/Search/

Right now, before you move on with life, click that little linky-dinky above. Please consider what you might do without this week so that you can donate even $5. Think about the sacrifice that my friend, Bob, has made. Please think about the children who truly need our help. Please give what you can.

Thank you Bob, for everything…

Please help Bob raise money for St. Baldrick's in memory of AJ

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May God Bless Onc-Moms

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

Today, I am thinking today of all of the moms of children fighting cancer. Somehow, these moms manage to become Superheroes while they prepare for battle against the Monster that is childhood cancer. In a time where most people would emotionally fall apart, these moms find super-human strength in their bodies and spirits. They want to take the disease themselves; they want to protect their child at any cost.

 

When they are tired, they push on. When they are lost and broken, they find the strength to show their child the love in their heart. When they cannot utter a word, they smile to let you know everything will be okay. When their child is helpless, hopeless, and hurting, they snuggle up next to them and hold them like they will never let them go.

Dear God,

I pray for your great blessing on mothers who have helped their children with cancer. Lord, I pray for your tremendous love and power to enter their hearts to help them with all they have to process and all they have to accomplish. I pray you will give them hope, clarity, peace and strength. Please give them wisdom to recognize the needs of their children and help them to know that the job they are doing is a direct calling from you.

Finally, I ask you to bless my mom for all she has done for me. Please bless her on this day–her birthday–and always.

I pray this with deep gratitude,

Amen

The news from Savannah’s CT are not good… please pray for Savannah.

http://www.caringbridge.org/visit/savannahswandal

 

Please pray for Savannah

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Thank you Dr. Anna Meadows

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

Rolling along on the same subject of survivorship, I want to tell you about Dr. Anna Meadows. In 1962, at the age of 31, she wrote to the dean of Harvard and told him of her desire to become a doctor. The response she received was to stay home with her three children. Fortunately, for many childhood cancer survivors, Dr. Meadows did not take this advice. She achieved her dream.

 

Dr. Meadows will be honored at Children’s Hospital of Philadelphia for her 38 years of distinguished service and contributions to the world of childhood cancer. She is fondly known as the “matriarch of childhood cancer survivorship.” I hope she has inspired many others to follow her lead in recognizing the importance of studying and lessening late effects from childhood cancer treatments.

And now, a personal story about Dr. Meadows. A year ago, I was doing a lot of research about childhood cancer. From all of this research, I chose people and organizations that I wanted to ask to look at my book for a possible endorsement. Well, when I found Dr. Meadows and saw all that she has done—she really stood out! My mom picked up the phone and called her.

Guess who answered?

Dr. Anna Meadows herself.

What a lovely woman she is! Her schedule did not allow her time to take a look at my book, but my mom truly enjoyed her conversation with Dr. Meadows. This is going to sound really weird, but I will admit I was truly happy she didn’t have time.

This meant she was taking care of the children!

Thank you Dr. Meadows… is there some way we might clone you before you retire?

 

*Jade’s surgery went well. Thank you for your prayers…

Jade Waiting for Surgery

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