A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for the ‘Excerpts’ Category

Childhood Cancer Advocacy Momentum — Connect Connect Connect

>Image

My name is Lee, and I am Melinda’s mom. As a college sophomore, Melinda has responsibilities that make time for blogging difficult. Sleep is a rarity. The world of childhood cancer still goes on, which means this blog about childhood cancer needs to continue. Melinda has invited me to be her guest blogger until Pepperdine lets out for the summer.

Since the time of her treatment, six years ago now, we have worked together as a “team” to help children with cancer. Having a strong focus to help others was instrumental in Melinda’s physical and emotional recovery from cancer, and I have no doubt it has helped me as well. There is something indescribable about helping others when your very own self is falling apart. Isn’t it true we feel as humans that we need to have our act together before we can help anyone else; we need to have all of our “ducks in a row” before we have “extra” to output for others. The plain truth is, we are often more compassionate, more understanding, and more helpful when we are broken, mangled, or bent. Any parent whose child has fought childhood cancer falls into this broken, mangled, or bent category. I am no different. My heart will never recover from the terror of Melinda’s suffering. But… I will rejoice every moment of every day for the rest of my life that she has come through the suffering. I intend to take this mangled heart of mine and form its love into a huge, fierce fire– a fire that will light the world of childhood cancer.

The childhood cancer community is a community no one chooses or dreams of joining. We are “drafted.” Not long after I was drafted, I realized I needed to “Enlist.” My love for children is so deep, so great, so overflowing, that I have no choice but to help these children in every way I can. I will admit there are kid parts of me that have never grown up. I have been known– on many occasions– to randomly and suddenly break into a skip. This is just one thing I love about kids; they teach us joy. They teach us about what we have discarded and left behind in our adult lives. When that adult reserve kicks in and tells me not to skip next time, I plan on inviting it to join me!

I want to express my thanks to moms and dads in the childhood cancer community for sharing your daily lives through social media. I feel I know so many of you, just from following. You have given me a better understanding of the problems, pressures, and battles you face each moment of each day. I want you to know how much I care. I want you to know how hard I will work for change. I want you to know you are not alone.

Finally, I am excited about the momentum that is building. I am honored to know many of you who work your tails off so that there can be newly funded research for less toxic treatments. I am amazed by the courage of so many of you who have lost your children to cancer that now run foundations to help the kids. After five years of my personal advocacy, it’s clear to me that the tides are beginning to turn. Four years ago, a dear lady named Christine began a campaign intended to raise awareness of childhood cancer. She was inspired by her friend, Deliece Hofen and her son, Braden, who is currently undergoing a bone marrow transplant. The campaign aimed at getting Oprah’s attention for a segment on her show and was called, “Oprah, Please Do A Show On Childhood Cancer.” Within no time, the childhood cancer community came together with a loud voice. Unfortunately, Oprah did not answer our pleas to help raise awareness. She had never done a show about childhood cancer and never did one before the show went off the air.

Recently, the outcome of our cohesiveness did bring about something extraordinary. “Under intense pressure” from social media and grassroots, Josh Hardy was able to get the medicine he needed, but had been denied. Another beacon of hope for progress is the Gabriella Miller Kids First Research Act. Because we are connected and engaged with each other in our community, we are beginning to achieve some success. This means we have opportunities to save kid’s lives! This means we can build even more momentum for avenues of change.

Josh Hardy

http://video.foxnews.com/v/3329179339001/7-year-old-cancer-patient-receives-new-drug/#sp=show-clips

The Gabriella Miller Kids First Research Act

http://www.foxnews.com/politics/2014/03/11/congress-passes-bill-to-support-childhood-cancer-research/

Yes, let’s connect, connect, connect so we can achieve as much as we possibly can. Childhood cancer is the #1 cause of death by disease in our country. Seven children die from cancer every day here in the United States and over 40,000 children are currently in treatment. Many of these children fight for years. Many of these children suffer even more from the effects of their treatment than they do from cancer.

To all my fellow onc-parents, I love you and your children.

“Charge!!!!”

Please leave your contact on this page so we can all connect.

Facebook: https://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076?ref=hl

Twitter: https://twitter.com/1ballerina

            https://twitter.com/HappyQuailPress

 Image

 

 

Advertisements

“Failure Is Not An Option”

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

 

 

 

 

 

 

May the children suffer no more….may parents forever have their children…may all who turn a blind eye and think that this will magically happen by itself have their minds and hearts opened to who will actually propel change- them…us…you…me… ♥ ~Melinda

 

This is an excerpt from PAC2’s interview with Kathleen Ruddy, the Executive Director of the St. Baldrick’s Foundation.  This year, St. Baldrick’s has raised over $32 million dollars for pediatric cancer research. I cannot mention fundraising and St. Baldrick’s without giving a huge shout-out to ladies I love with all my heart, the 46 Mommas. I love how Kathleen Ruddy compares the mission of winning the “war” on childhood cancer to previous U.S. ambitious missions, like going to the moon…

In 1961, when President Kennedy challenged America to send a man safely to the moon and back by the end of the decade, he didn’t say, “but only if we stay within a certain budget.”  The goal was the moon, and the reason to shoot for the moon was to expand human knowledge, extend man’s exploration, and advance science.  He also acknowledged it would be hard and expensive.  We have no less ambitious a mission, and probably a more difficult one.  It’s also more precious as our children’s lives depend upon it and with them, our future.  

The notion of shared sacrifice is something our organization was built upon.  The World War II generation understood that each citizen must work and sacrifice together to achieve victory.  Our country came together again to win the space race.  It’s time we pull together again to finally win the war on cancer, and ensure that children fighting cancer not only survive, but thrive. 

This excerpt makes me think of a lot, including my brother Nicholas. When he was ten years old, someone asked Nicholas what his favorite movie was.

He quickly answered, “Apollo 13.”

(Yes, the person’s jaw dropped as he pondered the uniqueness of this ten-year-old’s choice in movies!)

 My brain dinged and chimed with quotes from Apollo 13 as they spun like pin-balls and connected to the world of childhood cancer…

 ***Funding for pediatric cancer research is critically low. Children have NO VOICE.

 “Houston, we have a problem.” ~Jim Lovell

 ***Far, far too many children are being tortured and taken away…

 “So long Earth. Catch you on the flip side.” ~Jack Swigert

***Kathleen Ruddy is correct. If our country will pull together with meaning, purpose, focus, and sacrifice, we can win the war against childhood cancer.

“With all due respect sir, I believe this is gonna be our finest hour.” ~Gene Krantz

***With seven children dying each day from cancer in the United States, it absolutely must be time—right now—to pour money, time, sweat, and guts into ending childhood cancer. We must treat this reality with the urgency it requires. Because…

“Failure is not an option.” ~Gene Krantz

Failure really is not an option. Warriors, like Lane, continue to fight while we either decide to act, or stand aside.

United States Flag for Lane Goodwin

Update for Lane:

“This morning has been a little better. Lane is a lot more lucid & calm 🙂 God is working really hard through Lane, us & others to bring awareness/funding/ cure to Childhood Cancer! We had a wonderful visit with Congressman Ed Whitfield, District Director Michael Pape & Field Representative Edward West. Lane was sleeping but he was excited to get the US Flag that was flown over the Capitol in Honor of him. We will have a big announcement this weekend :)”

Please feel free to copy, paste, and tweet!

We call the #NumberOneDiseaseKillerOfChildren in the U.S. #Rare #SoundsPrevalentToMe #ChildhoodCancer #FundPediatricCancerResearch

 

 

Go Ahead… Jump In!

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

Today is a gratitude day… as grateful as every day has been since my outstanding medical team helped rid my body of cancer. My three-year scans just came back “All Clear.” For Dr. Dan, Nurse Pam, Nanci, Robyn, Zippy, Jaynie, and everyone else at Cottage Hospital, I give you my love and thanks! I apologize for not being a “normal” patient and thank you for dealing so “gracefully” with my Melinda-ness!

Rather than let “Survivor’s Guilt” overtake me to the point where I cannot function to help others, I have found it necessary to tweak that thought and those feelings into action that will help. The hardest part of all for me is knowing of children who die each day from childhood cancer– knowing the suffering they have faced and the suffering of their families. There is no “Half-Way” point of caring about childhood cancer patients… either you jump right in and become submersed, or you stand on the sidelines with little understanding of what is truly going on.

Fair warning: Jumping in will give your heart the ride of its life.

Truth: Jumping in will bless your life with truly remarkable heroes!

Children's Healthcare of Atlanta making Children Happy and Health

I just read this news from PAC2 about Andrew McDonough B+ Foundation ! Does it get any better than this? Dancing to raise money to fight childhood cancer??????????? Northwestern University– thank you for jumping in! Happy Dance Time!

I will rewind life a bit for my next posts so that I can begin sharing more about the Hope Tour after we left New Orleans. 

Children's Healthcare of Atlanta

Yesterday and Children for LIVESTRONG

What a great day yesterday! Thanks so much to everyone who stopped by– I loved seeing you and you will be happy to know that we raised lots of money to fight cancer:):):) Awesome!

Becca, I want to thank you for your amazing Emcee job. And Emily, you stepped in out of nowhere and gathered lots of folks to enter the drawing! Cindy, your guitar and harp and beautiful voice added everything. Meghan, Hannah and Teagan, you did a great job with the bake sale; thanks so much for all your time and effort. Becca, your Teddy Bear cupcakes were absolutely adorable!

Sheila from the House of Bread, those cinnamon rolls were delicious; we appreciate your donation for our bake sale very, very much:)

Thank you to the Dutton family and Let’s Party! for the huge bouquet of  yellow balloons! As we cleaned up and began snipping them from their spots throughout the area, we gave them to children passing by and their faces– oh my gosh– you made some children very happy and you made me happy too!

Thank you to Layla from Dolphin Bay Resort for donating Brunch for Two at the Award-Winning Lido Restaurant for our drawing and to Bud Johnson (Hi Poppy– love you!) and Monarch Dunes Golf Resort for donating a Golf Package for 4 with cart. Thank you to Ms. Metchik and Nipomo High School Drama Department for donating 8 tickets to “Nunsense,” Mr. Rodrigues for the adorable Mini BBQ that I wanted to win–but didn’t– to John and Linda Thunen for the wine, to Mr. Claverie for the donation of original pottery pieces, to Peggi Carlock & Ron’s Nursery for the figurine,  to Lyn Moreno for the handmade quilt and table runner, to Gwyn Kelly for the candle centerpiece, and to Yoga Centre for donating lessons to three winners.

Finally, thank you to Mr. Hubbell, Mrs. Furakawa, and the NHS Key Club for your enthusiastic support and dedication to make this event a successful fundraiser. Mr. Hubbell, somehow I know that Lance would be so, so pleased if he knew how you came along beside me in this project and truly lent a helping hand. I am grateful. I am really, really grateful to all of you.

I just realized that I didn’t ride one of the Blender Bikes that Jamba Juice had set up… seemed like lots of fun.

I told Mom on the way home yesterday that Children for LIVESTRONG is going to be so big next year, we’re going to need Mission Plaza!

The Shrinking Pocketbook

I have touched on the subject of how a family’s finances get wiped out when their child has cancer. My health insurance company played nasty games.  Money is the last thing a family needs or wants to think about when their child is fighting for their life. What a horrible shame it is when people pay their health insurance premiums for years and then find it necessary to go into battle to receive coverage when they become ill. Childhood cancer is so much more than a child’s battle to stay alive– there are ugly monsters everywhere you turn and medical bills and insurance coverage are two of the big ones.

My parents never talked about money in front of me during my illness; I guess they figured I had enough to deal with. The way I see it, they had plenty to deal with of their own. I remember hearing my mom say one time that she didn’t care how much it cost… she would, “scrub toilets till I’m 90” if she needed to (in order to pay for my medical bills.)

This is something I really don’t get. Why is it that when a child leaves the hospital after a serious illness like cancer, their family is responsible for enormous medical bills– even when they have “good” insurance? And then, at the same time, if a prisoner needs medical care, our taxes cover it.  This twists my brain into shapes it really shouldn’t twist into!  Wouldn’t you agree that we need to switch this around? Let’s have our taxes cover treatment for children with serious life-threatening illnesses and make prisoners responsible for their own medical bills.

Having been “down the road I’ve been down,” I can honestly say that I would love to see our healthcare a top priority. What good are roads and schools if we are too ill to use them?

LIVESTRONG at School

I love that LIVESTRONG has an educational program for school-age children. If you are a teacher, please consider taking a bit of time to educate your students. There is age-appropriate material, according to grade, and LIVESTRONG makes everything very easy for the user. Teachers can even get a free poster from the LIVESTRONG site when they teach material. 

http://www.livestrong.org/What-We-Do/Our-Actions/Professional-Tools-Training/For-Educators/LIVESTRONG-at-School-Curriculum 

One of the reasons I think it is extremely important for this information to be taught in schools is because nearly everyone’s life has been affected by knowing someone with cancer. Teaching children care and compassion for others at a young age needs to be a priority. This LIVESTRONG curriculum can help children truly understand what cancer patients are going through, and they will learn how they can help. 

When I returned to school after my treatment had ended, it was rough. It was rough with a capital “R.” I’m not sure who it was rougher on, me or my mom– who had to go into serious battle with the school district– so I wouldn’t die. If there are any cancer patients out there reading this who are about to return to school, or have returned to school and are having problems, my mom has some incredible letters that you are very welcome to use– so you won’t die. 

From Grace: A Child’s Intimate Journey Through Cancer and Recovery: 

School had become too much. Almost immediately, Mom and I realized that attending school for the entire day wore me out to the max. However, with Mom’s requests that I cut back my hours, the school system began to show their ugly side. Soon, they had my mom jumping through rings of fire, like some sort of crazy circus act.

  

Boy do we need “Awareness”!!!!!!!!!!!!!!!!!!!!!!!!!!!! 
 

 

Happy Birthday Dean!

My brother, Dean, is 19 today. He’s getting ready to go back to Westmont College this weekend. I have loved having him home for the summer!!!!!

When we were little, Dean and I would play together every day. We both loved stuffed animals, and we would play with them for hours. Sometimes they explored our backyard, sometimes they played baseball on the field we mowed perfectly into our lawn, and sometimes they were entrepreneurs with Starbucks Stores set up complete with plastic croissants, little Starbucks cups, and of course, cash registers.

Sometimes we would spend all day writing intricate stories, or we would make up plays or movies that our stuffed animals would act out. Other times we would gather everything we could find in the recycling bin, grab our duct tape, and enter the world of creating out of cardboard and plastic. When we were in the car together, we would play, “Make me Laugh,” with one trying to do something that would make the other crack up. One of my mom’s very favorite activities of ours (sorry Mom!) was gathering every pillow and cushion in the house into a “Jumping Pile.” We would fling ourselves onto the soft mountain and roll down it… ahhhhh… fun, fun, fun!

Today, as I watch this brother I love so much hop  into his ’92 Honda Accord and head to the beach with his surfboard next to him, I feel grateful. To have not only one, but two brothers who bring me joy is something I will never, ever, ever take for granted.

Happy Birthday, Dean! This Mushy Quail loves you so much!

Tag Cloud