A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Braden Hofen’

Why I’m Rooting for the Kansas City Royals in World Series Game 7

 Braden's Hope Game 7 of the World Series is tonight!

I live on the Central Coast of California, three hours north of Los Angeles, and four hours south of San Francisco. You might guess that I would be routing for the Giants to win this evening, but this is not so. I admit I am a big Hunter Pence fan, but my heart and my cheers will be with the Royals tonight.

Why would a California girl not be cheering for her California team?

Besides being a big baseball fan my entire life, I am also a fan of “teams” founded to fight childhood cancer. One of my very favorite childhood cancer fighting “teams” is Braden’s Hope for Childhood Cancer. Melinda and I met Deliece Hofen, the founder of Braden’s Hope, four years ago. At the time, Deliece was in treatment for breast cancer while her son, Braden, was in treatment for Neuroblastoma.

Deliece is one of the brightest shining stars I have ever met on this Earth. Although she has had a mountain of challenges heaped upon her life, she has climbed to tremendous heights through her positive attitude, her beautiful faith, and her undying determination to help others. I love this woman.

Because of her tenacity, her persistence, and her utter brilliance, she has been able to help save her son’s life. Braden is a walking miracle. Deliece is a walking miracle herself!

Whatever could all of this have to do with the World Series tonight?

Braden’s Hope for Childhood Cancer is located in Kansas City. The Royals have always been huge supporters of this foundation. Before baseball games begin in Kansas City, the enormous screen with a crown sports a photo of Braden and George Brett laughing together while offering a Braden’s Hope Calendar for sale. The calendar has photos of “Hope Heroes” with Royals players. All proceeds go to helping Braden’s Hope for Childhood Cancer fund vital research for cures for our kids.

I love the Royals for their dedication to helping their local childhood cancer foundation, Braden’s Hope for Childhood Cancer. Being a major league baseball player comes with many perks. It is refreshing to see these players use their position of sports celebrity to spread human kindness into the world of suffering children. It’s the right thing to do.

What could make me change my mind? Hmmmm….

Maybe the Giants can begin supporting Unravel Pediatric Cancer, one of their local childhood cancer foundations started by another “mama” I love, Libby Kranz.

You see, I love watching baseball, but I love witnessing big hearts in action for kids with cancer even more.

Go Royals!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 Braden and George

Braden Hofen and George Brett

 Shared from: https://www.facebook.com/photo.php?fbid=10152654749620970&set=pcb.10152654758315970&type=1&theater

Guest Blogger: Lee Marchiano

 

 

 

 

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A Hero’s Welcome for Zach Hofen

 

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Zach Hofen is ten years old. Melinda and I first met Zach three years ago when we traveled to Kansas City, Kansas to participate in Braden’s Run, a fundraiser for Braden’s Hope Childhood Cancer Foundation. Braden is Zach’s younger brother. Braden was diagnosed with Neuroblastoma in December of 2007, the exact same month Melinda was diagnosed with cancer. Unlike Melinda, Braden’s fight against cancer continues to this day.
From Braden’s Caringbridge site:
“Braden was admitted to Children’s Mercy on Friday, December 28, 2007 after a visit to the ER for abdominal pain. A chest x-ray revealed a large white shadow across most of the right side of his chest and extending partially across the left side. A CT scan determined that it was a solid mass, which doctors suspect is a Neuroblastoma, a rare tumor found in infancy and early childhood.”
Braden has endured unimaginable pain and suffering, yet he continues to be an amazingly bright- spirited boy. Without any doubt, Braden’s family has been an enormous factor in his ability to stay positive and stay alive. His parents, Deliece and Brian, are more educated about Braden’s illness than many doctors will ever be. The Hofens have struggled through piles and piles of “bad stuff,” yet, incredibly, this is a family who gives other families hope. Deliece posts beautifully written pieces of her heart about Braden’s illness on Caringbridge and also in her blog, No! This is SERIOUSLY My Life! Amid all the chaos of treatment, they made time to found Braden’s Hope for Childhood Cancer, to be sure they would make a difference in the lives of many other children.
And this brings us to our hero, Zach. We don’t often think of the effects or the challenges of siblings of those battling childhood cancer. Most of their parents’ time and attention is gobbled up by caregiving. The household has illness living there; there are no “normal” days, yet they are still “normal.” They have constant terror from witnessing their brother or sister suffer and constant fear that death will take them away. In the case of this courageous sibling, Zach has made a hero’s choice and he has completed a hero’s deed. Zach is a bone marrow donor, and his recipient is his brother, Braden. Not only has Zach supported his brother and family with his wit and exuberant personality through the past difficult years, but he has given LIFE to Braden. Deliece says, “Zach is hilarious and has many “Zachisms”. He keeps us laughing every day! “
Zach and his Dad, Brian, return to their home from Children’s Hospital of Philadelphia in two days, on Friday, April 4. Family friends are planning a Hero’s Welcome for Zach! If you live anywhere near Olathe, Kansas, or if you are able to get there somehow, please, please give Zach the warmest, most sincere and grateful welcome home there could ever be!

Big Brother, Zach! You are a Hero!

Big Brother, Zach!
You are a Hero!

Details are in these links!

https://www.facebook.com/BradensArmy
http://www.caringbridge.org/visit/bradenh/journal/view/id/533c2331ca16b42c0269d871
https://www.facebook.com/deliece.hofen/posts/10152337426025970

 

 

Childhood Cancer Advocacy Momentum — Connect Connect Connect

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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

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Millions of Mini-Lights

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

Amid the turmoil and chaos that is childhood cancer there are millions of mini-lights. By mini-lights, I mean moments of intense joy and happiness. Today, I am so happy, I feel like the lights are more like a beacon!

Happy 7th Birthday Braden!

My buddy, Braden Hofen, turned seven years old today.  Not one of us can come close to imagining the battle he has been through. Braden may be only seven years old, but I look up to him. He helps me be who I want to be and who I need to be.  It’s easy to get our thoughts twisted around by the routine of living our daily lives—and then—someone brings us back to reality. Braden has taught me about reality, about loving, and about courage.

Today, Big Bear, as your adorable mom, Deliece calls you… I send you HUGE Big Bear Hugs.  Please hold onto them because I will be coming to collect them soon.

I want to share with you all of you the elation and joy we feel along with Braden’s mom on this day that many believed would never come… 

Deliece shared these feelings today:

*** So today is all about celebration and happiness!  Today is a day that I’m wearing my HOPE shirt and shouting “TAKE THAT cANCER” as loud and long and to as many people as I can!!  TAKE THAT cANCER!!! You DID NOT get today!! Braden wins this one!!!!

*** Thank you LORD for this day…truly a miracle! I was driving home from Price Chopper where I picked up his John Deere cake for his friends party tomorrow and was smiling and laughing so much I was bawling and had to pull over to get it together! Happy through my entire SOUL! Thank you Lord, thank you!!

Does anyone have any Kleenex nearby? Why is it that tears of joy feel so good?

Braden’s victories makes me want to work harder so that the day we find a cure will be closer. If we all work as hard as Braden has to fight cancer, I don’t see how the illusive cure cannot be right around the next corner. If Braden  can work this hard– remember he is still a kid–what excuse can we possibly have as healthy adults not to do all we can to stop childhood cancer?

Braden, lead the way my little buddy…

Braden’s Hope for Childhood Cancer

Happy Seventh Birthday Braden!

Isaiah Alonso Foundation asks us to “Like” this page:

Please “like” this page. LaFontaine Hyundai will donate $1 to childhood cancer research through Hyundai Hope on Wheels for every like!

https://www.facebook.com/LaFontaineHyundai?sk=wall

 

The Blanket Fairy

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

I want to thank Britta Fleeson for the very first nomination– The Blanket Fairy— for the Big Heart Red Carpet Award for this National Childhood Cancer Awareness Month of September.  I find this fascinating… it is just as I had imagined… The Blanket Fairy would never show up to any award ceremony because he/she operates anonymously.  I will admit that I have had the extreme honor and pleasure of meeting The Blanket Fairy, but I have sworn to keep the identity of this loving and talented person a secret.

It’s okay Blanket Fairy— it just makes all of us love you even more. Would you like to know what The Blanket Fairy does? He/she donates soft blankets of love to children fighting pediatric cancer.  He/she follows blogs, Facebook and sites like CaringBridge to notice if a certain child needs a lift and then contacts that child’s parents about a gift that their child would enjoy. Warm, soft blankets played a huge role in my healing!!!  To receive something like this must be a wonderful moment that lasts and lasts for a child with cancer.

What a perfect nomination!

Would you like to volunteer to help The Blanket Fairy in  some way?

http://theblanketfairy.weebly.com/volunteer-fairies.html

Do you have more nominations?

Everyone have their gold ribbons on?

Just checking.

Love you Braden!

For anyone asking me, “Melinda, why the heck won’t you be still about all this childhood cancer stuff?”   I can’t.  You see, each day, children die from cancer.  It’s horrifying to me that it takes so long for childhood cancers to be detected.  It’s unfathomable to try to comprehend why childhood cancer receives so little funding in comparison with adult cancers.  Less than 2% of federal funding for cancer research goes to childhood cancer research. This first video does an excellent job of helping you understand this point; the second one reminds us all that time is short, that life is precious, that we all have to give sacrificially until we find a cure.  Please give generously from your resources.

The Pie: Childhood Cancer

http://www.youtube.com/watch?v=fjp1es04qgE&sns=fb

Michael Tells it as it is

http://www.youtube.com/watch?v=PW20UOk4sqU&feature=share

 

Miracle Happy Dance!

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

The very first news I have to share is great, great news!

My buddy Braden Hofen received test results today… NED!!!!!  No evidence of disease!!!!!

Go ahead and do a happy dance, sing off-key at the top of your lungs, and if you live in a big city, stick your head out of the window and take a deep breath.  Ready? (This is for Braden, now…)

Yell, “Take THAT cancer!” 

This is 6 year-old Braden’s attitude, and I admit I love joining him in this sentiment.  You GO Braden, you Go!  For everyone who has been praying for him, thank you, thank you!

While we are on the subject of dances, I want to tell you about a 25 year-old woman named Jolene who has been fighting cancer since she was 17. On the tip-top of her “Bucket List” is to meet Ellen and dance with her on the show.  Well, some wonderful friends/angels came through with VIP tickets to the show on May 25th!  Now, her friends and supporters are posting a video on the Ellen Show Facebook wall showing her how much Jolene would love to dance with Ellen! They are asking people to please post and share this video:

https://www.facebook.com/video/video.php?v=2040929743405&comments

I hope you get to dance with Ellen, Jolene!

I don’t enjoy going from joy-filled news to disturbing, but I feel the need to pass this on.  I heard this story today about a woman who may have her children taken from her because she has cancer.

http://www.change.org/petitions/do-not-allow-nc-judge-to-take-alaina-giordanos-children-just-because-she-has-cancer

Finally, LIVESTRONG Community Impact Project voting has begun. When you click the link, you will be able to select a region and then vote for your favorite. http://vote.livestrong.org/

Just wondering. Do you still have colored hands for Brodie?

Sometimes miracles take a lot of prayer and a lot of work, but my goodness…

Braden…  NED…  Braden!

Miracles Do Happen!

LoveBug, Legislation and Beaver Dams

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

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

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