Festival of Trees

I had the privilege recently, of attending the annual Festival of Trees- an annual event to benefit Brenners' Children's Hospital. This year's theme was birthdays to celebrate Brenner Children's Hospital's 25th birthday. The hospital was established in 1986 by Abraham Brenner. He and his brothers went into the iron and steel business in 1935 and started a foundation for charity work in 1961, eventually leading to funding the hospital. Abe Brenner died this week at the age of 93 of old age. His son Frank says, "He was an exceptional role model who looked after everyone else before he looked after himself."  A true example of a life well lived. Thank you, Abe! Godspeed and rest in peace. Happy Birthday Brenner's! 

Stacy (from ChildLife) was hosting a table to educate people about the Beads of Courage program and raise funds to help the hospital expand the program beyond the oncology department.  She invited me to share about Julia's personal experience with her Beads. It is their hope to be able to one day use this program in other departments to include children with serious illnesses such as cardiac issues and cystic fibrosis.

She set up a table to display many of the beads, journals, bags, and also pictures from Julia's journey...

I was so blessed to be able to share our experience. Julia's beads have been life changing for her this past year, as she faced some of the toughest months of her life with her recent surgeries, complications, and adjustment to daily procedures. Her beads gave her a voice to put words with the feelings and memories she was trying to work through. They gave us a tangible means of acknowledging the struggles she was facing and the bravery she showed.  And they became a motivator for her to face her fears head on. I could never say enough good things about this program. So any chance I have to say it out loud, I just can't wait.

These two lovely ladies were some of the first we spoke with. They were very interested and wanted to know more. As I told them about Julia they both began to cry. It still stops my heart for a moment when that happens. Seeing people care about your child like that is so meaningful. Not only were they moved, they were excited to help the program, to share it with others, and to encourage us. Thank you both! And I really appreciate the hugs, too.

The themed trees being auctioned were so beautiful and creative...

and I loved the gingerbread houses! Wow!

So many awesome displays and I love how they kept the true meaning of Christmas at the center...

and some fun, too!

We have some new ideas for our houses this year...

The Loop and LEGO Night

We had a fun night at The Loop last month at our fundraiser for the Kids of Childhood Cancer Foundation.  A sweet night of yummy food with good friends for a great cause... 

These two bring a smile to my face every time I see them together.  They are so much alike in everything they enjoy doing, the way they play, and what they say.  Two peas in a pod...

If you would like to join us at future fundraising events, please check out the Events Calendar on our website.

It's events like these that allow us the funds to help touch the lives of the cancer families at Brenners'.  We had a wonderful LEGO therapy night last month.  It is such a fun and healing time for the patients, their siblings, and the parents.

 

 

And we hope everyone is voting this month in the Pepsi Refresh Project.  We are #4 in the running for $50,000 toward our dream of owning a beach house to use as a safe haven for families of kids battling cancer. The top 10 ideas receive funding.  You can vote daily through facebook and text.  It's that easy!  CLICK HERE and log in to vote.  Thanks for all your support and votes!!

CureSearch Walk

Last weekend we had our first local CureSearch Walk.  It is so inspiring and exciting to bring this event to our area and our hospital where we can take a day to recognize the courage of our cancer warriors, remember our angels, and work together for a cure.  It is the epitome of HOPE.

The morning started early with beautiful fall weather and sunshine...

Desi and Julia...

Mr. Incredible catching up with Haley...

Jim Steiner is our Southeast Regional Cure Search director.  We are so blessed by his work and dedication to this cause...

Our own Dr. Mclean sharing a little of his vision and dream for pediatric cancer research. The treatments all of our kids receive are the result of discoveries made in the lab.  Most of our children are a part of clinical trials that enable this research to move forward to new breakthroughs, safer treatments, and better survival rates.  At CureSearch 96% of the money raised goes DIRECTLY to research.  This is how we cure kids' cancers....

Then it was time to take a moment to remember the angels.  All the courageous cancer kids whose healing came in heaven.  So many of our dear friends.  Julia wanted to send a balloon to Kate in heaven and tell her that she prays for her and her family everyday.

Watching those balloons drift away is excruciating.  Remembering all the little lives lost and the siblings, parents, and friends left behind who will never be the same.  We can never stop fighting.  The battle rages on and we will never give up.

Then all of the survivors and kids still in treatment come forward to receive their medal from a few of our medical staff.

Then it as time to walk! A huge thanks to everyone that supported Team Julia.  Your generosity is humbling.  I am excited to say that our team was in the top 3 fundraisers!! (Thus the fancy headwear) And a huge thank you to Brenda, Yvette, and the Dillard family who came out to walk with us.  You are all awesome.

A few of the precious faces of fighters and friends...

Julia was so proud of herself for walking over a mile.  At our last walk she didn't have the strength and this time she was in the lead.  All that walking, of course, makes a girl hungry. While mommy was painting faces, Julia was hitting the Krispy Kreme table.  I lost count around 18 donut holes...

Caught in the act.  Guilty :)

A few of the tshirts from the day...

I am excited to share that our first walk raised $10,750!!!!

National Childhood Cancer Day ...and Mackenzie

Today we remember all those fighting in the trenches of cancer, all those angels who have earned their wings, and all those survivors who carry their scars and move forward each day with hope for the future.  We are wearing our shirts...

This picture was drawn by another Wilms' Warrior- Mackenzie, age 6.  Here is her story, in her mother's words...

Madyson and Mackenzie were born that morning. Madyson arrived at 3:24am and shortly after at 3:53am Mackenzie was born. Twins. Born into the state foster care system. They were the 15th and 16th babies this birth mom had delivered. All of the surviving children were adopted years before. The phone call continued. “ The bigger one is being discharged tomorrow and the little one will have to stay for awhile. If you would like, you could take just one” Seriously?? How could twins be split up? Who could do that? The state foster system could do that because there are never enough foster parents and placing one child is easier than placing two. They said they would give me 40 minutes or so to call them back because they really needed to secure a placement for the baby being discharged. Our lives were changed forever. Within 7 weeks, adoption papers were signed and they were baptized at Guardian Angels on June 24, 2001.

Mackenzie was diagnosed with a Wilms Tumor on April 5, 2006- a few weeks before her 5th birthday. Her tumor pathology was Stage 2- favorable histology. She had her left kidney removed and completed 18 weeks of chemotherapy without any complications. During her off treatment scans we found out that a new tumor was growing in the left kidney bed. We also found out that our hospital had not sent her tumor to the Central Review lab and she had been initially misdiagnosed. Her tumor was actually Stage 3- Anaplasia. She should have received more aggressive chemo along with radiation. 

Mackenzie finished the correct protocol in February 2007 but we were told that not treating her properly upon diagnosis could affect her chances of a cure. It was recommended that we switch to a children's hospital, so we did. In August 2007, Mackenzie's 6 month off treatment scans were clear or so we were told. Within 3 weeks, she had an inoperable tumor in her abdomen. Upon reviewing the August scan it was clear that a 5 x 5 cm tumor was missed by the radiologist. Another hospital and another mistake. This mistake would be the begining of trying to shrink a very large mass. Mackenzie endured months of high dose chemo only to eventually find out that the surgeon could not remove the tumor. It eventually started to grow again and our beautiful daughter took her place in eternal bliss. Our hearts will always ache and our lives will never be the same without Mackenzie.

I think back on that day often and how one phone call and one decision changed the course of our lives. Was it just meant to be? Was this God’s perfect plan that I routinely question now? How does a perfect plan involve so much sadness and loss? I suppose one day I will have all of those answers that I need until then I have no choice but to trust that He knows what is best. 

So how could twins be split up?? Cancer splits up twins.

Mackenzie drew the picture on our shirts just days before she earned her angel wings.  


So today we carry the torch forward for Mackenzie and all the other Wilms' Warriors who have fought with ALL they have.  It is because of so many children and their families that we have the protocols we use today.  Cancer research is not perfected in the lab, it is done on children.  The thousands who have gone before are true heroes to those of us faced with this disease.  They have endured the protocols and been the data.  They deserve purple hearts for their brave sacrifice and courage.  The least we can do is continue the fight, pray and support their families, and share their stories.  

CureSearch WALK

 

If you've been here for any length of time, you have probably heard me mention CureSearch. I have written  about the Plight of Pediatric Cancer. When people think of childhood cancer often the first thing that comes to mind is little bald heads and the second is usually St. Jude Children's Hospital.  This institution is an amazing place and is fully committed to the children in its care.  However, those select few are only 400 of the 40,000 kids in treatment.  While they do provide comprehensive and complete care for those 10% of children with cancer that they treat, only 20% of their total funds are going toward pediatric cancer research.

Without research, little is going to ever change in the pediatric cancer world.  The US government gives less than 3% of its budget to ALL 47 pediatric cancers.  Relay for Life and the American Cancer Society give half a penny of every dollar raised.  And the list goes on.  The hurdles in fighting kids' cancer are enormous because...

• Kids' cancers are not profitable to drug companies.
• Kids do not vote.
• Kids cancers are different than the same cancer in adults all the way down to the molecular level.
• Kids' cancers behave and respond differently. (They are different cancers with the same name.)
• There are too few kids as a total research base.
• Kids get the hand-me downs of adult treatments.  Pediatric formulations are not always available.
• Kids bodies are not little adults.
• There are complex ethical issues with kids.   

American Association for Cancer Research Copyright 2006 (Molecular Cancer Therapies)

So what CAN we do?

That is where CureSearch comes into the picture.  CureSearch unites the Children's Oncology Group (COG), the National Childhood Cancer Foundation and the 200 hospitals treating 90% of children with cancer in the US.  95% of their funds go directly to pediatric cancer research! Through CureSearch and the COG it is ensured that every child at one of these 200 hospitals receives the same protocol of care for their specific disease. (Brenner Children's is a COG hospital.) They provide tremendous resources and support to parents, patients, families, doctors, and nurses.  They are on the cutting edge of research, while at the same time supporting all the kids in trenches who are fighting for their lives.  

A cure is not just going to happen it takes funding.

We never dreamed we would find ourselves walking this road, but we know it has been ordained for our family. In two short years our eyes have been opened to the tragic reality facing our children diagnosed with cancer. We have seen our own child suffer and endure painful procedures month after month. We are walking first hand the road of long term disability that afflicts over 60% of childhood cancer patients.  We have witnessed heart wrenching suffering in the lives of those kids fighting alongside us.  We have seen first hand, on more than one occasion, the devastation of telling a family they have no more options left.  We have seen what cancer does to children aside from just the physical effects.  We have seen the ways it impacts families on every level and shakes them to their very core.  We have seen children and their siblings (including our own) have to give up the innocence of childhood in exchange for the burdens of cancer, pain, loss, and death.   And we have seen more children earn their angel wings than my heart can even hold. Children's funerals should not be a regular part of life for anyone.

People ask us all the time what they can do to help us.  Just this past year, Julia has faced 3 surgeries, an extremely difficult hospitalization, and numerous complications.  And all of this is while she is OFF TREATMENT. So many people ask us if there is anything they could do to help. 

My answer is, yes.  Please help us find better, safer treatments and cures for our kids.  That is our deepest wish and desire.    

We pray that you find it in your heart to join  TEAM JULIA in the CureSearch Walk in Winston-Salem, NC on October 1st.  Or start your own team.  (All the money goes into the same pot.) 

Registration starts at 9am.  The walk begins at 10am.  It is a 2 mile, family-friendly event. Registration is $10 for adults and KIDS ARE FREE.  There will be many other fun activities on hand, too. Please come out and join us in support of Julia and her brave battle.  It will mean so much to her to have her family and friends beside her. If you live too far away, you can still donate to our team, OR join in support as a "virtual walker". We'd love to have you fundraise, too... it can be as simple as sharing the link on your facebook page.

The Plight of Pediatric Cancer

Today, as you attend work or school, visit friends, or meet someone new; please tell them a bit about childhood cancer. How it remains underfunded and under-recognized as the #1 killer disease of our children today. That's OUR children.

Chances are 1 in 300 that any child will be diagnosed with cancer before age 20 (That's 14,500 kids every year!). 20% of those diagnosed will not survive five years.  Every 4 hours a child dies from cancer. Of the 80% that do survive, 60% are impacted by the cure; resulting in long-term health effects including secondary cancers, major organ damage (not to mention minor organ damage), infertility, and social/learning disabilities.

 

It is widely recognized that the progress in cancer survival rates among children is the result of successful clinical trials, where work from our nation's laboratories is translated into clinical application. For children, the standard of care today is to be treated in a clinical trial, and more than 70 percent of children with cancer participate. That compares to only about 3 percent of adults (and only 1.5 percent of adult Medicare patients) with cancer who are enrolled in clinical trials. Many of the breakthroughs in adult cancer treatments actually come from pediatric clinical trials.

The triumphs over childhood cancer are to be celebrated, but there continue to be limitations on pediatric cancer research. Just a small fraction of the dollars spent on research in this country is directed to pediatric cancer.

When my child was diagnosed with cancer, I had no idea the plight of pediatric cancer in this country.  I have received quite an education in the trenches and have felt God's calling on our family to make a difference in this fight.  I have had many conversations with individuals about much of this information.  I have written posts about many of these facts, figures, and organizations.  But I have never taken the time to consolidate all of my research and writing.  So here goes... 

Childhood cancer is severely underfunded both publicly and privately.  All 47 pediatric cancers combined only receive 3% of the national government funding! For every dollar spent on a patient with breast cancer, less than 30 cents is spent on a child with cancer.  What does this mean for a bottom line? In 2007, breast cancer research received $843million in government funds and $256million from the private sector.  The combined total for childhood cancer was $130million.  Why does this discrepancy matter?

The current treatment for breast cancer involves targeted therapies, immunotherapy, and genetically-tailored treatment plans.  The survival rates for breast cancer are 90%.  The average age for diagnosis is 61 years and quality of life and health is preserved in most cases.  For children the exact opposite is true.  The average age of cancer diagnosis is 6yrs and 80% of cases are metastatic disease (already spread).  The prognosis is fatal for 20% and lifelong debilitation and disease for 60%.  The remission rate is only 27%!! That is a loss of 71 years of healthy life.  The average age of diagnosis for all the other types of cancer is 67 years and billions of dollars are being poured into research. Prostate cancer for example has a 99% cure rate, but receives the third highest level of government funds (after breast and lung cancers).

Sadly, this bias continues in the private sector.  The American Cancer Society is probably the most well known national cancer organization  For every $1 raised at a Relay for Life event, less than half a penny is given to pediatric cancer research grants or patient support.  Some may wonder why we Relay? To raise awareness for our children! We have participated, but do not fundraise for them. Our kids are the forgotten ones no one wants to think about.

I'm sure everyone is aware that October is breast cancer awareness month.  It is a tremendously successful fundraising campaign. Breast cancer awareness... from product labeling, to network recognition, to corporate donations, to media attention, and pink ribbons.... continues to trump every other type of cancer.  It is our hope that we can follow in that same successful footsteps with childhood cancer.

How does underfunding affect childhood cancer treatment?

Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. Source: Molecular Cancer Therapeutics, August 2006.

Over 55 years, 15 new cancer drugs labeled and approved for children, compared to 120 for adults. In the past 30 years, when medical science has exploded, only 1 new drug has been developed for pediatric cancer.  ONE!!! We should be ashamed of ourselves.

Everyday parents are given the life shattering news that nothing more can be done for their child.  Can you imagine anything more heartbreaking than having to tell your child you can't help them?  These courageous children who want to fight and want to simply live have nothing left to do.  In a country that happily spends $5 BILLION every year on halloween and $56 BILLION every year on their pets, you can't help but question our national priorities.

All of this probably leaves you wondering, why is pediatric cancer funding so neglected? This is the million dollar question.

I think there is a large misconception that it is being "taken care of".  We live in the richest country in the nation.  We step up to help whenever catastrophe arises.  We have the best medical institutions and researchers in the world.  We are the home of St. Jude hospital and they never turn any child away.  Right?! Well actually, St. Jude's serves 400 families a year (of the 40,000 total in treatment).  The children accepted must fit into their current clinical trials.  The rest are turned away (not because of inability to pay, but because they don't fit their trials).  St. Jude research does benefit other patients and they do consult on other cases, but of the total money they raise 20% goes to fundraising and administration, 60% goes to the comprehensive care and treatment of the 400 families in their care, and the only the remaining 20% goes to research.  They have tremendous facilities, extraordinary doctors, and a comprehensive approach, but they are like the country club of cancer, that serve an elite few. St. Jude's is doing amazing things and have made tremendous strides for all children with cancer, but the majority of the country thinks they have it all under control and any child with cancer can be treated at their hospital.  That is far from the truth.

The majority of children with cancer (90%) are treated at a group of 200 local hospitals who belong to the COG (Children's Oncology Group).  This amazing organization was formed ten years ago to unite the clinical trials and research being conducted worldwide.  This ensures that no matter where a child is treated they are receiving the most current protocol and their results are benefiting research everywhere.  The COG combined with  the National Childhood Cancer Foundation to form CureSearch.  Here is a link to their recent successes.  And 95% of their funding goes directly to research!! Only 1% of charities can make that claim.  Curesearch needs to become the name and face that everyone associates with cancer.  And second and third in that running would be St.Baldrick's and Alex's Lemonade Stand who are committed to pour money directly into research for kids' cancers and are funding additional grants at COG hospitals. 


And for the nitty gritty of how childhood cancer ended up in this predicament, there is a wonderful article from the American Association for Cancer Research.  It essentially boils down to the following:

• Kids' cancers are not profitable to drug companies.
• Kids do not vote.
• Kids cancers are different than the same cancer in adults all the way down to the molecular level.
• Kids' cancers behave and respond differently. (They are different cancers with the same name.)
• There are too few kids as a total research base.
• Kids get the hand-me downs of adult treatments.  Pediatric formulations are not always available.
• Kids bodies are not little adults.
• There are complex ethical issues with kids.

But thanks to CureSearch, the COG, St. Baldrick's, Alex's Lemonade Stand AND the parents, doctors, and nurses in the trenches; these roadblocks are being attacked brick by brick and in the war against cancer there is HOPE for our kids.  But that hope depends upon the continued support of compassionate individuals and public awareness.

As I finished typing this post my new favorite commercial came on TV, not a coincidence.  You may have seen it.  The Hyundai  Hope on Wheels campaign has a new ad.  They have given $14.2 million to pediatric cancer research grants in the past few years.  It is a glimmer of hope that the nation is taking notice.

September is...

• 46 children are diagnosed every day and 12 of those will die within 5 years
• 12,600 children join the cancer battle every year (160,000 worldwide).  
• There are 40,000 children in the US in cancer treatment every year.
• 80% of pediatric cancers have metastasized at time of diagnosis as opposed to only 20% of adult cancers 
• The intense chemo and radiation used for pediatric cancers cause lifelong disabilities and secondary diseases in 60% of patients.
• We lose over 3,000 children every year to cancer, cancer remains the #1 disease killer of American children.
• The US government and the American Cancer Society (Relay for Life) spend less than 3% of their budgets funding pediatric cancer.
• Chemotherapy drugs for childhood cancer have changed very little in the past 40 years.
• Every 4 hours a child dies from cancer. 

Cancer does not take time of or show respect for holidays.  Today 46 families heard the devastating news and the same is true for tomorrow and the next day and the next and Thanksgiving and Christmas.  Today 46 new families joined in the war for their child's life.  The month of September we remember, we make their fight known, and we give them a voice.  There are people out there who don't even know that kids can get cancer. There are people who think St. Jude is the answer.  There are people who think we have medicines for everything.

For the month of September we will REMEMBER and HONOR and HOPE and FIGHT and HELP and PRAY because the battle wages on everyday and the victory is far from won.

Want To Help Our Cancer Kids?

We have been blessed to have the privilege of working with the Kids of Childhood Cancer Foundation to help the kids at Brenner Children's Hospital who are battling cancer.

Our foundation is in place to help with medical bills, household bills, food/clothes/toys in the hospital, and one of our favorites... theme nights for the families in the hospital. A few weeks ago we had Cold Stone Creamery and Movie Night.  What could be better than ice cream sundaes and a Disney movie? 

Carter and Vinny playing one of their favorites- foosball...

Watch out for The Force...

And for just a few brief moments these families can relax, smile, and pretend they are "normal" again.  They can enjoy the simple pleasures of summer and time together as a family.

We may not be curing cancer , but we are doing what we can to love and support and love the families who are in the trenches right now.  Kids can't fight cancer alone! They need to know someone cares.  Do you want to help?

It couldn't be easier!

We have several upcoming fundraiser nights that involve nothing more than taking your family out to dinner or for ice cream.....

• AUGUST 10th (Wed) COLD STONE CREAMERY in Kernersville or Hanes Mall, 3-10PM, 25% of all sales will go to KOCC Foundation. Just click here to print your vouchers to take to the store with you.
• AUGUST 11th (Thurs) BUFFALO WILD WINGS: Wings 4 Our Kids, in High Point (Palladium) and Winston-Salem, 4-10PM, 10% of all sales will go to KOCC. Just mention our foundation when you pay.  Eat in or take out applies. Click here for a printable flyer.
• AUGUST 18th (Thurs) THE LOOP GRILL in Kernersville, 5-9PM, 10% of all sales go to KOCC.

For more details or additional events, please visit our website. Please print out our flyers to hand out to friends and family or hang up at your office or other location. 

 

We hope to see you there! Kids can't fight cancer alone.  Together we can ease the burden.