Welcome!

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Welcome to Four Square Clobbers Cancer!

foursquarecourt2.jpgFour-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer.  The goal is to inform, communicate and collaborate with those in the cancer community.

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Four-Square is a very popular game played by children, adolescents and even young adults.   Following the rules and reacting to the constant changing path of a big orange ball, the object is to stay in the game as long as possible.  It’s kind of like the game of life,  where the object is to react favorably to the fast, changing  things that come your way,  stay healthy, live as long as possible and have fun.

Four-Square by definition is also used as an adjective that means firm and resolute, especially in support of someone or something.  “We stand four-square in our conviction to improve the therapies and outcomes of children, adolescents, and young adults with cancer.”bounceball

Clobber is actually a term used in the game of Four-Square and,  coincidently, it means the same thing in the game of life.  It’s what everyone wants to do to cancer!

Complete information about Four Square Clobbers Cancer and it’s bloggers can be found by clicking the “About” tab on the menu bar at the top of the page.

September is Childhood Cancer Awareness Month

The childhood cancer community is bringing awareness to our nations capitol for one full week in September! Please consider joining us in Washington, DC for one, several or all of the events listed and let your voice be known. The more people we have in attendance, the louder our voice and the bigger our presence will be. This is a listing of the events planned in the Capitol.SeptinWash_edited-1

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Recently heard the words,”Your child has cancer?” Please read this:

BestCare_edited-1If you found this site because you have recently heard, “Your child has cancer,” this article is a must read if you are trying to decide, “What next?”  The advice given is invaluable and will help you on your journey down this uncertain road.

Keep up with legislation that will have an impact on childhood cancer.

Legislation_edited-2Are you familiar with all the legislation that may impact children with cancer? Here’s a good way to find out what is going on and to figure out how you would answer the question, “Where do you stand?”

There are 75 million race fans. We need to find a way to get them to help us.Hey race fans, Greg Puryear and others want to paint NASCAR gold! We are going along for the ride, won’t you help too?

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September’s Child

SeptChild_edited-2In my household, the month of September and the passing of Labor Day used to mean tucking away my white jeans, getting the kids settled at school and ordering Halloween costumes.

After my son’s cancer diagnosis in 2013, September will never be the same …EVER. The month now carries a sacred significance for our family and for all families touched each year with childhood cancer.

September is the designated month to raise National Awareness of Childhood Cancer.   Each September there are families working their hardest to reach out and awaken the general consciousness about this elusive malady that touches the most beautiful and vulnerable part of our society.

goldawarenessRibbonblue_edited-1Yet most people don’t know what the month’s “golden ribbon” signifies: a desperate, unmet need for greater funding to find treatments. Headlines about advances in cancer therapies for adults obscure the astonishing fact that, for kids, there is no treatment revolution. Only 2 new pediatric cancer drugs have been approved for children over the past 30 years, and national and pharmaceutical funding for new therapies is virtually non-existent.

I don’t want to share with you the statistics, the numbers about the stark reality of childhood cancer.  I do want to ask you, have you ever been a child?

I want to ask you to reflect back and remember if you trusted the grownups in your world to make your world safe and just. I want to ask you if you ever felt the presence of a love so enveloping that you knew that no matter what, goodness would prevail and children would fatherSon_edited-1always be a nation’s priority. I want to ask you to remember that grown ups have a sacred duty to be stewards of our children , especially the ones that don’t have a voice or wherewithal to change the status quo.

If you recall the innocence and faith that once defined you…then you must already know much about why raising awareness this month of childhood cancer is imperative. This September, you can do your part in forming an invincible circle of light and love around the child and family affected by cancer.

September summons a golden opportunity for all of us be better advocates for children and to be informed about the varied challenges facing childhood cancer research. Septgirl_edited-1Awareness can come in many different ways. It can be something as lovely and powerful as a whispered prayer for a child and the medical team taking care of the child, being fully present for the family, raising funds for research that is desperately needed, reaching out to the teacher, the politician, the artist, the corporate sector, your social media friend and challenging them to support this cause. If you can summon the child in you, then your efforts will come from an authentic call in your heart and perhaps, as the school year marches on, September will not just quietly slip away.

Author: Asha Virani

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Update: Camp Can Do

CampUpdate_edited-1For decades, the American Cancer Society (ACS) had been funding a nationwide childhood cancer camp program. In 2013, a business decision was made to cut funding for this program in its entirety. This was at no fault of the camps, and certainly not the campers.

I ranted about this before so will refrain from doing so again, mainly because I don’t like repeating myself, but also because I want to keep this post all zen-like, focusing on the camp and the campers and not the ACS.

Just really quick, for context: At least 25 camps were left with the choice: either close their doors or keep going on their own. My understanding is that many of the camps have indeed closed, but not all of them.

One of these still-open camps, called Camp Can Do (Forever), is practically in my own back yard. It is a long-running camp in its 31st year this year. Camp Can Do is held at an Cando2amazingly quaint and equally beautiful campground in Lebanon, PA and brings together children from 3 hospitals in Pennsylvania—St. Christopher’s in Philadelphia, Lehigh Valley Hospital in Allentown, Hershey Medical Center in Hershey—as well as from duPont Hospital for Children in Wilmington Delaware. Camp is for children ages 7-17 who are either in active treatment or in remission from childhood cancer, and there is a separate program for their siblings too.

Fortunately, those who have volunteered at the camp over the decades have an unrelenting passion for the program, knowing that there really isn’t a choice: it must go on. That “Can Cando6Do” attitude has resonated, loud and clear.

The Camp Director himself is a former camper and childhood cancer survivor, who credited this camp for literally saving his life many years ago. He was angry at the time and was literally forced to go to camp per doctor’s orders, but something magical happened that changed him for the better and gave him his life back.

About 90% of the camp counselors are former campers as well, which is so key to the experience for the kids. The adults have many of the same scars, both physical and mental, but can inspire the kids through their own stories of survival. This is also a 100% volunteer effort. This includes a volunteer medical staff, with 2 doctors from Hershey Medical Center plus nurses from various hospitals. They have an “infirmary” set-up onsite, where they administer medication and provide outpatient care as needed.

Cando5I have heard story after story about how invaluable the camp experience is for the kids, to be around their peers and adults who understand their ordeal—and how the positive experience tends to carry over into the rest of the year. It is also invaluable for the parents and guardians, giving them a chance to spend some bonding time with other members of their family. It is like a vacation for everybody, but a potentially life-changing vacation for kids who have been through the toughest of times. A lot of the kids are “city kids”, so the whole roughing-it-in-the-woods thing is a unique experience in that way too.

Some of the camps that were affected by the ACS decision but were able to stay open were weekend camps, which can be operated with a relatively small amount of funding. Cando7However, keeping Camp Can Do open has been a daunting task, as it is a 3-week (not 3 days, but 3 weeks) program. In June, there is a 4-day sibling camp and in August there are 2 separate week-long camps for the kids who have personally battled or are actively battling cancer. The directors are dedicated to keeping all 3 weeks and all that comes with them, as the continuity is critical for the children (keep in mind there are many return guests) and they have a recipe that works.

In all, at least 150 kids come to Camp Can Do summer after summer, a mix of returning guests and new faces. It takes roughly $1,000 US dollars to send 1 child to camp for the week. The families have been through enough–physically, emotionally, and financially. Thus there is no cost whatsoever for families. Now, moving forward without the support of the ACS, the camp is reliant on contributions from organizations and local businesses and individuals.

This year has been a rough road for all who have been involved in the camp, given all the stress surrounding the funding issues. Plus they have been forced to go through the process of getting established as their own 501(c)(3) non-profit entity. Many of the children were worried that the camp would be closing, with rumors circulating on sites like Facebook. But, no, they worked it out for 2014 after a ton of hard work and by the generosity of so many people. Now they must immediately start thinking about 2015, which will be here before everyone knows it.

Cando4I can tell you all about what Camp Can Do is like, as I witnessed it first hand and snapped all of the pics that you see here. I visited camp on August 7, 2014, along with some other folks in my community who have come to learn about the camp and want to help in some way. It was such an amazing day; it really, truly was. I got to watch kids having the time of their life, via a huge selection of activities that include: doing science experiments, dancing, music lessons, arts and crafts, pine cars and rockets, archery, swimming, canoeing, fishing, a volleyball-type game called 9-square, Gaga ball (like dodge ball, in a pit, is all the rage), basketball, and zip-lining that required tree climbing of at least 40 feet (!!). We adult visitors even got to play a game called “steal the bacon” with the kids, and I got schooled by a girl about half my size. And no, I did not let her win. She was sly as a fox! The kids also put on a show for us as well, and we all came together to cook our own lunch ‘dogs via campfire. One of the campers came over to let me know that there were carrots and raisins to be had, in case I was interested. He was so kind, taking care of ME, it was very moving. Whenever the campers saw us visitors coming, they would chant “Camp Can Do is fun, fun, fun… and safe!”. Very, very cute.

Cando1I met 2 of the 3 boys pictured at the right as they were gulping down water, just slightly out of breath, having just returned from a 15-mile bike ride. 15 miles, on rolling hills in central Pennsylvania! They were very tired but very proud of their feat, and that is how I got to chatting with them. What struck me is how kind and polite these boys were. Imagine trying to get 3 teens/preteens to “say cheese” for a picture even. It should have been difficult to get such a great shot, but it wasn’t. They were happy. Then something else struck me. Between all of the time in clinic, hospitals etc, these kids have become quite accustomed to interacting with adults. And it showed. They seemed so mature, having been forced to grow up so fast. All I can say is thank goodness for Camp Can Do, that they are surviving on their own and that they are literally giving these kids their childhood back … while being in the company of such amazing counselors, who I would rank among the most compassionate adults on the planet. They were all super nice too.

I am a supporter of Camp Can Do because I believe in a brighter today and tomorrow for children with cancer and their families, and that this camp provides the best medicine at the right time.

Feel free to contact me if you would like more info on Camp Can Do Forever, or if you have any updates regarding the camp(s) in your own community.

Author: Laurie Orloski

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Giving It All

GivingItAll_edited-1Editor’s Note: One day, their 9 year old daughter is perfectly normal and healthy. The very next day they heard these words, “Your daughter has cancer and it’s terminal.” It 2014-09-03 05.15.42 amhappened just that quickly. About one year later, Mark and Ellyn Miller lost their sweet Gabriella to DIPG brain cancer. From the outset, they decided that they wanted to do something to keep others from going through this horrible disease. They decided that they would donate Gabriella’s tumor to be studied to help find a cure.

iphone_Ellyn_edited-1I received this heart-breaking message this morning informing me that yet another child has died from brain cancer.

As you can see from the note, the parents made the agonizing decision to donate their child’s tumor, his brain.

I am caught up in so many mixed emotions whenever I hear this. On one hand, this is a tremendous gift which will lead to new and more effective treatments. It is such a selfless action on behalf of the parents. Trust me though, when I say that they don’t think of it as a selfless act. I’ve walked in their shoes, I know.

It’s bad enough that our babies, our children are being diagnosed with cancer. Then we throw them into this world where they are tortured by antiquated and ineffective drugs which make them so damn sick that they lose their hair, vomit for hours and hours, become “demented-looking” (as Gabriella called herself because the steroids puffed her up so much), are confined to the hospital or home…. I could go on and on. And we parents do this with the hope that maybe some drug might come along and keep them going just long enough for some other new drug.

I don’t for one second regret the decisions that we made for Gabriella’s treatments. Those treatments gave us 11 1/2 months with our precious girl. If we hadn’t done what we did we would only have had mere weeks. But I will tell you that I am haunted and tortured by the worst possible memories of what cancer did to my daughter. After receiving this message I am reminded of the 24-hours that surrounded Gabriella’s death. We had made the decision to donate Gabriella’s tumor. We were in a good place with that decision. But when someone dies there is not a lot of time before it would be too late to donate. It needs to be done quickly. Our Sweet G died. The funeral home came to our house to get her. They put her tiny little body inside of that black body bag, zipped it up and took her away in the Waiting_edited-1middle if the night. I insisted on going to the hospital the next morning for the autopsy. I didn’t want my little girl to be alone. I also wanted to see her. But, they wouldn’t let me. They said that death isn’t pretty. It doesn’t do nice things to the body. I would have to wait for the funeral home to “prepare” her. So we sat in a room next to where Gabriella was. Knowing that she was so close, knowing that she would never come home with us, knowing what was about to happen. Knowing doesn’t prepare you though. Knowing doesn’t prepare you for the sound of the saw that is used to cut your child open so that they can take the cancer out of her. Too late though, too late to remove the cancer because your child is dead.

And now another child killed by cancer. Another family not wanting others to go through what they have just suffered. Another mom, another dad going home to an empty bedroom…

Author: Ellyn Miller

Editor’s Note: Today, some of the greatest doctors in the world have Gabriella’s tumor, and the tumor of a little boy who, like little Miss G also gave it all. Using these two donations and others like them, these wonderful doctors are currently working on a way to destroy DIPG Brain Cancer so others will be able to live! 

If you find yourself in the same situation and need someone to talk to about making a tumor donation, Ellyn is available to talk to you. Please email all your contact information  to Ellyn@smashingwalnuts.org.

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September – #ChildhoodCancerChallenge

Moon_edited-1This will be PAC2’s 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we’ve learned that the research funding for all cancers is not the same, and that funding for childhood cancer research is severely lacking, especially from some organizations not directly focused on kids. We’ve learned that kids need their own specialized research because they are not just little adults. We’ve learned that awareness can lead to funding which leads to research which leads to better treatments. We’ve learned that industry funds 60% of all adult cancer research but virtually no childhood cancer research (it’s ‘rare’ and non-profitable). Federal funding makes up the majority of funding for childhood cancer research, yet it barely cracks the $200 million level from a government with a total budget of $3.6 trillion and makes up less than 4% of NCI’s budget (adults get 96%).

We’ve learned that if we look at childhood cancer in terms of young lives cut short, or person-life-years lost; overall, curing childhood cancer would be about the same as curing breast cancer. Incredibly, seemingly without notice or concern from media or the NCI, we’ve learned that the incidence of childhood cancer has increased over those seven years, increasing from 1 in 330 to 1 in 285 kids under 20. We’ve learned that the 80% ‘cure’ rate is for five years and only means a 3 year old will live to be 8….not necessarily 80 or even 30. We’ve learned that the long-term survival rate is less than 80%, maybe as low as 66% on average, and of course for some kid’s cancers it’s virtually 0%. We’ve learned that 20% of the five-year survivors subsequently die from their cancer, a secondary cancer, or long-term effects of the “cure” or the treatment over the next 25 years, the gross term excess mortality. We’ve learned that 98% of the five-year survivors face long-term health effects from the treatment, with about half suffering severe or moderate life-long effects.

We’ve learned that so much more needs to be done.

But, we’ve also learned (early on!) that the childhood cancer community is made up of incredible people who bring diverse backgrounds and talents to the fight. We’ve learned that these people want to collaborate to cure childhood cancer faster; and we already knew that together we could change the world.

We’ve learned all these numbers and facts; but it’s so much less complex when your child has cancer or if you’ve lost a child. It’s really very simple: We as a country, as adults, are still not doing the best we can to save our own sons and daughters from the disease that kills more kids than all others combined. We need to challenge U.S. Capitol Building, Washington D.C.our leaders to do better, we are way past the awareness stage…..

So, if there is any way we can get a word in edgewise during the upcoming Congressional Childhood Cancer Caucus featuring Dr. Francis Collins, Director of NIH, on behalf of the 83 million kids under 20 we promise to issue the #ChildhoodCancerChallenge.

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Please consider joining us in DC this September:
On September 19 (9-10:30 am), the 5th Annual Congressional Childhood Cancer Summit will be held. Rep. Michael McCaul and Rep. Chris Van Hollen, the co-chairs of the Congressional Childhood Cancer Caucus, are pleased to host Dr. Francis Collins, the Director of the National Institutes of Health (NIH), who will deliver the keynote speech. We hope you will join us for this exceptional event. Please feel free to pass this invitation along to others who may be interested. Visit the Congressional Childhood Cancer Caucus at http://childhoodcancer-mccaul.house.gov.

The CureFest for Childhood Cancer Walk will be held in Washington, DC on September 21 from 9:00 a.m. – 1:30 p.m. The walk is an excellent opportunity for the childhood cancer community and the general public to stand together as one voice against childhood cancer (united!). The event includes an organized walk from the U.S. Capitol to the Washington Monument and back. Over 60 organizations have registered and hundreds of families will be in attendance. Kick off CureFest Weekend with the CureFest Welcome Event on September 20th. This family-friendly gathering is designed to welcome you to Washington, DC. The event will feature a short speaking program, live music and activities for the children. At the end of the event we will travel as a group to the White House for the “A Night of Golden Lights” candlelight vigil and rally.

Let us know your thoughts at info@PeopleAgainstChildhoodCancer.org.

Thanks, PAC2

Author: Bob Piniewski

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A complete schedule of childhood cancer events taking place during September.

 

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Where are you now, Rock Hudson?

RockHudson_edited-1Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well …..

Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent StevenandAngieand Young Adult) Cancer.

  • I learned that cancer is the leading cause of DEATH (from a disease) in children.
  • I learned that there haven’t been any new drugs developed in over 20 YEARS to treat children with cancer.
  • I learned that the statistics for Adolescent and Young Adult (AYA) cancer survivorship has not improved in twenty years.

I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.

So what am I getting at? This morning I had a revelation!

rocktaylor-giant_optI was sitting on the floor with  Steven, who was struggling with immobilizing neuropathic pain, cancer treatment one side effect, and I thought: WE NEED A ROCK HUDSON.        HUH?

Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to star rockhudson1in Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!

Sadly we later learned that Rock had AIDS. The public was shocked.

Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson to 300.taylor.cm_.32311create awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.

Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs.  Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.

What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?

Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?

The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014.  This amount has decreased for the last several years.  If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008!   To put  aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer.  Do you see a discrepancy here?

Every year 2,700 children (0 – 19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”

What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death  (Bleyer, Viny, & Barr, 2006).

StepUpShineWhere is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!

We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?

We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!

We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.

Where is our ROCK HUDSON???

Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?

The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.

How often are parents asked to share their grief over the loss of their child to cancer on national television?

Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?

starprofile_edited-2Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?

Where is our champion? Who else needs to die for the cause?

Author: Angie Giallourakis

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Lock Up September

lockup_edited-1We all know that September is Childhood Cancer Awareness Month. It’s a 30 day period each year that is set aside for the children, or is it?. It’s a chance for us to make the world pay a little attention to our community, or is it?. Each year in October, we converse among ourselves about how we did not have all of September to ourselves because the breast cancer people took some of it from us. Let’s think about that for a minute or two. Do people actually take some of September away from us? I submit that we may be  giving it to them?

Most of our friends and relatives know our personal cancer stories and, for the most part, support us. Creating awareness and asking for support is a lot like selling life insurance, Avon or Tupperware. If you have ever done this, you know it’s easy until you exhaust your supply of friends and relatives, then it gets very difficult. For most of us, when our child was diagnosed, our friends and relatives came running to us. Also, for the most part, all of them, because of their close association with us, now know as much about childhood cancer as we do. Here’s our problem. We facetoface2need to reach outside of our social circles! The childhood cancer community is mostly talking to each other on Facebook and we are not reaching the general public.  It’s a great tool for spreading awareness, but we seem to lack the ability to reach outside our own community or our normal social circles. Nothing, absolutely nothing, beats talking face to face!

This may help in creating awareness and gaining support. Develop an elevator speech. It’s a short talk that you can give, in a minute or less, to a total stranger. Seek out people you don’t know to get them interested in childhood cancer, tell them your story in a nutshell and then give them your Facebook page to “like.” Exchange contact information if possible. Use business cards (printed on both sides) with your information to pass out. Hand them something! Do not let them go away empty handed!

Child's DrawingTake some time off Facebook and go on a shopping field trip!   Contact everybody you buy stuff from and tell them how much it would mean to you and your family, child, hero, and or survivor to see GOLD in September.  Give them your cardLet them know that childhood cancer people shop in their store and would appreciate some consideration in observing Childhood Cancer Month by posting a sign or making a display.  Ask them now. You could even get kids to make signs  (they would love to) to give to the merchants. Think about it. How can a merchant turn you down? Think about how many people will see the message if you are successful in getting a sign in that high volume store or restaurant!

When it comes to seeing gold ribbons on store windows, or in advertisements, that’sBlackboardwearRibbon another story. Sorry to burst anybody’s bubbles here, but the people who make or sell the very stuff  you use and spend your money on everyday do not read our Facebook posts. They do not “like” our Facebook pages, much less our posts. They like our MONEY!  They are not aware that childhood cancer is a problem because it has not yet affected their business.  For the most part, until something has a measurable or perceived effect on them financially, businesses will not act. We must show them with our words and actions that it will have an effect on their future business.If you haven’t done so already, it’s really too late for 2014, but during the month, you can look for opportunities to write to companies (Pampers, Huggies, Enfamil, etc.) who have a vested interest in children and market their products toward them.   All the things children use should be targets of contact by email or letter. Maybe in September 2015 we can see more gold on the merchandise that is marketed for children. Write them this September and tell them how disappointed you were that they did not participate even though they market to children. We should fully support any business that is promoting childhood cancer awareness.

flavorIceCompanies like FlaVorIce  should be supported for their efforts to help increase awareness of  childhood cancer.  Use them as an example of what we would like to see on products they market to kids. By the way, FlaVorIce does this 365 days a year, not just in September. Why not ask those that aren’t, “Why not?”  We need to be heard OUTSIDE of our own community! Read the contact information on their package and CONTACT THEM and tell  them to have some gold stuff in SEPTEMBER. Many of the businesses you know well have Facebook pages. Think of the possibilities!

Get ready, this should not be a shock, but you are going to see more of the stuff below in September.  When you do, don’t get mad at anyone except ourselves. We did not create the noise that the pink folks did.

Pink2

Nothing is impossible If we stick together and get loud.

Author: Joe Baber     

Related Story:

See what is happening in our nation’s Capitol in September!

 

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Compassionate Use

Compassionate Use_edited-1You may remember the #SaveJosh news articles in the spring of 2014 where little Josh Hardy’s family mounted, as a last ditch effort, a social media campaign to get him into a clinical trial that St. Jude’s doctors said was his last chance.  He had only a few weeks left or he was going to die, there was nothing else that would save him. It seems the entire childhood cancer community came together at once and with the help of several key players, social media, and TV news and talk shows, within 10 days, Josh got his medicine and it literally saved his life.  You may also remember Judson Shepard, a little boy with a similar situation needing the same drug. This time the little boy died because it took too long to get the medicine.  These two incidents occurred and can you believe it, the FDA has a compassionate use program in effect that “should have worked” in both cases. It did not work and it is not working in another case at this very moment.  Frankly, for the most part, it’s not working for children with cancer.

I am sure most of the readers of this blog know Ellyn Miller, Gabriella Miller’s mom, and founder of Smashing Walnuts Foundation. She and her husband Mark set up the foundation to honor Gabriella’s wishes to find a cure for brain cancer. Her efforts have resulted in the passing of the Gabriella Miller Kids First Research Act to repurpose Presidential Election and Campaign Funds into research for pediatric disease and childhood cancer. She is now working very hard to ensure that the bill gets funded.

Ellyn, wrote and posted the article below on the Smashing Walnuts Facebook page. In drawing attention to the current case  of  fifteen year-old Nathalie Traller and the barriers to compassionate use for kids, Ellyn sums up the problems as no one else can… a mother who has pursued every avenue of compassionate use to try and save her dying child.

Smashing Walnuts Facebook Page July 30, 2014  by Ellyn Miller

I have attached a link to a blog written by the dad of a 15-year old girl who has been told that his daughter cannot participate in a promising clinical trial because she is a minor. This girl has to wait three (3) more years until she is considered to be an adult.

The problem is that cancer does not wait for someone to come of age. Trust me on this one. It didn’t wait for my daughter. When Gabriella’s cancer started to regrow our options for clinical trials were limited. That didn’t stop me though. I WAS FIGHTING FOR MY DAUGHTER’S LIFE!!! I called all around the country, all around the world, speaking with doctors/researchers. I spoke to everyone that had any promising brain cancer treatments. NIH, Hopkins, Sloan Kettering, Duke, UCSF, the UK, Australia – to name a few… I was told – over and over again – that Gabriella wasn’t a candidate because of her age, she was too far post radiation, her tumor had metastasized … You name it, I heard it. I also heard, “Maybe the trial will open for your daughter in six months or a year. Well, dammit, my daughter didn’t have that long. I needed, my daughter needed, treatment NOW.

But, I have to tell you that this “age” thing (not being old enough for a drug trial) just makes me see RED! Are you kidding me!?! Not old enough!?! So, dear sirs that make up these laws, let me ask you this…WHY are we giving our children drugs that were created for adults? WHY are we giving our children drugs that are 30, 40, 50+ years old? WHY are we giving our kids drugs that are so toxic that the nurses have to wear gloves to administer them? WHY are we giving our children drugs that have known side effects such as causing secondary cancers? And, you’re telling me that you won’t/can’t give our children a new, promising drug because “they are too young”?!? I simply can’t understand that.

My daughter died! She was only ten-years old. Ask any parent of a child dying from cancer if they would let their child try a promising new drug, despite their young age. THE ANSWER IS YES, YES, YES!!! The alternative is too horrible to comprehend. The alternative is a nightmare. Our children die! Do you know how many of us parents are living in that nightmare? Way too many. And, the number grows everyday.

Don’t use age as the reason not to treat our kids. Their age should be the reason why we DO treat them. They have so much to live for…

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The Fault of our Systems

If  I were a member of the FDA, NIH, NCI or Pharma, I certainly would not want to face Ellyn Miller and try to explain why the current compassionate use policy is good for children  with cancer.

Authors: Ellyn Miller and  Joe Baber

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The Fault in Our Systems

NathalieVideo_edited-1by Nathan Traller, Nathalie’s father

Editor’s Note: Nathan’s daughter was diagnosed with Aveolar Soft Part Sarcoma (ASPS) two years ago and he has been fighting to get her into a possible life saving clinical trial for PD1 and PDL1. Time and options have almost run out.

The Fault in Our Systems

I didn’t make up that title. Someone else who knows this road did. But there are some very big faults in what happens if you are diagnosed as a teen with a rare cancer.

It begins with research funding. Younger people tend to have rarer cancers less likely to have been brought on by the environmental wears and tears of modern life. Their cancers are less in total numbers. The “market” is smaller and more diverse. Diseases like Nathaliefightershoppingsarcomas are referred to as “the forgotten cancers.”

I used to think that cancer research was like finding some needle in a haystack, a futile effort no matter how much money is thrown at it. This is not true. In the last few years an increased understanding of the genomic profile of cancer cells including how they avoid detection from the body’s immune system is offering up new targets to stop growth and even kill off metastatic cancer. When we put in the effort, understanding IS coming. Nathalie’s cancer (Alveolar Soft Part Sarcoma) has been identified for at least 30 years but very little research has gone into it. I don’t say this to say “It’s not fair!” I mention this because I am energized to be part of the solution. I am not independently wealthy, but I am a teacher by trade and I can communicate. I can shine the light on people doing good things so more resources are directed toward them. I can stand up for patient groups that need a stronger voice. I can tell a story. I can explain things in new ways.

NIHI can tell my personal experience with visiting NCI (the National Cancer Institute) part of the NIH (National Institutes of Health) in Bethesda, Maryland. Since we basically heard there is “nothing we know to do for Nathalie” at our first biopsy meeting, I began researching and found a Phase II clinical trial run through NCI for ASPS. Work was done to approve her age at 13 and we began flying out to NIH. NIH made me proud to be an American. This facility and what is being accomplished for all diseases including rare ones makes it a true jewel. I know there are many who have issues with wasteful government spending and I typically agree. However funding NIH and the NCI is truly an investment that pays off in new life saving therapies and even economic growth. Time after time I encountered families with children who had hope for their rare disease through a novel therapy being pioneered there. Please do not see this through a red or blue political lens. Nathalie’s favorite color is purple and she has senators on both sides of the aisle battling for her. There are advances in science that should be made whether the market drives them or not.

Children’s cancer perfectly illustrates this. Back to Nathalie, her life was saved by an oncology surgeon at NIH who performed the “can’t be done” surgery for Nathalie. The NCI is continuing research with an ASPS tumor bank and genomic studies of Nathalie’s tumor. The fact that NCI’s budget has been cut by 30% over the last three years is bad news for everyone. The other “fault in our system” is that only 4 cents of each NCI dollar goes to pediatric cancer research. More money will fund prostrate cancer research than all pediatric cancers combined. I’m not motivated to draw away adult cancer research, simply as a teacher I must speak up for those quiet voices that don’t have dollars chasing them.

So what happens when research does result in a breakthrough in the lab? How does it make it’s way to the clinic? And what happens if the patient is under 18? It is said that the drug “pipeline” to FDA approval averages 5-7 years. No longer are clinical trials desperate last ditch efforts. Increasingly they represent the “latest technology” and can NathalieHospital_edited-1actually be a better first-line choice in some instances. Unfortunately our systems create a scenario where the vast majority of trials are set with an age limit of 18. A patient with a rare disease such as Nathalie (now, age 15) loses out on a primary weapon to combat her disease. It is not uncommon for pediatric trials to be launched after the drug has already received FDA approval. Pediatric trials have far fewer patient slots available and often err on the side of highly conservative dosage and inclusion criteria. Our clinical trial models are due for a major overhaul. They are often modeled after past templates that have gained approval. We need more “2.0 clinical Trials” like the Lung MAP trial that uses biomarkers to steer lung cancer patients flexibly down various paths and meds based on their unique tumor.

But what about Compassionate Use Access? Isn’t that sort of a moral safety valve for a company to provide a life-saving medicine to a patient who may not be trial eligible? The process exists and is supported through the FDA but is dependent from the start on a company’s willingness to provide the medicine. Consider the breakthrough area of  PD1/PDL1 checkpoint inhibitors. This class of drug has shown exciting game changing NathaliePortrait2results and has resulted in perhaps some of the largest clinical trials in history. The potential has dominated ASCO’s Annual meeting two years in a row. So how many patients have received compassionate use access of this class of drug being tested by four major pharmas? I challenge you to find a single patient. Unfortunately I can list off those who have died asking. Nathalie’s oncologist requested access for her based on her dire need and scientific clues suggesting efficacy in September 2013. I’ll let you be the teacher and assign this system it’s grade.

It is time to roll up our sleeves. It is said that cancer will touch 1 in 3 Americans. It is time to close up these faults with better ideas and new systems. It’s time to Step Up and invest in research that will pay huge dividends.

Author: Nathan Traller

Nathan Traller is a teacher and patient advocate along with his daughter Nathalie. Find out more at www.4Nathalie.com Read Nathalie’s blog at kickASPS.wordpress.com

Editor’s Note: Here’s how you can help: 

ClickRelated Articles:

CNBC Broadcast Story

Compassionate Use_edited-1Compassionate Use 

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Want to Make a Difference?

LauriesMug_edited-1Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely with but never meet–or never even talk to for that matter, with sole reliance on e-mail. Very weird to me, but very modifiable.

Cac2PageFortunately, for me, I finally had the opportunity to meet some of my comrades in the childhood cancer community in person, thanks to the Coalition Against Childhood Cancer (CAC2) Annual Summit that was held in Our Nation’s Capital on June 25, 2014.

June was an extremely busy time for me, with both work and family commitments. However, as I always say (and I say it A LOT these days), you make time for the people and things that are important. And attending this meeting was VERY important to me. No way was I missing it, barring catastrophe. There were some people who I just had to meet, and it was where I needed and wanted to be. We shipped the kids off to “grandparent camp”, and off I went.

If you are not familiar with CAC2, it is an organization formed in 2013, or should I say a collection of childhood cancer organizations (and people like me), providing opportunities to form a unified front for such an important cause that does not get enough attention. The main mantra for CAC2 is to put children with cancer and their families first in everything we do, and there are 4 main areas or “pillars” that the organization focuses on: awareness, advocacy, family services, and research.

I am not affiliated with any specific childhood cancer organization but was able to join as an individual member. Most members of CAC2 have a personal connection to a child with cancer, but I do not. I am just someone who believes that children with cancer should be a priority population for research, but I know enough to know that they are not. So I joined the childhood cancer community in general, and CAC2 in particular, to find ways that I could help in some way–any way.

Laurie&BillIt was quite the story, if you can’t tell by all of the moving hands!! That’s me with another individual member, William Burns. He was an invited speaker but also wanted to come to personally thank CAC2 for the outpouring of help that it’s members provided in support of his nephew Josh Hardy, of the #SaveJosh campaign. Josh was dying and needed a drug that was in a clinical trial but not available. Without it, he was going to die.  The CAC2 group ran a successful social media campaign and got the drug released to him in time.

To say that it was worth a trip was an understatement. I got to meet several people who I have been working with over the past year, in a variety of different ways. I got to meet lots of new people, wonderful people who all share the same mission: To put an end to the suffering and loss that comes with childhood cancer, by making the kids the priorities that they deserve to be. There are a lot of exciting things in the hopper, and I believe that there are lots of good things to come—not for me, but for kids with cancer.

The meeting itself was a 1-day event, consisting of a series of presentations by individual speakers. There was also an enlightening panel discussion about barriers to drug development that included representatives from the National Cancer Institute and pharmaceutical industry. The discussion got lively needless to say—some questions made it into a bit of a “hot seat”, but everybody left unscarred with the help of a good, effective moderator.

LauriesPanel_edited-1 Distinguished panel, discussing barriers to drug development for childhood cancers

Overall, in listening to the presentations and discussions, it couldn’t be any more obvious that we are all on the same ship—that every single person in that room was longing for more research into better treatments for childhood cancer, but that insufficient funding is standing in the way. There are so many people who are so passionate about childhood cancer, beyond those who are formal members of the childhood cancer community. But it is equally obvious that there is no quick fix. The “system is broken” and has been for some time. There is a lot more noise that needs to be made via a unified call to action, and that is where CAC2 can and will make a difference. It is so humbling to be part of it, I am so appreciative to those who pointed me in the right direction. An extra loud shout out to Richard Plotkin of the Max Cure Foundation, Vickie Buenger (CAC2 president amazing woman extraordinaire!), and Beth Anne Baber of  The Nicholas Conor Institute (TNCI) and her dad, Joe Baber (Team Captain, Four Square).  Crossing paths with “ya’ll” led me straight to CAC2, and for that I am so grateful!

If you are passionate about childhood cancer and are just learning about CAC2 now, you should join me. Not to be pushy, but you really should join—no better time than the present. You will be expected to get involved in some way, and there are lots of options so you are sure to find a way to be productive and make a meaningful difference. One person can and will make a difference in this setting. And you are sure to meet some real-life heroes, who will inspire you to work harder with whatever amount of time you can find. You can find the time, I did and will continue to do so.

For more information, please contact me directly (laurie.orloski@pharmite.com, or you can easily find me on LinkedIn or Facebook) or check out the very awesome CAC2 web-site: http://cac2.org/

Spread the word by sharing, we need more volunteers, maybe someone you know would LauriesMug2_edited-1want to join CAC2 if they only knew about it! No personal experience with childhood cancer required….

I started with the mug and am going to end with it, because the mug knows best.

Author: Laurie Orloski

 

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September in Our Capitol

SeptinWash_edited-1

PGMAP_edited-1September 2014 in our nation’s capitol will be full of activities that will highlight the need for more medical research and an opportunity to show our government that we need to make childhood cancer a national priority.

Below is a schedule of activities that you may find interesting.  As additional information is received, this page will be updated weekly.

A handy Free PocketGuide with maps and locations of all the activities below is now available to print and take with you for all the week’s activities.

Tuesday, September 16, 2014, 7 p.m. to 9 p.m.

The American Cancer Society Cancer Action Network (ACS CAN) will be honoring those who have been touched by cancer and remembering those lost, with a Lights of Hope 8393404216_550b3d4f64_zceremony during the 2014 Leadership Summit and Lobby Day in Washington D.C.

Lights of Hope bearing the names of those touched by cancer will line the Capitol Reflecting Pool the evening of September 16, 2014 in an experience to fight back against cancer at the Nation’s Capitol. For additional information, please contact David Pugach at david.pugach@cancer.org .

Wednesday, September 17, 2014,  3 p.m. to 7:30 p.m.

Rally for Medical Research Hill Day Training Session and Reception

2014-07-07 12.12.54 pmThe Rally for Medical Research (www.rallyformedicalresearch.org) is both a call to action for Congress to make medical research a national priority, and a means by which to raise awareness with the general public about the importance of continued investment in medical research through the National Institutes of Health.  For more information, contact Mary Lee Watts (marylee.watts@aacr.org) or Jon Retzlaff (jon.retzlaff@aacr.org).  Register to attend here!

 Thursday, September 18, 2014,  8 a.m. to 4:30 p.m.

Rally for Medical Research Hill Day Breakfast Program and Congressional Meetings.  

Meetings will be held for participants with their individual Senators and Congressional Representatives. It’s a great opportunity to meet the people from your state and district that are representing you in Washington. This is your opportunity to let them know how valuable research is to you, your family, and our economy.  For more information, contact Mary Lee Watts (marylee.watts@aacr.org) or Jon Retzlaff (jon.retzlaff@aacr.org). Register here to attend.

Thursday, September 18, 2014,  4:30 p.m. to 6:30 p.m.

 A Golden Toast Honoring Congressman Michael McCaul and Congressman Chris Van Hollen, Co Chairs of  The Congressional Childhood Cancer Caucus.

Toast

This is a invitation only event to be held at Bar 201 in Washington, DC.

The child friendly event marks the fifth year of the cancer caucus and will  honor the Congressmen and their staffs for the tireless work they have invested over the years.

For more information, contact Annette Leslie (carrymecarson@gmail.com)

Henry&MeA special showing of the film, “Henry and Me,” will be held at the above  location immediately after the reception (6:30 pm). This animated film stars Richard Gere, Cyndi Lauper, Chas Paliminterri, Paul Simon, Luci Arnez and others, including present and former players of The New York Yankees and members of management. The story depicts young Jack, an avid Yankee fan, with the help of Yankee Magic, as he battles to overcome the cancer that afflicts him. The movie premiered in New York City on August 18th and has been shown in theatres in New York City and Los Angeles, with the sale of DVD’s and downloads to commence on September 30th. It is anticipated that Henry & Me will raise awareness throughout the country to the needs of childhood cancers. If you do not have an invitation to the reception and would like one and be able to see the film, please send an email listing those to be attending to reception@tnci.org.

Thursday, September 18, 2014,   6:30 p.m. to  9:30 p.m.

2014 Hyundai Hope on Wheels Gala

IMG_2902This is a invitation only event.  Hyundai Motor Company will be celebrating sixteen years involvement and over $87,000,000 in grants and contributions to childhood cancer research they have made during that time. For this wonderful event, Hyundai will bring together some of their top participating dealers, researchers, oncologists, representatives of major medical institutions and the object of everyone’s attention, the children and their families that have been affected by cancer.

Friday, September 19, 2014   9 a.m. to 10:30 a.m.

Childhood Cancer Caucus Summit

Keynote Address: Dr. Francis Collins, Director of the National Institute of Health

U.S. Capitol Building, Washington D.C.The Childhood Cancer Caucus (www.childhoodcancer-mccaul.house.gov) is a bipartisan caucus serving as a public policy clearinghouse for information on pediatric cancer and to be a forum for Members of Congress to work together to address this critical issue. The Caucus of over 100 congressional members strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. Congressmen Michael McCaul and Chris Van Hollen serve as the Co-Chairs of the Childhood Cancer Caucus.  The event will be in the Congressional Auditorium, Capital Visitors Center. For more information, contact Andy Taylor (Andy.Taylor@Mail.House.Gov) or Erika Appel (Erika.Appel@mail.house.gov)

Saturday, September 20, 2014  Tentatively 3:30 p.m. ~6:30 p.m.

CureFest Welcome Reception

nationals_park_entrance_343x189A welcoming event the night before at Nationals’ Stadium. This is the home of the Washington Nationals baseball team. This event is intended to be a casual family-friendly event being hosted by a group of foundations from the Washington-area. The cost of this event is $15 and includes dinner and dessert. The welcome event is sponsored by Stillbrave Childhood Cancer Foundation, Arms Wide Open Childhood Cancer Foundation/The Truth 365 and Kyle’s Kamp.

Saturday, September 20, 2014  7:30p.m ~8:30 p.m

A Night of Golden Light

WhiteHouse_LogoA Night of Golden Light is a CureFest candlelight rally to honor the children taken by cancer and all those still in the fight. Children, their families and advocates will gather in front of the White House holding gold lights. The mission of the rally is to generate public awareness for childhood cancer. For more information, contact Tony Stoddard (goldinseptember@comcast.net)

 Sunday, September 21, 2014  9 a.m. to 1:30 p.m.

CureFest Event

CureFest is an annual festival in Washington, DC that is the key component of the growing childhood cancer movement. CureFest is held in the Nation’s Capital in an effort to make childhood cancer a national priority. It is an opportunity for the childhood cancer community, the general public and elected leaders to come together as One Voice against childhood cancer. The ultimate goal is safer treatments and better outcomes for children diagnosed with cancer.

Curefestmall_edited-1Over 100 childhood cancer foundations and groups are expected to attend CureFest. (Last year 51 foundations and groups attended.) Over 1,000 individuals have indicated they will be attending, including over 300 volunteers. It is a family-friendly event with games and activities for all ages. The event will include live music, entertainment, and speeches by prominent pediatric oncologists, elected leaders, as well as children and adults impacted by childhood cancer. Dr. Peter Adamson, the Chair of the Children’s Oncology Group (COG, a pediatric cancer clinical trial network) will provide a keynote address. Featured will be moving tributes for children who have or have had cancer. The National Park Service agreed to allow us to host CureFest on the newly-renovated main Mall close to the U.S. Capitol. This is a much more prominent location and is very close to public transportation, food vendors and public restrooms. Go to the CureFest Facebook page and “like” the page so you can be updated on all the information as it happens.

Registration is now open for CureFest for Childhood Cancer 2014! Be a part of the growing childhood cancer movement and attend this important event on the National Mall in Washington, DC on September 20th and 21st.CureFest Walk. Go to www.curefestdc.org

For the first time, CureFest will include a 3-mile walk on the National Mall. Participants will enjoy historic views of the U.S. Capitol, the Washington Monument, The World War II Memorial, The Lincoln Memorial and The White House.

372469d4208597ea4c29e2dc005a1395The CureFest Walk was added for several reasons: One reason was to increase participation by the general public. Successful charity walks in the Washington-area typically start small but eventually attract several thousand participants within a few years of being established. There is a $20 per person registration fee to help offset the costs of the event. Register and get a free T-Shirt. Fees are waived for families directly impacted by childhood cancer.  A second reason is to provide foundations with a way to raise funds for their individual missions. When participants register for the Walk they will be have the option to raise funds for any childhood cancer foundation or group that endorses CureFest. Foundations do not have to attend the event but must be an established 501(c)3 charity in order to receive funds. Payments will be distributed to foundations through Crowdrise.

Online Auction

Last year half of the 51 organizations that attended CureFest indicated that they could not afford to pay an event registration fee of any kind. This meant that two foundations (Journey4aCure and Arms Wide Open Childhood Cancer Foundation) had to use their funds to cover the bulk of CureFest’s costs.

To pay for the operational expenses of CureFest (permits, security and rentals of tents, tables, chairs, generators, portable toilets, a stage and more) we are hosting an online auction through 24 Auctions. Our goal is to raise approximately $30,000 though the auction which opens on August 7. In order to reach this goal we will need the support of several childhood cancer foundations and advocates. Donations to the auction are being accepted at this time at https://www.24fundraiser.com/curefest

All proceeds from the auction and walk registration fee will be used to help offset the costs of CureFest. All foundations will have the opportunity to benefit from funds raised through the CureFest Walk and from donations received at the event on September 21, 2014

You can register for the CureFest Walk and the Welcome Event at: www.curefestdc.org. Registration is not required for CureFest attendees not participating in the Walk and for “A Night of Golden Lights.” These are both free. For more information about Curefest, contact Mike Gillette (mike@thetruth365.org)

Author: Joe Baber

Related Articles: On Capitol Hill is a summary of proposed legislation that may have an effect on childhood cancer.

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Seeing is Believing:

WhyICare_edited-1I am planning to write a series of posts that pertain to clinical issues, like palliative care services for improving outcomes in childhood cancer, but I wanted to take a step back and give some background first, especially about my time at St. Jude Children’s Hospital as a visiting student/intern back in late 1997. As I detailed in my introductory post from last year, “What’s MMMT got to do with it?,”  I have no personal experience with childhood cancer but joined the childhood cancer community after watching my mother suffer from a cac2logovery rare and aggressive gynecologic tumor. Cancer is bad to begin with, but my mom’s ordeal was extra bad on so many levels. No one should go through that—not my mom, and certainly not a child. I am a mother of two young girls and follow the “kids first” mantra. Kids first, always, right? Cancer research being no exception, right? But as you know, kids are NOT first, and that is so WRONG! I cannot understand or accept that, and that is why I am here. In addition to being a blogger, I am also an individual member of the Coalition Against Childhood Cancer (CAC2), where I have gotten involved in several different ways. I don’t know how I find the time, but I do, and I sleep better at night because of it.

I hate cancer but love oncology, meaning that cancer is Public Enemy #1 in my book, yet I am fascinated by tumor biology and the nuances of cancer drugs. My degree is in pharmacy, and I was trained as a clinical oncology pharmacist. Many people have never heard of “clinical pharmacists”, who practice in the hospital/clinic setting, but I can assure you that these folks do exist and are very different than the more conventional “retail pharmacists”. Ask any of my former classmates about me, and they probably would say that I was “into oncology.” As discussed in my prior post Gold vs Pink, this interest and passion stemmed from my maternal grandmother’s battle with breast cancer, which did not have a happy ending. Anytime I would hear the words cancer or chemotherapy, my ears would perk up, because I wanted to have a better understanding of what cancer is and why it is so darn hard to treat. So I decided to devote my training to oncology pharmacy. Among the many requirements to obtain a pharmacy degree, a big one is the need to amass hours as an intern at a pharmacy. Most students opt for the typical retail experience, but I did 100% of my nearly 1,000 hours at the outpatient pharmacy of the LaurieChemohoodUniversity of Pittsburgh Cancer Institute. Much of my time was spent “under the hood” mixing chemotherapy and shadowing the pharmacists by checking orders. Because the outpatient pharmacy also housed an Investigational Drug Service, I also got some clinical research experience. I spent lots of time in an old closet with no windows, counting tamoxifen tablets as part of the drug accountability for numerous breast cancer studies. I quickly became very knowledgeable about cancer drugs, despite enduring some of these mundane tasks that nobody else wanted to do—and thus were delegated to the lowly student.

I had gained massive experience in adult cancer treatments during those nearly 4 years as a student intern. I also had an inherent interest in general pediatric medicine. So in planning my 1 year of clinical clerkships/rotations required for my doctorate of LaurieID_edited-1pharmacy(called a “PharmD”) degree, I jumped on an opportunity to travel to Memphis to do a pediatric oncology rotation at St. Jude Children’s Research Hospital. That was the 6 weeks leading up to Christmas 1997.

My time at St. Jude was the most eye-opening, unforgettable 6 weeks of my life. I often wonder, if it were not for my time at St. Jude, would I have made my way to the childhood cancer community as a volunteer? I would say, probably not. I was assigned to the Leukemia/Lymphoma service. All of the children without exception were treated per-protocol in a clinical trial. My job, as a clinical pharmacist in training, was to round with the medical team, review all of the patient charts, and recommend any necessary adjustments to supportive care aspects. I’ll explain more about clinical pharmacy services in a later post, but I will just note that my responsibilities were to work with the physicians and nurses to ensure optimal management of things like pain, nausea and vomiting, diarrhea, bone marrow suppression, and nutrition. I remember our youngest patient on service, a tiny infant diagnosed with cancer shortly after birth, which shocked me because I did not realize until then that babies get cancer. I also remember a boy that I encountered in the emergency room, who was about 6 years old and had been hit in the arm playing baseball, in that exact spot where he had a tumor. It was only discovered because of the imaging done as the result of his injury. I was young, had no children then, but I felt for those parents and was frightened by that chain of events. I remember thinking, how do you deal with something like that, where a child gets injured playing a sport and winds up with a diagnosis of cancer that very same day? During my time on service, the leukemia/lymphoma patients were “doing well” overall, meaning they were fairly stable and tolerating treatment as best as could be expected; however, the acute myeloid leukemia (AML) subset was having a tougher time than the rest. The mood, overall, was tenuous at best. There were some things happening on the Solid Tumor service. Two children who had been fighting for quite some time had passed away. Keep in mind that this was during the holiday season, so it made the unbearable all the more heart-wrenching for the staff who had come to know and love these kids.

I’ll close with the encounter that I remember most vividly during my time at St. Jude. During one of my last days there, I was asked to deliver and provide patient/parent education on some discharge medication, some oral antibiotics and a few other fairly routine meds. As I started yapping, I locked eyes with the child’s mom who looked so beyond exhausted and stared back with the blankest look, she looked utterly traumatized. interior_1_525_350I knew that there was no way that she was really hearing a single word that I was saying, that there was no way her brain could process one more piece of information. That look really stuck with me, how those parents had been through hell and that it was far from over—and they knew it. In my prior rotations, the time of discharge was a fairly upbeat time, people were relieved to be getting their freedom back. In this case, however, these parents were leaving the hospital they had been practically living in – but leaving with a child who very much still has cancer. There was no relief or freedom to be had.

Needless to say, those 6 weeks at St. Jude were emotionally draining. But they gave me perspective that I would never have gained elsewhere, and I am a better person because of it. Somtimes you have to see to believe—by seeing those kids and parents, I know that kids must come first in the cancer research arena. Maybe more people need to see it to believe it too, maybe that would get people like me – those who have not been personally affected by childhood cancer – to see how improving childhood cancer funding needs to be a national priority, not just a priority for those who have been dealt the blow firsthand. It is not like it would take 6 weeks for the lightbulb to go on, 6 minutes would be enough for sure.

Author: Laurie Orloski

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Five Reasons Why You Should Join the Fight Against Cancer

Team Captain:

Amanda Haddock echoes the thoughts of a few other visionaries in the cancer arena. “We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.” Read her very insightful blog post. Team Captain

Originally posted on This Grey Matters Blog:

20140629-230537-83137451.jpgWhen we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might say impossible. So our name reflects not only the enormity of the task, but also that we plan to be successful.

Scientists have been fighting cancer for decades. We have made some advances to be sure, but we are a long way from declaring victory. There are many warriors in this battle, but no united force bringing them together. We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.

I believe that most people believe, like I did, that there are vast resources available to cancer researchers. That is not the case. There are excellent pockets of data out…

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30% Funding Cuts

30%_edited-1Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video that went viral: “Talk is bull___! We need action.”

StepUpsadstate_edited-1Cancer kills more children in the U.S. than any other disease — more than AIDS, asthma, diabetes, cystic fibrosis and congenital anomalies combined. Yet government funding for pediatric cancer research through the National Cancer Institute (NCI) has declined by 30 percent over the last decade, with further significant cuts looming. Even without these cuts, only 4% of the National Cancer Institute (NCI) budget goes to pediatric cancer research.

This lack of government support is hurting children already struggling for their lives. Since the number of children and teens in this country diagnosed each year with cancer is a small fraction of the number of adults diagnosed, drug companies see no profit in children’s cancer, and largely ignore it. Thus, while the pharmaceutical industry provides up to 60% of all research and development for adult cancer, it provides virtually none for children’s cancer, making pediatric cancer research almost entirely dependent on government funding through the NCI.

71LifeYears_edited-3True, there have been tremendous gains in survival rates for children with cancer, from 30 percent some decades ago to about 80 percent today. Such statistics are both hopeful and misleading: “survival rates” for cancer are typically measured after five years. For adult cancers, where the average age of the diagnosis is the late 60s, five years can make all the difference; for children, who on average are diagnosed at age 6, five years means not making it to high school.

What’s more, three out of five children who survive cancer suffer chronic side-effects, and many face life-threatening illnesses such as heart failure and secondary cancers. The reasons are clear: the significant gains in childhood cancer survival rates are the result of giving children “hand-me-down” drugs developed for biologically distinct adult cancers. Children’s bodies can withstand more surgeries, radiation and toxins, but for those who make it through the cancers and the immediate treatments, it is hardly surprising that the long-term side-effects are severe.

Without the profit incentive or sufficient government funding, few if any new drugs are developed for children. Despite revolutionary changes in science and technology, the FDA has approved only two drugs over the last twenty years specifically for pediatric cancer, and one-half of all the chemotherapies used for children’s cancers are over 25 years old.

GabriellaAppropriate_edited-2The response from our political leaders has been talk, but sadly, no action. In reaction to Gabriella’s plea on YouTube, Congress last year did pass the “Gabriella Miller Kids First Research Act,” which would provide about $12 million per year for a variety of pediatric diseases. However, there are reasons to doubt that the act, pushed by now-deposed House Leader Eric Cantor, will ever lead to any actual funding in the present do-nothing Congress. In 2008, both houses unanimously passed the “Conquer Childhood Cancer Act,” which authorized $30 million a year for pediatric cancer research, but they never bothered to allocate more than a miniscule fraction of that sum, and then failed to reauthorize the Act when it expired last year. No wonder ten-year-old Gabriella cursed.

Recent scientific advances have uncovered much of the molecular and genetic makeup of childhood cancers, making it possible to develop therapies – precision medicine – that directly target cancer cells and spare children’s developing bodies. Yet while the NCI will direct tens of millions of dollars in funding this year to take advantage of the latest breakthroughs and technologies for adult cancer, there is no such funding planned for children’s cancer. This is despite the fact that support for pediatric cancer research has provided one of the best returns on investment of government funded medical research.

Children’s cancer advocates are starting to mobilize. Over 250 advocates from 34 states will descend on Capitol Hill this week, representing over 60 childhood cancer organizations. At the same time a coordinated childhood cancer community social media effort will send thousands of advocates virtually to storm Congress under the campaign banner #StepUp: More Funding for Childhood Cancer Research. All advocates are working together to send the message that suffering children must no longer be the collateral damage of partisan budget battles. While it’s too late for Gabriella, we will continue to press on until her call for action is heard.

Author: Steven Crowley

Originally published in TheHill (  @thehill on Twitter | TheHill on Facebook)

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Ellie’s Hats

Ellie'sHats_edited-1Last year, school had started once again as usual, but for the first time in the PE class that I was JayandEllieteaching, I had a cute little girl who was bald headed. Ellie started kindergarten as a brave, beautiful girl without hair. She was on chemotherapy, battling acute lymphoblastic leukemia. She loved wearing hats. When I saw how much she liked hats, I decided to add a few more crazy hats to her collection for Christmas. After sharing my plan with friends , family and neighbors, I found that they wanted to provide hats too. Hats started rolling in, and soon I had gathered more hats than even Ellie could wear. Realizing that many children facing the trials of childhood cancer are treated at Inova Fairfax Hospital, I launched a campaign to collect enough hats for all of the children being treated for cancer at the hospital. Over 140 hats were delivered to an annual Christmas party, where they were handed out to all kids in attendance. Upon leaving the party , Ellie said to her mom, “I think they like my hats!” Seeing the joy the hats brought to Ellie and others was the motivation I needed to start our Ellie’s Hats organization.

Ellie’s father shared his thoughts, “I know it’s easy to look at all this and ask, what is the big deal with giving hats? Of course, our daughter’s hat collection is not going to cure her cancer. But that’s really not the point. It’s an example of something that has helped make SeptCountTwitterthis season in which she is fighting cancer less hard for her. Ellie’s crazy hats have allowed her to feel more like a normal kid when she is experiencing things that are not normal at all, that are thankfully not what most kids will have to experience in their childhoods. These hats mean something to her. And based on what I saw at a Christmas party at the hospital when donated hats were given to all the kids in attendance and what I’ve heard from our clinic staff regarding the numerous hats distributed there, these hats mean something to many other kids as well. After Ellie beats her cancer, I am hopeful that hats will continue to make their way to the heads of other children fighting cancer in the years to come. I haven’t begun to consider how I will view this long cancer season when I look back years from now, but Ellie’s Hats would make a neat legacy.”

Some feedback that we have received

“I just want to say thank you so much for the hats! The patients and parents alike absolutely LOVE them!”

“The kids LOVE the hats…. The nurses think they are beautiful.”

“Dylan and Daniel’s hats came in today and they love them.”

“Thank you for your cause, it is making a difference”

“We received a special little box of hats in the mail today. Oh, were the kids excited! Thank you! “

“My boys love their new hats! I think Ellie’s Hats is an amazing program. We are honored to have received hats. Thanks so much!”Ellie

Since we started Ellie’s Hats we have seen classes and schools hold hat drives, teenagers raise money, workplaces donate, kids request people bring hats instead of gifts to their birthday parties, and lots of other creative ideas! All of these initiatives bring joy, but also spread awareness about childhood cancer and for that we are so grateful. We must be doing something right! I will never forget the little girl who started it all. Thank you, Ellie!

Author: Jay Coakley

Editor’s Note:  Here’s a great example of someone who does not have a child with cancer, but cares and wants to help.  What a great role model for others.  The childhood cancer community thanks you, Jay!  If you would like to help Jay with Ellie’s Hats, you can visit their website and their Facebook page.

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A Home Away From Home

LadybugHouse_edited-3Meet Suzanne Corey Gwynn. She’s going to build a house in Seattle, Washington.  It’s not going to be a small little house, but a big house.  Suzanne is not an architect with a blueprint or even a carpenter with a hammer.  She’s a registered nurse with a vision and the house she is going to build is no ordinary house.

Suzanne has spent the last 30 years being a nurse and intensely caring for children and young adults with life limiting and very serious illnesses. A huge number of the patients she cared for were from other states that do not have a children’s hospital, therefore many   of the families were forced to temporarily relocate to the Seattle area for specific specialized care that was unavailable in the region nearest to their home. She has watched the children deal with their illness and watched their families while they attempted to be there and support their child and live away from home near the hospital.

The vision that Suzanne has is to build a palliative care and hospice home to serve all the families who need it so desperately.  Seattle Washington is a unique and prime location for a home to be established, specifically because Seattle’s premier hospital systems serve   ladybug_edited-2patients from the states of  Washington, Alaska, Montana, and Idaho. This is where her “Ladybug House” will serve a special purpose for these patients and families. It will be a place for families from near and far to live together in community, growing and supporting each other through life-limiting illness.

Ladybug House is a pioneering service that will add to the palliative care that already exists in the hospital setting by creating an environment where that same level of care can be provided in a community home setting equipped to care for complex diseases.  One priority in current palliative care is enabling people to be cared for in the place of their choosing and the hope is that patients and families will find Ladybug House to be the best choice during this essential time. The model of care at Ladybug House will be  holistic, integrative, and life-promoting; these elements together will create a health-enhancing cooperative effect for patients as well as their families and friends.

We salute Suzanne in her efforts to give specialized care to children and adolescents  with life limiting illnesses. The service that Ladybug House will provide is so greatly needed. In the United States there are only 2 palliative care homes for children: George Mark Children’s House in San Leandro, CA and Ryan House in Phoenix, AZ. In the United Kingdom there are 49 homes and our neighbors in Vancouver, BC just built their second home last year.  Hopefully, Ladybug House will be the third in the US with a long chain of others to follow.

Suzanne’s dream has already attracted an amazing team of volunteers. If you would like to know more about Suzanne’s vision or be a part of it, she can be contacted at suzanne@ladybughouse.org.

Author: Joe Baber

Editor’s Note: Because of her efforts and the unique home she plans to build, Suzanne was invited to the White House on June 18th where she was able to collaborate with others and garner more support  for her vision.

Recently, Suzanne was interviewed on the radio about her visit to the White House and Ladybug House.LadybugRadio_edited-1 Hear first-hand about her vision to help out of town families that find themselves dealing with their child’s cancer and other life threatening diseases.

 

Related Article:

PalliativeCare

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 Palliative Care Misunderstood

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Your child has cancer, what next?

You have just been told, “Your child has cancer and they are going to need a lot of care.” No doubt about it, they will, but so are you. In order to properly take care of your child, as the parent you must take care of yourself first. In this article, reprinted from the Courageous Parents Network (CPN), your will learn three key ingredients that will prepare you to give the best care possible to your child. You will also have the opportunity to find a great resource in CPN that you can to use to navigate you on your new journey.  Joe Baber, EditorBestCare_edited-1

Each child is an individual and every family has its own particular patterns, needs, ways of coping and values. Care choices that feel right and work for one family may not feel right or work for another. Thus there is no one formula for caring for a child with a life-limiting or threatening illness. (Yes, the title is misleading!) There are no ‘right choices,’ which also means there are no wrong ones either. However, I am bold to strongly encourage parents to include three ingredients in the care formula they develop for their family, regardless of the specifics of their child’s illness and the treatment protocol. These ingredients are, in my lived experience and that of other parents with whom I have spoken, incredibly helpful in ensuring the greatest peace of mind and spirit and minimal regret when making choices for the child. The addition of these ingredients can have lasting impact on the family experience and how the family writes the narrative of their child’s illness journey, life, and, if it occurs, death.

FlaskBlue_edited-1Ingredient #1: Pediatric Palliative Care  If you have poked around the Courageous Parents Network web site, you know that promoting pediatric palliative care is central to our work. Why? Because we have experienced first-hand the value it adds to the child’s care plan and the impact it has on the entire family. My daughter Cameron received palliative care from her primary care doctor and a team of nurses who cared for her at home. I could go on and on about what it is and why it matters, but you can read about it on the CPN site. However, if you go no further than this blog, here is what I would have you know most about palliative care— Palliative care is NOT END-OF-LIFE care—that is hospice care. It does NOT mean you’ve given up hope for survival or quality-of-life. Quite the opposite: it is an extra layer of care that ideally begins at diagnosis and that helps a family identify their care goals for their child and their family. It looks beyond the disease itself to support the psychological and emotional and spiritual needs of the entire family. It reduces patient and family stress. Its goal is QUALITY OF LIFE. Palliative care specialists share a family’s hope that the child will survive and they also work to hold and pursue the family’s care goals so as to keep the parents oriented when things start feeling crazy or confusing. Palliative care just makes everything better.

FlaskRed_edited-1Ingredient #2: Grief Counseling   You may say that therapy isn’t for you, or that you don’t have time to take for yourself, or that you’re in coping mode and aren’t officially grieving. I would encourage you to think otherwise, to open your mind to the value that grief counseling can offer you, your spouse/partner if appropriate, and thus, by extension your child and entire family.

When your child is diagnosed with a life-limiting illness, you immediately start grieving. Grief counseling is a place to park your sadness and anxieties and to work through your concerns and wishes to figure out what you really want for your child and family. It is a place to grieve, to release your emotions, and to express your wishes. It is an opportunity to get really really dark and to then find signs of light. It is a place for two parents to wrestle with their respective differences in a safe and facilitated environment and hopefully find common ground.

Grief counselors come in many forms: psychologists, social workers, hospital chaplains, ministers, rabbis, other spiritual leaders. You’ll need to find one that works for you. There are some (funny) bad stories out there from parents who had a few false starts in their quest for a grief counselor. My husband’s and my first attempt, for example, was a woman who met us in her home office and started dead-heading her potted plants while she pretended to listen to us. She also told us that she understood what we were going through because her granddaughter had had a scare with illness but luckily the test was a false positive and she was fine (hello?!). Another parent shared with me that in her very first attempt at counseling with her husband the counselor wanted to know what impact the son’s illness was having on their sex life! (Hellooooo???!!!!) Please, laugh at these stories but do not be daunted! We found a fabulous counselor on our second try and we credit her with keeping us sane, keeping us married, and giving us a road map for caring for our daughter all the way through to her end-of life and beyond. She also counseled our older daughter. We first saw her once a month (and turned it into a date), then every other week, and by the end, we were seeing her every week. (I like to joke that I would have moved her into the house if I could have!) There’s no requisite number of visits, of course: once a week, once a month, every-other-month, on-demand as needed. What matters is that you have someone you like who practices active listening and helps you hear yourself, hear your spouse/partner, and find your way. Remember, like the flight attendants say on the airplane, you can’t truly take care of your child if you’re not taking care of yourself. Counseling is a gift you give yourself, your partner, and your family.

To find a grief counselor, check with your primary care doctor, the palliative care team, the hospital where your child is being seen, your place of worship, your friends. It can take a few false starts but I promise you will thank yourself for the effort. Grief counseling helps you feel like you’re in control and truly parenting.

flaskGreen_edited-1Ingredient #3: Other parents who are walking in your shoes   Parents caring for children with life-limiting illness need the company and counsel of those who they know really really really understand, people who will answer questions head-on without reservation or platitudes, who will speak frankly about the hard stuff—like how they feel trapped or what end-of-life looks like—who will use inappropriate humor unapologetically to offset the pain. These people are not the professional clinicians who, with rare exception, have not actually walked in these parents’ shoes: rather, they are fellow parents whose children are also living with a life-limiting illness. And it doesn’t even need to be the same diagnosis. The symptoms are only a piece of the puzzle. The emotional roller-coaster, the fear, the sadness, the anger, the anxiety, the impatience, the daily grinding stresses are the other big(ger) piece that all of these parents have in common. In her memoir, The Still Point of the Turning World and a related New York Times op-ed, Emily Rapp refers to these parents as Dragon Parents: “To prepare throughout a child’s whole life for the loss of that boy or that girl, and then to live with it, takes a new ferocity, a new way of thinking, a new animal.” Ideally, Dragon Parents can find each other in actual support groups where they meet periodically to share and support each other as equals. One of CPN’s advisors refer to the active dynamic in peer support as ‘horizontal lines of communication.’ In my own personal experience, we found this peer support immediately in my brother- and sister-in-law whose son (my nephew) Hayden had the same degenerative disease and was a year further along. We also found it in the annual family conference for National Tay-Sachs and Allied Disease. But if physical groups aren’t a possibility, Facebook groups can fill the gap and bring you into community with like parents around the world. If you can find yourself such a group or even one or two parent allies, it will be a life-line that helps to normalize the abnormal.

CourageousParents_edited-1If we could, Courageous Parents Network would personally find each family a palliative care team, a grief counselor and a parent peer-group. Unfortunately, this isn’t possible, and so Courageous Parents Network tries to bring these resources virtually to parents wherever they are: at home or in the hospital. The CPN site includes information about “anticipatory grief”, the value of palliative care, what “complicated living” looks like, and a framework for making difficult decisions. Our video library features a gifted and experienced grief counselor who frames and normalizes the broad range of issues that parents confront. And perhaps, most importantly, the library features parents talking about their experiences and feelings around these issues, providing a virtual and asynchronous support group. (We are also building a CPN group on Facebook. The goal of all of these resources is to shine a light on the dark places and help parents see that they are not alone and that they can do the hard and important work of caring for their child all the way through, with grace and open hearts and faith.

Author: Blyth Lord

Special thanks to Blyth Lord, Founder of the Courageous Parents Network, for allowing Four Square Clobbers Cancer to reprint “#8—Three ingredients for the best Care Formula ever.” From our point of view, we believe there actually are four ingredients and she may have over looked the forth. The forth ingredient is Courageous Parents Network.

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Related article: Palliative Care – Misunderstood

PalliativeCare

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Cameron Week

Cameron Week_edited-1

Editor’s Note: It is with deep respect and profound appreciation for mothers everywhere that Four Square Clobbers Cancer has  chosen Mother’s Day to present Blyth Lord’s touching and tender article from her Courageous Parents Network.

Today is Hump Day in Cameron Week. Cameron Week refers to the five days in May between my daughter Cameron’s birthday – May 4, 1999 – and the day she died – May 9, 2001. Much like spring in New England where we live, Cameron Week sneaks up on us. One minute we’re going about our business as a family of four, and then Wham! we are intensely reminded that we are a family of five with a hole in the middle. Cameron would be 15 this week, but my husband Charlie and I and our daughters Taylor (17) and Eliza (13) agree that she will always be a beautiful and precious 2-year old to us.

I was having lunch with one of Courageous Parents Network’s amazing advisors yesterday and she asked me how we handle Cameron Week. I told her that this year we celebrated her birthday by eating a delicious chocolate cake at dinner (an exceptional treat as I never bake). We went around the table and each said something about Cameron. I went last but when it got to me, I couldn’t speak. I was crying and there were no words. My longing for Cameron’s physical being overwhelmed me and I was undone. Any parent whose child has died knows this undoing: the painful desire to touch one’s child again and knowing that it is one of the few things in this world that Can Not Happen Ever Again. The impossibility of this can make me feel a little crazy. Indeed, I can see how grief could turn a person mad. Thus, I have learned not to pay much attention to this piece of it – to push the longing aside when it starts to rear its head – because honestly there is absolutely Nothing To Be Done and a person can’t sit around all day crying for the impossible. But on Cameron’s birthday, with her photo sitting in the middle of the table, a piece of chocolate cake to my side, I couldn’t ignore it. It was staring at me, I stared back, and I wept.

The other thing I told this friend about Cameron Week is how perfectly situated I think it is. Cameron Week comes around in early May when spring arrives in New England and the glorious green leaf buds burst out on the trees. I remember taking a walk in the woods near our house a few days after her 2nd birthday and a few days before she died, when we knew she was in her last week, and finding the juxtaposition of spring coming while Cameron was leaving to be interesting. Interesting and fitting. As my first blog “Surrender” notes, when she was first diagnosed with her fatal disease, I couldn’t fathom how the natural world was proceeding as always, heedless of our tragedy. But now, 18-months later, I found Nature’s persistent optimism comforting. Spring is Nature’s most hopeful time of year and this hope was soothing to me. Our grief counselor had helped us understand that as Cameron’s body was shutting down, her spirit was getting bigger and bigger. Soon it would get so big it would leave her body and go mix with Nature’s energy. The notion that her energy would go into the universe and mix with the energy that brought us leaves and tulips and birdsong was a good notion.

CourageousParents_edited-1Cameron Week 2014 is a little different for me in that it marks the one-year anniversary of my leaving my job in television production to found Courageous Parents Network. I have spent the last year meeting the most incredible parents and some of their children, listening to them, learning from them, admiring them. I spend my days talking with parents whose children are living with a fatal prognosis or have died, and I am nourished by their stories and their wisdom. Given all of this, I was a little surprised by how hard I cried on Cameron’s birthday this past Sunday, (and who knows how I will be this coming Friday when we recognize the anniversary of her death). I witness other parents’ grief every day. But this year, Cameron Week has reminded me that I am first and foremost a mom who really misses her daughter.

God bless you Cameron.

Author: Blyth Lord

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Bear with Me

bearwithme_edited-1I was a nurse for 29+ years and have loved the opportunities that I had to care for children with cancer during that time.  Knowing the role of a nurse and what an emotional toll childhood cancer takes on children and their families,  people would often ask, “How can you care for these children?” The truth is that I never wanted to do anything else.

WorldwideDuring my time as a nurse, I discovered several truths: (1) Many people are not aware of the large number of children being diagnosed with cancer until they have a child that receives the awful, and surprising  diagnosis. Today, each and everyday, 43 children will be diagnosed with cancer.  (2) Childhood cancer is not as  rare as most people think it is. Worldwide, close to a quarter of a million children will get cancer each year.  Many children are being diagnosed with thyroid, kidney, and brain cancers that were formally known as “adult cancers.

pinkbaseball_edited-1As someone who has been very closely involved with precious children being treated for cancer and watching what their families have to endure, it has angered me that so many companies have items that promote breast cancer awareness and other diseases, but seem to ignore the number one disease killer of children.  I am also angered that baseball teams do pink on Mother’s Day for breast cancer and blue on Father’s Day for variety of men’s cancer conditions but overlook childhood cancer and it’s gold ribbon especially in September.

Awareness is needed for childhood cancer just as it was needed for HIV Aids, and Breast Cancer.  It is the awareness that will eventually lead to the funding that is so desperately needed for pediatric cancer research. If people were fully aware of the plight of children with cancer, I am sure the National Cancer Institute would be spending more than 4% on pediatric cancer.

bearcure_edited-1Many times when a child is diagnosed or in treatment, friends and families don’t know what to do, so they send  or give them stuffed animals, mostly bears.  The child gets attached to his bear and it goes wherever he goes.  It provides comfort. Sarah Chana Radcliffe, M.Ed., C.Psych. Assoc said, “A teddy bear can provide comfort through hard times. When a child suffers a loss or when he or she is feeling BearWhy_edited-1fearful or upset, the inanimate object has the power to soothe and comfort. The animal “looks” as if it understands and cares, which allows a child to feel supported while he or she is all alone.”

Additionally, a bear for childhood cancer awareness would be a bear that could be purchased for children to provide comfort during their treatment or a family could purchase to honor a child that has lost their life to the monster known as childhood cancer. No kid can fight cancer alone and with the recognition that a bear or “special friend” can be so important to children during 2014-04-18 10.48.26 amtheir treatment for cancer, I decided  to do something. In order to improve awareness, and to benefit children with cancer, I started a petition and Facebook page (so far, we have shipped 350 bears to kids). I want to appeal to a company to manufacture a childhood cancer awareness bear. If you have not already done so, please sign our petition by clicking on the  photo to the left.

BearMarket_edited-1If they made an awareness bear, companies that profit from the sale of stuffed animals could do themselves a big favor and also help children with cancer at the same time.  I believe they don’t realize the profit potential in having a childhood cancer bear. Potential manufacturers may only be looking at the annual diagnosis rate. They may not even be aware that there  are over 40,000 children undergoing treatment now and there are 400,000 survivors in the United States alone! Can you imagine how many bears could have been sold if they were available at the time of diagnosis?  If they offered bears in blue, pink, yellow and brown, each with a beautiful gold ribbon, think of how many they could potentially sell?   A lot of kids would want to own all of them. The possibilities are endless!

Author: Lynne Stieflerbounceballauthor

 

Posted in Childhood Cancer, Pediatric Cancer, Uncategorized | Tagged , , , , , , | 3 Comments

Legislation: Where do you stand?

Legislation_edited-2Where do you stand? This is an election year for all of our Congressional Representatives. We should be asking them where they stand when it comes to legislation that can have an effect on childhood cancer research and/or on the children affected by this terrible and much underfunded disease.

In order to ask the candidates about their commitment to various bills that affect childhood cancer, we need to do some homework. After we review pending legislation and discuss with other people in the community, we need to determine what our position is, and this is the difficult part,  seek out our candidate’s positions and then support those who best reflect our interests.

Our community has several leadership organizations, associations, and collaborations  that represent individuals and smaller foundations involved in childhood cancer fundraising, research, patient care and advocacy.  Most of them take stands on pending legislation before congress. If you belong to or follow an association, an alliance, collaboration, or any other group, do you know where they stand on various bills and issues? Ask, you may be surprised to find out that they may not feel the same as you. If you generally hear from them from time to time on various requests to help in contacting congress but are not hearing from them on legislation that appeals to you, chances are they do not favor it. You should engage them and ask…

pogoWhere do you stand?

The Gabriella Miller Kids First Act: This is not over. We have one very important step to complete. Here’s a bill that was passed by the US House of Representatives with a bi-partisan vote in December, 2013. It was passed in March, 2014 by the US Senate by unanimous consent and recently signed by President Obama on April 3, 2014.  All that is needed now is to have it appropriated.  In order to complete the last and final phase of action on this bill it will require all of those concerned with children’s health to rally behind it.  Shame on our childhood cancer community and our leaders if we are unable to complete the final phase.  Ask your favorite leadership group,  “Where do you stand on providing support to have this bill appropriated?”  It’s time for us to stand up and be counted.  The government has done everything we have asked 447915420_640on this bill. We can not allow a bill, passed by the House and Senate and signed by the President, to die a slow and quiet death waiting to be appropriated as the original $150 million Caroline Pryce Walker Conquer Cancer Bill did in 2009. If we allow the Gabriella Miller Kids First Research Act to go unappropriated, what kind of signal does that send to our legislators? The only thing in our way now is us and our childhood cancer community’s disunity.

Below are five bills that are still under consideration in congress that, if passed,  I believe would benefit kids with cancer. Check them out by clicking on the name of the bill. It’s fine if you don’t agree with me, but I urge you to find your personal hot buttons and ask your congressional candidates, “Where do you stand?”

HR: 460 Patients’ Access to Treatments Act of 2013 – Amends the Public Health Service Act to establish cost-sharing limits for health plans that cover prescription drugs and use a formulary or other tiered cost-sharing structure.

H.R. 2058 Childhood Cancer Survivors’ Quality of Life Act of 2013 – Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) to make grants to eligible entities to establish pilot programs to develop, study, or evaluate model systems for monitoring and caring for childhood cancer survivors. So far, this bill has 27 co-sponsors.

2014-03-15 06.39.13 amH.R. 2090: Patient Choice Act of 2013 – A patient or family facing a life threatening or terminal illness would have the ability to obtain drugs that have already been in phase I and II clinical trials with established safety profiles. You may remember the social media campaign that was waged very recently to get special medicine out of clinical trials for 7 yr.-old Josh Hardy. If this bill had been passed, Josh would have had an opportunity to use that medicine without going to social media.

HR.2607: Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act – The bill would expand efforts so that all children, adolescents, and young adults diagnosed with cancer may be included in childhood cancer biorepositories for the purpose of creating opportunities for peer-reviewed cancer research.

HR.3116: The MODDERN Cures Act of 2013-(acronym for Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network) Provides for the development of treatments and cures for unmet medical needs – such as autoimmune diseases, neurological conditions, cancer, and rare diseases. Typically, medicines for these kinds of medical needs take longer than average to develop. Legislation like this could help speed the process along and bring treatments to the hands of patients who desperately need them. It gives patent incentives to manufacturers.

NCIdollar_edited-1This is not a bill, it can’t be legislated, but we need to bring congressional and senatorial pressure on the National Institutes of Health (NIH) and the National Cancer Institute (NCI) on the proper allocation of research funds between adult’s and children’s  cancers.   If you believe we should be spending 96% of our cancer research on adults, then do nothing.  If  you believe kid’s should have more than 4%, you need to speak up. It’s just that simple.  Check out this letter template as a place to start.

When it comes to supporting appropriations and legislation that will benefit children fighting cancer, we can be passive  or active. I prefer  to be active, ’cause cancer certainly is not passive. That’s where I stand.  Where do you stand?

Author: Joe Baberbounceballauthor

LessRDmoreK24SQ_edited-1

Posted in Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , | 2 Comments

RARE is not a dirty word

rare

Editor’s Note: No one in my childhood cancer community, including me, likes the word “rare” when it used to describe the disease. I met Rob and three others from the childhood cancer community at a three day RDLA event in Washington, DC. One of the speakers I listened to at the conference was a reporter from the Wall Street Journal and she spoke of a really, really rare cancer her mother had. She said only 7,000 people, yes that’s right, only 7,000 people per year were affected by the type of cancer from which her mother eventually died. At that moment, I realized my grandson’s neuroblastoma which affects 600 kids a year was in fact rare. My experience at the conference mirrored Rob’s which he very eloquently describes below. By  the way, at the conference we met Danielle Leach  from Inspire.Com and she suggested the title for this article.    Team Captain

rdd-logoThis was my second consecutive year at the Rare Disease Legislative Advocacy Days and the experience did not disappoint me. RDLA has the same challenges with rare populations as we do with childhood cancer, some of them being FDA reform, low or nonexistent funding and lack of drug development. The atmosphere at RDLA is very comfortable for the childhood cancer advocate. We are welcome  as part of the team and it seems that they recognize that our challenges are much in line with theirs. Statistically, the childhood cancer community fits within the scope of rare disease with the guideline being less than 200,000 diagnoses per year and includes 7000 other diseases. There is a lot that this group does well but there are a few in particular that the childhood cancer community can embrace and aspire to. The 2 things that I wish to highlight from the experience are education and access.

The schedule surrounding the RDLA week was a busy one. At some times choices were offered of topics at different venues to fit your interest. We attended as many as we could and the education that was offered through the sampanel discussions and presentations were unprecedented in my 6 years of advocacy experience. The opening night was a documentary on “progeria” that educated us about this disease that had no treatment. The documentary is a case study of how a single family rallied around this disease and pushed a drug through to market that is actually adding about 5 years to these kids life expectancy through drugs that improve their vascular strength.

After the documentary, the panel discussion opened with introductions, panelists included Dr. Francis Collins, Director, NIH. I am proud to announce that the 5 attendees from the childhood cancer cause in the audience lead the Q & A session with Dr. Collins and no one was holding anything back but we were all respectful at the same time.  I actually had a short conversation with him after the event and he was very receptive to our challenges and assured me that our advocacy efforts are necessary to get the changes we need for our patient population, for our kids.

rdla logoIn conclusion, I can attest that the first year I was a bit star-struck. This year I knew what to expect and was ready to engage. The experience that was led by RDLA is one that all serious advocates should attend to shape their advocacy tools and experience how another well organized cause does things. I encourage everyone to get involved with RDLA and they will open doors for our childhood cancer community.

Author: Rob Whan

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