Four-Square Clobbers Cancer

Shocker of a Vacation

Posted on October 2, 2013 by Team Captain

Most people spend their summers doing things like taking vacation. I, on the other hand, spent this summer getting involved in childhood cancer awareness and trying to figure out ways to spearhead a new fundraising effort. As I discussed in my prior post, The Climb, my journey into the childhood cancer world took a major leap forward this past June–because I took my older daughter, who was then 5, to a small local charity run/walk to benefit St. Jude and was struck by the fact that there were no kids there on a beautiful morning to support kids with cancer. I was really annoyed that healthy kids were not there running or walking on behalf of kids whose childhoods are being sidelined from cancer and chemotherapy. Maybe I was just in a ripe mood that day, but I haven’t gotten over it one bit—so it looks to be permanent. adfasdwrwerqeqrtqetq3tqtrwerttwrewreadfasdwrwerqwerqwerwefdsfasdf

I will be talking a lot more about my planned event in future posts, but I want to focus the rest of this one on 10 very shocking things that I have learned from early June to late September. Here we go, in no particular order:

1. I was shocked to learn that September is National Childhood Cancer month and symbolized by the gold ribbon: I am very experienced and knowledgeable about cancer, both professionally and personally (through my family history, as highlighted in my introductory post, What’s MMMT got to do with it?, and in Gold vs Pink), and have always had a very profound sense of compassion for children with cancer. I opted to travel down to St. Jude during my clinical pharmacy clerkships. I drove solo from Pennsylvania to Tennessee. It was not a forced assignment, but my choice, and it was not driven by a desire to see Graceland (which was very underwhelming, by the way). On top of all that, I am super protective of the health of my daughters and would do anything to protect them, so I was very upset with myself that I did not know this. How on earth did I not know this? Turns out, however, that I am not alone. Sadly, at least in my world, it seems like practically nobody has any clue that September = Childhood cancer = Gold, and I can say that with confidence as I have been directly asking people about it over the last month. I get the same response—wow, no, I didn’t know that!

2. I was shocked to hear Fox Sports announcers talking about childhood cancer! Out of nowhere, I heard it as I was watching the Philadelphia Eagles get their butts kicked on Sept 29^th!: If you haven’t heard, there is a new “Pro Football Childhood Cancer Awareness Campaign.” I guess it is not an official NFL thing (at least not yet) as they used the odd word choice of “Pro Football,” but an excellent step in the right direction nonetheless. Just by making the announcement, more people now know about the gold thing (Yay! See friends, I wasn’t making it up). A little earlier in the month would have been nice, but we’ll still take the 29^th! See White House, it is never too late, as they say!

3. I was shocked to learn just how dreadful the state of pediatric-specific cancer funding is and the extent to which advances in treatment have been lagging: I don’t agree with it, but I can understand why pharmaceutical/biotech companies have not been investing in pediatric cancer research. Again, I am not saying that it is right. The pitiful funding from the federal government and places like the American Cancer Society is far harder for me to even grasp. I truly did not appreciate how little of those budgets are being allotted to the kids. Seriously, kids with cancer are and have been low man on the totem pole–how did this happen and what will it take to fix it?

4. I was shocked to learn just how high the long-term complication rate is among childhood cancer survivors: My expertise is cancer drugs, so I am well aware of their side effects and that they cause things like secondary cancers. Having said that, I did not realize that it is more likely than not that survivors will suffer from long-term complications and disabilities.

5. I was shocked to learn about a horrible brain tumor called a DIPG and the critical need for viable treatment options for this entity: I can honestly say that before this summer, I had never heard the term ‘diffuse intrinsic pontine glioma’ or its acronym DIPG. As part of my fundraising interest, in researching existing childhood cancer organizations, I quickly learned about a number of children who have had their lives cut so short because of DIPGs. I was shocked that I have never heard or read about DIPGs, considering that I am in the cancer literature practically every day and come across all sorts of things that I am not looking for.

6. I was shocked at how insular the childhood cancer community is: I am just a human being trying to do my part to help children and have my kids do their part too, so please consider me a real member of this community and not an outsider.

7. I was shocked to hear about families and friends abandoning and fleeing from those who have lost a child or grandchild from cancer: I have been hearing and reading about it over and over, how relationships have been completely lost as part of the aftermath of losing a child from cancer. I am not the most forgiving person by nature, so I probably shouldn’t be offering advice here, but in the spirit of helping kids with cancer, I will put this out there: I hope that some of you can find a way to give peace a chance with time. Maybe not today or tomorrow, but at some point in the future there might be a relationship that will all of a sudden seem at least a little fixable.

8. I was shocked to hear that childhood cancer organizations would engage in competition against one another, and then come to my own conclusion that it appears to be true: I did not want to believe that competition exists in this community, in ways that would be serving as a barrier to making strides toward the ultimate goal of finding cures, but I have seen enough to know that it is indeed happening. This is actually a very thorny topic for me right now and I can feel my blood pressure rising as I type, so I am going to defer further comment to a later time. This will likely be a topic of a separate blog post, full of spice and vinegar. In the meantime–Maestro, can I get a little “Peace Train,“ please?

9. I was shocked to learn just how hard it is to get people in the childhood cancer community to pick up a phone to answer a call, return a voice-mail, or respond to an e-mail from someone simply looking to help: I am not used to having phone calls and e-mails go unanswered, people don’t do that in my paying job. Quite frankly, if I didn’t know better, I may think that the state of childhood cancer treatment and research funding must be peachy and there is no need for any additional help. This can give a very bad and a totally wrong impression, I’m glad that I know better. I keep reminding myself that the kids who are battling cancer would not turn me away, so I remain here for them.

10. I was shocked at the degree to which the mere mention of the words “childhood cancer” evokes a “deer in the headlights” response among people: In talking with my friends and family about childhood cancer and why it is important for people without a personal experience to get involved, I keep it to this, “Childhood cancer research is majorly underfunded, kids are being left behind when it comes to new treatments, and most of the effort to raise awareness and funds is led by parents who have lost their own children and they should not be forced to shoulder that burden. So, I have decided to get involved with my kids and am looking for others to join us.” I guess I am naïve, but I thought that this would evoke a sense of some serious outrage and thus a major, immediate call to action. Instead, the response from most (but not all) people is very flat. Even with my best Rah-Rah Cheerleader impersonation about how we can make a difference and genuine optimism that there is hope for the future, I generally cannot get any enthusiasm back from people. I think I lose many at them at the words “childhood cancer.” It basically freaks them out! It turns off their brain to protect it from any further damage, and morphs them into really sad puppies. I could go on and on about why I think people shy away and why I think they are making a big mistake, but I am already over the recommended word limit, so I think it is time for me to wrap up for now and wish you well until next time.

Author: Laurie O.

Friends Don’t Let Friends Relay

Posted on September 27, 2013 by Team Captain

Editor’s note: Little has changed since Jonathan Agin penned this article for the Huffington Post in February, 2013.

There are many amazing charitable organizations focused upon cancer research and support. Most of us can rattle off the big ones from the top of our heads. It is a crowded market and thus, when making decisions as to which organizations to support, you should know where the money is going and how those foundations market themselves. In the childhood cancer community, we are fortunate to have many really strong foundations that are doing amazing work. We just need to learn how to collaborate better. Unfortunately, there are some foundations that try to occupy the arena with nothing more than smoke and mirrors. One such entity is the American Cancer Society (ACS). ACS is one of the largest, if not the largest cancer foundations on the planet. They have done amazing work in the space of cancer by leading the way on many fronts. Where the ACS should bow their heads in shame is when it comes to childhood cancer. Their track record of funding for childhood cancer is frankly deplorable despite the manner in which they utilize children to draw donors and participation in their events.

For every dollar that ACS raised in 2010, only a single penny was spent on childhood cancer. Another calculation has this number placed at one half of a penny. That is rather dismal given the amount of advertising that ACS does utilizing children. Many people participate in the signature event of Relay for Life. We have all seen signs and posts on various social media seeking participants and donations for this event. I personally have made donations. Thousands of amazing people specifically host this event thinking they are making a contribution to the fight against childhood cancer. This could not be further from the truth. Those who do put on this event ultimately should understand how little of their efforts go towards helping children with cancer. Literally, a penny or half of a penny on each dollar.

In addition to the lack of funds directed towards childhood cancer, ACS recently cut programs that specifically were aimed at benefiting children with cancer. The stated purpose of dropping these programs, as alleged by ACS, is to ensure that a cure for cancer is found sooner. The cut in these programs will effect children with cancer and college students who had cancer. Yet another example of how ACS simply utilizes children to attain significant wealth and then ultimately forgets all about the smallest warriors. This should come as a surprise considering the amount of money that ACS has on hand.

If you take a look at ACS, you soon understand that they are simply being intellectually dishonest on several fronts. ACS is one of the wealthiest charitable organizations in the world. With over a billion dollars in net assets, it is a behemoth among cancer charities and all other organizations for that matter. Much of ACS’s spend goes towards overhead. The CEO of ACS is well compensated for his efforts at keeping the organization as the giant on the cancer block. It must be a difficult job creating all this wealth.

ACS spends a significant amount of time defending itself from media missteps. Take for example the internet campaign to create a “Bald Barbie” to help little girls with cancer. Andrew Becker, the Director of Media Relations for ACS caught wind of this grassroots lobbying. Without giving it a thought, he took to his blog and created a firestorm for ACS with his criticism of the activism behind the campaign. Thankfully he apologized, but not before the damage was done for ACS. Regardless of what you think about the underlying campaign, Mr. Becker’s piece highlights the fact that ACS is not an organization that supports the fight against childhood cancer.

The point I am trying to make here is not that ACS is an evil empire. To the contrary, although it may seem otherwise from my words. I am simply trying to provide information to arm people to make enlightened decisions where to donate money or raise funds and who to support. If your goal is to direct funding towards childhood cancer, whether in a support role or for research, my suggestion is to look beyond ACS and check out other organizations. The answer exists in black and white and the numbers do not lie.

To ACS, I would ask that you discontinue your intellectually dishonest campaign that utilizes the faces of bald children in an effort to continue to build your revenues. ACS has confused consumers who may not be completely aware of these facts. ACS continues to accept tremendous sums of money from amazing people through events like Relay for Life who may believe they are raising money for childhood cancer. Focus on adults and let others in the childhood cancer community continue to do the amazing work that is necessary to save our children. ACS has done and continues to do amazing work on behalf of the adult cancer community. To John R. Seffrin, the CEO of ACS, I am available anytime for a conversation on these issues. I am awash with ideas how to help. I will wait for your call.

Author: Jonathan Agin

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Dear American Cancer Society

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged ACS, American Cancer Society, John R. Seffrin, Jonathan Agin | Leave a comment

Never Ever Capitalize “cancer”

Posted on September 23, 2013 by Team Captain

Every Year in September during the Childhood Cancer Summit and CureFest I remember five years ago, meeting Carson’s mother and Max’s grandfather.

Richard Plotkin, a retired lawyer, read a book written by Annette Leslie’s, then 17 year-old son, Carson. He was drawn to Carson’s book because he is also Vice Chairman of Max Cure, a foundation named after his grandson Max who is a cancer survivor. Richard liked the little book wrapped in a plain brown cover so much that he bought thirty copies and passed them out to friends. My daughter Beth Anne was a recipient of Richard’s generosity. She read it and when I joined in her fight against childhood cancer, she gave me the book to read. We both thought it was an excellent book and one that would benefit anyone dealing in childhood cancer. Ever since reading the book, I have always had the most difficult time writing the word, “cancer.” In his book, Carson said we should never, ever capitalize the word because it was not worthy and did not deserve the honor of being capitalized. He was 100% right.

That September back then, during the third annual Congressional Caucus on Childhood cancer (little “c” in respect of Carson), Beth Anne and I had lunch with Richard, and for the first time, I met Annette Leslie who joined us. She is a delightful lady with a nice Texas accent who, I believe, has never met a stranger in her life. In the conversations during that sunny, warm fall day when we lunched at a sandwich bistro, Annette made Carson and his book literally come to life! The stories of him and his thoughts were so real and powerful. While Annette was talking, I looked at Richard and he looked at me. We were both trying to hide, from the two ladies at the table, the tears that were welling up in our eyes. Beth Anne and I were so moved, we took our copy of the book and attached a sign-off sheet which told the reader that the book was being given to them because they may be someone who could help make significant changes in how childhood cancer is perceived and/or could possibly help in obtaining more research opportunities for better treatments and diagnostics. We added our signatures and gave it to someone in Washington, DC who we both believed could make a difference and asked them to read the book, sign the sheet, and in turn, give it to another person they thought could aid in the fight against childhood cancer.

The next year at the fourth Congressional Caucus we met Annette again. This time she was a featured speaker at the 2013 Hyundai Hope on Wheels Gala which we attended in the evening after the caucus. Hyundai Motor Company was celebrating their fifteen years involvement and over $72,000,000 in grants and contributions to childhood cancer research they had made during that time. Now, I believe the total exceeds $120,000,000 in grants and contributions. For this wonderful event, Hyundai brought 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.

I asked Annette to allow Four Square Clobbers cancer to publish her speech and she graciously consented.

SPACE

Ladies and Gentlemen, I present Carson’s Mom, Annette Leslie.

You children here tonight have fought valiantly. Each one of you has a powerful story to tell. Tell it often.

Tonight, Zafar (Hyundai Motors USA) has given me a few minutes on my soapbox because unfortunately, I too have a story to tell. Thank you Zafar!

My boy Carson left a BIG mark on this world. The kid had moxie, a bold charming confidence, an indomitable spirit, and a confidant swagger. In his book he said, “I love sports, babies & Mexican food,” and I know that he loved his brother more than anyone else on earth.

Carson was busy with high school, football and girls, when one morning, he told me he was feeling weird. Well, weird’s a little difficult to diagnose and for 3 weeks we went back and forth to doctors, pharmacies, and specialists, as symptoms worsened, no one could figure out what was wrong with my boy.

Then “that” morning, the morning that changed the calendar of our world, Carson said, “Mom, something is really weird, I think I’m seeing two of everything.” After I could breath again, we jumped into my car and took off. We didn’t slow down until we got to the emergency room!

I will never, ever forget starring at that doctor’s face and hearing words like, “brain tumor,” “cancer,” “neurosurgeon,” “oncologist,” “chemotherapy,” “radiation.” Knowing that my boy Carson was at the center of those words, we were scared. I wanted to crawl into his brain and take it on. He had baseballs to throw, fish to catch and girls to date, but the fight was his.

John Wayne nailed it when he said, “Courage is being scared to death but saddling up anyway.” So, we saddled up and we were carried by faith, family & friends. We embraced each bright spot they offered, and they offered many.

It was a gift to be Carson’s mom. Naturally, moms teach their kids about life, but when Carson was diagnosed with cancer, he began to teach us that courage comes from God and to embrace moments of goodness in the midst of pain. In his book, he said, “The biggest blessing is life, every night I thank God for every day. Before cancer, I used to pray and thank God for my life, but now I mean it!”

As Carson’s journey pressed on and we searched the world for a cure that is yet to be discovered, the kid rocked that smooth bald head that undeniably shouted cancer, and during his valiant fight, he kept a journal of his fears, his dreams and his loss of dreams.

Being a dealmaker, he negotiated with his English teacher that his journal should count as his passing grade for the year and she agreed. That negotiated English assignment turned into a book with his teacher helping him dig deep and put his heart into words.

One night, in the hospital when neither of us were sleeping, Carson whispered, “Mom, make sure my book gets published.” His book, “Carry Me“ is some of my boy’s secrets and a promise made good. His thoughts are raw and true and honest. We’ve sold thousands with proceeds going to research!

I brought some to give away tonight if anyone is interested.

Another night when neither one of were sleeping, he asked that the tumors that invaded his brain be studied with the hope of being part of helping to find a cure. Those tumors are being studied in Texas. Scientists right now, are finding bold new discoveries using his tumors. Also, in Texas, there are millions of dollars slotted in a collaborative effort with CPRIT for research grants called the Carson Leslie Awards for pediatric brain cancers. Hopefully new and less toxic treatments will be discovered and that will be good, but a CURE is the goal because cancer in children is not meant to be an ongoing business. I’m part of childhood cancer because I was forced into it. Hyundai is part of childhood cancer by choice.

Someday I hope to run across that car wheeling around in America with my boy’s handprint on it! When I see it, I’ll jump out of my car and give whomever is driving it a big ol’ Texas hug!

And, my next car is definitely going to be a Hyundai! So, on behalf of Carson, thank you Hyundai for your amazing and generous commitment to childhood cancer research.

I loved that boy.

Space SpaceSpace Space SpaceSpace Space Annette Leslie

Annette Leslie heads up the Carson Leslie Foundation and can be reached at www.carsonlesliefoundation . Information regarding the purchase of Carson’s book may be obtained by clicking on the book at the top of the page. Information regarding the Hyundai Hope on Wheels can be obtained by clicking on the white SUV pictured above.

Author: Joe Baber

Related Articles: Tumor Tissue Donation

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Uncategorized | Tagged Annette Leslie, Brain cancer, Carry Me, Carson Leslie Foundation, Congressional Childhood Cancer Caucus, Hyundai Hope on Wheels, Max Cure, Richard Plotkin | 5 Comments

Gold vs Pink

Posted on September 13, 2013 by Team Captain

“Knowing everything that I know about cancer, I would, in a heartbeat, take any kind of adult cancer—no matter how nasty and aggressive the disease and treatment—over any cancer diagnosis and any chemotherapy for either of my daughters, future grandchildren” Unlike most of us in the childhood cancer community, Laurie, a mother of 2, has not had her membership card pre-punched, but she has rolled up her sleeves and is pitching in. She is exactly what we need to create awareness beyond our own limitations. Please welcome her, already a member of the Coalition Against Childhood Cancer, to our community. Thank you Laurie O.! – Four Square Team Captain

I had intended to have my next post be about the childhood cancer fundraising event that I am planning in the Fall of 2014, but I have an overwhelming need to chime in on this whole gold versus pink thing. In an ideal world, I would be able to be all about gold in September and pink in October, but the “Pinkies” keep encroaching into the golden time so I have found that it is making me pick sides. I’m not happy about it.

To preface it all, even though I have never proactively sought to be different, I have always been one of those square pegs trying to fit into a round hole. For example, I am very much a tomboy and am most recognizable and comfortable wearing a baseball hat and ponytail, yet my favorite color is girly-girl pink and I gravitate toward anything pink. Following that theme, I am a pharmacist who chose to go to pharmacy school (nobody forced me into it) but I never intended to be a traditional pharmacist.

Pharmacy school was a way for me to learn about cancer and cancer drugs and to gain an understanding of what happened to my maternal grandmother. I highly doubt that I would have a career in the cancer field if it were not for her dying of metastatic breast cancer when I was in the 7^th grade. She was initially diagnosed in her late 60s, was cancer-free for a few years, and then recurred in the other breast in her early 70s. She died in 1988, at age 74.

I remember an incredible amount of details regarding grandma’s second and last bout with breast cancer. The topic of “cancer” was so taboo that, in fact, no one in the family was allowed to even mutter the word around my grandmother because in her mind, cancer was a punishment from God and something to be ashamed of. I have no idea where she got that from. I vividly remember my grandma hanging up the phone on mom the first time my mom dared to say “cancer”, I remember seeing her pitch black & blue chest from the radiation treatments as I pretended to look away, and I remember grandma saying goodbye to me the day before she died but thinking I was someone else (as she was hallucinating from her brain metastases). I also remember that, around the same time my grandma died, my mom’s second cousin (who was her grade-school buddy) passed away from breast cancer at age 40, leaving behind 6 children. Around the very same time, my mom had a suspicious mass detected in one of her breasts and had to have it surgically removed. It was benign, thank goodness, but I remember her raw fear and worry and how she locked herself in the bathroom to cry. I went through those very same emotions in 2007, when I had a very firm pea-sized breast lump detected during the first trimester of my first pregnancy, which was benign but caused me great angst given my family history. I was devastated, fully expecting it to be cancer as I endured lots of waiting.

To date, my family history of cancer includes not only breast cancer, but also the rare uterine MMMT/carcinosarcoma that took my mom, acute myeloid leukemia (AML) that took my maternal grandfather, and colon cancer. Despite my efforts to stay fit and in good health, I have a really good chance of being diagnosed with cancer in my lifetime, more so than the 1 in 3 odds for women in general. I’ve been tested for genetic mutations in BRCA1/2 (breast cancer genes that, when mutated, increase the risk of not only breast cancer but also many other cancers) and had none detected, but I would still bet that my breast cancer odds are higher than the often cited 1 in 8.

So here I am, it is September 2013 and I’m alive and well. I have a history of adult family members dying from breast cancer but have 2 healthy daughters, and I am rejecting pink to go GOLD and asking others to join me? YEP, that’s right! In my eyes, heart, and mind, pediatric cancer research should be a higher priority than adult cancer research. Seriously, how can I possibly be more worried about adult cancers, even those that have taken my own family members, when there are (1) children who have not and will not even make it out of childhood and (2) children who may be lucky enough to survive cancer yet are more likely than not to be left with permanent physical and/or emotional scars and disabilities. Knowing everything that I know about cancer, I would in a heartbeat take any kind of adult cancer—no matter how nasty and aggressive the disease and treatment—over any cancer diagnosis and any chemotherapy for either of my daughters, future grandchildren whom I hopefully will meet someday, future great-grandchildren whom I will never meet, and so on.

Overall, I just cannot understand and cannot accept that pediatric cancer research is not THE priority of cancer priorities, so I have opted to join the childhood cancer community to do my part. But it is very obvious again, that I am that round peg and not the typical addition to the childhood cancer awareness community. I have met quite a few people over the past few weeks at different family/kid-focused childhood cancer events. I brought my 5 year-old daughter, Macy, along with me in my travels. As soon as I mentioned my plans to start a foundation and do fundraising events for my local cancer center, I noticed that the first thing that people did next was look directly at my daughter. Everyone automatically thinks that she must be a cancer patient, but she is not.

I have to ask: Should it matter—whether or not I have had childhood cancer, or if my own children have had cancer—if my mission is to help kids with cancer and I have the passion to do so? (Editor’s note here: If our community requires that we all must have suffered to join and help, we will never grow and achieve our dreams of making childhood cancer a national priority. Our “club” must never become exclusive.)

Sometimes I succeed and sometimes I fail, but it is never for lack of trying. Yet I know all too well that there are times when hard work is not enough to succeed, forcing a concession that it is time to “Let it go and let it be”. As I have not personally dealt with childhood cancer, I have already faced some unique barriers and challenges in trying to join this community, and I know there are many more trying days to come. This is the one time in my life, however, that “Let it go and let it be” does not apply to me and is simply not an option. I am dedicated to helping kids with cancer and to raising the much needed funds that will lead to much better treatments, and I am here to stay and am bringing others into this with me.

So as for pink vs GOLD, I am tabling the pink and going GOLD today, tomorrow, during October, and forever and always—no matter what happens to me in the future. In the battle of GOLD versus pink, I pick the kids and encourage all adults to do the same.

I have to say, that GOLD is a great color for the childhood cancer community to have because of the BLING factor, let’s exploit the heck out of it by making it cool and hip for people of all ages while spreading awareness. In my eyes, putting a little bit of light-hearted fun into the equation provides a way to balance out the inherent sadness that is associated with the topic of childhood cancer, likely a major contributor to why people in my general community shy away from joining this fight. I think an “Embrace your inner bling and go GOLD” campaign is in order! The gaudier the better, the more obnoxious the better—even for a tomboy like me.

Did you know and did you hear—that GOLD is the new pink?!! True story, spread the word and take care until next time…

Author: Laurie Orloski

What’s MMMT got to do with it?

Posted in Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged breast cancer, Childhood Cancer Community, Coalition Against Childhood Cancer, gold, MMMT, pink | 14 Comments

Dear American Cancer Society

Posted on September 3, 2013 by Team Captain

Dear American Cancer Society,

Good evening. I have always been appreciative of the work and research that the American Cancer Society funds. While I have always researched the organizations I support, it was not until recently that I decided to dig a little deeper into how and where the American Cancer Society divides the funds they receive. I have sponsored and participated in Relay for Life with the thought that I was helping support many of the children whose faces you plaster on the ads you run. I have had many friends face breast cancer and so far are winning the battle, a grandfather who battled lung cancer and understandably did not win, a biological father who faced colon cancer and due to various other medical conditions, lost his fight. While I have shed tears, been angry, sad and mad about each of the people I know who have had to face this horrible disease, none of them have brought me to my knees like I have been for the past 18 months.

You see, 18 months ago (tomorrow, September 2, actually) my best friend of 24 years and her husband heard the words no parent ever wants to hear, “Your child has a tumor and we believe it is cancer.” I live clear across the country from them and could do little other than offer phone calls, prayers, support and donations to organizations that are supposed to be helping find a cure for her son. At the end of May, we celebrated a little and breathed easier because we got a remission call, he still had treatments scheduled and they followed all protocol for those treatments.

And then the hammer fell two weeks ago. He fell and his leg broke. All of a sudden, it’s wait, the cancer is back. I stopped breathing for a minute, yelled at an empty room, at God and whoever else I could find and just yell. Then, a little later, I set my resolve to help them fight. I waited a day to call them, to make sure my mind was in the right place and to give them some space.

So, I started my digging. I researched to find where best to help by donating. I did it so that my precious TWO AND HALF year old nephew can live to celebrate birthdays like you advertise. I am saddened and angered this evening on the first night of Childhood Cancer Awareness that there is no mention of it on your website, that there is not “advertising” from ACS of childhood cancer awareness on social media, that your Facebook page does not mention Childhood Cancer Awareness, that the pace car tonight at Atlanta Motor Speedway stayed pink, not gold. Please don’t misunderstand me, I respect the fight against breast cancer, but it is not the only cancer out there affecting families.

As I dug, I realized that none of this should shock me because you are not donating sizable amounts of money to pediatric research, in fact if my numbers calculate correctly, it is getting less than 4% of the money that is given out. If they don’t survive cancer, this population actually stands to miss the largest number of birthdays!

Please respect the children and families that are fighting this battle. Kids are not simply mini-adults who can handle the same medication. Heck we won’t even let them have real cough and cold medication until they are almost six, because we know simply a smaller dose is not correct for kids. Yet, we hand out similar chemotherapy and radiation protocol to kids as we give adults who are battling cancer. I wanted to believe childhood cancer was rare, but 36 new cases a day and seven deaths each day is not rare! Help us support this battle, use your resources, turn your pages gold this month to show you care for kids, help fight in congress to get bills passed and money for our tiniest of victims. Don’t just use the young faces in advertising to get more money. Give them more money so they can live, grow, celebrate birthdays, and become the next generation of researchers in science to help cure it all.

Thank you for your time.

A hopeful and determined aunt,
Jenn Kramer

Actual letter from Jenn Kramer, Illustrations by Joe Baber

Related Stores: Opinions Tab Above, American? Cancer Society

Let’s Hear From You! Write your letter below in the reply/comment section!

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged ACS, American Cancer Society, Atlanta 500, Birthdays, childhood cancer, Jenn Kramer, Pink Pace Car, Relay for Life | 9 Comments

The Climb

Posted on August 30, 2013 by Team Captain

I have never had to personally deal with childhood cancer but have dealt with losing my parents at pivotal points in my life. My father passed away in 1996, when I was 21, having just completed my 4th year of college and about 2 weeks after I decided to pursue my doctorate in pharmacy. Then my mother passed away when I was still figuring out how to be a mother.

Despite losing my parents, I have so many things to be grateful for. One of those things is a love of music, which I seem to have inherited from my mom. My favorite singer—hands down without question—is Elton John, but my favorite genre is rap. I know, I am making no sense again. What this means though, is that I have a very eclectic library of music and probably about 1,000 favorite songs, many of which serve to inspire and motivate me. I won’t start with quoting Sir Elton, as there are just too many awesome lyrics to pick from. Although I missed the whole Hannah Montana thing, “The Climb” is among my favorite of faves, partially because it can be interpreted any way that you want it or need it to be. These are my fave lines from this fave song:

There’s always gonna be another mountain. 

I’m always gonna wanna make it move. 

Always gonna be a uphill battle. 

Sometimes I’m gonna have to lose.

Ain’t about how fast I get there. 

Ain’t about what’s waiting on the other side. 

It’s the climb.

On any given day, it describes past or current challenges in my life. Quite simply it’s a song that can work for life in general. For me, it works for personal challenges such as running, regardless of the distance, or losing 60+ pounds of pregnancy weight, or even the tricky home/work dilemma of parenting two very headstrong young ladies while working from my home. This song also works for the difficult business and professional challenges that I encounter in my career.

“The Climb” even worked during the emotional challenges of being the primary caregiver for my mom and it works today for the grief I feel from that loss. If you read my introductory post, “What’s MMMT Got to Do with It,” and made it to the end, it is obvious that there are a lot of holes in my mom’s cancer story. As far as my mom’s cancer and treatment goes, it is truly a case of “the devil is all in the details.” Those details are very complicated. So what I plan to do, over time in this blog, is to dissect her story in ways that will reveal a “clinical pearl,” basically a tidbit or pointer that might help you or someone you love. While my mom’s journey is what I would describe as of the “the wrong track/wrong train” variety, it has given me very important and positive insights that I would never had gained anywhere else or in any other way.

Using some of the inspiration I feel from the “The Climb,” the things I plan to accomplish via this blog are these:

▪ Share my education and knowledge regarding cancer drugs. My plan is to chop down some complex info into small pieces, focusing on subjects that everyone should know about; things like standard treatments, participation in clinical trials of investigational therapies, and specific up and coming therapies. I am a trained pharmacist and have experience in developing patient-focused information, although I normally write for a physician audience. So, if I am ever talking a different language, making my easy-to-understand information as clear as mud, and you feel you need to go and read the lyrics for my inspirational climb song, please do not hesitate to let me know that in the blog comments!

▪ Further explain how/why I made the plunge into childhood cancer awareness and funding, and what I plan to do to make a difference. It’s very hard to explain, but everything in my mind, heart, and gut tells me that I am meant to help kids with cancer and their families, and that childhood cancer advocacy is absolutely the “right track/right train” for me at this particular time in my life. I’m certain that there are people within my circle of family/friends/colleagues who think that I have gone off the deep end, and there are people who should want to give back but have shown little to no interest in my new endeavors. I guess for now, I just won’t worry about them in a way that will hold me back, but I’ll keep them on my ever-ticking radar. Regardless, I do want to extend a more positive, big, giant THANK YOU to all of you in the childhood cancer community, for welcoming me and giving me the opportunity to make a difference— I will return the favor big time!

▪ Chronicle a specific event that is in the works for Fall 2014. I am a runner and have participated in lots of different races, but I have zero experience in actually organizing one. In June 2013, I took my 5 year-old daughter to a run/fun walk. It was a beautiful day and the proceeds were to go to St. Jude, yet it was striking that there were hardly any kids there. So it got us thinking, that we could/should organize our own charity event—one that includes adults but focuses on kids of all ages!! YES, my kids should be helping kids with cancer by participating in a healthy event/activity, and that way everybody benefits! One thing led to another, and now there is no stopping us! Just like the song, we’re going to move a mountain and this run/walk/sports day, which will be no ordinary event, is planned for September 2014 and will benefit the cancer center of a local children’s hospital. I will be sharing my entire journey with organizing this inaugural event, in hopes of developing a road map that someone else could follow if they would like to do the same thing or something similar.

To wrap up, I may write medical/scientific stuff and blog posts but am no songwriter (and cannot carry a tune to save my life), but “The Climb,” is a song that I would have written, and literally would not change a single word.

Take care, until next time.

Laurie O:

Full Lyrics for “The Climb”

Related Article: What’s MMMT got to do with it?

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Laurie Orloski | 1 Comment

Finding Your Footprints

Posted on August 27, 2013 by Team Captain

Have you ever tried to walk behind someone in the deep snow and step right in their footprints? As you take each step, you may or may not hit each plant right in the already trodden snow. And then, coming back in the opposite direction, it becomes even that more difficult to find and step in the already beaten path. Life seems to be just like this. I find that it is very difficult to walk in the footsteps that we left with Alexis. For one reason or another, finding those long past footprints is next to impossible. Either it is too emotionally difficult to search them out, or too much time has passed. Time frankly is the greatest factor in losing these long lost prints. In some fashion, that is very painful to know that the steps of the past are just that, past and gone forever.

Our family began going to the Outer Banks of North Carolina in 1999, long before kids ever became a thought. Those were the days of sleeping late, reading a book on the beach and napping wherever the body landed. Then, in 2006 when Alexis was approximately 6 months old, we spent a full 2 weeks in the OBX. It was a nice time. We continued to come on down and then 2008 hit. I don’t think I need to rehash what happened then. We were able to come back down in 2008 during the summer, and we decided to take another 2 weeks out. After all, there was no guarantee that after that summer we would ever return frankly. I recall as we drove away from the trip that year, Neely began to get emotional and said to me “do you think we will be back.” I remember exactly where we were on Route 12 when I looked at her and said, “we WILL be back.” And thus, in 2009, we made our return with Alexis and then with Gabe. We took other trips in 2010. In the summer of 2011 we decided to return to the OBX, this time without Alexis obviously and in a different location. Those footprints that we left were all too fresh and painful. There was little comfort in trying to find them and step right back into them with the obvious absence in our family. Alexis loved the beach and this vacation and her absence was more than palpable. We did the same thing in 2012; coming down to the OBX, but staying in a different location.

This year, we found the courage, and it does take courage, to head back to the old location and walk in some of the footprints that we left all those years ago. Some of the footprints are more painful than others. Many of you who have read this blog from the beginning know of Alexis’ love of feeding the turtles here. We fed those turtles. Gabe, Trevor, Neely and myself. We found them, we found those footprints, and we fed those turtles. The simple act of throwing food into the water and watching these reptiles pop their heads out of the water and snap the morsels up brought such mixed feelings. I frankly have such mixed feelings sitting here recounting it. Yet, we found those footprints, stepped right back in them and moved on. We walked on the beach and collected seashells, we swam incessantly, ate iced cream, and simply spent time together. The footprints are not as clear these days, but I know the places we used to walk. While training, on a run or a ride, I deliberately go past houses we stayed in with Alexis to bring forth the memories and find those footprints. They hurt. I will freely admit that there is abject pain in stepping back into them. But in some respects, the pain is a connecting factor and for that, I cannot turn away. It is like a familiar train wreck that you cannot avert your gaze from. I am grateful that the footprints, although hazy, still exist.

As the summer comes to a close, we focus on the 5th National Race Against the Odds on November 3, 2013 in Arlington, Virginia. We are fortunate to have a truly amazing presenting sponsor in the Jim Koons Automotive Companies. (www.koons.com). We are hoping to make this race bigger and better and celebrate some of the kids currently battling brain cancer. Please, log on, register, create a team, donate, be a virtual runner, anything. www.raceagainsttheodds.com

Work continues to take up considerable amounts of time for Neely and myself. Life gets in the way of life without fail. Gabe will start back to school soon for his last year of pre-kindergarten. Trevor is about to hit 16 months. Time also gets in the way of life. It certainly is a double edged sword. Advocacy work continues to take up a lot of focus, and for that I’m blessed. I have been very fortunate to gain the platforms that I have from which to pontificate. It always amazes me that people listen to me. I would never have gotten involved in childhood cancer advocacy but for Alexis. Accordingly, it goes without saying that I would obviously rather not be doing what I’m doing. With that said, it is her fight that we continue. She never quit, and neither do we. From writing, speaking and

lobbying (www.jonathanagin.com), the fire is lit and burning bright. Children deserve the opportunity to live and survive the diagnosis of cancer. Period. In addition, we are so honored to have a bill named after Alexis. The Alexis Agin Identity Theft Protection Act of 2013 was introduced on July 18, 2013 by Congressmen Johnson and Becerra in a bi-partisan fashion. Please urge your representative to sign on as a co-sponsor of HR 2720. You can view the 1 minute bill introduction here:http://www.youtube.com/watch?v=tId_X-BxC9I

Life is busy. That is an understatement. In my dreams I wish for 2 weeks to be holed up in the mountains, nothing but books to keep me busy, and a computer to begin the process of writing the book that needs to be written. In the end though, what I truly want is to be able to walk in those footprints that were left years ago, step confidently without hesitation and feel a feeling of connection. Those footprints though will always bring mixed emotions.

And so, as each day passes, it takes us another day further from Alexis, yet another day closer. Soon baby, soon.

Love,

Jon, Neely, Alexis, Gabe and Trevor

Editor’s Note: The above post was originally posted on Alexis Agin’s Caring Bridge page on 8/25/2013 and reposted with illustrations here with permission of Jonathan Agin.

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Alexis Agin Identity Theft Bill, Jonathan Agin, Outer Banks | Leave a comment

What’s MMMT got to do with it?

Posted on August 12, 2013 by Team Captain

Editor’s Note: A very special welcome to Laurie Orloski who will be a regular blogger on Four Square Clobbers Cancer. Laurie is an experienced writer who will also be able to provide us with her expertise in the field of oncology pharmaceuticals. She is planning a special event in 2014 that will benefit childhood cancer and she wants to take our readers on her journey. We look forward to traveling with her. Welcome to Four Square Clobbers Cancer Laurie!

By way of introduction, I am a mom to 2 and 5 year-old girls who have been healthy to date (knock on wood) and a year-old Jack Russell Terrier, who is healthy physically but a mess mentally. Anyone who really knows me would probably describe me as someone who likes to run, likes the Muppets, and knows a lot about cancer. I like to run because for me it is a fun way to stay in shape. As a plus, I get good (but admittedly odd) ideas when I run, which I attribute to the extra oxygen from the fresh air. I like the Muppets because they remind me of being a kid. My personality is a lot like Kermit’s, a combination of no nonsense/serious yet goofy, if that makes any sense. I know a lot about cancer because I have a doctorate degree in pharmacy and interned in a major cancer center for several years, and even spent six weeks at St. Jude Children’s Research Hospital right before Christmas of 1997. However, after graduating, I fell into a desk job as an oncology medical writer. For the past 15 years, I have been reading and writing about lots of different adult cancers but no pediatric ones. All of my project work is sponsored by the pharmaceutical industry.

So how did I land here, on the Four Square Clobbers Cancer blog, of all places?

I, like many of you, lived through the horror of a rare and aggressive cancer. The patient was my mother, who passed away in 2009 after a 9-month battle with something called a uterine carcinosarcoma. Maybe you’ve heard the even more complicated term of “malignant mixed Müllerian [or mesodermal] tumor” or MMMT (pronounced triple M-T)? In all likelihood, you have never heard any of these ridiculously confusing terms. Uterine carcinosarcoma/MMMT are very rare and occur in only one or two in 100,000 women. Fortunately, most oncologists will never see a case of my mom’s cancer during their entire careers. As an added bonus, there appears to be no genetic basis, which is excellent news for me and my daughters. Unfortunately, however, their rarity means that they are poorly understood. The bottom line is this: unlike more typical uterine or endometrial cancers (without the “sarcoma” part), which are often highly treatable and have a good prognosis, my mom’s tumor type has among the worst possible prognoses of any type of cancer period. My mom’s MMMT was extra weird (go Ma!) Her cancer cells had features that are most commonly seen in pediatric sarcomas. Even more mind boggling, my mom was so previously healthy that, in fact, she was able to tolerate nearly $250,000 (yes, quarter of a million dollars, if you tally up the amount billed in her library of medical statements) worth of treatments and procedures over a nine (yes, nine)-month period. So, well, thanks Ma for pretty much getting struck by lightning! There is a lot more to her story, to be shared at a later time.

So back to the question of why am I here, specifically in the childhood cancer community, not the MMMT universe?

I could write a 10,000-word essay to get to the answer, but I am going to skip to the conclusion:

As far as my mom and her bugger of a MMMT are concerned, the only possible worst-case scenario would have been if my then year-old daughter had been the one to have been diagnosed with cancer on October 21, 2008 (my birthday, by the way, lovely piece of trivia). Today, as I reflect on it all, I cannot think of anything more horrific than if one of my daughters or ANY child were to go through what my mom did. Yes, my mom’s cancer was 10 out of 10 bad, yet I do know there is still worse out there. I want to help the kids.

On Aug 5, 2009, any hope for dear Ma’s survival was suddenly lost and we were arranging for an ambulance to take her back to her home, which was about 2 hours away. At the same time, I was calling her friends and coworkers to let them know she was coming home but that she was bedridden and was returning only for goodbye purposes, and that it was imperative that they come by to see her during this “pseudo-viewing/wake for the living” no matter how difficult it would be for them. I was very matter of fact in what I said but there is no word to describe my emotions, how I really felt inside. Physically, I literally felt like I was the one dying. We thought she had at least days and maybe even weeks to be at home but, as it turns out, she actually only had about a day and never made that trek. She died in the hospital, early morning of August 7, 2009. It was probably for the better, but who knew, right?! I would say she did. Deep down, I knew too but wanted so much to believe that I could get her home alive as our final challenge together. Regardless, we were fortunate to have our little goodbye conversation when we last spoke on August 5, which was quite the chat. For example, we laughed about whether or not she wanted to spend eternal life with a wig, as her mom (my grandma) had died of breast cancer and was buried with her wig. But my mom hated her wig and her shag equally, so I had to ask! She asked me what I thought, and I did just that. I told her she looked beautiful as she was (wigless), with her very modelesque short shaggy ‘do and she agreed that there would be no sporting of a wig in the after life.

But there also was the following exchange, which is most pertinent to this blog. For context, my mom was a very sweet, pleasant lady with spunk but did not question authority and did not enjoy or seek out conflict. She had lost practically everything as of August 5—including the ability to walk, any desire to keep fighting, and her trademark puffy hair—but she had managed to retain her mind (that seems to be the one and ONLY place that the cancer did not go) and school girl-like charm and smile.

So here it goes, as if the wig exchange wasn’t enough…

Ma: “I’m so proud of you. You have every one of those doctors hating you.” (Laughter, with an affirmative head nod from me. Note: “hating” is not a typo and was not intended to say “loving”)

Me: “I think I may have missed my calling, as a patient advocate.”

Ma: “Yeah, you would be really good at that.”

It had been about a year since the “step-off grandma” and “peas and carrots” photos above. Macy’s hair had sprouted while grandma’s had shrunk! It took every power of persuasion to convince my mom to participate in a family photo shoot. She told me she felt ugly. Her puffy hair was gone but her face was puffy from her meds, she was crying at the notion of taking pictures. But lots of yapping from me and genuine compliments of her modelesque shag, which I could never pull off like her and she came around. Ma was rushed to the ER a few days later and died about a week from when this was snapped. I think she would approve of me posting this last “peas and carrots” pic here…but if I get zapped by lightning, the source will be obvious!

On that note, I’m gonna wrap up by saying how proud I am to have rubbed off on my girls. They are about as opposite as sisters can be (think girl versions of Bert and Ernie) but both love the Muppets and running. Hopefully though, they will stay healthy, grow up to be strong ladies, and know practically NOTHING about cancer—other than it being this easily clobbered and cured obscure entity that is simply “nothing to worry about.”

Take care, until next time…

Laurie O.

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged endometrial cancers, malignant mixed Müllerian, MMMT, sarcoma, uterine carcinosarcoma | 8 Comments

Advocacy and Direction

Posted on August 1, 2013 by Team Captain

Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the best approach as a whole? I honestly do not know. I raise the question to suggest simply that it may not be and thus, a hard conversation and internal focus might be necessary. Despite the false and misleading suggestion that is presented by the message that 80 to 85 percent of all children diagnosed with cancer are cured, the ball is not moving very far towards the proverbial goal line. Regardless of the overall lack of urgency and federal funding from the National Cancer Institute, there is a large amount of private money being raised for various research efforts. Despite the promising looking statistics, if you removed ALL, or acute lymphoblastic leukemia from the statistical survival rates, the nature of the efficacy of childhood cancer treatment would change dramatically. There are no statistics on what these numbers may be, but I suggest that the overall childhood cancer survival rates would be more than halved. And that brings me to my question, are we working as smartly as we can be?

I frankly think the answer is in the negative. Ultimately, this blog post may not sit well with some in the childhood cancer community. I am accepting of that and willing to have the difficult conversations that may ensue. I come to this conclusion after being in the childhood cancer community since 2008, the year my amazing daughter Alexis was diagnosed, and spending much of my current time advocating for childhood cancer issues. I begin with the issue of current childhood cancer research. Far too often, money is simply provided for single silo research with no account taken of the overall efficacy or direction of the outcome. These efforts, often duplicative in nature, frequently end up with failed or lackluster results. I am not suggesting that this amounts to a waste of money, or that there is never a gain from single institution research; rather, I believe that we must reassess this approach. Many times, I have witnessed as foundations operate as islands onto themselves. Raising millions of dollars, they award grants to the same researcher time and time again with no real results to show for the money. They utilize large sums of money without offering transparency in the process. I assume there is nothing to hide ultimately. I have simply reached a point where I am witnessing far too many children die of childhood cancer without seeing more of a sense of urgency or a demand for more definitive results. And that for me is why I have arrived at these conclusions.

I believe that insistence must be placed upon investing in research that has multiple controls in the form of collaborative checks and balances. Through the use of collaborative efforts, we gain several institutional perspectives as well as the potential for researchers to share differing opinions that lead to better results. In the DIPG community, multiple foundations came together to form the DIPG Collaborative. This group of foundations, many with differing missions, have joined with the goal of combining funds for research to create a greater impact, as well as to force collaboration across institutional, state and international borders. What has resulted is hopefully one of the greatest steps forward in the fight against DIPG, which is an almost universally fatal pediatric brain tumor. This collaborative is able to bring together researchers from all across the world, force them to have conversations about how to create greater urgency in the results and end clinical product, and then move those aims forward. It may not be perfect, but I believe that it is a model for duplication in the childhood cancer world.

I also see a lack of vision. Often times, I believe the forest is lost through the trees. Opportunities are presented that may not be specific for childhood cancer; and the childhood cancer community does not rally around them. Take for example the (Gabriella Miller) Kids First Research Act, H.R. 2019. This simple bill would eliminate taxpayer funding of presidential elections and instead provide the money generated by this tax election to a common fund at NIH for pediatric research. Whereas this money is not specifically earmarked for childhood cancer purposes, it is open for the potential that some may ultimately be devoted in that direction. Unfortunately, many of the organizations that support legislative initiatives in the childhood cancer world are not supporting this bill because it is not childhood cancer specific. I believe that this insular approach is part of the problem. Instead of trying to align with other communities to increase our breadth and voice, we wear blinders. In the end, if this legislation becomes law, the childhood cancer community may not see any money in terms of research from this common fund. On the other hand, we do not know that and thus, a simple gesture of support may provide benefits down the road. Providing support for this piece of legislation does not create a mutually exclusive barrier for other legislative initiatives specific to childhood cancer.

We must broaden and sharpen our approach and vision. It is not enough to simply raise awareness and money. We must take a step back and assess whether or not the approaches being taken are in fact the most fruitful. Maybe I am wrong. Maybe the current approach is providing the necessary results for our kids with cancer. Maybe I am simply too impatient and want to cure more children now rather than later. It is too late for my daughter of course. There is a possibility that this may be the case and I am just off target in my thoughts. I am simply just a grieving father trying to do the best I can as a childhood cancer lobbyist and advocate. I do know one thing, I think that the conversation is worthwhile though, and anything worthwhile is worth doing right. I think you all know where to find me. Let the conversation begin.

Author: Jonathan Agin

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged advocate, ALL, DIPG, HR 2019, Jonathan Agin, Kids First Research Act, Lobbyist, National Cancer Institute | 2 Comments

The Rest of the Story…

Posted on July 30, 2013 by Team Captain

From Mikelle to Four Square Team Captain: “I wrote again. I realized that I needed to tell “The Rest of the Story.” It’s about the truth of my grief, what I’ve been through. If you choose to publish it, my hope is that other parents like me, will be able to see that sometimes talking about it helps and they aren’t alone in their grief and feelings. The picture attached is the last I have of him, it is very hard to look at, but it is the truth.” During the editing process, she went on to write, “I don’t want to upset anyone. I just want to reach out to those that are grieving. It’s a very hard place to be in and this might help others realize that they should talk about it. You can add in there that if they need someone to talk to, or just listen, I’d always be there for them.

I wrote a blog last week about the lessons I had learned from losing a child with cancer. After re-reading it and seeing the comments, I feel there is more that I need to share about what I have learned. If you are like me and have lost a child to cancer, my hope is that, if you feel alone, or have a hard time speaking about how you feel, or are unsure if you are the only parent to feel the way you do, you will see that you are not alone. If, on the other hand, you are watching someone else go through this grief, maybe you will be better able to understand. Here’s the rest of my story.

As you know, I lost my son to cancer. In the end, on this truly unforgettable day, Ryan was on an oscillator to help him breathe, and dialysis for his kidneys, plus he had so many IV pump machines that I lost count. My guess is at least 20. The morning of August 11, 2012, as the doctors were doing their rounds, my husband and I stood outside his room and listened to the plan of the day that was being discussed by a group of what appeared to be 10 to15 doctors and nurses standing in a circle. The resident doctor suddenly stopped the discussion. She looked directly at us and said, “He’s dying… We need to stop this talk.” Those words were like sharp knives stabbing me over and over and over. I couldn’t breathe any more.

The doctor explained that we could keep trying and continue to allow him to be on all the machines, but now there was a chance his lungs may burst due to the high airflow of the oscillator that was breathing for him. We did not want him to suffer, not one bit. After hearing this, we made the decision to turn off everything. In 30 seconds, it was over. Life had stopped for him, and also for me. A piece of me died on that hospital bed along side him.

Now looking back, how could I say that we didn’t want him to suffer? I feel guilt when I look back at what he went through. I’m sure many parents feel the same way at some point. The treatments he had to endure are too difficult for anyone to believe. He had several rounds of very harsh chemo. They had to insert a Broviac in his chest. It is a permanent double lumen IV and it was used to administer all the drugs he needed during treatment, it’s different than a port. That surgery caused a pneumothorax and required him to have a chest tube in order to drain his chest wall. It was filling with blood and making it very difficult for him to breathe. He endured septic shock at least four times. He contracted meningitis from no counts (his immune system was not functioning) from chemo .

Excess fluid on his brain caused Ryan to have massive headaches. He had to have a spinal drain. We learned it was necessary because of all the chemotherapy drugs they put into his spine. Later, if he became well enough to endure the required surgery, this would have required a permanent cranial shunt. He needed countless bone marrow aspirations. He had several double lumen pic lines placed in his arms numerous times to accommodate all the medicines he had to have running through his body. There were days to months of not eating. He had a NG tube placement at least four times.

There were days of vomiting for hours. He had unexplained stomach pains for months that no one could figure out. Ryan was urinating huge blood clots that caused severe pain. On at least five occasions, to help pass the blood clots, Ryan had to have the largest catheter placement a boy his size could use. After screaming for three days straight, he was put in a medically induced coma to control the pain in his head from the cranial fluid build up. Ryan had one week of cranial radiation once a day and then two times a day for another week, plus full body radiation, and several other treatments.

And I said, “We didn’t want him to suffer?” Well, this is the reality of cancer in children. I can’t breathe when I see this list of treatments all typed out. He was my baby boy, my world. Somehow, he smiled through all that he endured. Ryan did not lose the battle or his life, it was taken from him by cancer. This is the hell these children endure in the hope of a “cure.”

After Ryan died, we loaded up the car with all of our stuff from the hospital room, and all of his stuff. We loaded what was our life for almost a year into that car. We loaded everything, but we had to leave him. He wasn’t coming home, just his belongings. I’d never been away from him for more then a few days. I knew it was forever now. I kept thinking, “I’m just supposed to leave him here? I have to leave him here?”

All at once, like an avalanche, thoughts began to rain down on me. We need to plan a funeral…or something! The money, where do we get that? He had life insurance, but we couldn’t get that until we had the death certificate. We couldn’t get the death certificate until we paid for his transport from the hospital to the funeral home where we had him cremated. It was a very rough couple of weeks to say the least.

We didn’t go see his body again before they cremated him. I just couldn’t do it. I had a fear that when I saw him, I wouldn’t leave. I could not stand the thought of having to let him go all over again. Later on, we had a celebration of life for him.

Looking back, it was like I was living in a fog for days after he died. I barely remember that now. Three weeks after he had died is when I had the hardest time. I hit rock bottom. I was in a very dark place. I was convinced that Ryan needed me. That I shouldn’t be in this physical world anymore, I should be with him. He had never been from me that long. Was he crying for me? Did he miss me? Did he need me? Thankfully, I called some friends and they helped me through it, then later, I sought out counseling.

The months that have followed since losing Ryan have been a struggle. I’ve had people ask me if I ever cry, or fall apart. I laugh. My response is “Yes, and it’s not pretty.” I don’t speak about it often because people seem to shy away from the subject of losing a child. They don’t know what to say. No one does. As a parent who lost a child, I still don’t know exactly what to say to others in my situation. I thought I’d have something brilliant to say, maybe a way to help them with my words, but I don’t. All I can do is tell my story.

My marriage has held up for the most part through this. We have been to counseling because we both feel so lost at times and it’s like we can’t remember how to connect. When Ryan was sick, our life centered around his care, our every waking thought was about cancer this, and cancer that. We were like ships passing in the night. We knew the other one was there, but it was hard to see them through the fog of Ryan’s treatment. Our date nights were ordering food and sitting in the PICU hallway on numerous occasions when we had someone to watch our two girls. Now, the hardest part is knowing that we both are not as motivated as we once were. There are days where it’s easier for us to just sit on the couch and say nothing than to address the non-stop thoughts that run through our heads about Ryan. Some days it’s easier to focus on our foundation than it is to try to find the words to tell each other what we are thinking. Don’t get me wrong, we have discussed it quite a bit, but some days it’s just hard to share how you are feeling deep inside your head.

We have two daughters. Sara is 11, Skylar is 8. We still have to be parents to them each and everyday. Some days, even when you don’t feel like it, we have to comfort them when we can’t comfort ourselves. I don’t want them to see me cry all the time because I want them to know that I’m still strong enough for them. If I do cry in front of them, it makes my oldest cry and I feel guilty about that. A few days after Ryan died, I remember when I came downstairs after I woke up and saw the girls and my husband sitting on the family room floor playing a board game. I lost it, I wanted to run away, I wanted to scream and cry. One of us was missing. I’ll never forget that image or beginning to set the table for four instead of five. No more washing little boys clothes, no more cars to step on in the hallway, no more hearing his laughter as his dad chases him in the house. My husband no longer has a son. He has no son to grow with or to teach “guy” stuff. I have no son to teach how to treat women. There are days where this is all I can think about it. I couldn’t walk in Wal-Mart for a few months. A few weeks after he died, I tried to go to get a few things and I had a panic attack in the middle of Wal-Mart. I saw his favorite comic book character and, out of habit, I went to go grab it for him and realized I can never, ever buy it for him again. The little things are what get me the most.

Sometimes the negative comes through, but when I post things on Facebook, I am very careful to say only positive things. I am afraid that people will think I need to get over it. Or that they will just feel bad for me and scroll right past a post. Maybe they will just shake their head because they don’t know what to say. I don’t want to make them feel awkward or uncomfortable. I do enough of that in my head.

Many of you will understand if you have experienced the loss of a loved one, but to others this may sound complicated. I do want everyone to know that I am not okay. Nor will I ever be okay again. My “OKAY” was my son Ryan and when our family was whole and complete. On the other hand, I want people to know that it is okay to talk to me about Ryan, or even ask randomly if I’m okay. I want them to know that some days I would like them to, out of the blue, tell me a story about Ryan or send me a picture they found of him. Please don’t lock yourself out my life. Sometimes, I feel like I wear a huge “CL” on my forehead that stands for “Child Loss” and people are afraid to approach me or talk to me. You won’t catch my heartache and I don’t expect you to catch my tears either. What I want is for you to not put me on a pedestal. I get told so often, “I admire what you are doing, you are so strong”, or “I’d fall apart if I was you”, or, “How are you handling so much? I could never do that.” The list goes on and on. I appreciate the comments, I really do, but it makes me feel like I can’t fall apart, or if I do, that it may be that people will lose their respect for me. I walk on the same ground you do. I am YOU. I am doing nothing any other parent wouldn’t do. I don’t see myself as some superhuman hybrid. I see myself as someone teetering on the edge of keeping it together and everything falling apart. Some days I teeter more to the left, sometimes more to the right.

My hope is that by writing “The Rest of the Story” that I open up a door of communication for those that are grieving or in some way, help those who are watching someone else grieve. Everyone grieves in a different way. My mom helped me the most when she said to me, “Mikelle, you won’t ever learn to just move on, but you will learn to move with.” I truly understand this now and she was right. I am unable to move on or move beyond, I chose to move with.

Author: Mikelle Raffel

Related Article: Lessons of Losing a Child to Cancer

Warning: The photo below is of Ryan just before he died. It may be disturbing for some to view this photo, therefore please use consideration before scrolling down.

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged bone marrow aspirations, Broviac, chemo, cranial fluid, cranial shunt, dialysis, IV pump, meningitis, Mikelle G. Raffel, NG tube, oscillator, pic lines, pneumothorax, port, radiation, spinal drain, Wal-Mart | 10 Comments

Together

Posted on July 23, 2013 by Team Captain

Our community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in our community. Many, if not most of our organizations were formed by grieving parents to honor a child who fought and lost their battle against cancer, and who wanted to make sure no other child has to lose their life to this terrible disease. Other organizations were formed by parents whose child survived, and who wanted to give back by helping in the fight to improve treatment and save lives. Many groups are formal organizations and tax exempt 501-C3 foundations, while many are informal and not yet certified as tax exempt by the IRS. We range in size from a single advocate to very large national organizations and every imaginable size in between. Together, we cover every type of childhood cancer known to man. While some collect only hundreds or thousands of dollars, others collect millions, but together we collect a huge amount of donations and together, we fund a large amount of research. Together, we help a considerable number of families to stay afloat during their child’s battle with cancer. Together, we try to bring a smile and a brighter day to every childhood cancer patient. Together, we do all of these things.

When we think of our community, “together” may be how we see ourselves, but the truth is that most people only see us as individual organizations and certainly not much more than what our particular organization may represent. There is no central visualization to them that is representative of the entire community or its problems. Given the fact that most people have heard or believe that childhood cancer is rare, it is very difficult for the average person to comprehend exactly how big our community is. Let’s face it, no matter how hard we try, we rarely get the message across of how big the childhood cancer community is collectively or how big a problem cancer is to our nation’s children, adolescents and young adults. In comparison, all you have to do is mention Susan G. Komen and you instantly feel the enormity of the breast cancer movement. We have little in our community that will offer the same effect on people. As large and successful as they are and have been, and despite the great amount of good they do, St. Baldrick’s and Alex’s Lemonade Stand together don’t quite get the same respect. Considering this, it’s easy to reason why people equate pink with breast cancer so easily, but really don’t have an idea of what gold represents.

There are more than a dozen types of childhood cancer and we have individuals, organizations and foundations for just about each and every one of them. Breast cancer, on the other hand, is considered as a cancer in and of itself, therefore more people easily unite under their single cause. It’s not that way with childhood cancer, but, like breast cancer, we must find a way to put all 42 of our cancers together under a single umbrella of recognition. Without changing the individual organizations under it, the umbrella could represent the cause of childhood cancer and help to get needed recognition and support from the public which would also help us gain the legislative leverage that we so desperately need. With public support comparable to breast cancer, we may also have better luck when it comes to addressing funding for research by government and the National Cancer Institute.

On July 19, 2013 an organization that could be our “umbrella” and help to advance the cause of childhood cancer was formed in Washington, DC. More than 40 organizations came together to build a huge umbrella organization that will be known as the Coalition Against Childhood Cancer. Our childhood cancer community needs to come together and give our time and efforts to building an organization that will allow us to gain the support of the American people in our fight to conquer cancer. This could be a defining moment for our community. We owe it to our children and children everywhere to at least take a look and to see if we can make this work. Will it satisfy everyone’s needs? Probably not everyone’s needs, but it should satisfy most. Since it is a new, uncharted organization, it will not be perfect in the beginning, but if we all work at it, we can improve on it as it grows. We owe it to each other and to children everywhere to strengthen our ties and together, under the same banner, forge a battle never seen before in childhood cancer.

To get complete information, visit the Coalition Against Childhood Cancer Website

Author: Joe Baber

Editor’s Note: The Coalition Against Childhood Cancer, now 59 organizations strong and growing, will host it’s first annual meeting in Washington, DC on June 25, 2014. Details can be obtained by clicking on their website above.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged CAC2, Coalition for Childhood Cancer, Joe Baber | Leave a comment

Lessons of losing a child to cancer

Posted on July 17, 2013 by Team Captain

As the weeks dwindle down to mark one year of losing my son, Ryan, to cancer, I have been looking back and thinking hard about what I’ve been taught, or should I say, what was thrown in my lap to learn. Some lessons I never wanted to be taught. Now I carry those lessons around and continue to learn.

Lesson 1. We are a community. Or so I thought. At first, early in the battle, when your child receives the diagnosis of cancer you eagerly reach out to find other families in your situation. You are hungry for knowledge on a family’s point of view and more importantly how their child is doing. That lesson was amazing. There is an unspoken bond between parents, between children, in this special part of the childhood cancer community. Life on the hospital ward is a beautiful bond.

But later, as Ryan grew sicker and sicker, I learned that some people tend to pull away at a certain point. The bond we shared slowly breaks down. My guess is because they don’t want to see, or are afraid to see, what could happen to their child. They are at a loss for words and comfort, and it hurts too much. They are emotionally unable to travel any further down our road with us. Finally, it seems as if that special bond is broken.

I am no longer part of the community that consists of the hospital, doctors, nurses, chemo, antibiotics, patch changes, fever watchers, mask wearing, protocol talking, and beautiful little bald heads. That was my community of hope. Now that Ryan is gone, I feel like an outsider. I feel like I’ve become the face of “what could be.” When they see me walk into the hospital, I get awkward hugs and the “hey, how’s it going?” I’m not upset… I can imagine it’s uncomfortable looking on the dark side of cancer. I feel it must be uncomfortable to have someone like me who has experienced the worst cancer has to offer, shaking their hand or hugging them. It’s just as difficult for me because I see their children and my heart breaks all over again. They played with Ryan. They talked to him. Why am I the face of “what could be?”

My community now consists of grieving parents who are fighting to change things. Even though we have days of sorrow, depression and days of not getting out of bed, we are the community that is honoring our angels, by pressing on to start our foundations, and movements in hopes that someday no more will have to join us. I’m proud to have the support I have from our community of grief. This experience has opened my eyes to those that are fighting for a cause, for a change, and because they want the madness of childhood cancer to stop. I have the utmost respect for those parents that have a child in treatment, or a child that has survived, and go on to create foundations to reach out. The survivors could have easily left the cancer community, but instead they continue to fight shoulder to shoulder with us. Bravo to you! Together, this is our community of determination.

There is one part of our community that has caused concern to many of us. I refer to them as the “left behind” group. They seem to not want to join or collaborate with other groups fighting for the same cause. Some of these organizations have large “followings” and very rarely, if at all, voice support for any other foundation or group. I will never understand it. In order for the community to be WHOLE, the communities of hope, grief, determination, and the left behind have to JOIN. Several voices speaking randomly will never be heard. But if we all speak as one, our voice will be heard.

Lesson 2. People step in more at the end. When a child is about to pass away from cancer it seems the world is more enraged at that point. They want to reach out and help, send gifts, call the media, tell everyone they know… But, it’s too late! The cancer has won. The lack of an effective cure or the treatment itself ended up killing the child. Either way, it’s too late! To really be a help, step in before the child gets cancer. Step in before it’s too late. Step in at the beginning and be there through every step. Become educated in the plight of children facing cancer. Help educate others so this nation will collectively want to seek a cure. Let the media know that everyday 7 children die from cancer. That 36 will get told they have cancer today. Be an everyday hero. Not an end of days hero. Step in now, not later.

Lesson 3. Grief of Losing a Child. The grief of losing a child is like no other grief. It’s a hole in your heart that you learn to carry. Part of you died the day that they died. It changes you. It morphs your very being. Things, through my eyes, look different than they did a year ago. I cry more, I hurt more easily.

I’m no longer afraid of spiders, seriously. I am in awe of their webs and how they build them day in and day out no matter how many times they get wreaked by weather or unforeseen circumstances. Have you ever just sat and watched one build a web? It’s a beautiful metaphor for a grieving parent that lost a child to cancer. We build our webs of life. We have children, that’s one ring of the web. The child gets cancer. That’s a ring that’s been wreaked. We rebuild, we are always rebuilding. We meet amazing families going down cancer’s unpredictable path. We add to the ring of the web. The whole course of treatment is like a web. Parts are destroyed but we always rebuild while catching hope instead of prey. When a child dies from cancer the web is completely destroyed at that point. But then slowly… day after day, you start to rebuild your web. It’s re-spun by trying to reach out and connect with other grieving parents and by helping other families that are battling childhood cancer. The framework of our web is build on the memories of our child. My web is still being rebuilt. I’ve had many set backs in this year of rebuilding. I never quit spinning because the last stitch of my web will be when a cure for all childhood cancers is found. Until then, I’ll get as close to the center as I can. I’ll continue working on our foundation, I’ll keep reaching out to families. I’ll keep crying each time someone else’s web is destroyed and I will be there to teach them how to rebuild. I’ll continue to tell Ryan’s story, and everyday I hope to educate people about GOLD and how they can help raise awareness. The web I choose to weave is now spun with love. Ryan taught me so much. Thank you for that baby boy.

Lesson 4. The Ongoing Lesson. Lesson 4 is putting it all together! I want to be a community as a WHOLE. I want be an everyday hero, not an end of days hero. I want to continue on rebuilding my web and one day be a part of the last stitch. Life is an ongoing lesson for me. In another year, who knows what I will learn? My hope is that I never stop learning and that I learn how to better myself and the childhood cancer community.

Author: Mikelle Gallier Raffel

Related Article: There’s more to this story,

The Rest of the Story by Mikelle Raffel

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged antibiotics, bald heads, chemo, community, doctors, fever, hospital, Mikelle G. Raffel, nurses, patch changes, protocol | 4 Comments

Mr. President, Did We Miss Your Call?

Posted on July 8, 2013 by Team Captain

President Obama, perhaps you recall that back in January 2013 I reached out to you to talk about three specific small asks for the childhood cancer community. I know that you have had a lot on your plate recently. For obvious reasons I will choose not to delve into these issues. The other day I heard my phone ring in my office, unfortunately I could not get to it in time. Was that you trying to call me? You did not leave a message so I do not have your number to call you back.

I understand from reports that the cost of your trip to Sub-Saharan Africa will cost the government approximately $60 to $100 million dollars. That is well over half of the federal budget for childhood cancer as allocated by the National Cancer Institute. I understand the need for foreign travel and diplomacy during a presidency; however, while you were out, many children in the United States were diagnosed with cancer and many others died from the disease. Beyond the amount that it is costing us to have you in Africa, it appears that you have expressed an intense interest in dealing with Sub-Saharan hunger. You stated “this is a moral imperative…” I wonder where you place children in your own country dying of cancer? I would love to share just five minutes of your time to see whether you would agree withe me, a father who has lost a four year-old child to cancer, that childhood cancer is a moral imperative for greater action. Seriously, do you agree with this statement?

I then go back to my original letter to you. You know the one that I think you tried to call me about but I was not able to answer the phone. One of the items that I wanted to chat with you about was a petition that gained enough signatures to “Light the White House Gold” in September for Childhood Cancer Awareness Month. It seems a simple gesture considering how rapidly the White House, along with every other product under the sun, turns pink in celebration of Breast Cancer Awareness Month in October. I am quite certain that the government could afford a handful of gold light bulbs for the cause. Yet, the community has not heard a response from you whether this simple gesture is something you will make happen. Again, this is a simple five minute conversation that I would love to have with you.

Mr. President, the childhood cancer community has made such amazing strides over the course of the last several years. I know that you have been exposed to children with cancer on a number of occasions throughout the course of your presidency. This is a great start. This community deserves more. We deserve a leader on the federal level willing to take that final step to call into priority childhood cancer on a level that it has never been called into before. The time is now Mr. President. You can be that leader. Bring this on as your legacy.

This time when you call me, I will not miss the phone, I promise. The issues that I tried to address with you back in January are still ripe for discussion.

Thank you for your time Mr. President. I am very much looking forward to speaking with you.

Sincerely,

Jonathan Agin

Related Articles: Dear Mr President, the original open letter to President Obama

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Africa, gold, Jonathan Agin, NCI, President Obama, Whitehouse | 1 Comment

Lobbyist

Posted on July 7, 2013 by Team Captain

Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that word. I think it even rhymes with the word, “corruption.” Oh, I don’t exactly know why, I can’t give you a single reason, but I do know that in my 50 years of business experience I never had a high regard for them. I can’t remember ever hearing about a good lobbyist.

After making several trips to Washington on behalf of my favorite childhood cancer organization, and talking to politicians on the “Hill,” making appointments, getting the run around, and a host of other obstacles, I had an experience that totally changed my mind.

The last time I visited Capitol Hill, I worked with my daughter and one of her potential “business partners” who happened to have an office in DC near the Congressional offices. Mary (I changed her name to protect her identity), met us at her office early in the morning. I liked her business-like demeanor right away. We discussed all the meetings we would be having with the Representatives over coffee where I learned that she had a child who was a cancer survivor, then off we went! It was like a whirlwind! We walked and covered the Cannon Building, The Longworth Building, The Rayburn Building and the Capitol Building and met with 7 different offices. All the meetings went well and we accomplished more than I ever expected. Mary was the reason it all went so well. She had everything lined up and knew all the ins and outs of maneuvering through the halls and back ways of Congress. Every move seemed to be orchestrated.

On my way home, it dawned on me that Mary, my daughter’s “business associate” who whisked us through Congress so easily, was too good to be true, she had to be some type of undercover lobbyist and I never saw it coming! She never acted like a lobbyist. She was bright and cheery, not dark and sleazy. She was pleasant and everyone we met knew and respected her. They even acted like they enjoyed seeing her. Can you believe it? I think we were working with a lobbyist and I never realized it!

I asked my daughter if she knew and she sheepishly smiled and said yes. Knowing how I felt about the “L” word, she explained that Mary was sort of a lobbyist and that she had set all the appointments for us and that without her we would never been able to do what we did that day. She went on to say that Mary had previously worked for a Congressman and a Senator and spent years on the hill.

Since then, I started looking at lobbyists in a different light. I discovered that some of the largest hospitals and charities spend hundreds of thousands on lobbyists. The National Association of Children’s Hospitals spent over 3.1 million dollars on them last year while CHOP (Children’s Hospital of Philadelphia) and Nationwide Children’s Hospital each spent over $400,000. I’m sure it’s safe to assume that most of this money was spent to improve the various institutions and not for childhood cancer. Nothing is wrong with that. We want the best hospitals we can get, right? I also learned that the National Breast Cancer Coalition and Susan G Komen For The Cure together in 2011 spent over 1.2 million dollars on lobbyists and I think we can all see where they have benefitted from their investment. FYI, did you know that the Defense Department funds a large amount of breast cancer research? This year alone the DOD will spend $120 million on breast cancer.

In order to show up in the government reports, an organization must spend $10,000 or more in lobbying efforts. In my investigations, I could not find any strictly childhood cancer organizations (St. Baldricks, Alex’s Lemonade Stand, Ronan Thompson, etc.) last year that spent anything on lobbyists. If he were here, TV’s Dr. Phil has a famous line that he would insert into this conversation about now, “So, how’s that workin’ for ya?” Well, Dr. Phil, it’s not working!

No wonder it’s so difficult to get legislation introduced for childhood cancer and even more difficult to get it passed! Our community is not competitive compared to other groups seeking help from the Federal government.

We need to find a way to lobby for childhood cancer issues and legislation.

First, we need to have a way to pay a professional lobbyist either through a co-op, coalition, PAC or some other way. Relying on volunteers to do our lobbying as we have done in the past is just not going to work. The intentions are great, and we need to keep doing it, but we also need to be represented there day in and day out. Two or three times a year will not cut it.

Second, we need someone who is neither a “D” or an “R.” We need someone to be an “K,” for Kids and their childhood cancer causes. We need someone who will work independent of any single organization and for the benefit of children fighting cancer, regardless of which side of the aisle introduces the legislation or which organizations benefit one way or the other.

Third, we need someone who has a vested interest. Ideally, like Mary, we should have someone who has lived the painful journey of having a child with cancer or losing one because of it. We need someone that can be recognized as the voice of our children. That person would have enough passion to spread the fire through the halls of Congress until something is done.

I firmly believe that until we fill this void, we will continue to get less than 4% of the NCI budget for research, we never will have a Pediatric Oncologist on the Board of the National Cancer Institute, and our legislation will languish and die just like the way the Carolyn Pryce Walker Conquer Childhood Cancer Act of 2008 died so quickly in appropriations in 2009.

Where is our Lone Ranger? We need to be rescued, and soon!

Hmmm… I wonder if Jonathan Agin owns a horse?

Author: Joe Baber

Editor’s Note: Not much has changed it the ten months since this piece was written. Without the help of any type of professional lobbyist, the Gabriella Miller Kids First Research Act passed the House, Senate and was signed by the President, but the bill passed by getting various organizations from all corners of the pediatric universe to write and call their Senators and Representatives. This takes time and energy away from various organization’s normal missions to accomplish such a feat. Now, we are trying to get it appropriated and we still do not have a professional lobbyist. If ever we needed someone as our professional lobbyist to get inside and work the politics and get this appropriated, it is now! We find ourselves still…Looking for our Lone Ranger.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Alex's Lemonade Stand, Carolyn Price Walker Conquer Childhood Cancer Act of 2008, CHOP, Congress, Defense Department, DOD, Dr. Phil, Gabriella Miller Kids First Research Act, Joe Baber, Jonathan Agin, Lobbyist, Lone Ranger, National Association of Children's Hospitals, National Breast Cancer Coaliton, Nationwide Children's Hospital, Ronan Thompson, St. Baldricks, Susan G Komen for the Cure | 6 Comments

We Must Stop Turning Our Backs on Children’s Cancer

Posted on June 29, 2013 by Team Captain

When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to learn that children’s cancer is a disease that’s largely ignored.

We quickly discovered that, despite all the scientific advances in recent decades, the standard of care for our daughter’s disease was essentially unchanged since the 1970s. As with virtually all children’s cancer patients, the drugs Olivia received were “hand me down” drugs: first developed for adult cancers and then tried on children. As we traveled to three major cancer centers in a desperate attempt to save our daughter’s life, her doctors — the world’s leading pediatric oncologists among them — told us that because of a lack of funding, they were in effect fighting children’s cancer with one hand tied behind their backs.

Although cancer still kills more children in the United States than any other disease, there have been tremendous gains in survival rates in the past decades. But these gains have come at a considerable cost: Three out of five who survive children’s cancer suffer chronic side effects, and 40 percent face life-threatening illnesses such as heart failure and secondary cancers. The reasons are clear: The hand-me-down drugs are developed for biologically distinct adult cancers. Children’s bodies can absorb more toxins, and if they survive the cancers and the immediate treatments, the long-term side effects are severe.

Recent scientific advances have uncovered much of the molecular and genetic makeup of childhood cancers, making it possible to develop therapies directly targeted at cancer cells and therefore less toxic to children’s developing bodies. Yet progress in pediatric cancer treatment has stagnated because, as a report from the National Academy of Sciences argued, there is a “near absence” of research into pediatric cancer drugs. The Food and Drug Administration has approved only two drugs specifically for pediatric cancer over the past 20 years.

Why the neglect? Simply put, there is no profit in children’s cancer. While about 13,500 children and teens are diagnosed each year with cancer in this country, this is a small fraction of the number of adults diagnosed with cancer. Drug companies search for a cure for prostate cancer (where the average age of diagnosis is 70 but the number of people affected is considerably greater) and largely ignore children’s cancer. While the pharmaceutical industry provides up to 60 percent of all research and development to fight adult cancer, it provides virtually none for children’s cancer. In our daughter’s case, a drug company halted the production of a promising drug for treating her cancer simply because the drug had proved ineffective in treating the intended target, colon cancer. We learned this was no isolated example.

When markets fail to produce desired outcomes, government needs to step in. Yet overall government spending on cancer research through the National Cancer Institute is slated to be cut by more than 5 percent this fiscal year because of the sequester. Worse still, even without those cuts, the National Cancer Institute spends only 4 percent of its budget on pediatric cancer, despite the disparities in private sector funding between adult and children’s cancer.

True, far fewer children than adults die from cancer. Yet the average age for the diagnosis of adult cancer is the late 60s; for children it is age 6. In terms of the potential years of life saved, a cure for childhood cancer would provide roughly the same benefit as a cure for breast cancer. While a cure for breast cancer is justifiably a cause célèbre, a cure for children’s cancer is not.

What can be done? In 2008, the Conquer Childhood Cancer Act, which authorized $30 million a year for pediatric cancer research, passed both houses of Congress unanimously, but with a cruel twist: Congress allocated only a minuscule fraction of that sum, amounting to 0.00003 percent of last year’s federal budget, and even that is under threat unless Congress votes to reauthorize the act this year. Last year Congress passed the Creating Hope Act, which provides some incentive for drug companies to develop treatments for rare pediatric disease. It’s a first step, but this is a limited demonstration project, and much more is needed. More will not happen until pressure is placed on Congress, the pharmaceutical industry and other major players. That is why my family, together with families from 31 states, mobilized on Capitol Hill this week for Childhood Cancer Action Day, to push members of Congress to act on the lifeboat principle: Children should come first, not last.

Without this understanding, more children, like our daughter Olivia, will die from cancer or, should they survive, face serious long-term side effects. Doctors told us they couldn’t do anything to save Olivia’s life. My family and I, together with all the other families who came to the Hill, refuse to accept that prognosis for other children, knowing that with the right investment in research, effective treatment for pediatric cancer is within reach.

Author: Stephen Crowley

Editor’s note: Stephen Crowley is a professor of politics at Oberlin College. The above article appeared as a commentary in Roll Call on June 21, 2013.

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Capitol Hill, Childhood Action Day, chronic side effects, Conquer Childhood Cancer Act, d d, federal budget, Food and Drug Administration, heart failure, life-theatening illnesses, National Cancer Institute, pharmaceutical industry, prostate cancer, secondary cancers, Stephen Crowley, therapies | 1 Comment

End of Life Equality

Posted on June 23, 2013 by Team Captain

Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face death from disease is not the most pleasant of topics. With that said, considering the fact that cancer is the number one leading cause of death by disease in this country for our children, it truly surprised me, and continues to surprise me, the lack of standard of care for children in hospice settings.

When we originally enrolled Alexis in the local hospice program, in fact the only hospice program in the area, there was no pediatric protocol. This seemed quite strange to us considering the number of parents we knew who had indeed lost children in our area. As we discussed hospice with other cancer families from around the country, we learned how some of the other programs operated and were administered. And, more importantly, we heard too many horror stories from other parents explaining how difficult and poorly managed their child’s last remaining days just were. Many of these stories came from the hospital setting. As we were forced to face the reality that Alexis would not survive her diagnosis, we also dealt with the additional fear of ensuring that she remained pain free in the end. Ultimately, it was important that Alexis remain at home with us and not in a hospital setting as we believed that would provide her the most comfort. It was a struggle at first to ensure that Alexis’ needs were met, that the proper services were provided, and that we felt her disease and pain were managed effectively. Thankfully, these needs were met.

Upon enrolling Alexis in the local hospice program, we learned that they needed to hire a pediatric nurse to handle Alexis’ care. Additionally, we discovered there were no standards for what services were available. In essence, we as parents were working to create the pediatric hospice program. This was at a time when all we wanted to do was make each moment count and ensure that our child was as comfortable as possible. Ultimately though, a new pediatric hospice nurse was hired who we grew to truly appreciate very much. To this day, we continue to keep in touch with her. So, why is there no standard of care for children in the United States in hospice situations? That is a good question. At the very least, I think it should be safe to assume that each hospice provider have pediatric nurses on staff and access to other pediatric programs that can be interfaced together as a multidisciplinary team. We can certainly have a discussion as to what other standards are required beyond this single simple requirement.

I personally believe that this topic is much too difficult for most to contemplate. I focus much of my time on raising awareness and funding for research for new and less harmful treatments. Frankly, that is where most of the focus lies, and for good reason. Consequently, so little focus is placed in end of life care. Unfortunately, that is to the detriment of children who face terminal prognoses. For many parents, the choice does not exist. Their child must spend the final weeks and days in the hospital instead of surrounded at home by loved ones in their own room or house. I understand this is not the choice of every parent, and there is no right or wrong decision. Yet, this should not mean that there is no form of standardization across hospice programs, as well as insurance carriers for what a child should be entitled to receive in these situations. And, furthermore, it should not be up to the parents to force either the insurance carrier or hospice program to ensure that these services are provided. Providing some basic standard of care ensures that at the very least, children enrolled in hospice are guaranteed a minimum level of services. In addition, not only does this guarantee that the comfort of the child is paramount, it also provides some peace of mind for the parents who face the most difficult loss.

There must be an acknowledgment that adults and children are not alike. The approach that “one size fits all” in terms of end of life care is unacceptable. The same mentality is in place for the treatment of children with cancer. And thus, the childhood cancer community continues to languish behind, both in terms of treatment and research, but also just as importantly, end of life care. I believe it is time that Congress enters into this conversation and either legislates some basic standard of care to ensure the equality of care for children or at the very least addresses the concerns that are experienced on a daily basis by parents who face this horrible road.

Author: Jonathan Agin

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged comfort, Congress, death, end of life care, hospice, Jonathan Agin, one size fits all, pediatric nurse, pediatric protocol, standard of care, terminal diseases | 2 Comments

Rachel’s Place – Surviving Medulloblastoma

Posted on June 7, 2013 by Team Captain

UPDATE: Editor’s Note: on May 27, 2022, Rachel gave a speech at her Highlands High School graduation. If you are not aware of Rachel’s story, read along. If you know her story, scroll to the bottom and read her speach. We should note, Rachel’s not aware, but for so many of us in the childhood cancer community, her story has given us three major gifts: Inspiration, Hope and a new way to spell “Impossible.”

Today, “Rachel’s Place” is with her family somewhere between Hope and Peace. She actually lives near Bel Air, Maryland, but her real place of comfort and security is anywhere she and her family are together. Each year during Brain Cancer Awareness Month, time seems to stand still for her parents as they prepare for the annual MRI to check and see if Rachel is still cancer free. On May 14, 2013 they got the word that her scan results were clear again. This was the sixth year in a row!

It seems like a century ago when Rachel was two years old and cancer free. Back then, those were happy days. Michael and Brandy Riskin had no idea of what Medulloblastoma was. Now, they know much too well what it is and what it can do.

Video: In the beginning

Even though it represents about 14 percent of the childhood brain tumors, Medullo-blastoma is not very well known. Sometimes it is referred to as “PNET” (infratentorial primitive neuroectodermal tumor), it is a malignant brain tumor located in the Cerebellum region of the brain. It only strikes two in a million people and it is ten times more likely to affect a child than an adult. Forty percent of these rare cancers are diagnosed before the child reaches five years old. Since it is uncommon, the symptoms are often associated with other ordinary childhood illnesses. Delay in obtaining a proper diagnosis can have devastating effects.

The symptoms for this cancer often begin to appear for one to five months before the diagnosis is made. The child typically becomes listless, with repeated episodes of headaches, which may lead to misdiagnosis of gastro-intestinal disease or migraine. The child may even walk with an unusual gate. Later on, positional dizziness, vomiting, and involuntary movement of the eyes are also frequent. In some cases of late diagnosis, where the tumor isn’t discovered until it’s already causing damage to the brain, facial sensory loss or motor weakness may be present.

During the summer of 2006, Rachel was having some problems. She would often fall for no reason, and she threw up several times. During Rachel’s first few doctor’s visits, they looked at all the other causes for the early symptoms. The severity of her symptoms increased quickly, due to the large size of the tumor and excessive fluid buildup in her brain. On September 18, 2006, with a severe headache and vomiting, Rachel was taken to the emergency room and the tumor was discovered. Due to the dangerous increasing pressure on her brain, Dr. Ben Carson, at Johns Hopkins, performed brain surgery on her the very next day. It was only one month after the young girl’s 3rd birthday.

Dr. Kenneth Cohen and Dr. Rachel Rau were in charge of her treatment plan. In an article published by Saint Jude’s Research, Dr. Cohen happened to read about a new method of treating medulloblastoma just a few weeks before meeting Rachel for the first time. The article suggested that using 5 cycles of a very high dose chemo and changing the timing of radiation treatments worked better than the old protocol for some highly aggressive cancers in young children. It was a life saver for Rachel that Dr. Cohen happened to read this particular article when he did. Rachel’s tumor was so aggressive it is very likely that if the normal treatment had occurred, she would have a very low chance for survival. After the surgery, she also needed chemotherapy, radiation and a bone marrow transplant (BMT). That’s a lot for a three year old! During the third and forth cycle of her chemotherapy, Rachel’s mom was pregnant and because the powerful chemo could be absorbed through the skin and would cause harm to the fetus, she could hardly touch and hug her little girl. At one point Rachel lost her ability to speak, and after several difficult months, on Christmas Eve, all of a sudden, she started speaking again. Now that’s a Christmas present!

Mike and Brandy’s hero, besides Rachel, in this whole ordeal is Dr. Ben Carson of Johns Hopkins who, ever so delicately, removed the tumor from her brain. Dr. Carson has been known for years as a brilliant neurosurgeon. The number of lives that he has saved, and the amount of respect and awe that he has earned in the world is undeniable. Lately, he has also become known as an outspoken political figure, and an advocate for reducing the amount of waste in the healthcare industry. Because of national news coverage, he is viewed by many as a very articulate gentleman who candidly addressed many of his political views and concerns at the National Prayer Breakfast attended by President Obama. Since then, a movement has started to try to get Dr. Ben Carson to run for President in 2016. Regardless of what Dr. Carson does, he will always be the Riskin’s number one hero. After all, you never know what the future will bring. Someday, Rachel may be in a very small, elite group of citizens who will be able to testify that the President of the United States really got inside her head, and changed her life!

Through it all, countless days in the hospital, unable to work, chemo, bone marrow transplant, radiation therapy, surgery, nearly a million dollar hospital bill, pregnancy, the birth of Dylan, emotional, financial stresses, and you name it, the Riskin family stayed strong because of the support of friends and relatives. Nothing, absolutely nothing is more important to a family in a situation like this than the support of family and friends. They were the window of normality and the glue of togetherness that helped them cope and meet each new day with hope for a better tomorrow.

Video: Rachel gets honored at school!

Today, at nine years old, Rachel is a healthy third grader on her way to fourth. She enjoys playing with her best friends, Vicky and Cassidy and her brother Dylan. She also enjoys spending time with her cats, Lucy and Linus. She really enjoys creating her artwork and especially taking care of babies of friends and relatives.

May 19, 2016: In just 4 months, Rachel will be 13 years old and more than 9 years cancer-free. Her parents write, “We continue to enjoy the kind hearted, empathetic nature that she shows to everyone around her every day. Rachel is now in the 6th grade and continues to thrive, despite the overwhelming odds she faced as a toddler in 2006.

May 27, 2022: Rachel and her family celebrate her high school graduation from The Highlands School. We are so very proud of her and her accomplishments!

WAY TO GO Rachel!

Author: Joe Baber

Rachel’s Speech:

Good evening, my name is Rachel Ellen Riskin. I am eighteen years old and a Senior in the Highlands School graduating class of 2022. When I first attended The Highlands School back in 2011, I was very timid and anxious, and truthfully, I did not have many friends, nor did I know anybody who went here. My life has changed completely for the better over the ten school years that I have been here, and I would not have it any other way.

I have made a lot of true and loyal friends over the years. During my time of being at this wonderful school, with the assistance of my teachers along the way, I have learned so very much from them. I am thankful for every teacher that I have had. I have been through a lot this year, but I managed to keep my head held high and work my way through the school year without giving up. Someone very special to me had once told me “Never give up and try harder” that very special person was my teacher, Mr. Matt Backert.

My one true goal for after I graduate high school is to become a Childcare worker. I love working with children. I have always wanted to work in the Childcare field. I look forward to working with children of all ages.

It has been a wonderful couple of years here at The Highlands School, and man am I going to miss it. I have had many ups and downs and struggles here, and if I could take them all back, well, I wouldn’t, because I also learned a lot from the struggles, and still had some pretty amazing times at this school. I have made friends. I have participated in fun, social events like casual school dances and homecoming dances, Grandparents Day and book fairs. I am sad that Covid-19 kept us from having a dance this year, but I hope the kids next year will be able to have one! Let’s hope Covid goes away for good! (pause)

I would like to take a minute and thank all my upper and lower school teachers that helped me advance throughout the years, Mr. Eric, Mr. Karl, Mr. Brian, and Mr. Fred. As well as my Speech teacher, Ms. Susan. Some of my small group teachers that I have had in the past, Ms. Suzanne Fantom, Ms. Tiffany Lurz, Ms. Sara Watson (who is no longer here at the school), Ms. Heather Minor, Mr. Matt Backert, Ms. Kathy Springer, Ms. Sue Lebuhn,and Ms. Sharon Scranton. These teachers were with me every step of the way, from when I first stepped foot into this school. I am very thankful for every one of them.

I am very appreciative of the fact that I had the opportunity to attend this amazing school. I’d also like to thank my parents, Brandy and Michael for their love, support, assistance, and for always believing in me. Lastly, I would like to thank my grandparents Mom-mom, Pop-pop and Nana for everything that you have done to love and support me. I couldn’t have made it this far without all of you guys.

Fifteen years ago, I was fighting stage four cancer. Today I’m on a high school graduation stage. Don’t EVER let anyone tell you that something is impossible. Thank you very much.

Because of Rachel, we now spell it like this:

I’m possible

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Brain Tumor, Cerebellum, Dr. Ben Carson, facial sensory loss, headache, infratentorial primitive neuroectodermal, Joe Baber, Johns Hopkins, malignant, medulloblastoma, PNET, positional dizziness, Rachel Riskin, survivor, tumor | 2 Comments

National Cancer Survivor’s Day

Posted on June 1, 2013 by Team Captain

National Cancer Survivor’s Day is a day of celebratory status for many children and their families across the world. This day should be celebrated to the extreme! Parties all over should be held. Families should hug and rejoice in their status as a survivor. I will also celebrate for all the children that survive and continue to beat the odds. Congratulations and may you continue to have good news!

Forgive me, but on this wonderful day of celebration, in order to have many more children survive, and to improve their long term outcomes, I must continue to express my personal perspective as a mother who lost her son to cancer or rather the inability to cure his cancer.

Ryan was 5. He was my only son. He was the baby of our family. Ryan’s smile and personality could light up the Earth. He was my world. He had Acute Myeloid Leukemia (AML). It’s a cancer that many don’t survive. It seems to have the ability to hide from chemotherapy and in his case he was cured and then relapsed five short weeks later. After six months of intensive chemotherapy and long hospital stays, it actually transformed. The protocol used to treat a relapse of AML did not help. His doctors found a trial protocol and ran with it. It put Ryan into remission, but while doing that, it also killed his immune system. He was without any kind of immune system for 3 months. During that time he had contracted meningitis, which caused and array of problems. Eventually a lung fungal infection took his life. He died two days before his 6th birthday. Five days before his bone marrow transplant that was meant to save his life. The truth is he was cancer free. But the treatment that made him cancer free was what ended up taking his precious, beautiful life.

It’s been almost 10 months since we have heard his laugh, seen his smile, held him in our arms. Each day without him is like a dream. I wake up and think to myself, “This was a dream. He’s still here.” But then I wake up a bit more and realize this is my reality. I have to remind myself of this each day that the sun shines on this Earth. It’s a very hard thing. If you have lost a child, you understand. If you have not, I pray you never have to endure the lonely nights, the dreams, and the reality of the sun’s wake up call shining on you when it no longer shines on your child.

Sunday, June 2nd, will be National Cancer Survivor Day. I will wake up after my dreams stop, my reality sets in, and when the sun shines in my windows and realize I cannot celebrate this day like others who have children that survived. It will be very painful. It’s another day to celebrate that has been taken from me. No more birthdays, no more Christmas’, no more Easters, or Forth of Julys, it’s another day Ryan can’t celebrate. It’s a reminder for me that childhood cancer awareness must be first and foremost in everyone’s thought. It’s a reminder to me that Ryan may still be here to celebrate his survival like others if there had been enough money in funding research.

I will see people post on Facebook about how their child survived. I will see people make comments to those parents about how strong their child was, that they fought the battle and won. Let me tell you, my child did not lose. From my perspective, it’s not about how hard the child fought. Ryan fought so very hard. In the end, his type of cancer and the lack of an effective treatment was what took him from us, not the strength of his battle. A five year-old boy does not one day say “I’m not going to fight for my life.” During doctor’s rounds, in the middle of a PICU hallway filled with strangers, what happens is a doctor tells you that they are sorry, but he’s dying. There is nothing more they can do. It is not because the child didn’t fight. It isn’t because he wasn’t strong. It is not because of anything except for the fact that there was not enough research funding for an effective cure.

Instead of celebrating this day with Ryan, I mourn this day because it’s a reminder for our family that he is not here. I congratulate each and every parent that still has their child with them. Like others who have lost their children to cancer, I will continue to reach out to other families like ours and try to make a difference in Ryan’s name. I feel it’s selfish in a sense because I do what I do in his memory.

I dream of being on the other side of the fence, where my child is still alive and here with me. I dream that we are the one’s celebrating National Cancer Survivor Day and he wakes up and says, “I wanna snuggle momma.” Sometimes the grass is truly greener on the other side, like National Cancer Survivor Day.

Let’s make some noise and create awareness on a national level to find effective cures for childhood cancer. Write your Congressmen and Senators and ask that more funding be devoted to children’s cancer!

Author: Mikelle Gailler Raffel

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged acute lymphoblastic leukemia, AML, Mikelle G. Raffel, survivor | 11 Comments

Adrift in the Waters of Childhood Cancer-Arguing to Change the Standard of Care

Posted on May 16, 2013 by Team Captain

April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words “your daughter has cancer.” They are four of the worst words that a parent could ever imagine hearing. They were compounded with the horrifying statement that our daughter Alexis was only given nine months, maybe a little more with standard treatment. Experiencing that was bad enough. What happened next leads me to write this piece and make the following suggestions. After hearing those terrifying words, we were in essence sent out to drift like a boat cut loose from its dock. We were placed in a system that is difficult to navigate, filled with unfamiliar terms and concepts that are beyond the general comprehension of non medically trained people. There was little explanation of the system beyond that point and as parents, scared for what the next day might hold, we were left to float in a sea of endless questions and concerns.

That is why I believe there must be some change in the standard of care for the diagnosis and interaction with families who face the prognosis of childhood cancer. This must occur from day one and be followed up with constant efforts on the part of the hospitals and centers making these diagnoses on a daily basis. Cancer remains the number one disease killer of children in this country and approximately 13,400 children a year are diagnosed. The diagnosis of a child with cancer is not an infrequent occurrence. And thus, we must push for and ensure some bottom level of standards that are discussed and provided to parents upon the diagnosis of their child.

Parents who have a child diagnosed with cancer face the prospect of choosing clinical trials, choosing treatment centers and doctors to work with, obtaining social services as well as therapy based services, educational issues, financial difficulties, etc., etc. The list is endless frankly. One of the biggest obstacles is that when a parent first learns their child has cancer, and in our case that the prognosis is less than grim, you are completely unable to think clearly. The job of the hospital, physician and social worker must be to ensure that families are not left to simply drift through the system without guidance, hand-holding and an understanding of these issues.

Take for example the clinical trials system. To call it confusing on so many levels is an understatement. In many instances, kids diagnosed with cancer participate in phase I and phase II clinical trial studies because the overall options are limited and these test drugs provide hope. Unfortunately, there is very little explanation initially about navigating the system and ensuring that your child actually obtains an open slot in a trial. I personally remember sitting with one of Alexis’ physicians early on and reviewing forms for enrollment into a phase II study. After looking at and signing some twenty pages of documents, I had no better understanding of what we were submitting Alexis to than I did on day one. It was a daunting task to conduct research, review consent forms, understand the purpose of phase I vs. phase II trials and ultimately select what we believed would be the best option for Alexis. I believe that it must be standard practice to discuss the clinical trials system with parents of newly diagnosed children within the first week or two so that there is a firm understanding from the beginning. Of course in many instances the first consideration is whether surgery is required immediately and thus there may be delays in placing the child on one treatment or another.

Many families do not have the same options that we did when Alexis was diagnosed. Living near Washington, DC, we were more than fortunate to have access to some of the best facilities in the country. Between Children’s National Medical Center and NIH, we quickly interacted with two of the top doctors in the world for Alexis’ specific tumor type, DIPG. In the beginning stages, we had the benefit of also speaking with doctors at Johns Hopkins and Dana Farber. The point is that we had some choices and our “team” aided us in the decision making process. Ultimately we chose a treatment close to home because it was important to balance quality of life for Alexis. Many parents who have children diagnosed with cancer are not as fortunate and are simply pigeonholed into the local hospital or closest facility that may be able to care for their child. Instead of being counseled about potential options, open clinical trials and how to obtain a slot in a specific trial, they are walked down the path of least resistance. This should never occur when a parent is fighting for the life of their child. We must ensure that it is standard practice for every child diagnosed with cancer to be provided with all open and available options across the country that provides the parents the best chance of saving their child, and that all important concept of hope. This counseling must occur from the beginning of the journey. We must not continue to lay the burden solely at the feet of the parents who are dealing with their own stress and pressure while trying to save their child. From day one, an integrated team must be assembled.

At each institution we took Alexis to for treatment, which included five of the top facilities on the east coast, we were always introduced to a social worker. The first question we were always asked was “is there anything I can do for you?” To which, we always replied, that we did not know. Each facility maintained such different practices and procedures for even the littlest and simplest items involved with Alexis’ treatment. It is simply a useless practice to ask a parent, who may be completely new to the facility and the city, if there is anything that they need. Instead, there should be some standard facility driven information presented to parents upon admission or upon the beginning of treatment. I understand completely that social workers are overwhelmed and many facilities are dealing with budgetary constraints; however these are not valid or adequate reasons to utilize to continue to ensure that parents are not educated about the facility and the options available to aide in the time spent in that location. Oftentimes, we were forced to raise our voices and squeak loudly to ensure that Alexis was provided with the adequate level of service that we believed a child in her condition deserved. There were times when this particular struggle was exhausting and caused us as parents to fight. Thus, what I would recommend is that there be at least one or two social workers in each pediatric treatment center who receive heightened levels of training on these issues that I am presenting herein, and who are capable of helping parents wend their way through the childhood cancer puzzle. This relationship should start immediately upon diagnosis and be fostered throughout the course of treatment. Anything less should be viewed as far below the standard of care.

Frankly, I could fill pages and pages with my thoughts in terms of reshaping the system. I understand that it takes money, time and effort beyond which may exist. That does not and should not mean that it is not important that we ensure it becomes standard of care. It has been over five years since my wife and I heard those horrible words on April 11, 2008 and I still am learning every day about the system. We continue to stay involved in raising awareness and research funding for DIPG and childhood cancer in the hopes that true cures are found and better treatments are brought to market. To this end, I believe that it is important that this journey, however good or bad it may turn out, is made that much less difficult by the people at the institutions who we entrust with the lives of our children. We should not simply be boats cast adrift in the stormy and murky water that is childhood cancer. Upon entry into the harbor and relative safety of a hospital or oncology practice, we should be met by a sturdy tug, ready to tow us in under able guidance to navigate the rocky shores.

Author: Jonathan Agin

Image credit: <a href=’http://www.123rf.com/photo_5549237_boat-and-dream.html’>points / 123RF Stock Photo</a>

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Alexis, Children's National Medical Center, Clinical Trials, Dana Farber, DIPG, integrated team, Johns Hopkins, Jonathan Agin, NIH, patient advocate, social worker, standard of care | Leave a comment

The Patient Choice Act – Providing Choice Instead of Death

Posted on May 4, 2013 by Team Captain

I suppose I never truly realized how little choice we have individually with respect to selecting the drugs and treatments we as Americans pursue for own health. This never personally impacted me until the diagnosis of my two year old daughter with an inoperable and terminal brain tumor known as DIPG. Imagine for a minute that you are sitting in a cramped room with a social worker and an oncologist who is quickly and impatiently advising you that your two year old has terminal brain cancer. Sitting less than twenty feet from you watching her favorite shows is your daughter in a hospital bed. You have no understanding of what a clinical trial is or how to participate. You have no understanding of how to select a treatment. You are left bewildered, reeling and devastated.

As time went by during my daughter Alexis’ long thirty-three month battle, we found out that her tumor was growing. As we scrambled to once again research the available treatment options and review clinical trial data, we found ourselves in Manhattan seeking to gain enrollment for Alexis in what looked to be a potentially promising trial. Following a complete day of blood tests, physicals and the review of a recent MRI scan, we were told that Alexis was ineligible for the specific drug due to what one doctor interpreted on her MRI. The news that Alexis could not participate in this trial did not sit well with us and we explored options to obtain the drug. What we found was a difficult set of regulatory and practical obstacles that would have taken months at best to potentially overcome. As we quickly shifted gears yet again, we were able to locate a single opening in a clinical trial at CHOP in Philadelphia. Ultimately, this drug proved of no benefit after little over a month and we were left to fight to try another treatment. I use this story to illustrate the desperate nature of trying to save a loved one with a terminal or life threatening disease or illness. We were willing to try anything if we believed that it had little possibility of negatively impacting Alexis’ overall quality of life at each given stage, and if we thought it would have some efficacy.

As it stands, the regulatory scheme and legislative framework created by the FDA and congress preclude individuals and families from making conscious choices in the selection and use of drugs for serious and life threatening illnesses. Although there are certain measures in place such as compassionate use, in reality and practice they provide little to no real life access to treatments outside of trials or previously approved FDA drugs. There is however a simple and effective solution that would change this entire quagmire that seals the fate of so many millions of Americans on a yearly basis. That solution is the Patient Choice Act. I personally believe this is one of the most critical pieces of legislation that will be presented before congress this year for the childhood cancer community and beyond. Initially introduced during last congress in 2012 it did not proceed any further. It is set to be reintroduced again shortly. The Patient Choice Act is quite simple in reality and has numerous immediate benefits.

As a patient or family facing a life threatening or terminal illness, you would have the ability to obtain drugs that have already been in phase I and II trials with established safety profiles. These are drugs or treatments that are currently being investigated for potential full approval by the FDA. This provisional approval for the drug or treatment would allow additional data to be gathered as well as allow individuals to take complete responsibility for the selection of a drug or treatment. Through strongly written consent forms, the patient or family would be counseled regarding the risks associated with utilizing a drug or treatment that is currently in clinical trial testing phases and not fully approved. Of course the patient or family remains ultimately responsible for the cost associated with utilizing the drug if insurance provides no coverage.

The benefit to industry, i.e., the pharmaceutical company, biotech firm or drug manufacturer is quite clear. Instead of struggling to complete a full approval that may take ten to twelve years, as well as funding the astronomical amount of money it takes to bring a drug to market, the sponsoring company would be able to immediately access a funding source for the drug, which ultimately would have the effect of lowering the amount that needs to be expended to bring the drug beyond the trials and to the market. The drug sponsor still needs to complete full approval steps before the FDA even though the drug is provisionally approved. Our current system has the effect of pushing smaller biotech companies and drug manufactures either completely out of business or out of this country with a loss of significant tax revenue and jobs. In addition, millions of Americans continue to die without potential treatments or cures. In the end, it is about choice and freedom to be able to take control of your own individual treatment. This may all be a little bit of an oversimplification, but in the end, it is not much more complicated than this.

Rewind back to our efforts to save Alexis. We will never know whether the drugs we were not afforded access to could have helped Alexis. This is a heavy burden shouldered in two simple words, “what if.” This piece of legislation is simply about creating an alternative access stream to drugs and treatments for people with little to no hope. It is about creating hope in and of itself in a society that preaches taking control of our own destinies and personal accountability.

Before this bill is reintroduced again, I would urge everyone to call, write or email their congressperson and strongly ask that they act as a co-sponsor. At the end of the day, it is about the choices we as Americans expect. The choice is and should be yours.

Author: Jonathan Agin

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