It’s a Start…But Not Nearly Enough

As readers of this blog know, over the past couple years Megan has become an avid and outspoken advocate for childhood cancer.  She has been very clear that the issue of childhood cancer is much bigger than her, which is why she has become a voice for all kids past and present who have fought this vicious disease.  She is especially fighting for all of the healthy kids to make sure that they never have to experience the nightmare posed by this evil…and I believe preventable…disease.  As Megan has become an aggressive spokesperson on this issue, I have also spent considerable time researching this disease so I could better support her in her efforts.  The results continue to be very sobering.

What we have learned is that our country has failed our kids miserably when it comes to prioritizing childhood cancer.  The failure begins with the large pharmaceutical companies who do not view curing childhood cancer as a profitable venture.  It is true that childhood cancer represents only 1% of all cancers across our country.  As a result, the large pharmaceutical companies do not see investment in childhood cancer research has helpful to their bottom line, so they essentially ignore the issue.  This leaves the responsibility for funding pediatric cancer research to the Federal government, and unfortunately, they have not fared much better.  The entire budget of the National Cancer Institute usually is appropriated at about $5 billion per year.  Although some statistics vary, the general consensus is that they spend only $195 million on research that is focused specifically on the 13 types of childhood cancer.  This means that only about 4% of their budget is focused on childhood cancer.  You may hear politicians dispute that claim, but they are using fuzzy math, because when the National Cancer Institute researches adult cancers, they will often check to see if the treatment might be helpful with one of the childhood cancers.  Such an approach does not make childhood cancer the focus, but rather an afterthought when it comes to cancer research.  The $195 million number is the estimate that the NCI allocates for research specifically focused on childhood cancer.  The results of this utter failure are sadly, very predictable.

Since 1980, fewer than 10 drugs have been developed for use in children with cancer –-including those specifically for children and those for both children and adult–compared with hundreds of drugs that have been developed specifically for adults. Of those 10 new drugs, only three of them were approved specifically for children.  The rest were approved for adults and happened to be effective with some childhood cancers.  Furthermore, Megan was treated with many of the same drugs that were first developed in the 1970s.  It is sobering to realize that Megan is being treated with the same drugs that I would have been treated with when I was a child…and I am 51 years old!!!  Prostate cancer has an average age of diagnosis of 66 years old, and yet the NCI spend more on prostate cancer research than on all 13 types of childhood cancer combined…and the average age of diagnosis for pediatric cancer is only 6 years old.  The money spent on adult cancers by the NCI does not include the millions of dollars more that is invested by big pharmaceutical companies that is absent for childhood cancer.  I’ve heard it said that in terms of productive years of life saved, curing childhood cancer would be the equivalent of curing both breast and prostate cancer combined!!!

All types of cancer are terrible, and no one should ever have to fight this evil beast.  Megan always says that she is happy that the adult forms of cancer are receiving the funding attention they are…but she just wants to see childhood cancer placed on an equal playing field.  That’s why she is fighting so ardently to make a change…and she’s not the only one.  She has kid cancer warriors across the country who are in this fight with her and are making their voices heard.  They are no longer sitting on the sidelines waiting for the adults to take care of them, because that approach hasn’t worked.  Instead, they have decided to take matters into their own hands, and they do not take no for an answer.  These kids are passionate, motivated and determined, which is a tough combination to beat.  And from the sound of things last week, it seems that maybe…just maybe…our politicians are starting to take notice.

We were watching the State of the Union Address last week, which is an annual tradition for me.  During President Trump’s speech, he suddenly made mention of childhood cancer and the need for more Federal support to develop more effective treatments.  Megan was sitting next to me when he said it and we both looked at each other with a look of shock on our faces.  Megan rewound the video three times just to make sure she heard it right.  President Trump actually used a portion of his SOTU to specifically address childhood cancer!  He even had a childhood cancer survivor in the audience!  During his address, he called for $500 million in new Federal funding over the next 10 years to support childhood cancer research.  Although that figure is not nearly enough to put childhood cancer on a level playing field with the Federal dollars allocated towards adult cancer, it is a start.  However, much more important than the money, Megan is hopeful that by bringing up childhood cancer in his speech, that it will bring much needed national attention to the issue.  Much more needs to be done…but it’s a start!

Speaking of advocating for childhood cancer, Megan recently learned that she will be the keynote speaker for the annual Cal’s Angels Fundraising Gala.  Cal’s Angels is an amazing organization that provides wishes for kids who are fighting childhood cancer.  Since Megan received a wish from the organization, they asked her to give the keynote address.  The event is in St. Charles on February 23.  Megan has given short speeches on a few occasions, but this will be her first keynote address.  That night, she will be advocating for childhood cancer in front of 1000 people at a black tie event, so it should be a wonderful opportunity for her to not only support a great organization, but to raise more awareness for childhood cancer.

Megan’s next set of scans is scheduled for March 11.  Until that time, Megan has been using this down time to focus on her mental and physical health.  She also still finds time to bake, which of course makes us very happy!

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She also was able to meet up with one of her friends on Saturday night.  Caitlin Cannon is the daughter of two of the students that Deb and I taught at Reed-Custer High School back in my first year of teaching…way back in 1989!  It was good to catch up with Matt and Michelle Cannon, and Megan always has a great time with Caitlin.  Megan was also pretty happy that we decided to meet at Mod Pizza, which is one of her favorite places.

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This weekend, I was working on getting pictures together for the congratulatory ad that we are putting in the Coal City High School yearbook in honor of Megan’s senior year.  I ended up spending way more time than I expected, because once I started looking at old pictures, I couldn’t stop!  Luckily, Deb did a great job putting together photo albums from when the girls were little, so we have lots of old pictures.  Here were a couple of my favorites 🙂

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Until next week…

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Published by

kabugg

Megan is my beautiful 14 year old daughter who is currently fighting Stage 4 cancer. This is the story of her journey as told by her father.

19 thoughts on “It’s a Start…But Not Nearly Enough”

  1. I think Megan is such a brave young lady and quite the fighter. I also watch the state of the union address and was so glad when the president made that request for more money for child hood cancer. I feel that Megan should have been in the audience also for all the hard work she has done. God bless you Megan and I’m praying for you. Take care and keep up the fight and good work. ♥️♥️♥️♥️

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  2. Megan,
    What comfort in the cold of February – a cat, a warm blanket, and caring Family and friends!
    GO GET EM with your keynote speech!!!
    Smiles to you,
    Dr. Charles W. Birch, Morris

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  3. What an honor, Megan, to be asked to do the keynote speech for Cal’s Angels. You will do a wonderful job!
    Congratulations ❣️👏🎉

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  4. You show them Megan Megan strong let your body heal stay away from sick people enjoy seeing pictures of your cooking and relaxing with your pets and friends stay warm you are always in my prayers for strength and healing 🙏😷

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  5. I was thrilled to hear the Zpresident asking for more money for childhood cancer. I thought of Megan and all the work she has done to obtain funding. Keep going Megan

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  6. I also heard the speech~it was a good start! Hopefully new treatments that have just been waiting for funding will become a reality! My fingers are crossed. ♥️

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  7. I also immediately thought of Megan when I was watching the State of the Union Address. I told my husband about your blog and Megan’s brave struggle. We continue to pray for her at our weekly prayer time at church.

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  8. Is it the blanket you always have on you that has always attracted that cat? I notice you always have it and she is laying on you. You are both beautiful. We love our cat, Missy, that we adopted the end of April, she is about 5 now.

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    1. Every time I get an opportunity to complete a government survey, I list funding for childhood cancer research my first priority!

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  9. I heard President Trump say that about childhood cancer research in SOTU address and Megan is the first person I thought of! Hopefully his words can bring this issue to the forefront of lawmakers attention and a cure can be found for all types of childhood cancers!

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  10. Congratulations on giving the key note speech- it’ll be a great one because of your passion and experiences. When I heard the president speak of childhood cancer in the state of the union, I thought of you and knew that is was a start at least in raising awareness. Blessings to you.

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