Tuesday, February 21, 2017

The Passing of a Close Friend

I hope that all is well with you.  I will take credit for the nicer than usual weather we have been having, which Wendy and I brought back with us from Florida.  

A week ago, on Sunday, I received a call from the son of one of my best friends, Skip DeBiase, telling me that Skip had passed away.  Skip’s son asked if I would be willing to read the eulogy, which I was honored to do, but it was one of the hardest things I have ever had to do since Skip and I had been friends for over 40 years.   

Skip had struggled with back problems and surgeries, which caused bouts of depression, and then he got the worst news anyone could get; that he has a malignant tumor.  He was told that he should start chemotherapy and radiation, but Skip chose not to.  Like everything else in Skip’s life, he chose to leave this world on his own terms.

Over the summer, I was at camp while Skip was staying at home and didn’t want to see anyone.  I wrote him a letter expressing my love of our friendship, which I have pictured below for you all to see.  I hope that this letter will show you how close our friendship was, and how much I truly cared and loved him.

Wednesday, January 18, 2017

Cancer Takes Another Before Their Time

Cancer, as we have said many times, affects everyone; either directly or indirectly, and Camp Good Days is no exception.  Once again, on Martin Luther King Day, I had to hear some very sad news.  I received a call early in the morning telling me that our long-time volunteer, Matt O’Brien had passed away and had lost his battle with cancer.  Matt exemplified what it meant to be a Camp Good Days volunteer.

I first met Matt when he volunteered to be a camp counselor at our summer camp back in 1992.  He has been volunteering at camp in the summer pretty much every year except for last year.  He always volunteered at more than one program, which I am sure took up much of his vacation time.  He would volunteer at our women’s oncology weekends, our Teddi’s Team program for 8-12 year olds with cancer, and our Doing a World of Good International program.  He loved the campers, and you never questioned why he was there; he gave all that he had to the campers he worked with.  He was always willing to do anything for anyone and he never complained.  When I would go to thank him, he would always say, “I should be the one thanking you for this experience.”  He helped with our special events like our Annual Joe Benet Memorial Kazoo Fest, the Explorer Post, and the air show. 
Matt at Camp
I, along with countless others here at Camp Good Days will miss him.  I not only consider him to be a great volunteer, but also a great friend.  I know that he will be reunited with all of his Camp Good Days friends in Heaven, and I feel that Sonia is greeting him at the door.  

Each year, Camp Good Days has A Night of Gratitude, where we recognize volunteers and supporters of Camp Good Days who have gone above and beyond what we as an organization can expect, and I am very pleased to say that at this year’s Night of Gratitude, on April 7th, we will be inducting Matt into the Ring of Honor.  In this way, he will be a part of Camp Good Days for all staff, volunteers, and campers to see in the future.  He was a good man, and he will be greatly missed.

Tuesday, January 10, 2017

A New Year Brings Promise

Welcome to 2017, with all of the promise that a new year has to offer.   All of us from Camp Good Days and Special Times are excited to see what this year will bring.  Hopefully, we have laid the groundwork, and there will be some movement with Cancer Mission 2020 this year.  I hope that we will take a big step towards reaching the goal of making cancer the type of disease that when someone is diagnosed, they can continue to live a good quality of life and hopefully die from something other than their cancer.  There is a lot of good work being done to help achieve that, but I am hoping that with the election of the new president, and with one party having the majority of the two houses, that maybe some of the bickering that has plagued our government over these past many years will end, and we can move forward towards getting something accomplished. 
To me, and I think to many of you, what could be more important than finding some of the answers to this disease that takes so many of our loved ones?  As we have said many times, cancer is not a Republican, Democrat, Conservative, or Liberal disease, it is an equal opportunity illness that unfortunately takes 11,000 of our fellow Americans every single week. When your chances of being diagnosed with cancer in your lifetime are greater than that of tripping while using your Smartphone, I think it is time that something concrete gets done.  Your chances of tripping while texting are 1-in-10, but in the United States today, your chances of being diagnosed with cancer in your lifetime as a woman is 1-in-3 and as a man it is 1-in-2. Those are certainly not odds that we should continue to live with. 
With your help, and with the help of the many 1,000s of people that have signed our Cancer Mission 2020 petitions, something can be done.  We need people who are not afraid to stand up and be counted. Urge your family, your friends, and your co-workers, to get involved and help us say that we want action.  I am pretty confident that we will begin to see some.  If you haven’t signed the Cancer Mission 2020 petition, please do so today, and I hope that you will join with us.  As we have said, Cancer Mission 2020 is like a tripod; the first leg of the tripod is education and sharing with people where we are with our efforts to cure cancer.  The second is a call to action, which we started with the call to increase the number of clinical trials and trying to secure additional funding for these trials, as those are where some of the answers to cancer are going to come from.  The last leg is accountability, which so often is sorely missing when it comes to cancer and cancer research. 
I am pleased that Vice President Biden has said in some of his final interviews as Vice President that he is going to commit his time and efforts to help lead the way to finding the answers to cancer.  And I know that Louise Slaughter and Tom Reed who have been very, very supportive will do what they can do to help as well.  I am also excited to hear about the work that Eric Trump, our President Elect’s son, has done.  He has been out there working to help secure funds for cancer.  I think that this is the time to come together, and maybe we can convince President Elect Trump to make one more cabinet level position; meaning for the lack of a better expression, a cancer tsar, someone whose sole job is to bring all of the efforts to finding the answers to cure cancer together, so that we can have a coordinated effort rather than the fragmented effort that we have today. 
I needed no greater reminder of the devastation of cancer than these past couple of weeks, when I learned that someone who was a very large part of Camp Good Days in its formative years, Sonia Basko had died. I first met Sonia when she was just becoming a teenager following her diagnosis of Hodgkin’s Disease.  Sonia was a regular at Camp Good Days with our summer camping programs, our Kris Connection, and our annual Florida trip.  While I haven’t really seen Sonia in a while, it was nice reading the notes about her and to hear some of her friends and co-workers speak at her funeral about what she has gone on to accomplish with her life’s work of education and support of social justice causes for teachers.  I am confident that when she gets to heaven, she will reunite with some of her friends from the early days at Camp Good Days, but I am nervous that she might start to unionize them.  I was happy to have the opportunity to talk to Sonia’s sister and mother at the funeral and was honored to listen to them express how much Camp Good Days meant to Sonia and her sister in different ways.  Her sister came to our sibling camping program and Sonia came to our programs for children with cancer.  Like many of our long term survivors, it wasn’t the cancer that directly took Sonia’s life; she contracted pneumonia as she began to treat her reoccurrence.  Sonia, like many of our former campers, had a weakened immune system.  Diseases that a healthy person’s body would be able to reject and fight vigorously are hard to fight for someone who had cancer and therefore a very weak immune system. One of the first things I did when I learned of Sonia’s passing was to look through my office to find a couple of pictures of Sonia, and what I found were pictures that were taken when we took the kids from our Kris Connection to meet President and Nancy Reagan in the Diplomatic Greeting Room in the White House.  I can’t help but wonder if that was the start of Sonia’s lobbying efforts.  I also found her questionnaire that she filled out when she signed up for Kris Connection when she was thirteen.  Sonia’s presence will be greatly missed here at Camp Good Days.

Participants of Kris Connection at the White House in the Diplomatic Greeting Room circa 1987
President and Nancy Reagan meeting the participants of Kris Connection circa 1987
To stay in touch with Camp Good Days, visit our website, www.campgooddays.org.  Also, visit our Cancer Mission 2020 website to stay up-to-date, and to sign our petition if you haven’t already done so, www.cancermission2020.org.  You can also listen to our radio show, Good Days and Special Times, the first Thursday of every month at 6:30 PM with WYSL on 1040 AM or 92.1 FM.  If you cannot tune in when the show is airing, you can listen to the show as a podcast on the WYSL website, www.wysl1040.com.   
I will try to do a better job of keeping these posts a little more up-to-date, and I ask you to bear with me.  I wish all of you a New Year that will be filled with good health, happiness, peace, and the most important ingredient, love. 

Wednesday, November 30, 2016

The Holiday Season and the End of 2016

As the year of 2016 is coming to a close, it is a good time to reflect back on this past year at Camp Good Days.  I am so thankful for the many blessings that have been bestowed on me and I do not forget the awesome responsibility of being the steward of Camp Good Days.  This organization keeps building on Teddi’s legacy as we try hard to keep making the organization better.  On October 1st, our 38th year of camp began. Sometimes, it seems like I went to bed and woke up, and time has flown by.  Other times, it seems that I could have lived five lifetimes and not have accomplished all that we did. 
Recently, I was honored to receive the Cure Magazine GBM Heroes Award in Scottsdale, Arizona.  It was a beautiful event and I was very pleased to have a lot of people that make camp possible join me.  The event was held at the Fairmont Scottsdale Princess Hotel.  I was able to meet some amazing people who go above and beyond to help those affected by glioblastoma.  I was also able to meet Fran Drescher, who is known for her acting role in “The Nanny” and for her work in helping those who have been touched by cancer.  While I was there, I was able to visit Arizona State University, Sedona, and the Church of the Holy Cross, which was built into the side of a mountain.  I was humbled by the amazing works of nature and all of the wonderful things in this world that the good Lord created.  Looking at what was around me, it brought into perspective how small and finite a person’s role is in the grand picture.  This trip to Arizona and receiving the award made me come back to Camp Good Days even more excited to make 2017 the best year yet.
Kazoo Fest is once again in season in Rochester and Buffalo thanks to the support of JC Penney’s.  Kazoo Fest will be happening at the Eastview, Marketplace, and Greece Ridge Malls in Rochester, and the Galleria Mall in Buffalo.  Kazoos make great stocking stuffers, and they are a very fun tradition for children and adults. All of the proceeds benefit the children and families of Camp Good Days, and we are still looking for volunteers for each of the malls, so if you would like to volunteer, please call the Camp Good Days office.  During Kazoo Fest, we will also be selling car raffle tickets.  Thanks to the generosity of Vanderstyne Toyota and Toyota Motorsports, we have a 2017 Corolla SE that could be yours! Tickets are being sold for $20, or three tickets for $50. The drawing for the car will happen on Wednesday, January 4th during the Camp Good Days Annual Open House.  Every penny goes towards the programs and services we provide. 
A very exciting and meaningful event is coming up, A Night to Remember.  During this event, we dedicate the night to six camper families who need some lifting up during the holiday season.  This event is a great way to get the holiday season started.  During the night, the guests are picked up by limos, there is food, reindeers, Santa, Mrs. Clause and an Elf, music, and presents.  For myself, the highlight of the night is when I get to read “Twas the Night Before Christmas” to everyone.  This event is such a great way to get in the holiday spirit and remind ourselves about the true meaning of Christmas. 
This is also a great time of year to stay up to date on everything Camp Good Days by tuning in to our radio show which airs the first Thursday of every month at 6:30PM on WYSL 1040AM or 92.1FM.  The radio show can also be found online on our website if you do not have the chance to listen to it when it airs. 
I am looking towards the new year with excitement.  Cancer Mission 2020 is moving in the right direction, and I am hoping that it keeps moving forward within the next year.  I am so very thankful for everything that I have been blessed with, and I am excited to see what the new year brings for everyone involved with Camp Good Days.  May you and your family have a wonderful holiday season and a new year filled with good health, peace, and much love. 

Wendy, Dr. Constine, and I with Fran Drescher
(Photo credit to Derrick Jones-Nelson)

Wendy and I in Sedona

Monday, October 3, 2016

Cancer and the Election

As Camp Good Days ends its 37th year of providing programs, I find myself thinking about where we have come as an organization, and about the progression of the medical industry in treating and diagnosing children and adults with cancer.   There have been improvements, but in order to keep moving forward, there needs to be support from our leaders.   It is frustrating that, during this time when we, as a country, are deciding on our next president, there have been a large number of debates where a whole host of issues have been talked about, but unfortunately cancer hasn’t been one of them.  There was talk about the Zika Virus, immigration, poverty, and terrorism, which are all important topics, but cancer in this country is as if one of the Twin Towers is falling every single day, seven days a week, 365 days a year.  It should be one of the most important topics.  Either directly or indirectly, cancer touches all of us. 11,000 Americans die each week from cancer.  That’s unacceptable. If you are a woman, you have a one in three chance of being diagnosed with cancer in your lifetime, and if you are a man, your chances are one in two. It is hard to understand how so many families that are touched by cancer seem to be so underrepresented.  These families have valiantly fought with this disease, their family members going through the most potent treatments medical science can come up with, and I don’t think our elected officials are fighting for them.

Our leaders need to let us know how they are going to find answers.  There is no question that we have the technology, scientists, and researchers to find information, but there is no coordinated effort.  We need money and leadership to help us find the way to win the war on cancer, and that leadership needs to come from Washington.  The President needs to appoint a Cabinet level position, whose job is to bring people together to coordinate efforts and information.  I was excited when President Obama started Cancer Moonshot, and selected Vice President Joe Biden to lead the program—the last time a president had done anything in a major way regarding cancer was President Nixon when he declared war on cancer in the 70’s.  Where we have made the most progress is in certain forms of pediatric cancer.  As recently as the 1960’s and 70’s, these cancers were almost always fatal.  Today, children diagnosed with these forms of cancer have an 80% chance of being long term survivors, and not in the traditional sense, where they could live five years from the date of diagnosis, or two years off of any kind of treatment, but can actually grow to be a ripe old age.  And while these children and families still have medical challenges, most of them appear to have successfully beaten their cancer.

Clinical trials are where the answers are going to come from, and we, as a country, need to increase the participation in trials.  We need money to support trials, and we need physicians to stay up to date on information from clinical trials so they can share the information with their patients.  65-70% of pediatric oncology patients in the United States are active in trials; however, the percentage of adults active in trials is 1-3 percent.  Hopefully, the participation in clinical trials will only increase, and the important information being discovered from these trials will hopefully help end the dreadful and terminal reign of cancer.  We need support for these trials from our leaders; we need them to put finding the cure to cancer on the forefront. 

We are blessed here, in upstate New York, to have Republican Congressman Tom Reed and Democratic Congresswoman Louise Slaughter advocating for Cancer Mission 2020.  They are committed to helping Cancer Mission 2020 be successful and committed to helping end the deadly reign of cancer.  Recently, Congressman Reed and Congresswoman Slaughter came to the office where we presented them with close to 40,000 signatures to give to Vice President Joe Biden, to show how much we are in support of finding the answers to end cancer.  If a Republican and a Democrat can come together to support the same mission, there is no reason others can’t stand up and support. Cancer is not a Republican, Democrat, Independent, Conservative, Liberal, or Tea Party issue – it is a people issue.  Either directly or indirectly, cancer touches all of us. I urge my fellow citizens to make smart decisions when entering the polls this year; remember that our future president needs to be committed to finding a way to end cancer. We need to show our leaders our desperation and frustration before someone you love or care about is affected by cancer.  Let’s let our voices be heard, we can’t wait any longer. Everyone needs to stand up and be counted.

Thursday, August 11, 2016

Cancer Moonshot Needs Your Support

Recently, the presidential nominees spoke at the Republican and Democratic National Conventions, and through the whole process, both nominees talked about issues – some serious and some not at all – but neither of them even mentioned cancer and the toll this horrible disease is taking on our country and our world.

Cancer is not a Republican, Democrat, Independent, Conservative, Liberal, or Tea Party issue – it is a people issue.  Either directly or indirectly, cancer touches all of us. 11,000 Americans die each week from cancer.  That’s unacceptable.  What’s worse is that these people do not live in a vacuum.  They’re our mothers, fathers, brothers, sisters, and friends, or in my case, my child, Teddi.  Cancer in this country is as if one of the Twin Towers is falling every single day, seven days a week, 365 days a year.  Oftentimes, cancer does not just prematurely take one’s life; it seems to humiliate you in the process. 

It is pretty hard to understand how we, as a country since 9/11, have given a blank check to protecting the homeland – to the tune of some 2-3 Trillion Dollars – but if you were to ask someone if they were more afraid of being attacked by a terrorist or going to the doctor and walking out with a diagnosis of cancer, I would venture to say that cancer is the bigger fear.  And it is no surprise that people are in fear of cancer. If you are a woman, you have a one in three chance of being diagnosed with cancer in your lifetime, and if you are a man, your chances are one in two.  Those are NOT very great odds. 

I believe that these odds could be less daunting in the future if we were to reach our goal of cancer being a chronic illness that patients can live with and still have a decent quality of life, instead of it often being a terminal illness.  When we started Cancer Mission 2020 with this goal in mind, we began with a very successful Cancer Summit, for which we brought together cancer patients, and some of the best doctors and cancer service agency representatives.  Following that initial Cancer Summit, three additional Congressional Cancer Summits were held throughout Upstate New York, led by Congressman Tom Reed, Congresswoman Louise Slaughter, and then Congresswoman Anne Marie Buerkle, who were instrumental in bringing awareness to the issues surrounding cancer. These meetings helped bring people together to share ideas on how to reach the common goal of finding a way to defeat cancer. 
Out of these summits came the idea that the real answers to beating cancer were going to come from clinical trials.  In the 1960’s and 70’s, parents were being told that their child did not have a high chance of surviving cancer.  Today, with the advances made in research and technology, most parents are being told that their child has a good chance of surviving cancer, and while those children and families still have medical challenges, most of those children appear to have successfully beaten their cancer.  If clinical trials are where the answers are going to come from, it is understandable why we are advocating for them.  65-70% of pediatric oncology patients are active in trials – which is a promising amount – however, the percentage of adults active in trials is 1-3 percent, which is significantly less.  Ideally, the participation in clinical trials will only increase and the important information being discovered from these trials will hopefully help end the dreadful and terminal reign of cancer.

I was excited when earlier this year, President Obama appointed Vice President Joe Biden to lead the Cancer Moonshot effort.  I had such hope that this would finally be more than just lip service and would lead to some true action being taken, and I was pleased to have been invited to, and attended the Regional Cancer Summit, held under the auspices of Cancer Moonshot, at the University of Rochester Medical Center.  To show how much we in Upstate New York are dedicated to this effort, we presented close to 35,000 signatures to Congressman Tom Reed and Congresswoman Louise Slaughter, which they in turn presented to Vice President Joe Biden. 

It is sad how neither candidate took any bit of time during their lengthy speeches to talk about this important effort and share what they plan to do to help defeat cancer, or how they plan to work with Vice President Biden to ensure that this effort continues forward, for the good of all Americans, and people around the world.  We can’t do it alone.  It is time for everyone to stand up and be counted and use their voice and their power to vote to make sure that the nominees for President realize that cancer is something that is important to all Americans.  We want more action and less talk.  We need coordination and we need leadership, and it needs to start at the top, from the White House.

We have the means and the technology to be successful in this endeavor, but we all need to come together to make it happen.  Here at Camp Good Days, we continue to collect signatures for our Cancer Mission 2020 Petition, which supports clinical trials, which are where the answers are going to come from.  If you have not visited our Cancer Mission 2020 website, www.cancermission2020.org, I encourage you to do so, and to sign our petition, and then share it with you family, friends, colleagues, and co-workers. Join us in letting our current and future leaders know that we want finding the answer to cancer put on the front burner.

What greater gift could a President give those of us here in the United States, and people around the world, than the legacy of having made finding the answers to cancer a priority and successfully completing that Cancer Moonshot mission? 

Tuesday, July 12, 2016

Welcoming Invictus to the Camp Good Days' Family

I am excited to share that for those attending Camp Good Days this summer we are welcoming the newest member of our family, an Olde English Bulldog puppy, Invictus.  Invictus will be the third in the line of bulldogs, going back to the reason for Camp Good Days, my daughter, Teddi. 

When Teddi was diagnosed with a malignant brain tumor in 1979 at the age of nine, she underwent a seven and a half hour craniotomy, and when I met with Dr. Nelson following the surgery, he explained that he did the best he could but that they were not able to get it all. Therefore, he suggested to start Teddi on eight weeks of radiation, which would take place Monday through Friday and with that, it would be best for her to finish school at home, with a tutor.  With her brother and sister at school and her home, he suggested it might be a good idea to get a puppy so that she would have something to focus on and take care of.  I went to the library and took out a big book with pictures of all the different breeds of dogs so that Teddi could look through it and pick out the one she wanted.  The next morning she came down and was very proud of herself because she had selected an English Bulldog.

Back then the English Bulldog was not a very popular breed of dog in Upstate New York but wanting to be a good Dad and hold true to my promise, I went over to World Wide News and picked up a copy of Dog World Magazine.  In that I found a breeder in Jamestown and when I called they had one puppy left who was the runt of the litter and already 16 weeks old, who they had named Sweetums. Teddi, her Mom and her sister went to pick up Sweetums.  We had always brought dogs to Camp Good Days and Sweetums was no different, quickly becoming part of the Camp Good Days’ family. Although Teddi died a few years later, Sweetums lived to be 12 years old, the same age Teddi was when she passed away.  For the children at Camp Good Days who are going through their battle with cancer, which can include hair loss, increase or decreases in weight, scarring, or the need for prosthesis, they oftentimes don’t like what they see when they look at themselves.  Pets can be so great and become so valuable because they are not judgmental or cruel.  As the famous quote says, “I want to be the kind of person my dog thinks I am.”

We later got Jordyn who was a part of the Camp Good Days’ family for 10 years and now Invictus, whose name means unconquerable and to me represents the courage of all of our campers.  The inspiration for his name came because earlier this year, Wendy and I had the opportunity to attend the Invictus Games in Orlando, which were started by Prince Harry.  We were able to see the Bronze Medal Game between Denmark and the Netherlands, and the Gold Medal Wheelchair Basketball Game between the United States and the United Kingdom.  Wendy and I both have been to many, many sporting events over the years, but this was truly one of the most inspiring experiences.  To watch the wounded warriors, and their commitment and strength is amazing.  They say that life is 10% what happens to you and 90% how you deal with it.  These athletes all paid a significant price in protecting our freedom and athletes everywhere, as well as the rest of us, could learn so much from them.

Hence, we felt that Invictus was the perfect name for our newest addition and our newest Director of Barketing and we are thrilled to have him join our family at Camp Good Days!