From the desk of our Director/Founder: Welcome to our neighborhood! It is truly my privilege to be here. As we get better acquainted, you will come to know that I can be quite a force to reckon with. And, I had my hand in the creation of every part of this neighborhood. It is my sincere wish that our neighborhood makes just one minute of your day a little brighter. You will also come to know that when I believe in something, I will not rest until magic is made.
You see, I am a survivor. July 2010 marked my 22nd Cancerversary. Of course, I have faced adversity. Long ago I learned that I had an important choice to make. So do you. You can either feel sorry for yourself, or not. I choose not to. What about you?
Mason Dantone, 8, has been cancer free for over 4 years! He and his amazing family have chosen to give back by bringing you an awesome day of music!! All proceeds of this event benefit Cancertacular and childhood cancer in NEPA.
MAIN STAGE, INSIDE:
2:00 – 2:45: UUU
3:05 – 3:50: Underground Saints
4:10 – 5:10: Six Guns Loaded
5:30 – 6:30: Fake Uncle Jack
6:50 – 7:50: Graces Downfall
8:10 – 9:10: Subnotics
9:30 – end: RECOIL
1:00 – 1:40: Larry George
2:00 – 2:45: Almost John Lennon
3:00 – 3:40: Exact Change
4:00 – 4:40: Ronnie Williams
5:00 – 5:40: Dodge City
6:00 – 6:40: Dave Williams
7:00 – 7:40: Eddie Appnel
8:00 – 9:10: Betty Harlott
9:00 – 9:40: Ryan Post
10:00 – end: Matt Schleck
Brewster Sound Sensations
Train Wreck All Stars
Jimmy Simko – The Hit Man
Mr. Jay and Magic Frede from the Magic Happens!
LOTS of basket raffles, too!
Kids 12 and under: FREE!!
On August 31, 2010, I pledged to raise awareness for childhood by writing a blog each day. To date, I have done so. However, I feel the burning desire to qualify my statement. Blogs will be written by the end of each of my days. For instance, right now, it is 1:43AM on September 4, 2010. My day has not ended yet, so this blog counts for September 3, 2010, not September 4. 'Nuff said.
Now, kindly direct your attention to the picture placed to the right of the words that you are currently reading. Thank you. That is Persie. He is the driving force behind another project that Cancertacular™ has concocted to raise awareness for childhood cancer. Persie was named by fans of Cancertacular™ on our FB page. He had a Bon Voyage party at the University of Scranton on Tuesday, August 31, 2010. He will travel the world before returning to the University at the Royal Dancetacular on February 19-20, 2011!! Check the blog for updates on his escapades!!
After a fabulous day of frolicking with friends (including Persie), my sister and I had a truly life changing experience. We witnessed a swiftly moving vehicle in our small town (several stop signs, no traffic lights) literally crush the hind legs of a rabbit. The sweet animal was still very much alive, but made a paraplegic by a reckless and thoughtless driver. This brought us to a crossroads. What to do? Well, it was obvious for us that NOTHING was not an option. Jill pulled the car over, I exited and guided Buddy (that's right, we named him) to the side of the road. He breathing was labored and right eye bulging. We briefly left him safely nestled on the shoulder of Main Street, and fled to the nearest supermarket for a sturdy box.
Upon return, Buddy was actually attempting to crawl back out into the road. The rabbit had some get up and go, so we got up and got out our cell phones! We enlisted the help of friends, called the humane society, even a vet. Ultimately, we loaded Buddy into that box, and drove him to the river in hope of a peaceful respite. As I drove and Jill held the box, Buddy's movement slowed and finally stopped. We left him on the banks of the river after saying a few words. We took solace in the fact that he did not die alone and we did everything within our knowledge and power for him.
We did shed tears and mourn the life of a rabbit that crossed our paths just minutes before he left this world. Why didn't anyone else help him?? It is impossible for me not to connect this event to my life's passion, childhood cancer. Remember those 46 kids that are diagnosed with cancer each day?? All of them have parents, guardians, siblings, grandparents, and friends that love, adore, and live for them. Those children have rights - and they have voices, just like the adults that love them. However, it is the adults who must advocate for those children - guide them to safety as they face the fight of their lives. Is it okay to sit back when you just can't shake the feeling that something is wrong? Is it okay to "settle" for a doctor or a treatment? Is it acceptable to "tolerate" anything, especially when it involves the well being of a child who is counting on you to raise your voice for him or her?
But, where do you start? Every parent, guardian, or loved one of a child who is facing cancer has undoubtedly faced the darkest days of their life. Usually within days, maybe hours, your entire world becomes topsy turvy. Plus, anything that you thought was stationary suddenly becomes moveable. Your child becomes a statistic (#1 of 46.) Your home becomes the hospital. Your job becomes an impossibility. Realistically, the only steadfast entity in your life - your future - now lies in a hospital bed, completely relying on you to advocate for him.
There is only one option - fight! You ask questions. You take notes. You take on the starring role in your child's medical team. Below is a link for keeping a journal of your child's cancer treatment: http://http//www.beyondthecure.org/cancers-impact/medical/parent/medical-journal.html. And, after the need for all of that hell raising has ceased, you continue to fight in her honor or in his memory. You tell their story. You wear gold in September. You crawl up Capitol Hill if you have to, sharing your story with the Pediatric Cancer Caucus. You cry. You laugh.
The bottom line - I have never rescued a dying rabbit before. A laughable comparison to some, maybe even me on some levels, as you have never held the life of a child with cancer in your hands before. My sister and I had abolutely no idea what to do for Buddy. Neither did you on that fateful day. We followed our instincts, and did the best we could. So did you! I shared many tasks, ideas, and examples. This entire blog is hogwash and invalid UNLESS you believe it and it makes sense for your unique situation. I am not a parent, I am a childhood cancer survivor - we learn to fight. Please resist blaming yourself or feel guilty for not doing "enough." If you have a burning need to know more, do some research. Below are two advocacy agencies that can help guide you through the most difficult time of your life, while you summon that fight inside of you and teach your promising child through "GOLDEN" examples!
Childhood Cancer Ombudsman Program
National Children's Cancer Society
In the coming days, parents who have lived this battle will share their story on this blog. Not so long ago, I came to realize that while I endured the surgeries and chemo, they came with far less suffering than the emotional pain that my parents endured - still do on some levels. Their every minute was devoted to protecting me from the monster that dwelled INSIDE my young body. This blog is dedicated to my parents and their comrades in the childhood cancer world. I salute you. Extra special thoughts and prayers tonight for all that are facing this monster. I am beside you in this fight, if only in spirit!!
With approximately 35 minutes to spare, the writing of the September 3, 2010 blog post has commenced. Yes, I am tired. Yes, I should have removed my contacts before I started writing. And, yes, I could have started writing this entry sooner. But, 46 children in the US have been diagnosed with cancer in the past 24 hours. They are fighting for their lives. I am blogging, as a 22 year childhood cancer surivivor, for them - and for the 46 more that will join our 450,000 strong club tomorrow, and the day after that. My contact dilemma really isn't such a bother after being put into perspective.
This morning I awoke to warm temperatures, enjoyed some Kashi GoLean and Soy Milk, and tended to some tasks. Armed with two of my go-to Cancertacular™ cronies, Jill and Richie, we set out to promote awareness for childhood cancer around 12noon. With stops at no less than 5 confirmed penny collection sites, and a tasty lunch at another, Haystacks in Wilkes-Barre, we headed to Hershey, PA.
It is noteworthy that the owner of Haystacks is the dad of a fellow childhood cancer survivor, Keith Perks. Also noteworthy is the fact that we were both treated for cancer at the "Milton Hilton," or Penn State Hershey Medical Center.
While I underwent high doses of chemotherapy in the hospital, my parents took turns staying at the Ronald McDonald House just across the street. Back in 1988, only one parent was allowed to occupy the uncomfortable recliner that perched next to hospital bed. More often than not, the recliner dweller was my devoted mom, whose mission quickly became guarding my childhood and keeping a smile on my face at all costs!
The very same Ronald McDonald House has been unable to fill the demands necessitated by the growing rate of sick children. Last year, they turned away about 1100 families. After receiving a letter to announce a new expansion project, my heartstrings began to feel a tug. It became clear that the time had come to give back to the House that was our second Home for 14 months long ago.
The progression was slow for me. While it has to be said, the obvious is wickedly true - the entire town reminds me of being a broken child. Hershey took away - in just a few hours - everything creature comfort that was familiar to me, with the exception of my parents - thank goodness! On the flip side, without that experience, I would not be me. I was grateful, and indebted indeed. But, how to comfortably proceed?
First, I added the Central Pennsylvania Ronald McDonald House as the beneficiary on our original Facebook "cause" for Cancertacular™. Then, I visited the Hotel Hershey for an overnight stay and discovered what nostalgia I felt for that little chocolate town. Finally, on April 29, 2010, a contingent of Cancertacular™ volunteers cooked an organic dinner for the approximately 40 people staying at the House. Today, we did a return visit.
We served a "patriotic labor day picinic" supper! Such fun to make and eat the BBQ chicken, hot dogs, garden burgers, turkey burgers, pasta salad, fruit salad, mac n cheese (for the kids and kids at heart), chips, corn on the cob, vanilla cake, carrot cake, and brownies!!! It was utterly a pleasure to interact with the families and children. In a way, I played the "big sister" to them all - a living breathing reminder that there is a light at the end of every tunnel!
Brenna and Kade are infants battling heart problems. Kade has never been home, and neither has NICU buddy Keith. Meeting Ariana and her dad, Mike, was a great gift for me. Ariana, 15, has synovial cell sarcoma, a tumor that reared its ugly head just below her hip. She is a true surivor, and will be free of the "Milton Hilton" after just two more chemotherapies!! Of course, Persie stole her heart, and persuaded her to capture many ingenious photographs of our traveling bear. In fact, she is now the proud owner of Cans, the Cat - inspired by Persie!!
The bottom line is that this long day was filled with gifts, laughs, and memories. As we stare the end of summer 2010 square in the eyes, let's remember not to take any day for granted. Remember those oft referred to 46 children? 1/3 of them will not see tomorrow.
Positivity: the state or character of being positive.
Positive: Tending towards progress or improvement; moving in a beneficial direction.
As a 22 year childhood cancer survivor, I credit the quality of my life to a positive attitude - an attitude that was instilled and fostered carefully by my parents. During chemotherapy, I rarely interacted with other children, because they were "sick." In reality, I was "sicker" than some, but not in my mind. Eventually, my body followed suit and recovered! Living with my heart open to positivity works for me, serving me well in every day. As such, it is highly uncharacteristic to start an entry with negative facts. But, these sobering truths must be shared.
1. 46 children are diagnosed with cancer each day.
2. 25% of those children will die within 5 years.
3. 50% will survive 5 years, but develop long-term health difficulties.
4. Since 1975 about 450,000 children were diagnosed with cancer.
5. 100,000 are now angels.
6. About 12,500 children in the US are diagnosed with cancer each year.
7. Every child has a 1 in 300 chance of being diagnosed with cancer by age 20.
To kick off Childhood Cancer Awareness Month, below you will find the long awaited continuation of my first blog entry. After a lengthy hiatus and much comtemplation and learning, please check here for a new blog each day in September to promote awareness for Childhood Cancer. Most will be written by me, some by volunteers, others from professionals, survivors, parents, or siblings. All are individuals whose lives have been touched and forever changed by childhood cancer.
Part 2: As the ensuing days brought a total of 14 months of chemotherapy (including Methotrexate, Vinchristine, Bleomycin, Cytoxan, Dactinomycin, Adriamycin, Cisplatinin) and 5 surgeries, I whiled away the precious hours at home surrounded by love - and Nintendo! Too sick to attend 7th grade, a tutor was delivered to my door a few times a week. I excelled in academics, seemingly the only thing I had any control over.
Armed with a new Benetton book bag, a new outfit, and a strawberry blonde shoulder length wig, I attended Valley View High School on the first day of 8th grade! I missed the 2nd and 3rd days, as I spent them at Hershey Medical Center celebrating my final chemotherapy treatment! I returned to school on day 4, and never looked back. If I had, I would have seen my Mom and Gramma wiping their eyes as I entered the hallowed halls of learning, cancer free!!
Save a few nasty colds due to a compromised immune system, I sailed through high school. Proudly, I spoke at commencement in 1994, graduating with honors after serving as yearbook editor and attaining the title, through Future Business Leaders of America, of PA State Champion in Impromptu Speaking. My last truly carefree summer played host to a trip to California, before returning to academia at The University of Scranton. At Scranton, I was somewhat of a "legacy". I continued a long line of "Royal" students, which my paternal grandfather began with his graduation in 1935! I flourished on campus, serving as an orientation aide and resident assistant, before being bestowed with the Jesuit Community Award for School and Community Service at graduation in 1998.
May 31, 1998 was a melancholy graduation day - a day filled with promise, hopes, memories and tears. June 1, 1998 was my first day at my first "real" job at Scranton Counseling Center. It was undoubtedly hard, but what an opportunity for experience! Four years in, I started to feel sluggish, short of breath, dizzy, and gained 8-10 pounds per week. Difficulty grew to find clothes in my closet that fit, and my ability to walk distances was quickly shortened to 10 feet or less. After 6 months and several doctors, I was diagnosed with Dilated Cardiomyopathy. As pediatric chemotherapies are sparse, in 1988 I was treated with adult chemo at age 11. The very same chemo that saved my life had damaged my heart. My heart was functioning at about 30% off its capacity. After peeing out 42 pounds in 3 days (yes, I admit that I have fallen asleep on the toilet), heart transplant evaluations at Temple and Penn, and several weeks off of work, my heart was deemed stable. Miraculously, my heart stabilized further and regained some function. My heart will always be damaged, but it works hard enough to keep me quite active and quite happy! My second miracle happened shortly after the milennium in 2001.
Due to strenuous job requirements coupled with a 24 hour on-call component, I traded the Scranton Counseling Center for a 20 month stint as an Intake Coordinator at Allied Services. Another amazing experience with wonderful new friends ended in tears as I left in search of greener pastures with the Federal Government. September 2003 marked the beginning of my career at Social Security. As a Title 2 Claims Representative, I processed disability and retirement claims. This was, hands down, the most difficult task of my work life. In 3 years of training, I'm wagering that I studied enough to earn 2 more bachelor's degrees! I hit my stride as my 4th year commenced, and really began to feel as though I was making a difference.
On Sunday, February 17, 2007 I stumbled out of the shower around 10:30 AM. Feeling a little "off", I tried to comb my hair, but failed to remember what to do with a comb. My underpants lay on the counter, but I didn't recall what to do with them. Seconds (maybe minutes) later I stumbled out of my bedroom, and uttered my last word "help". I woke up 3 hours later in the ER at Mid-Valley Hospital in Peckville, PA, unable to speak, read, write, add, smile, or move my right side. Scared and frustrated, armed with only receptive communication, I was transferred by ambulance to Intensive Care at Community Medical Center in Scranton, PA.
3 days and one more ambulance ride later, I found myself in the Cardiac Special Care Unit at the Hospital of the University of Pennsylvania. After titration of coumadin (a blood thinner), physical therapy, speech therapy, and occupational therapy, I was discharged on February 27, 2007. Upon return home, reality set in with a short bout of depression, anxiety, and "why me's"? Throughout that, I strived for recovery to the best of my abilities, and returned to work at the Social Security Administration only 2 months post-stroke, albeit part-time. Throughout summer 2007, I felt somewhat sub-par; however, what was I supposed to "feel" like just 5 months after a massive stroke? On August 30, 2007, I left work and began the climb to my car, parked on floor 3. After completing 3 of 6 flights of stairs, I began to pray. Realizing that passing out was imminent, aloud I repeated "please God, let me make it to my car." My prayer was not specific enough. I did in fact make it to my car, but never made it inside, instead passing out next to my car. After regaining consciousness, I searched for my cell phone - of course to postone my dental appointment! My second call was to my dad. After his strong urging, my third call was to 911.
An ambulance ride delivered me to Mercy Hospital - where it all began (again)! Within 48 hours, on August 30, 2007, I again found myself at Penn, this time the proud owner of an internal defibrillator. I named him Charlie, like Charlie's Angels - he watches over me. His croney, Bosley, is a care-link monitor that sleeps next to my bed, recording data each night from 1-4 AM, then transferring the information to PENN weekly.
The last paragraphs have chronicled what some will, no doubt, call tragedies. I believe they are miracles. In fact, I believe that I am living proof that miracles actually do exist. God left me on this earth for a reason, and since September 2007, I have been hunting for that reason feverishly. As of November 30, 2007, I am officially retired from the Federal Government - initially a large blow, both economically and psychologically. Since then, I have realized it to be a gift, the ability to reinvent my life. I would not trade any experience that paved the way for retirement at age 31, and have no regrets, for they afforded me the opportunity to become the person I am today.
One year after Charlie was "born", my quest was completed. Hillary Clinton tells us that, "it takes a village to raise a child." I believe that it also takes a village to survive Cancer. NEPA is "my" village. Further, childhood cancer patients are not typpically treated in NEPA. Instead, they travel to New York, Hershey, Philadelphia, Danville, and Delaware, in pursuit of the best care possible. While there, they form a new "family" to aid in saving their young lives. At home, few understand what they are going through. That is where my non-profit, Cancertacular™, Inc, comes into play. Cancertacular™, Inc. became official on August 18, 2008. We are NEPA's neighborhood for childhood cancer. Our mission? No child should feel alone during treatment, and neither should his or her family. Optimally, no parent should have to choose between working to pay bills and accompanying their child for life saving medical treatment. Thus, all monies raised by Cancertacular™, Inc. remain in NEPA to support Golden Families, as gold is representative of childhood cancer.
What's next for me?? Medically, I honestly have no idea, as there are few childhood survivors who have lived longer than me. With a few of my contemporaries, we are traversing unknown paths. Paths that can be studied, affording prior mistakes to evolve into progress and pages in Journals of Medicine.
The moral of my story?? I am STILL learning, while surrounded by love and happiness. I have learned that attitude can make or break you. You need to be your own advocate. Please listen to that tiny voice when you have a concern! Above all, I know that I can handle whatever comes my way. For you see, I am a survivor!
Please follow the happenings of Cancertacular™, Inc. on Facebook at http://http://www.facebook.com/home.php?#!/pages/Archbald-PA/CancertacularTM-Inc/199555207023?ref=ts.
Welcome to our new blog!
All of the preceeding phrases accurately describe my childhood. A childhood that whiled away winters drinking hot cocoa, summers in backyard pools, and autumns at pumpkin patches. The very same childhood that was stopped dead in its tracks in May of 1988.
Spending my glory days as a 6th grader in Valley View Elementary School, the highest grade housed in that building at the time, was pure bliss. I happily ignored my little sister as she frolicked with her kindergarten classmates. After all, I was the cat's meow with my newly lightened Sun-In shade of fried blonde. Of course, I naturally jumped twice as much as everyone when the American Heart Association's Jump-Rope-A-Thon came to our school. Yes, I was a Type A even as an eleven year old. And, naturally, my left leg hurt a little because I jumped so much. That pesky left leg did hurt, so much in fact, that I found myself on the x-ray table of Mid Valley Hospital in Peckville, PA.
Remember, it is the end of my perfect year of 6th grade, just in time for summer to start.....when I heard the doctor say, "It's a stress fracture. That's unusual for someone her age. She must have overdone it." A what? "We'll have to cast her." The horror. Or not. Mom took me to buy cute skirts to make it easier to get dressed, I had friends helping me around school, and I got lots of attention - my favorite! Since it was only a stress fracture, the cast was short lived. Just two short weeks later I was walking on two feet again, instead of one foot and two attention grabbing sticks, or crutches! My days quickly returned to status quo. I was dropped off at school, and walked to Mamie's (my maternal grandmother) house afterward. She had the pool, and that's where I wanted to be! I still limped a little, but I still managed to dance the night away at the 6th grade end of year dance.
So, as I limped the month of June away, my mom offered me a deal. An ultimatum, really. If I didn't stop limping in one week, we had to return to the doctor's. Well, I couldn't stop favoring that darn left leg. This time, I skipped the x-ray and got a one-way ticket to Nuclear Medicine for a bone scan. I had absolutely no idea what a bone scan was supposed to be like, but I do know that the Nuclear Medicine had an unusually eerie and somber tone that fateful July day. And, the usually cheery faces of the technicians matched it. Something was very wrong. I asked questions the whole time, but got no answers. I went back to Mamie's and waited.
By now, even the Fourth of July had passed, and even a dip in the pool couldn't mask the pain. As I lay in my pink-clad bed on a hot summer night, I was rubbing the calf of my left leg where it hurt. I noticed that it felt different than the right leg. My dad dismissed my fears as he tucked me in, instead lovingly suggesting some of my favorite things to dream about. The man who was my hero learned all too soon that many nights of sleeplessness were likely approaching for both of us. At 5PM on bone scan day, July20, 1988, my parents were called back to the hospital. I had to stay at Mamie's with my sister. Upon return, they seemed okay. There was some whispering, but I was sure it was just about buying me a present to compensate for that awful bone scan.
Sure enough, it was more than a present. It was a vacation! My parents announced that in two days we were road trippin' to Hershey. And, my sister was not coming! I had dreams of an entire back seat just for me. As visions of chocolate bars danced in my head, one word pulled me back to reality - hospital! I'm sorry, what did you say? They did, indeed, say hospital. We were headed to Hershey Medical Center, more specifically, Dr. Robert B. Greer's Orthopedic Clinic. Almost immediately, Mamie started campaigning for cards to be sent to me. Perched on the front porch, she told anyone or thing that was able to lick a stamp to do just that, and address letters to me, at Hershey Medical Center! Hellloooo......I'm only going for one day. No nights. One little day. The night before, I packed an overnight bag, just in case. It contained no clothes or toiletries, just games to occupy me until this little adventure was over.
As we drove into Hershey, early on the morning of Friday, July 22, 1988, I squealed with delight as I caught a glimpse of the rides at Hershey Park from my spacious back-seat accommodations. Secretly thinking that I'd talk my parent into a quick stop on the way home, I quickly complied with their request, donned my sandals, and readied myself to enter the hospital. That hospital was bigger than any I'd ever seen. On the sidewalks, patients - both kids and adults - sat in wheelchairs as they enjoyed some warm July air. Luckily, Dr. Greer's office was not far from the entrance. I was thankful for that, because I couldn’t walk long distances without resting my leg. I feel like we waited for hours to see the doctor.
We took the results of the bone scan with us. Before I saw Dr. Greer, a younger doctor came in to examine me. I read his name tag - Resident. Did he live in the hospital? He didn't. Although, he said it felt like he did. He was, in fact a doctor in training. Armed with a medical degree, he now had to practice with a more experienced doctor and learn from patients like me. Cool. I knew I could teach him a thing or two!
He asked me bunches of questions, and then my parents went out to speak with Dr. Greer. He told them the whole truth, and nothing but the truth, so help him God. Guess what? They wanted to sugarcoat everything and tell me maybe half of the truth. Dr. Greer put the breaks on that. As long as a child is able to understand, usually older than 5 or 6, he believes that they deserve to know the truth. Finally, the truth. The Three Musketeers - Dr. Greer, my mom and dad - came into rescue me from the Resident's poor joke delivery.
Dr. Greer explained that I had a "nasty rascal" growing in my leg, and he knew how to help me get better. Great! He went on to explain that the "nasty rascal" was actually a lump, or tumor, in my leg. Fabulous! I was right! There is something in there, and I have a reason to limp! Great news. I called Mamie, Grandma, and Grandpa immediately. They didn't seem so excited. We went to the ginormous cafeteria for lunch and returned to the orthopedic clinic.
The doctors went on to explain that I would need more tests before we made a plan to make me as good as new. We had 2 choices: 1. Complete several tests today, go home for the weekend and return on Monday for more tests. We have a winner! A no-brainer. 2. Complete several tests today, stay IN the hospital, a few more simple tests over the weekend, and be ready to go again bright and early Monday morning. Seriously? I don't think so. The Three Musketeers thought differently, so did the not-so-funny Resident. We stayed. Lucky I packed those games....
Check back in the Post Office at www.cancertacular.org again soon for the next installment of my crazy cancer story, "The Admission."