September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
The Other Faces of PCFLV: Our Stories
Michelle Zenie, Executive Director and Mom to Cole (longterm survivor of Acute Lymphoblastic Leukemia):
At this point, most people familiar with PCFLV know my story. Briefly for those of you who do not know about Cole...Cole is my now 18 year-old son who was diagnosed with Acute Lymphoblastic Leukemia at the age of 3. At the time, we also had a two week-old newborn...so needless to say, it was a crazy time in our lives. Cole endured almost three years of treatment and, in the big scheme of things, did very well and had a fairly uneventful course of treatment (other than the usual neutropenic fever hospitalizations and, oh, almost dying due to catching chicken pox from an unvaccinated preschool classmate!). With that said, he is now an adult (yikes!), in college, and healthy. He deals with anxiety issues and some cognitive processing issues, BUT we are the lucky ones in this world of pediatric cancer.
My child being diagnosed with pediatric cancer was, of course, not something I ever expected (although I oddly always had the sense that something "big" like this would happen in my life). Nor did I ever expect to be working for a non-profit foundation that supports families who have been unexpectedly and unwillingly plunged into this world of pediatric cancer. However, here I am. And I am blessed. Blessed to do this "work" and know these people and be part of this club that none of us would have ever chosen to be part of.
Thank you for taking the time to honor our pediatric cancer kiddos and their families by reading these 30 stories over the last 30 days. Please remember that even as September ends and October begins, children are still fighting. Parents and grandparents are still watching them fight. Siblings are still wondering why life has so suddenly changed for them. Please consider continuing to honor all of these amazing people by getting involved, staying involved, and spreading the GOLD with the Pediatric Cancer Foundation of the Lehigh Valley. Thank you!
Pauline Grady, Administrative Assistant and Sam's Mom:
This year has been an interesting year, in terms of the "after cancer" life. We hit the 5 year anniversary of the day Sam was diagnosed, and celebrated 2 years off treatment. On July 1st (diagnosis day) of this year, I traveled back 5 years and one more day, to June 30th, 2011. I traveled back to the day when our life didn't revolve around cancer. I traveled back to a day that my youngest son Sam was a seemingly healthy little boy with what I thought was just a run of the mill stomach virus. I went back to the day that life was moving along at a rabbit's pace. It's amazing how everything you worked towards, lived and breathed for, your home, family, job, education....everything just stops. Everything. One word will do that. One word will make everything stop and crash to the ground. Cancer. When it's one of your children, the pain and sadness and guilt is unexplainable and often unbearable.
I revisit that "extra day" not to make myself sad, or dwell on the past, but to remind myself how far we've come, and how much farther we have to go. Looking back at pictures, reading things I have written and talking about our journey keeps me grounded and humbled. It reminds me where we started and where we are. Who we've met and who we've lost. It reminds me that you can turn a mess into a message. It reminds me that if you can't change a situation, let the situation change you.
Sam is thriving when it comes to cancer terminology. He continues to be in remission and has 3 more years until we can officially say that Sam is cured. Along with the thriving piece, there are also numerous side effects that Sam deals with. Childhood cancer is different from adult cancers. Cancer attacks these kids while they are still growing, their bodies are maturing and changing. Sam's immunity and sensitivity has changed, he struggles with temperature recognition (often too cold), his taste buds have been altered, he has on going gastrointestinal issues, he gets random allergies to things, he deals with behavioral and emotional issues, ongoing leg pain from years of peripheral neuropathy, balance issues, memory retrieval issues and processing issues. He needs an EKG every 5 years for the rest of his life because of one of the chemotherapies he needed to take to save his life. He can never lift more than he weighs because of another chemotherapy that saved his life.
This is where my job comes in. I am lucky enough to work for one of the most beloved foundations in the Lehigh Valley. The great thing about PCFLV is that we are a great big family. All the stuff I mentioned above...there are other children that are going through the same exact thing. Some not as severe, others with more severe lasting effects. We share stories, provide strength to each other, offer support in any way we can.
A few years ago, at the tail end of Sam's treatment, we were having a particularly rough time. Sam was in and out of the hospital and that day we were in the ER we had come by ambulance. Michelle Zenie, the Executive Director of PCFLV, came down to the ER. As she turned the corner I burst into tears and told her that I just could not go on any further...I was tired, exhausted. I couldn't find the strength anymore to continue to move forward. I wanted to run away and never come back. She hugged me, looked me in the eye and said "you can do it, you have no other choice...I got through it and so can you."
That's what PCFLV is. We are not just a couple of faces sitting in an office behind desks, we are hugs, tears, strength, support, love and hope. We are family, friends and the motivation that we all sometimes need to keep moving forward.
I am beyond grateful to share our story. PCFLV has and will always be a significant part of our life. Starting with Sam's treatment, continuing through survivorship and helping us recover and heal.
Tracy Stauffer, Marketing and Community Relations Coordinator and Cancer Mom to Vanessa for 9 years:
I feel so blessed to be able to work here at PCFLV. I seriously believe that PCFLV saved my sanity years ago when we first became involved in the Foundation. The activities I participated in with other cancer moms were so therapeutic. And the opportunities that PCFLV provided for my entire family allowed us to almost feel normal for short bursts of time. I hope that I am able to give to new families the same things -- tangibles and intangibles -- that PCFLV gave and still gives to me and to my family. Thank you to all who participated in 30 Days, 30 Stories in any way. And welcome to all of the new followers of PCFLV's Facebook page. Together, we can do great things for Lehigh Valley pediatric cancer families!
Lisa Kappes, Assistant Executive Director:
Five years ago, as a stay at home with teen age boys, I was presented with the opportunity to join PCFLV. I was hesitant at first because I had worked with a lot of different populations such as abused and neglected children, in an inpatient psychiatric hospital, and as a school social worker. If you asked me 5 years ago I would have said I never thought I would work in the pediatric cancer world. I thought it would be too sad and scary.
As my children grew and my volunteering in the community was as active as ever, I began feeling like I had a bigger calling. I held mini fundraisers for Autism Speaks and for The Perfect Fit. I enjoyed socializing but wanted it to also be for a good cause. I had butterflies in my stomach as I anticipated in excitement what was waiting for me.
Five years ago, my vague but hopeful vison was answered. I began working for PCFLV. When I think back at the beginning, there were a lot of things I was naÃ¯ve about. I remember one of the cancer moms planning a trip to Washington DC to meet with advocacy groups. I was helping families in the local area and was happy to offer them free support, plan events that brought them together and to help plan fundraisers that would benefit them. But I didn't know why childhood cancer needed advocacy as I do now.
One of the things I love most about PCFLV is that we are like one big family. We say it's a family we wish did not exist. But until there is a cure, our foundation will be there from day 1 to forever to hold hands, give hugs, have broad shoulders, to have ears that listen and hearts bursting with love for these 200+ local families in the greater Lehigh Valley. There are a lot of great foundations that do great things for pediatric research. There are great big foundations that raise a lot of money for families treated in other areas, like at Hershey Medical. There are even bigger groups that help with all types of cancer diagnoses and do amazing things, but don't focus on pediatric cancer. The things that these others don't do is where I am proud to say PCFLV steps in. The day to day. The connections that local families make to one another. These local families know we are always there to talk to. If they need gift cards because they had an unexpected expense, they don't have to worry about putting gas in their car or food on their table.
The families know how much I love them. People ask me now that I am an empty-nester if I am sad. Of course, I miss my own children, but I tell everyone I have 200 children now. I am passionate about what PCFLV does. I have never been so proud or feel as blessed to do what I do. I think this is the most uplifting, amazing job anyone can have. Our families are gracious, find light where there is darkness, and are true warriors that I am privileged to know. Our community has been wonderful, and I am so proud of all the support we are given to continue succeed in our mission to love and help these families the best we can. I thank you for listening, for being aware, for knowing September is Childhood Cancer Awareness Month and is symbolized by the color gold. I thank you for knowing how many local families are affected, for knowing this horrific disease is a family not individual fight. I thank you for becoming better educated about who you are supporting and encouraging you to check the facts about where you money goes. I thank you for feeling love in your heart for pediatric cancer families like I do.