For additional information or to register for this FREE event contact Dawn Zucca at email@example.com
We’re so excited to have launched a new and very special support group for our grandparents. It’s hard for some to understand the important role the grandparent plays in the childhood cancer household. With parents trying to juggle work and treatment schedules grandparents become, for many siblings, the face at the door when the school bus pulls away. They become the homework helper and the taxi service for after school events. The grandparent role becomes vital in many homes.
When you consider the stress of a sick grandchild coupled with worries for the well being of their own child this newfound support role can be both isolating and stressful. That’s where GRANDpower comes in. We’re bringing childhood cancer grandparents together!
We meet the last Thursday of each month at Towamencin Mennonite Church, 1980 Sumneytown Pike, Kulpsville, PA 19443. Join us at noon for lunch and conversation. Jennifer Dressler from dresslercounseling.com will be available to facilitate conversation and offer support if needed. You’ll leave GRANDpower feeling refreshed and blessed.
For additional information or to register for this FREE event contact Dawn Zucca at firstname.lastname@example.org
Meet Tony he’s been battling a brain tumor for many years, now on hospice meals for this sweet family of four from Souderton are a true blessing. Follow the link and pick a date that works for you!
Molly’s family is trying to adjust to a new normal after saying see-you-later to Molly in January. After a hard fight with DIPG this family of seven from (Woxall) Harleysville is grateful for your continued support. Follow the link to their meal schedule. http://www.takethemameal.com/meals.php?t=HIRC0437
Kiera and her family live in Souderton. She’s fighting leukemia and the hectic treatment schedule makes for a hectic dinner hour. Follow the link to support this family of four. https://www.mealtrain.com/trains/qvq571
Sweet little two-year-old Veronica is also in treatment for leukemia. This family of five from Norristown needs some mealtime support too. Follow the link for the their meal plan. www.takethemameal.com/OCKE4045
Six-year-old Norah is heading into transplant on March 20th. This Telford family of six welcomes your support during transplant. Please follow their link and consider mealtime support for them. www.TakeThemAMeal.com/MBBS6052
The students at West Broad Street Elementary School, Souderton recently held a hat day. Their goal was to raise enough money to be able to purchase the lunch on Valentine’s Day. They also made beautiful homemade cards. I’m happy to report that they hit their goal!
We added some extra fun to the lunch delivery with balloons and decorations. There were gift bags for the kids and their siblings too. We left 13 bags at the nurse’s station in King of Prussia and Peter delivered an additional 37 to childhood cancer families in our community.
Moyer’s Specialty Foods provided a generous discount on the chocolate pretzels and Harleysville Exxon provided the Hershey bars. The heart cookies were a gift of the Tucker family from Manchester, TN and some fabulous local ladies handled assembly. Your donations made the Dairy Queen cards possible. It takes a village. Thank you for all the love!
Today is National Philanthropy Day; we were as surprised as you are. What would have normally been a school day started with breakfast at the Towne Restaurant to celebrate that Peter had been nominated for and was chosen to receive a Youth Philanthropy award.
We left the Towne and headed home to get ready. We drove to Wilmington, De and found our event at the Chase Center.
Peter Zucca, childhood cancer survivor, wins regional philanthropy award
The Association of Fundraising Professionals, Brandywine Chapter issues awards each year to recognize the contributions that philanthropists make in the community. The Youth in Philanthropy Award is awarded to individual youths and/or youth groups, 22 years of age and under, who have made a significant impact on a cause or program through fundraising and volunteer activities.
The Nemours Fund for Children’s Health nominated Peter for this award because of his support of Nemours/Alfred I. duPont Hospital for Children through his foundation, the Peter Powerhouse Foundation. Peter founded the organization in 2014 with a mission to improve the lives of other children who are fighting pediatric cancer. First, he raised $20,000 so he could purchase and donate 100 wagons to duPont Hospital for Children. Kids use these wagons when they are traveling around the hospital for treatment. Then, he raised an additional $75,000, which the hospital used to secure Cinemavision goggles. These wearable devices allow children to watch movies while they are receiving an MRI, which can reduce their anxiety and often allow them to avoid sedation. As it that was not enough, Peter provides gift cards to the cafeteria and to the gift shop and has donated Xboxes, books and toys during the holidays and throughout the year. He also organizes regional blood drives and provides scholarships to children going to camps that specifically support pediatric cancer patients. Peter raises funds online and through a multitude of golf tournaments and special events.
Peter will be honored at the Philanthropy Day Celebration in Wilmington, Delaware on November 15, 2017.
Meet Colin, he’s a fifth grader at Gwynedd Mercy Academy, he cares about kids with cancer. You may remember a few years back when he had a birthday party where he accepted donations for Peter Powerhouse and no gifts for him.
Colin has just completed a service project for school. He fundraised to help us provide meals for families of children with childhood cancer. But he didn’t stop there; when he came up short he gave his own savings too. Let’s face it having people hand you donations feels a lot better then opening your own wallet and handing over the money you’ve been saving for something cool.
Monday, Colin and his mom meet me at Chick-fil-A. Colin handed me a check to cover lunch for the families at CHOP in King of Prussia and his mom was able to match his hard work at her company and the amount became lunch times two!
He helped load the meal into the car and then delivered and setup a buffet in the oncology floor, family room. When the families know that lunch is served they flock to the table. This meal is so valuable to them! This project is so valuable to Colin!
When we teach our children to love, to care and to serve we raise decent, caring adults! Well-done mom and dad, well-done Gwynedd Mercy Academy and most importantly well-done and thank you, Colin!
Those of you who follow us on Facebook may have read a recent post about this special boy. Tony has been battling a brain tumor and is currently on hospice. On a recent visit I learned that his favorite color is red. We've started a movement to paint the town. Today his school, West Broad Street Elementary, participated in National Walk to School Day. Tony lives across the street from his school, he's no longer able to attend, and he and his mom were going to watch the parade of kids walking down the sidewalk past their home.
His awesome friends, school staff and home and school decided to turn the morning walk into a "red out" for Tony. They even bought balloons for the kids to carry. With the help of a little angel we were able to have red bows made for the school lamp posts. Some of the neighbors had ribbons and bows out on their trees and mailboxes too.
in After a few emails with the Chamber of Commerce and a flurry of phone calls last evening with Kim from Univest and Chief Leary from the Police department a plan was hatched to made this a day that Tony, his family and the West Broad Street Bears would not soon forget! Tony, his mom and sister and his nurse rode to the Univest parking lot in a police car and Dad and I got to ride the fire trucks!
Univest bank added balloons and bows to the parking lot the walk started from and Principal Hadfield gave the students their instructions. The teachers, parents and kids were excited and the press even made an appearance. Tony's mom and Principal Hadfield were interviewed. The group made a right out of the parking lot and headed to school. I just can't say enough about the love of this this community and school community.
It was an amazing start to another great day of character building for the Bears and support for Tony. I hope you enjoy the photos below from this morning.
Everyone arrived safely at their destination. A tired super hero was returned to his home. The local police and fire fighters were exceedingly kind and supportive.
A final plee was made to paint the town red and to pray for God's grace.
On Sunday August 6th we were warmly welcomed at Tilly Mints Tea Room. Trish and her staff had our tables set with varying china patterns and teapots. One-by-one the cancer mom’s arrived and found seats with friends old and new. As is often the case in our world two of the moms had to cancel on very short notice to seek medical attention for their boys. Each of us was saddened by their absence but no one understands their struggles more than this group. Some of us have been on this journey for longer than we care to think about and some had just joined in the months before hand.
While Trish and her staff went about preparing our lunch we worked on getting reacquainted with one another. There is something very special about our time together, each of us has been through the unthinkable with our children and each of has experiences that mirror the other yet are entirely different all at the same time. The tea room has it’s own brand of slow easy comfort and so does a table full of mother’s that have been in the trenches together. There is no need to explain medical terminology or procedures, no need to mince words, no need to hold back thoughts, fears or tears. This group of ladies gets it! It didn’t take long for stressed expressions to turn into warm smiles and laughter.
We spent some time sharing about the past diagnosis and the present situation of each of our children, we filled out 3x5 cards with information about what to add to “busy bags” to occupy future chemo kids and what items we most missed at the hospital when we were surprised with our first admissions. It was a really lovely gathering Trish saw to every last detail of our time together, a beautiful meal, an inviting atmosphere, gift bags and door prizes.
She reached out to the local business community and many joined her efforts to add items to the Tilly Mint gift bags. Thank you Debbie Rasbold of Great Looks Studio for the beauty products, Jenny Ferry of Fairytale Magic Travel for the Disney items, Rich D’ Amico of Consign for Design Home Treasures for the rose bouquets. Lisa Derr made beautiful homemade soaps for us and Gina from The Body Serene Day Spa and Salon in Skippack added gift cards so that each of us could be pampered at a later date.
We could not have asked for more from our time together except for more time together.
When a family receives a childhood cancer diagnosis worrying about meeting the needs of that child is more than enough to be concerned about. Now imagine if every trip to the hospital or doctor carried with it the extra burden of knowing that your vehicle couldn’t handle the trip. Loading your precious cargo into a car that constantly overheated leaked when it rained and needed brakes. Well, that was reality for one of our families.
At Peter Powerhouse headquarters we get to do lots of special things but we’re only as special as the community that surrounds and supports us. Yesterday we invited Abdullah and his mom to have their poorly functioning car evaluated and repaired. The bad news was that things were worse then we imagined and the value of the car didn’t warrant the cost of the repairs. Now news like this could be a blow to any family but to a family that needed to make ride arrangements for radiation not just yesterday but for twenty days it was quite a blow.
The people responsible for arranging repairs arranged a new vehicle instead. Today was a really special day for us; we got to experience the true joy of people giving from their hearts and their faith.
“This is given in the name of Jesus because we are Christians and that’s what Jesus calls us to do.”
We got to watch a moms car fears wash away with the rainy day.
For the past 4 months I said an extra prayer every time I got in my car. I was so happy when I was able to get back home most days. I had overheating issues, broken door, brake problems, just to name a few. The thing I worried about the most was being able to get my son to treatment. I prayed everyday, every night, every time it rained, and asked you guys to pray for us. Thanks to some amazing people we were blessed with a "new for me" vehicle.
Tonight they drove in safety, their only concerns were for their child’s health, to Penn for his radiation appointment. And now we get to share this wonderful day with you, our community of support, we are grateful to each and every one of you because together we make a difference!
Matthew 25:40 (NIV)
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
We have an 8th grader! I love a new school year with its fresh starts and new beginnings but it always feels so bittersweet. Each year during back-to-school shopping I find my mind drifting back to the day the doctor crossed “riding the school bus” off of my bucket list for Peter’s life. It’s interesting how the memory works, the sights, sounds and smells of the day are all right there with the painful words. Then the first day of school arrives and I’m so excited. I hug and kiss him and whisper, “I can’t believe you get to live” I remind him to live well to honor his friends that have lost that the privilege. Now, as a teenager, he rolls his eyes and says, “I know”. Truthfully he doesn’t need to be reminded.
It’s always the day that he and dad grab the football for a little game of catch and some conversation before the bus arrives. I’m usually the only one interested in the First Day photos but each year we’re glad we have them. As we celebrate this milestone in Peter's life we are, at the same time, mourning the loss of so many children that we have loved on this journey. I can’t imagine the families that stand at the bus stop short one precious child, the ones that put on the brave smile until the bus pulls away. The loss isn’t simply for the parents but for the siblings too many of which will face the bus stop alone, my heartaches for that injustice. Cancer is such a miserable disease it takes so much from our child. Today many we love are crying over the simple joy of a bus ride to school.
September starts Childhood Cancer awareness month. There are many ways to be involved all year long though monetary donations, blood donations, attending fundraisers, volunteering at events, driving a meal to Children’s Hospital of Philadelphia or cooking dinner for one of our cancer families. Simply reach out and find a way to be part of something that will help on some level and know that less than 4% of research dollars go to fund a cure for childhood cancer. Don’t our children deserve more?
Many of you followed our Facebook posts in disbelief as we fought to get medical approval from our insurance companies to pay for a new leg for Peter. The leg was approved after a four-month struggle and now people are asking us things like “how’s Peter’s new leg?” “Can Peter walk better now?” Well truth be told it’s a little complicated you can’t simply buy one off the rack.
Currently, we’re in the final phase of having the new leg built and fitted. I thought I’d share some photos with you to help you understand the prosthetic and the fitting process. It starts with a cast of the stump or residual leg. The cast is used to make a mold and the mold in turn becomes a test socket.
We traveled to Lawall Prosthetics on Tuesday for the first glimpse of his new leg and microprocessor knee. In the above photo Peter is wearing a silicone sock over his stump. It may appear flesh color to you. This sock was also custom made to ensure a good fit, via a cast process, and a sock that wouldn’t slip. In some of the pictures you maybe able to see a band of clear seals around the sock. The clear portion on top of the leg is called a test socket. It’s clear so that the prosthetist can see through it be sure the silicone sock makes contact on all sides and that his leg is all the way down inside the socket.
This picture shows a good fit – the silicone sock fits his leg well, the seals are sprayed with alcohol so the sock can slide into the test socket. The alcohol quickly dissipates creating a seal. The suspension of this leg is a vacuum suspension. Notice the round white knob that protrudes out of the lower part of the test socket? When Peter slides into the socket he presses that button and it displaces the air that gets trapped inside thus allowing a vacuum seal and his leg to fully rest inside
The flag draped knee, which is seen in the center of the leg, is a microprocessor. An app on the laptop computer allows the knee to be programmed. It will respond to Peter’s gait and it has the ability to bend and straighten electronically instead of mechanically. Mechanical knees take more energy to use. It will need to be charged at night just like your cell phone and it comes with a car charger.
A size 11 foot has been added to the bottom to allow for a matched fit in his shoes and safer walking. Now that the test socket is a "go" they will use the same mold to make a socket that is stronger. When we return for the next fitting they will make adjustments to the final socket and work to program and fine-tune the knee. We hope that he'll bring it home in the next week or two. I hope that this is helpful; I'm sure I left a thing or two out but I'm a mom not a prosthetisit