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
Today we worshiped with the congregation at Christ Lutheran Church in Mainland. It was the blessing of the pet’s service, something that we have not previously experienced, and we were in for a real treat as, cats, dogs and a guinea pig came forward for their blessing. Christ Lutheran will be holding their first blood drive in October and Peter was invited to share his cancer journey and his passion for blood donation.
He did a nice job speaking and sharing the posters from his blood campaign. It’s been awhile since the first photos were taken and some of you may not be aware of the children’s stories so I’ll share with you the talk he gave and the photos of the children.
I’m Peter Zucca, an 8th Grader at Indian Valley Middle School and as many of you know I’m a cancer survivor! I understand that your church is sponsoring a blood drive with the American Red Cross and I want you to participate!
It’s important to me that you have chosen to partner with the American Red Cross because they are the sole supplier of blood products at CHOP; The Children’s Hospital of Philadelphia. So, thank you for that! Here’s a FACT for you: CHOP uses 25,000 units of blood a year! That’s a really big number and you have the power within you to see that all the blood needed to restore health to the CHOP kids is available to them
FACT: I have a blood drive scripture! I bet you’ve never met anyone before that has a blood drive scripture! Well here goes:
Psalm 139:14 I praise you because you made me in an amazing and wonderful way.
God has thought of everything! He never fails us! He made it possible for you to take blood out of your arm and put it into mine and save my life!
I started The Peter Powerhouse Foundation to help kids with cancer. I work to raise awareness about how much blood kids with cancer need, and to increase blood donations in our community. I work with Allebach Communications to spotlight local cancer kids and the amount of blood they needed to survive treatment.
This first poster is mine; my number is 51 and all fifty-one units were before the age of two. I’m hoping you’ll fill all the slots on your blood drive signup. Don’t you have an hour to spare to give kids like me the blood products they need to fight their cancer? I’m Peter and I’m the original Powerhouse!
Poster number two belongs to my friend Chris; we used to ride the bus together. He was eighteen months old when he was diagnosed with Embryonal Rhabdomyosarcoma. Rhabdo is a cancer of the muscle. He had chemo, radiation, surgery and blood products in his arsenal to fight his cancer.
You may think Chris has a small number at just 2 units, but low-blood counts delay chemo and chemo delays allow tumors to grow. Everyday counts when you’re trying to save the life of a child.
Don’t you have an hour to spare to give a kid like Chris the blood products they need to fight their cancer? Chris is a Powerhouse!
Poster number three belongs to Rebekah. She might look familiar to some of you. She recently finished treatment for an Ewing Sarcoma; that’s a bone cancer. Rebekah underwent chemo, radiation and surgery including a forefoot amputation.
It took 28 units of blood to get her through treatment. She lost her hair and half of her foot, but cancer didn’t take her smile! Rebekah is a Powerhouse!
It’s time to meet Erin; she was just fourteen-months-old when her family learned that she had Neuroblastoma; that’s a cancer of the nervous system. The tumor was big and so was her fight. She was blessed to have her blood products on stand-by and to recover without needing them!
That didn’t stop her from lending her smile to this campaign, because she knows that donated blood is donated love. She was too young to understand its importance, but today she wants you to know that kids with cancer are counting on your donation. Erin is a “Powerhouse”!
Jaxson was in the third grade when he was photographed for this campaign. He was just 6-months-old he was diagnosed with a brain tumor. It recurred more times than the number of units on his sign. When I think of Jaxson I think of someone that is courageous, happy and fun. I think all the cancer kids are brave and strong; but even a Powerhouse can have a hero, Jaxson is mine. Jaxson passed away last summer just after he finished the fifth grade. Jaxson is a “forever in our hearts”. Please! Sign up today and give kids like Jaxson a fighting chance at life
Meet Sweet Emma! She was diagnosed at 4 months with severe congenital neutropenia. It took 3 units of blood to get her through transplant. Little Emma is a fighter and her brave big sister Lilly is a hero; Lilly gave her bone marrow to save her little sister’s life. Photographed at 2 years-old Emma is our youngest Powerhouse.
Molly is the most recent cancer kid to join our photo campaign. She’s twelve years old and is battling a brain tumor. She’s currently on hospice and has never actually had blood products. But, she and her family have seen more than enough to know that cancer kids need blood and Molly’s participation in this campaign can have an amazing impact on your blood drive participation! Please signup today and help to save the life of a child fighting for theirs. Molly is a Powerhouse
By the way all of these children live in the Souderton or Pennridge School Districts. You can save the lives of children just like them by donating blood here.
FACT: You can donate blood 6 times per year. You can save up to 3 lives each time, that’s 18 lives a year!
You can start donating blood at the age of 16. With the average life expectancy for men of 76 years you get 60 years to donate. So men can save up to 1080 lives. Women you’ve got the men beat here with a life expectancy of 81 years and 1170 lives saved! I know some of you are scared to donate and I promise you would be more frightened if you were in the position to receive. Some of you don’t like needles – no one likes needles.
If you’re interested you can learn more about my foundation at Peter Powerhouse.org. “Like” and follow me on FB, cheer me on, and please sign up to join my blood drives whenever you’re not having one here. When a child dies from cancer the average number of years lost is 71.
Without blood products, low blood counts will delay treatment, delayed treatment will allow tumors to grow and I promise you this, growing tumors will and do take the lives of children like me everyday. Together we can make a difference in the lives of kids with cancer.
I’m Peter Zucca, founder of the Peter Powerhouse Foundation and I’m Uniquely qualified to improve the lives of kids with cancer. Thank you.
We host six ten-hour blood drives each year; the remaining drives are on August 31, October 26, and December 28. All drives are held at Towamencin Mennonite Church. Walk-ins are welcome but pre-registration is preferred. You can register today for all three drives at www.redcrossblood.org and use the code: Peter Powerhouse. If your child would like to join our photo campaign please contact us.
Some are growing up, some are frozen in time, each one is dearly loved and worth an hour of your time. Register today to give blood.
code: Peter Powerhouse
Some of you will remember Antonio (Tony) as a recipient of one of our “Memory Maker” gift baskets at the Powerhouse Putt last year. Recently I had the opportunity to visit with Tony and his family. Some of you have fallen in love with him at West Broad Street Elementary School. Some of you may never have heard his name but this little Powerhouse is one amazing guy! His mom wants you to know that he’s been valiantly fighting a brain tumor for four long years.
He doesn’t fight alone; he fights with the help of his team at Children’s Hospital Of Philadelphia and with the love and support of the students and staff at West Broad Street Elementary School, Go Bears! His families including his little sister Mariposa (5) are his biggest fans.
His tumor is not currently responding to treatment and he is receiving care through the Hospice program. While his situation is being reevaluated Tony and his family would really benefit from the village that surrounds them. Would you like to be involved in supporting this family? Our “Meals From the Heart” program is now in place for them, simply follow the link to the TakeThemAMeal.com website:
Once there you will find opportunities to support the family with the delivery of a meal. Antonio and his family would be honored if you would pray for them.
Please join us September 25th, 2017
Bluestone Country Club, Blue Bell PA
A day of fun that raises funds for kids with cancer!
Check out our events tab for registration and sponsorship information
or call Dawn at 215-421-0764
Meet Abdullah a recent graduate of Pottstown High School. His Senior Year took a turn no one was expecting and he entered cancer treatment at Children’s Hospital of Philadelphia.
We were delighted to meet Abdullah and his mom recently at CHOP in King of Prussia (KOP). In fact, that meeting launched a whole new program for us. A few weeks later we started providing meals for the cancer families there. Monday’s can be awfully long clinic days so they’re the perfect day to walk along side the KOP cancer families and deliver lunch. So we do, deliver lunch for thirty-five every Monday since and we have no intention of stopping.
We also learned that Abdullah’s treatment and blood counts were going to make graduation night tough on him and his family. He had a special menu in mind graduation night and I knew Mom had to be exhausted. So, Peter, with the help of Olive Garden in Collegeville, happily provided a small grad party for them.
Someday soon we hope that he’ll be feeling more like himself and will be up to partying with his friends. Congratulations to you, Abdullah, and health and happiness to you and your family!
100+ Women Who Care in Montgomery County is a group of inspiring women who care deeply about our community. The group gathers four times a year for a one-hour meeting. At each meeting three non-profits present their mission and compete to be selected as the winning charity of the evening. Following the selection process each member of the group writes a $100 check to the selected organization.
On the evening of May 17th The Peter Powerhouse Foundation was chosen to receive the group’s support. We want to thank this group of women for caring about kids with cancer!
If you’d like to learn more about this philanthropic group they can be contacted with the below information.
100+Women Who Care in Montgomery County, PA
c/o Baum, Smith & Clemens, LLP
2128 N. Broad Street
Lansdale, PA 19446