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
Tonight was a lovely evening. We joined together with many at the Children’s Hospital of Philadelphia (CHOP) Founders Society Member Reception. The venue was beautiful, the food was delicious and the company was delightful.
When I picked Peter up at school he broke the disappointing news that he had too much studying to do and he would not be able to join Dennis and I for the evening. Our support of the Oncology department and oncology families at CHOP will be significant for years to come. We’ll return as a family next spring.
Clark Hooper Baruch, Trustee, of the Founders Society was the Master of Ceremonies and she introduced Madeline Bell, President and CEO. Madeline shared her vision for future growth and direction of the hospital. A young POTS patient named Tessa shared her inspiring journey. It is a gift to have quality pediatric healthcare in your own backyard; it’s a greater gift to never need it.
Two large screens flanked the podium. A slide show of sweet children and donors was silently playing throughout the evening. My eye was caught by the faces of children that we support and by a familiar face from our community. You may recognize Don Hoff from the Harleysville Ace Hardware. We are blessed to be part of a community that cares about others. Many thanks; the support that you provide to us allows us to be a gift to so many.
Back in the early days of Peter’s diagnosis and treatment he (with my help) became a total hat baby. Partly because his little baldhead needed protection from the cold months in New York City or the bright sunshine in the fields at home and partly because I wanted him to look healthy and cute unlike the sick little chemo-baby he really was. Either way he totally rocked his hats and Dennis, kindly, indulged me in the occasional hat-shopping spree. The extra boost of personality Peter got from a good-looking hat was pure joy for me; he knew the buying sprees would be short lived with a zero percent chance of survival.
Many kids and young adults need to emotionally detach from their disease, treatments and the ensuing side effects like hair loss. Taking a stylish shelter from their disease for emotional survival as well as protect their bean from the elements is often necessary. A healthy hat budget can be as illusive as a healthy child during treatment. When I explained this need to the kind folks at The Blue Berry Hill, Salt Lake City, UT they immediately understood and were willing to help. We’re so pleased to announce our relationship with this fun company!
Imagine my delight when this big box showed up on our porch! We’ve got the most beautiful hats for your sweet chemo-child. We’ll make deliveries to Children’s Hospital of Philadelphia, KOP and Nemours/A.I. duPont and local moms may contact me for an opportunity to stop-by to check our stock. Please visit their website at www.theblueberryhill.com check their size chart and we’ll see to it that your Powerhouse goes through treatment in style.
Sometimes a little thing can make a big difference in the life of a child with cancer.