We have been sponsoring Peter Powerhouse blood drives in our community since June of 2015. Local cancer kids have joined with Peter in a powerful photo campaign that spotlights their individual need for blood products. You may have seen our colorful, poignant posters, around town when you do stop and take a look, these of the faces of children who’s lives have been impacted or saved because of donations like yours. Take a quick photo of the drive info and when you get home or to your work register for the next one! Our one-and-only five-hour blood drive quickly became our four a year blood drives and now we are holding six ten-hour drives a year. We are the largest non-corporate blood drive in Southeastern PA/NJ. Our December 29th drive yielded ninety-eight units of blood and each unit has the potential to save three lives. Wow! We are grateful to Chick-fil-A of Lansdale, P.F. Chang’s of Collegeville and Everything Bagel, North Wales for their steadfast support and amazing catering. With their help they’ve turned our blood drives into community events. We’re grateful to the Towamencin Mennonite Church Youth Group for volunteering at our last drive and for holding a bake sale that generated enough sales and donations for us to provide breakfast for fifty families that our in-patient on the oncology floor at Children’s Hospital of Philadelphia. If you’ve sat at the canteen after your blood donation chances are good you’ve meet one or two of the kids on the posters that adorn our collection hall. Hopefully their stories have moved you and you’ll return again and again. On December 29th we added a bone marrow drive to our blood drive via Be The Match. A simple painless swabbing of the inside of the check is all it takes for a healthy person ages 18-44 to lend their DNA to the Be The Match database. Many families in our local area have a loved one that has been part of a bone marrow transplant. Many families do NOT have a perfect match within their family. We’re grateful to the Davies Family of Sellersville for sharing their transplant experiences with us and for Rep. Bob Godshall, a stem cell recipient for lending his face to the event to help raise awareness. Seventeen people swabbed at the drive and four people took kits with them to swab at home. A total of twenty-one people were added to the registry and we have decided to hold marrow drives during all of our blood drives. Keep a lookout for marrow drive posters that will highlight our transplant families! Our next drive is February 23rd 10:00am – 8:00pm. You can register at www.RedCrossBlood.org, use the code: Peter Powerhouse. Bring your spouse, bring a friend, encourage your co-workers; be part of a community of caring, save a life!
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Peter’s days off from school look different from most Middle School students, he usually spends them traveling to and from medical visits or working on his foundation. October 12th was no different as we traveled to King of Prussia to meet Megan from the Children’s Hospital of Philadelphia’s ( CHOP) Foundation. We had lunch with her and discussed Peter’s cancer journey and his Peter Powerhouse Foundation plans. We mainly discuss the need to place CinemaVision Goggles in their MRI suites After lunch we travel to their new King of Prussia (KOP) outpatient facility. We were surprised to learn that they have oncology services there that include chemotherapy infusions. They have a MRI suite on that campus but no goggles for the kids to watch movies or listen to music during the long scanning process. We left we a plan in place to meet again via a conference call on October 25th with Megan and Katelyn from the CHOP Foundation and Christine and Parvez their Radiology Managers. We had to schedule the call around Pete’s school day and after the bus dropped him off; that was a first for everyone involved. We enjoyed good conversation and learned that there are nine MRI scanners on the main campus and one (and plans for a second) on the KOP campus. We plan to add goggles to the PET/MRI in the Buerger Center, a MRI machine on their downtown campus that would be used almost exclusively by cancer kids and the KOP facility because local cancer kids are treating there and local non-cancer kids are scanning there for other reasons too. We were surprised to learn that they have so many scanners and no goggles. When I asked Peter how he felt about that he said, “That makes me determined to work even harder to add more!” We have work to do to get quotes and equipment in place but we look forward to bringing this safety and comfort the children that that at CHOP. Peter was three-years-old when he stopped breathing during a MRI due to sedation induced respiratory failure. We don’t want anyone else to experience that. On a side-note: We were delighted to deliver breakfast to the inpatient cancer families at CHOP on October 12th and lunch today, on October 25th. As a childhood cancer family we are keenly aware of the financial hardship this diagnosis puts on these families and the stress they face just leaving their child for a few moments grab a bite to eat.
So, we’ve been working hard for a while now and it feels like you’ve been supporting us for so long. Last year we raised $97,000 and it’s time to start spending that money to support our mission statement “To improve the lives of kids with cancer and to help survivors to thrive” Well today we left the house early and headed to Nemours/AI duPont Hospital for Children. They were all set for Peter when we arrived. They shared some nice words about him and his work, then he took the podium spoke briefly about his desire to supply the hospital with two pair of CinemaVision goggles so that the kids can watch movies in the MRI scanners instead of being anxious or sedated. He signed a great big check, joined the staff and me in some photos. The photos are filled with smiles, and I have to admit that I was a little choked up watching him take the podium without me and to know that this, often difficult, journey has brought him to a place where he can do so much good for other children, but it’s the ones that I took of him when we left the atrium that speaks volumes about the character of Peter, my “Powerhouse”. Our next stop was in the office of his new spinal surgeon. Because cancer never seems to be satisfied with the initial health concerns it brings to the life of a child – Peter will undergo a spinal fusion for a scoliosis on December 6th. This is caused by disease; it’s treatment, many years with a limb length discrepancy and rapid growth from the onset of puberty. We appreciate your on going support and prayers as we enter the operating room once again. There is a chance that we’ll be able to move is O.R. date to December 20th and we’d prefer the opportunity to miss less time from school and to recover over Christmas break. We humbly thank you for the support of our journey as a family and a foundation.
Jeremiah 29:11 (NIV)11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Haley was the first child we met, and fell in love with, on our journey. She was so beautiful, and boy was she feisty! Peter took an immediate liking to her and I felt the same about her mom, Jean, see was beautiful and feisty too! Jean taught me so much in the early days about being a cancer mom. She navigated the system well and modeled for me how to be a great advocate for my child. I am eternally grateful. The kids had lots of fun together, as much fun as you can have when you’re being poisoned on a daily basis and are fighting for your life. We even got clearance from the hospital to allow them to room together, not typically possible for children of the opposite sex, but they were babies and so we bunked together for a few admissions. Haley was a great aim with a squirt bottle and much to Peter’s delight she could soak any doctor or nurse in range. The floor of our room was often wet and covered with blankets so that no one would fall. They rode the hallways in wagons, sometimes together sometimes separately, but always happily. Peter’s treatment took us to a different facility just as Haley’s treatment was winding down. Haley and her family are often on my mind but August 11th is the day that I think of her most often. Wednesday, August 11, 2004 7:17 PM CDT Peter did great today. He drank about half of the iced tea/contrast drink. My sister and I were determined that he was not going to be put through the stress of a nasal-gastric tube insertion. So we ask for an oral syringe and gave him the rest of the tea through it. Peter is a champ at taking medication via oral syringes so in no time he had finished his prep. His cat scan was uneventful and we are, as always, anxiously awaiting the results. There have been cases where the tumor shrinks as it dies and pulls out of the leg. If Peter’s tumor does that then his sciatic nerve would not be damaged during surgery next week. If his sciatic nerve is injured he may never walk. Peter’s friend Haley passed away today she was 5 years old. Her caringbridge is www.caringbridge.org/de/haley. Her family would be very blessed by your prayers for them and are very uplifted by entries in her guest book. Peter and Haley were roommates at A.I. duPont; they have the same type of tumor. Peter was scheduled for surgery in NY and Haley’s services were in DE; we were unable to attend her services. Our absence, remains for me, a difficult and painful memory. Last week we had a wonderful opportunity to celebrate the life of a young hero named Lilly. When Lilly was in kindergarten she donated her bone marrow to help save the life of her little sister Emma. We were surprised, and a little sadden to learn, that very little is done to honor these brave children that make such a significant contribution to the lives of kids with cancer. We got to work and a found a community of love for Lilly. Her surprise started when her family took a morning walk and stumbled upon a group of her friends holding a banner next to a RV. Peter shared a special message with her and the group setout, in the RV, for destinations unknown. Michael Moyer had his rig shined and ready to go, Angelica had it decorated in pink and purple and capped off her handiwork with fun favor boxes for each little lady. We arrived early at our first destination so we took a moment to let Lilly know that the Phillies love her too! The family are headed to a game with a behind the scenes peak and time before the game to watch batters swing! The first stop was at the Quakertown Justice store #1096. Alexis, the Store Manager and her District Manager, Peggi rallied the employees. They put together a fashionable back-to-school look for Lilly and gift bags for the girls. They made a great big sign just to let her know that “Justice Loves Lilly!” Then it was off to a park in Greenlane to play and chatter. Time on the swings had them laughing and hungry. They needed a ride to see Peter Chiaro! A long table and big smiles were waiting for them all; the staff at Chiaro’s Greenlane delivered pizza, fries and chicken fingers. As fast as they arrived it was now time to leave. ,Michael Moyer had something, unplanned, up his sleeve. He delivered them to Five Below and handed them cash! With Squeals of delight and enormous smiles they shopped until they dropped, then back in the RV fast! They had a reservation but they didn’t know; Pete’s Dragon was waiting for them so to the Grand Theater they did go! The balcony and snacks were theirs for the show. Michael’s brother Dean took over to deliver them home! With deep appreciation for the community we serve, we thank you Michael, Angelica, The Phillies, Team Justice, Chiaro’s Greenlane, The Grand Theater and Dean.
It’s been just one year since we shared our goal of purchasing special goggles for the cancer kids at Children’s Hospital of Philadelphia, Nemours/AI duPont Hospital for Children and Memorial Sloan-Kettering Cancer Center. The goggles allow the kids to watch movies and listen to music during their MRI scans. This will be a big gift for us, about $250,000. We’ve been hard at work and we raised the money for three of the five sets. Peter stopped breathing during a scan when he was three-years-old so we know that these goggles are necessary to provide a safe, low anxiety scan environment. He had a MRI last week and for the first time in twelve-and-a-half years of scanning was able to use a pair of goggles. His scan was ninety minutes long and he watched a comedy movie the entire time. He quickly noticed how much nicer it was to watch a movie instead of just lying in a noisy machine. We’re anxious to get these goggles in place so that all children will be able to enjoy them. He got to pick a movie from a list that needed a little updating so we returned to the hospital a few days later to gift them some new titles. We’re anxious to return with the necessary funds to add two additional sets of goggles to their facility. During our visit we shared an elevator, to the parking garage, with a special mom. Her daughter was diagnosed with Neuroblastoma the week before. We were grateful for the opportunity to bring some sunshine to little Zoe’s life with a balloon bouquet. Please keep Zoe, her family and all of the children battling cancer in your prayers. Thank you for your support!
We love feeding the inpatient cancer families at CHOP and wanted you to understand why it matters so much; you see we lived at the Ronald McDonald House in NYC for eight months. Peter was losing weight and his medical team had threatened us with a feeding tube. We were exhausted, broke and completely displaced. Oh, but no matter what was thrown at us we were determined to give all we had to Peter. The need to help him gain weight now meant that our dinner budget would take a hit each night so we could buy him Haagen-Das ice cream. Each evening Dennis and I would share a chicken potpie from KFC so that we could use the rest of the money to buy Peter some calories. Peter would get his bottle and baby food while Dennis ate half of the pie and I’d eat the other half while Dennis feed Peter ice cream.
It was hard to have enough energy to meet his needs and to be sharp enough to keep up with my new oncology education. Each day I’d wait for the meals to be served at the hospital. We know that it’s very expensive to eat in the city then add the medical bills, and the household bills and the lost time from work. Parents of cancer kids need rest and nourishment to continue to meet the needs of their very sick children. So we decided to start feeding these families when their kids are admitted to the hospital. We can’t fix the fatigue but we can feed the body, no cost to them, no need to leave that hospital floor and walk away from their child. It’s the best we can give them and we’ve never even met them. We don’t ever have to learn their names we know we’ve improved their lives. Tomorrow Peter and I will make another trip down the Schuylkill Expressway; we’ll stop at Chick-Fil-A in Lansdale and pick-up a wonderful hot meal complete with chicken, cookies, fruit and salad. Sometimes they even throw in stuffed cows for the kids. I love to go there, they give to these families from a place in their heart that is so genuine. I love to share the thanks we receive at the ER when the Ronald McDonald Family Room volunteer meets us. Last week a little boy from London was so excited that Chick-Fil-A was being delivered he couldn’t wait. One day when we were driving home, stuck in traffic, and running late because of it, the phone rang and a volunteer shared that a mother wept because her daughter had not eaten in more than two days and she wanted her mom’s lunch. Tonight we’re grateful that Rita’s in Harleysville is providing gallons of water ice for our delivery. Lucy, at Rita’s, probably doesn’t even know that chemo can cause mucositis and that those mouth sores can keep a child from swallowing their own saliva, and nothing feels better than cold on those sores, but she has a big heart and knows kids like water ice so she’ll be opening early for us. I can’t wait to hear about the blessing that tomorrow’s trip will be to some parent or child because each delivery is a blessing. We’re excited and honored to ease the burden of the next families. We also provide catered breakfasts that are delivered to the ER. To date we’ve feed nearly one thousand families. Thank you for every penny you have ever trusted us with, we taken our mission “to improve the lives of kids with cancer” very seriously. It’s been a hard week for me and for lots of people in Harleysville because we had to say “see you later” to our friend Jaxson. The green balloons on our mailbox were hanging down and looking sad so we removed them. Lots of green ribbons remain on the lampposts and mailboxes in town. They will fade but our memories won’t.
My favorite memory from working with Jaxson at the blood drive and riding the golf cart in the Harleysville parade are that he’s fun and funny. He’s not shy about speaking his mind when he wants you to give your blood or money to help cancer kids. My favorite memory from Jaxson’s funeral was that he was married twice and divorced once, I also liked when his mother-in-law stood up to talk about him. Those are just a few memories that will make me smile when he crosses my mind. I’m going to keep saying his name and I’m going to let his mom know that I miss him when he’s not at the blood drives or in the parade anymore. Instead of just feeling bad that we took the balloons down, I’m feeling glad because I placed an envelope inside that will improve the lives of other kids with cancer. I decided to sponsor a cancer-kid and their family every year at camp Sunshine in Maine. I’ve never been to camp Sunshine but Jaxson and some of my other cancer friends have. They all had fun and a much needed break at camp. There are doctors and nurses and other kids that “get it” there. I’ll be sending a check to Camp Sunshine each year. I love to improve the lives of kids with cancer and I’m proud of the support this community gives me, and my Peter Powerhouse Foundation. Someday, I’ll see you in Heaven, Jaxson but until then it’s my honor to bring joy to another child in your memory! Like so many childhood cancer families we mark time by a different clock or calendar than other families do. There’s the last picture before diagnosis, his first and presumably last Christmas, the only birthday party we thought we’d have. The first time he coded, the day he walked without a walker, the second time he coded, the day he had his leg lengthened, the day he walked without his walker round 2, So now we’re acknowledging (certainly not celebrating) that today is the three year anniversary of Peter’s leg amputation, which will be followed, of course, with the day he walked without his walker round 3. I could go on-and-on. But so could all of the other cancer families we know. Tonight we’re heading to the fair. Three years ago the Harleysville Jaycees, the Lions Club and a host of lovely people in our town treated Peter to the fair of his dreams, he rode and ate and played those wallet-emptying games that all fairs have. He stayed out late and he laughed like there was no tomorrow, he wished there was no tomorrow and I feared it too. We left early in the morning for the hospital, he was fasting and so were we. When they came to take him to the OR our hearts sank. He said, no I don’t want to go and our tears started. As is our usual routine I entered the OR with him, we paused in the hallway so I could mask and I was unable to tie it. The nurse had to do it for me because I was shaking. Peter asked me if my mask tasted like cotton candy and I said no. He said I was lucky because if it did I would fall asleep and when I woke up my leg would be gone. We entered the OR and he transferred onto the table. The anesthesia team placed his mask and he started taking deep breaths. He looked up at me and said I’m going to fall asleep now and when I do they’re going to cut my leg off, what will ever become of me? I told him that his friend Gary was going to make him the best prosthetic leg ever, that everyone loved him and was rooting for him, and that his life was going to be amazing! The anesthesiologist said, “he’s mine now mom and I turned to leave the room. At the foot of the table stood his wonderful surgeon with outstretched arms. I wept harder than the first time he coded and unable to see I was lead from the room; I was taken back to the pre-op waiting area where Dennis and my sister sat, sobbing. When we were able to collect ourselves we left for the next waiting area, a few hours later the surgeon briefed us on the path taken during surgery and what to expected when we were reunited; I so appreciate a doctor that loves my child so much that he delivers his briefing with tears streaming down his face. The time in the PACU was a torture for Peter to endure and for us to watch. He amazed us with his strength and bravery in the days that would lie ahead. He earned his nickname, “Peter Powerhouse” over and over. A year later he founded the non-profit that bares his name and he has spent everyday since answering his own question, what will ever become of me? His days are harder than most other kids for sure, but he spends them improving the lives of other children. He hosts blood drives, delivers meals, wagons, shirts and encouragement. He speaks at schools, churches and the meetings of businessmen. He has written a book and his journey has been documented in the newspaper, magazines, online articles, news stories and books. He hosts fundraising events and others host them on his behalf. This year he will deliver $250K worth of specialized goggles to area hospitals to make MRI scans safer and easier for kids with cancer. He’s adding balloons for inpatient cancer kids and medical research to his list. Tomorrow we journey back to the same hospital for a wheelchair fitting and the lengthening of his prosthetic leg. On Friday his school is hosting a walk that will benefit his foundation and Saturday he will take part in the community parade. But tonight he’s just a teenage boy like all the rest that will be at the Harleysville Fair. I think it’s fair to say that his life is truly amazing. I’m proud of you, Peter Powerhouse! Happy, third tumor-free, anniversary ! Life is 10% what happens to you and 90% how you react to it.
Charles R. Swindoll When we started The Peter Powerhouse Foundation we identified our mission: “To improve the lives of kids with cancer” by making gifts to the facilities that treat them, at that time we hadn’t considered that our schools are a facility that play a big role in the care and treatment of cancer kids. We are humbled by the amount of funds that our school teachers and support staff send to PPHF on a regular basis!
We were honored when teachers at Oak Ridge Elementary School, Harleysville contacted us for help meeting some comfort and safety issues for one of their own “Powerhouse” students. They made a simple request for some beanbag style furniture so their student would we safe and comfortable in the classroom. The amazing fourth-grader in need was familiar to us; Jaxson has been working on our blood drive campaign for the past year. He’s been battling brain cancer for most of his life and the advancing disease was making the classroom a challenge for him. We listened to their request, considered future needs of Jaxson and his classmates and the next morning delivered a variety of Yogibo pieces, in blue and (his favorite) green. His needs in three areas of the school were considered and teachers and classmates were thrilled to find him, safely, back on the carpet for morning meeting. We are grateful for the opportunity to support Jaxson! If you’d like to show your support for Jaxson and his family please join us in painting the town green. Please place a GREEN, ribbon, bow or balloons on your mailbox, trees or lampposts. Take a photo and post it on our Facebook page with the comment “We stand with Jaxson” and #gogreenforjaxson. We appreciate the financial support that our community has entrusted us with. We’re the Peter Powerhouse Foundation and we’re uniquely qualified to improve the lives of kids with cancer. |