Today’s Helping Heroes: Shelly and Kendall
At only five months old, Skylar was the youngest patient in the Bone Marrow Transplant Unit. BMT is not a pediatric floor designed specifically for children and families. A BMT room is a typical hospital room until Connor's Heroes arrives! For Skylar's admission, our amazing volunteers decorated her room to make it more playful and more like home. We gave her parents a Connor's Heroes tote bag (with items like a thermometer and warm socks) and Skylar a backpack with all sorts of goodies to make her smile! Special thanks to Shelly Jones, aunt of our Hero Maya, and Kendall Burgess, sidekick to our Hero Mia. Skylar's room was their first time decorating a room on the BMT unit. Didn't they do a great job?
Today’s Helping Heroes: Capital One
Members of the Leadership Development Program at Capital One volunteered in our office. Waiting for them were two rooms full of toys, crafts, toiletries, and games donated by YOU! Each Heroes Backpack is individually stuffed with love for a boy or girl and an age group (teenager, infant, toddler). The volunteers had the fun task of picking out the items that they felt would best help that child at that age. It's another example of the personalized care that you allow Connor's Heroes to give each family.
Circle of Heroes Launch
Two very special guests helped launch our newest initiative, the Circle of Heroes! Karen shared her daughter Aaliyah's story on how childhood cancer has turned their family's life upside down. She shared that Connor's Heroes was there to lend a helping hand. Elias Neujahr, CEO of the Children's Hospital of Richmond, spoke about the exciting things happening at CHoR that will continue to put families first. We are so grateful for all who joined the Circle of Heroes and became founding members of this generous, dedicated group. And a big shout out to Kaplan Voekler for hosting such an inspiring evening!
Interested in joining our Circle of Heroes? Contact Celia at celia@connorsheroes.org or visit our giving site.
Today’s Helping Heroes: Joe, Justin, Rudy and the Heroes Run
This year was the final run of the Heroes Run. The Heroes Run is a motorcycle rally, bike show, family-friendly party and fundraiser. The main event is the raffle of a custom built motorcycle. This year's bike is a 1973 Harley Davidson shovelhead chopper built by Robbie Clarke. The founders of the Heroes Run (pictured left to right), Joe, Rudy and Justin donate the proceeds from the ride and rally to Connor's Heroes.
1) Why did you start the Heroes Run?
My good friend Justin and I were spending many nights in his garage building my first chopper. We've both been blessed with good lives and the ability to take care of ourselves and our family. We felt that we had a strong urge to give back to people who were less fortunate than us. After we discussed recipients of our charitable work, it was an easy decision to focus on children. I reached out to a few people and Connor's Heroes quickly came to the top of charities who we wanted to work with. Once I got on the phone with Lisa Goodwin, it was a no-brainer. She welcomed us with open arms. I believed in her cause and appreciated her attitude towards us; a couple of motorcycle dudes who didn't know what they were doing but wanted to give back. Five years later and we’re hoping to wrap up our adventure with Connor's Heroes with close to $50K of charitable donations. We'll need everyone coming out this year to help us get to that goal!
2) Thinking back over the past Heroes Run, what was your most memorable moment?
There are many memorable moments, but I think the biggest moment and best moment for me, was the 2nd Heroes Run when we gave away the first chopper. Justin worked his face off getting that bike ready. I'm so proud to call him a friend. I don't know many people who would put in the work that he did to get that bike done. It started off as a basket case of parts, engine completely disassembled, and we scrounged up missing parts. We had no clue what we signed up to do. We formed new relationships with vendors who had no idea who we were, but they gave us parts for free because they believed in our cause. It was all so inspiring. But what made it the most memorable Heroes Run was that moment when we announced the winner. I'll never forget the excitement of Mark from Charlottesville yelling loudly that he was the winner. Even better was the crowd's cheer shortly after as everyone was super excited for him winning. Through that chopper, we all combined as a group and I felt like we all collectively worked together to raise money for children who really needed every penny more than any of us could ever imagine. It was the ultimate in inspiration.
3) Name a hero in your life and why.
I have many people in my life that I have looked up to and do look up to. I can't just name one hero. But in regards to what we do with Heroes Run, every single child that is affected by cancer is my hero. I cannot imagine what they're going through and I am very proud to help them out in any capacity we can. The strength they show me each time I meet them is humbling.
Focus on Helping Heroes - Patrick’s mom, Mary
Mary is the mom of a teenage son who doctors diagnosed in February 2017. She said the hardest part of being a parent to a child battling cancer is seeing her sweet son suffer from illness and pain. The family is discovering that there are “helping heroes” in unexpected places who offer their support, compassion and kindness.
What does a day in the clinic and/or a day of inpatient look like?
We spent over 50 nights in the hospital for this first year. At clinic, everyone is kind. There are days where steroids make patients moody and when kids are very sick or nauseous. The whole building is full of staff who understand and are patient.
Are there any particular ways Connor's Heroes helped support you and your family with any of the above struggles?
They are researching for cures. We receive gifts like grocery and gas cards. They have lunch in clinic and the hospital. Erin gives us support over the phone. We enjoy the art sessions.
Focus on Your Family - Tariq’s mom, Samia
No parent expects to go to the doctor and hear the words, “Your child has cancer.” One to two children are diagnosed with childhood cancer every week in Central Virginia. Doctors diagnosed Samia’s son in May 2017. She counts 420 total days in the ER, inpatient or clinic visits. Think about that. More than a year of her son’s life. He’s only six years old. “It’s as if we were in a pressure cooker and are just now emerging. We are intensely closer now, but much of what we lived through will cause lifelong anxiety.” The one word she used to describe cancer was “Trauma.”
What is the hardest part of the cancer journey as a parent?
Everything changed in an instant. One day you're planning summer camps for your children. Then the next day, you're finding a place for one child to stay the night so you can stay in the hospital. You come face to face with the reality that there is no amount of money, effort or love that you can provide for your child to deflect his pain and fears.
What does a day in the clinic and/or a day of inpatient look like?
There are fears of catching a virus walking in the parking lot, through the elevators and hallway. There is downtime as you wait on doctors, staff, lab and pharmacy orders. Three-minute outpatient chemo treatment is typically a three-hour visit. By the time you get home, you and your child are spent, hungry and just looking for some TLC. I have to remind myself to loosen my shoulder and unclench my jaw as I’m often unknowingly tense from the day.
Are there any particular ways Connor's Heroes helped support you and your family with any of the above struggles?
Connor’s Heroes has been amazing. I still use the backpack they gave me a year ago. They filled it with amazing and useful items. The gift cards covered food and travel expenses. My son found the art sessions to be very therapeutic. They gave my other son opportunities that kept him busy and safe.
What is the #1 thing cancer has taken away from your hero's future?
Nothing. I refuse to believe that my son’s future is any less bright from before. He can do anything.
Focus on your blessings - Arianna’s mom, Ashely
Doctors diagnosed Arianna with T-cell Lymphoblastic Lymphoma in September 2017. Her mom Ashely estimates that the family had six visits to the ER, ten inpatient stays averaging seven days, with 50-60 clinic visits and counting. “Terrifying” is the first word she used to describe cancer. Through it all, Ashely finds the silver lining to give her strength and hope.
What is the #1 thing cancer has taken away from your hero's childhood?
In some way, cancer took away Arianna's innocence. She was forced to deal with her illness and all the bad that comes with it. That was a heavy load for a 7-year-old to carry. We don't know what the future holds, but we are confident it will be bright for Arianna!
How has cancer changed your family?
The hardest part as a parent has been dealing with our own emotions while also helping the girls with their feelings. Our family is so much stronger since Arianna's diagnosis. We've had to lean on one another for strength and encouragement. Our togetherness is one of the brightest moments of this journey.
If you could change one thing about your journey, what would it be?
I wouldn't change a thing! We have been blessed to receive care at a phenomenal hospital (VCU) with a wonderful staff. The support from the community through various organizations makes the journey a lot easier!
Are there any particular ways Connor's Heroes helped support you and your family with any of the above struggles?
Connor's Heroes has been consistent support for our family and many other families. We often see them in clinic and in the hospital offering their support however they can.
Focus on Your Emotions - Graeme’s mom, Kelly
Graeme is the oldest son; a big brother to Macklin and baby Connolly. Kelly and Ross have their hands full with three boys under the age of five. Kelly shares how she juggles the adversity of Graeme’s cancer with the joy of raising three adorable sons. Like so many parents of a child with cancer, the one word she used to describe the disease is “Fear.”
What do you hate most about cancer?
The fear of losing him. The fear of relapse. There are so many long-term side effects: Treatment likely will take years off of his life. He may not be able to have children. He may have learning disabilities, heart complications, liver dysfunction or get a secondary cancer due to the chemo.
How has cancer changed your family?
We were healthy pre-cancer, but now we are much closer to a non-toxic lifestyle. We steer clear of germs, sugar, processed food, plastic and anything that may be cancer-causing. I miss our precancer days for the calm I used to feel.
How has cancer impacted your family financially?
We would have lost everything (house, cars, etc.) if we didn't have the support of Connor’s Heroes, friends and families. The gift cards help us get up and down the road. We travel thousands of miles for clinic and hospital.
What does a day in clinic and/or a day inpatient look like?
A constant revolving door of people. Graeme is often shy on these days. It's exhausting. We pretend that we aren't terrified. We laugh and joke and try to make it fun, but internally, we're freaking out.
Focus on Your Children - Matthew’s Mom, Heather
Matthew is an 8-year-old boy who will dive into a good book like the Goosebumps series and speed around the neighborhood on his bike. In June, doctors diagnosed him with a brain tumor. Heather, Matthew’s mom, tells how her other two children, Zoey and Nathan, deal with their brother’s illness as the family focuses on Matthew. When asked to describe cancer with one word, she chose “Fight.”
What is the hardest part of the cancer journey as a parent?
Seeing the fear in my son and his siblings when we discussed what cancer can do! There is the constant fear of knowing I could lose my son. His siblings miss him and me so much while we are away from home! It is hard for them to understand he is fighting a disease since he doesn't look sick.
How has cancer changed your family?
Cancer has given us a new outlook. At any moment cancer can change your whole life and take someone you love. We have learned to live every day to the fullest, always pray and have faith! We are praying it won’t take anything from his future, but once he was diagnosed with cancer we still fear that it will come back! We will fight with everything we have to give him the best future he can have!
Are there any particular ways Connor's Heroes helped support you and your family with any of the above struggles?
Connor’s Heroes have been amazing from the start! They gave my son his backpack after his brain surgery. He was grateful for the items inside! I was impressed by the love and thought put into the bag! Erin not only reached out to me to chat and be a source of comfort and support but personally delivered a Visa gift card to help with the financial burden!! We have not been able to attend any events, but we are looking forward to going soon and meeting other families fighting the same battle!
August 2018 Art Session
We had a small, but spirited art session. Tay and Savanna painted small canvas blocks with their favorite creatures of the ocean. Our volunteer artists will piece them together in a large-scale collage for someone special. Stay tuned to see the final art piece and the lucky person who will receive it.