Redskins Training Camp 2017
What a fun day at Redskins Training Camp! Hero families were given special access during the morning and afternoon sessions. We were happy to be able to provide this opportunity for so many families. The players took the time to come over to our VIP tent for autographs and words of encouragement. It is through your support that we can arrange fun outings for our families. We assist them with any special accommodations and are mindful of their limitations when in treatment. Next up is a night with the Flying Squirrels.
Local Heroes For Research #1
Jamie Hess was an inspiration to all who met him. Although he left this world in 2002 at the age of 10, a year after being diagnosed with leukemia and after enduring two bone marrow transplants, his legacy lives on thanks to the powerful love of his family who created a research fund in his name. Burger Bach presented Connor's Heroes with $1,536. The Ashland Barracudas raised more than $5,000 from their annual swim-a-thon. These donations will go to the Jamie Hess BMT fund. Pictured with Lisa is Jamie's father, Fred, and Burger Bach's manager, Timothy, who was Jamie's friend. Donations like these are more than dollars. They are hope for discoveries to improve treatment and prevent cancers like Jamie's.
Caleb’s Room
From the facebook page, TeamCaleb, Caleb's mom shared the moment when Caleb saw his room decorated by the volunteers at Connor's Heroes:
"As soon as we entered the unit we were greeted with smiles and cheer, "Krysta, I think your little guy is here! Are you Caleb?" The girl walked us right to our room to find our nurse, Krysta, and the room beautifully decorated for Caleb in a firefighter theme!! Thank you, Connor's Heroes Foundation!! ... With the firefighter toys/tools... and the fire truck tent, he was completely at ease! He was strutting the halls in his cowboy boots and fire hat, using his crowbar and his axe to open doors, his megaphone and radio to talk to everyone." -- Caleb's mom
Four volunteers decorated Caleb's room: Monica, Beth, Theresa and Kourtney. One of them has a daughter, Krysta who is a nurse on BMT and happened to admit Caleb when he arrived on the unit. The room decorator, Monica, said, "My friends and I had such a wonderful time decorating Caleb’s room. Sending lots of hugs and prayers for this sweet little one! Thank you so much for the opportunity to do this!"
Decorating the rooms of our bone marrow heroes is a big part of Connor's Heroes mission, but it is not all you allow us to do for our Hero families. From the Heroes Bags and Backpacks to gift cards for traveling out of town for second opinions/trials. Now, every child opens up their Heroes Backpack and finds their own iPad mini. We are constantly evolving and growing but remain focused on the kids. Thank you for playing your own role of being a hero to a child with cancer.
Sharing Good News
Thanks to Board Member, Jeff Brownstein, for showing us this article in the local publication, The Reflector. We appreciate it when someone shares the stories of Richmond's local heroes who are doing good on behalf of our childhood cancer heroes; especially when it's kids helping kids.
2017 Music For Massey
Our Hero, Lauren, was part of the Bucket Brigade at Music For Massey in July. She had close to $100 in cash in her bucket. Thanks to Jim Napier and Music for Massey for their many years of supporting our pediatric cancer research in Richmond. CHF is dedicated to helping our community's families cope with childhood cancer and our community's researchers to conquer it. This year's event raised over $25,000 for the Connor's Heroes Pediatric Cancer Research Fund -- over $200,000 raised since Music for Massey started 11 years ago!
Art Pop Up
Twenty local artists painted large-sized zebra fish in a competition for a spot in this year's RVA Street Art Fest on September 22-24. The zebra fish is the symbol of pediatric cancer research happening in Richmond. You can bid on one of these unique works of art when we open up our online auction on September 1. Proceeds from your winning bid will go directly into the Connor's Heroes Pediatric Cancer Research Fund. The federal government only spends 4% of its budget to fund pediatric cancer research. That percentage has not risen in many years. Dr. Corey relies on contributions from individuals and businesses to fund his research.
Pic cred: Backlight Photography
Summer Donations
Our office was busy with visitors bringing gifts collected for children battling cancer. This fairy brought a check for Connor's Heroes generously donated by RVA Insurance Agency, Inc. It's enough to make sure that four newly diagnosed children will have a Heroes Backpack ready for them -- full of crafts, personal supplies and an ipad!! These two boys unloaded an SUV full of toys, crafts, coloring books and lots and lots of legos. Campers from Shady Grove United Methodist Church- Mechanicsville collected them for their service project. Richmond is showing incredible support this summer.
If you would like to offer your help, contact us first for suggestions on the type of help our families need the most. Use our Contact Page to share your information.
Here’s Erin
Erin was genuinely touched by the recent Facebook post from Team Caleb, the page created by Caleb's parents to keep their friends and family informed of his progress in treating his neuroblastoma. (He is only four years old.) It was a picture of Erin standing in the door of Caleb's hospital room with a hopeful, welcoming smile. She has a bright red, star-shaped balloon and is holding a Connor's Heroes gift bag. In the bag are sweet surprises, toys, gift cards and encouraging notes that were generously donated by people like you. She was celebrating Caleb reaching an important milestone in his treatment: Day Zero of his stem cell transplant. Caleb was one of many children whom Erin visited in the hospital and clinic that day. Erin navigates each family’s individual and, oftentimes, sensitive situations with respect and encouragement. Behind the scenes, she coordinates the volunteers who decorate the hospital rooms of the bone marrow transplant unit and trains people to be buddies for our patients or their siblings. She works with Lisa and other childhood cancer parents in determining the best ways for Connor's Heroes to fill in the gaps for families struggling financially and emotionally.
Erin says that it is her privilege to share the generosity of our donors who allow her to support the families. She said that the parents and children are appreciative and need our care, concern, and assistance of any kind. In her unassuming way, she encourages a family through the ups and downs of treatment and she is empathetic to what they deal with. Obviously families appreciate her, as one commented on the Facebook post: "She always comes at the right time ❤️." We are grateful every single day to have Erin as part of our Connor's Heroes family.
How Is Rach?
The cancer community is hopeful about the FDA endorsing a first-of-its-kind cancer treatment that uses patients' revved-up immune cells to fight the disease. What is most exciting is that it was trial tested with pediatric cancer patients. CAR T-cell therapy is achieving miraculous results for families who were facing no more treatment options and the unfaceable. Connor's Heroes knows at least two of our heroes who were part of this historic trial. Anna and Rachel were both diagnosed with leukemia in 2008 and then coincidentally, both relasped. They agreed to be a part of the trial. Now, at 20 years old, they are living the life that they thought would be taken away from them. Rachel and her mom shared the experience on their facebook page, "How is Rach." Below are excerpts of the trial treatment posted by Rachel and her mom, Kathy:
How is Rach - October 25, 2016
Two weeks ago, we became aware that the leukemia cells are back. Many of us watch Rachel in awe at her ability to come back no matter how the disease has tried to bring her down. Please do not fret or fear for her future as she does not. Bring her your prayers and positive thoughts as she is enrolled in a trial CAR-T immunotherapy study at Children’s Hospital of Philadelphia (CHOP). It uses cutting edge technology harvesting one’s own T-cells to beat the cancer cells. We are in Philadelphia now beginning the process. You will want to hear more about this advanced therapy journey and Rachel is just the person to bring strength, dignity, and humor to her story about it. -- Love, Kathy
How is Rach - December 7, 2016
Third time is a charm. The journey is on...back in Philly.
Late October, we mentioned being at CHOP for the Immunotherapy Trial T-cell collection. Although that was a very tough week for Rachel being admitted the entire time for headaches and fever, the collection went well. The following weeks included more plain-Jane chemo at VCU with normal chemo side effects of nausea, steroid cheeks and lots of fatigue. As of Monday, we are back in Philadelphia for the full 6-week trial. The first 4 days involve more chemo to make room for the working T- cells. Today she is experiencing the same chemo side effects. Tomorrow there will be a spinal tap and bone marrow aspirate. The good news is; as of now, the procedures are all outpatient-YAY! The actual cell infusion will happen on Tuesday and Wednesday of next week. The entire team here is so encouraging and we are all feeling VERY hopeful and excited about the possibilities of permanent remission. Besides praying that the therapy destroys the Cancer forever, we ask you all to pray that the greatest possible side effect of the therapy- CRS (Cytokine Release Syndrome) remains manageable. Xoxoxo, Kathy and Rach
How is Rach - December 17, 2016
CAR-T Therapy Week Two
The week started a bit bleak with Rachel recovering from week one chemo feeling pretty crummy, especially an excruciating headache; as well as, some dark cold weather. Tuesday morning was the first T- cell infusion. It was anticlimactic as it was one syringe and took only a few minutes. By Wednesday there were no adverse effects and Rachel was starting to feel much better, so another syringe with 3 times the number of supercells was infused. Thursday and Friday's clinic visits involved only bloodwork and quick check ups. All numbers were good and no fever. As always, we are grateful for all of your positive attention and prayers (they are felt). We have loved getting the photo cards, notes, and sirsees. - Love, Kathy and Rach
How is Rach - January 21, 2017
Yesterday, we had our final meeting at CHOP to conclude the immunotherapy infusion process. The past 6 weeks have gone better than we could have ever imagined. My reaction, or lack thereof, to the CART- T cells was so minor that we were able explore Philadelphia and share our home away from home with family and friends. Going forward, I will return to our home clinic at MCV for monthly checkups and a drug infusion called IVIG (used to replace healthy antibodies), as well as quarterly visits to CHOP for spinal taps and bone marrow aspirates. They will keep a close eye on my results for the first year and make sure the T cells are still hanging around. We are hopeful of a forever remission.
Over the past 10 years, cancer has affected my life in many ways. I have learned that my greatest pet peeve is shedding hair, that steroids cause uncontrollable puffy cheeks (not to mention crazy mood swings), and that sedation drugs and pain medicines make me say ridiculous things (especially to any cute doctors in the vicinity). Also, I have been made aware of the many children that aren't as lucky as I am. Those whose illnesses or disabilities will persist for the rest of their lives and others whose journeys ended way too soon, that will be remembered as fighters. But through all of this I can't help but focus on all the good!
I have witnessed many incredible medical advances over the last decade in the field of pediatric hematology oncology, which provides such great hope for a cure in the future. I've met some of the most genuine and loving nurses, doctors, child-life specialists, and volunteers that make me believe in the power of kindness in this world. Cancer has revealed that phases in life are temporary, negative and positive, and we must learn to treasure them as they come and go. Most importantly, I have learned first-hand the power of a community (even from a distance). The love and support that all of you have shown our family and loved ones through prayer, positive thoughts, and acts of service is truly astonishing. We have felt it so strongly and are so grateful to be surrounded by so many uplifting souls.
So, as I continue to hope and pray that this part of my life can finally be put to rest as third time being the charm, I want to personally say thank you! Thank you for taking this journey with me. And thank you for sharing so much LOVE!
Of course, a special thank you is necessary to all my extended family, my best friends, my caring and protective brothers, and my loving parents. And especially my mom, who brings so much positive energy to this life we live.
Much love, Rach
Rachel, Anna, and their families put themselves on the frontline in the battle against childhood cancer. Thousands of children will benefit as researchers continue to use this treatment. Remember, local families have an advocate for trials, research, and better treatments to happen in Richmond. Thanks to the community's support of the Connor's Heroes Pedatric Cancer Research Fund, Richmond finally has a leading pediatric oncologist, Dr. Seth Corey. He and his team of researchers are looking to make their own discoveries in pediatric cancer research - and specifically high-risk leukemia. Learn more about Dr. Corey and his dream to establish Richmond's reputation in the research community.
Support our efforts to not only help childhood cancer families with emotional and financial support, but to also offer hope by funding research conducted in Richmond. Make your gift in honor of your hero.
Heroes Art For Sale
Everyone likes to receive a gift that is unique. What could be more unique than colorful, cheerful art created by the bravest people we know: the childhood cancer heroes from the 2017 Heroes Art Ball. Each one is perfect to welcome a friend to a new home, to thank your bridesmaids or to congratulate new parents. You can sense the smiles and hope of the young artists who were healthy enough to be at our Heroes Art Sessions where they playfully painted the designs. Your purchase is donated back to Connor's Heroes. You will allow us to help more children with cancer in Central Virginia.
Our Heroes Art Gifts are notecards, notepads, mousepads, and coasters. To purchase Heroes Art gifts, use our secure shopping site.
You can purchase a poster of our most popular Heroes Art paintings. The posters are sized 16 X 20." To purchase Heroes Art posters, make your selection here.
We are happy to ship your items directly to you (or your recipient). You are welcome to come by office and pick them up at a designated time.
Pic cred: Backlight Photography