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

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