Amazing Grace Pediatric Cancer Fundraiser

For any one that doesn't know me I am a proud mother and grandmother. My beautiful daughter Stephanie is an exceptional mother to her 3 children, George, Grace and Scotty. You can imagine how our world was turned upside down when my sweet 8 year old granddaughter Grace was diagnosed with Acute Lymphoblastic Leukemia (ALL) in October of 2022. Grace has always been full of spunk and energy, ready to perform a song and dance at the drop of a hat. Her parents noticed her being extra tired and just not her usual self for weeks prior to her diagnosis. Assuming it was lyme disease or mono, she was brought in for blood work. What parent assumes Leukemia? Hours later they got a call saying her hemoglobin was so low they didn’t know how she was awake and she needed to be rushed to Boston Childrens Hospital immediately. Little did they know their life would change days later after hundreds of blood tests were run and leukemia was confirmed after a bone marrow biopsy. Hearing Stephanie tell me these words over the phone in tears destroyed me, and to this day I still can't imagine a mother's pain hearing her child has cancer.

What they thought would be a few days in the hospital turned into 50 days. Children with Acute Lymphoblastic Leukemia (ALL) have chemo for two years. TWO full years of chemo! Grace has had to be inpatient at Boston Children's Hospital multiple times for a very intense high risk chemo regimen. She has spent around 100 days inpatient at Boston Children's already. The rest of her chemo takes place at the Jimmy Fund which is inside Dana Farber Cancer Institute in Boston.

Grace is almost 10 months into her cancer journey, but this is just the beginning. This journey will last a lifetime for Grace and all children with pediatric cancer. Grace has a rare genetic mutation that puts her in a very high risk category and she has greater risk for relapse requiring monitoring for the rest of her life. Their family and all families with children diagnosed with cancer will forever worry at every sniffle, fever or sign of exhaustion. Is she relapsing or does she just have a normal sickness? She will forever have to go to the Jimmy Fund and have blood work to make sure she does not get any secondary cancers from the chemo she is receiving now. The consent form to start treatment states that this treatment can cause secondary cancers, blood clots, brain damage, kidney failure, and death. All of this, along with a list of many other devastating side effects most people do not know about when it comes to chemo for pediatric patients. When I heard this, all I could think was, Isn’t there anything better than this for children? This is the only solution to the disease? How can a child endure all of these things? How can we change this?

My family and I want to help raise funds not just for Grace to enjoy any adventure she sets her mind to, but to help fund specific charities that are near and dear to their family's hearts. Grace is an avid crafter and loves when they have special visitors at the Jimmy Fund. The organization behind this travels from hospital to hospital crafting with children to pass the hours upon hours families spend at the clinic and hospital. Grace has also had the opportunity to make movies, books and do science experiments and arts and crafts when in the hospital, all made possible by donations. Although these activities do not clinically save lives, we have seen the life-saving impact of these opportunities to our Grace's ability to continue being a kid in this fight for her life.

Grace and her family hope to create a fundraiser of their own in the near future, “Amazing Grace Pediatric Cancer Fund” to help other families during their time of need, along with financial support to increase research for pediatric cancer. In order to make an impact and try to slow the rise of childhood cancers or mitigate their effect, we have to help fund research. ONLY 4% of funding spent on cancer research and treatments annually are used toward treating childhood cancer. This is significant because less than 10 drugs have been developed to fight childhood cancer since the 1980s. Since childhood cancer research receives little funding, personal fundraising is critical to advancements in the field; as these current chemo drugs have detrimental effects later on in life for these children.

The only way to make change is to be the change. Together with our family we can create awareness for pediatric cancer. Together we can raise money for safer treatments and hope to help decrease the number of children dying from cancer.

Thank you to everyone who has shown them love and kindness through this journey. We appreciate each and everyone of you. We are truly grateful for any funds that are raised for our Amazing Grace and the advancement of pediatric cancer research.

Debbie