Amelie’s Pineoblastoma Story
Cancer can cause people to have their mindset and values flip because it is such a life changing experience. Finding new ways to bring joy to your life, learning to get help, and loving every second that you have. Amy, mother of Amelie who has Pineoblastoma, opened up about their pineoblastoma story, and what she does to stay positive as she fights this cancer along side her daughter. “Gratefulness. Every night I fall asleep and every morning I wake up THANKING GOD out loud. Save for our daughter’s suffering, this cancer journey has been, in many ways, a blessing. It has revealed our truest, most meaningful relationships. It has shown us what true love and loyalty is, and how the support of friends, family, neighbors, even strangers, can deeply affect one’s life during times of crisis. I am so unbelievably grateful for every minute with my daughter, and for the support we have been lucky enough to receive, that I cannot and will not ever stop expressing it. Gratitude overwhelms almost anything else that cancer has destroyed. Amelie’s Smile. When she smiles, my whole world stops and my heart begins to swell with an intense love I never knew existed. If my 5-year-old can smile during this hell, I follow her lead and smile too. Taking Breaks. We need to take frequent breaks. Some people do not understand this, but watching your child suffer all day every day takes a heavy toll, and we constantly need time away (and alone) for active recovery and rest in order to rejuvenate and prepare us for the next battle. Yoga, exercise, paddle boarding, a walk on the beach, or even just driving with the music on, anything. Anything to cleanse and recharge. Otherwise, cancer tends to invade and infect every aspect of our existence. Friends and Family. Being around people who love us unconditionally, that is the best medicine in the whole world. Faith. The only thing that has gotten me through hours of horror helplessly watching as my darling girl violently vomits and screams in pain and fear, is knowing God’s love. Crying out to God in times of crisis is profoundly powerful. Flavor. I love all things delicious. and making time to eat at least one fabulous meal a week, truly warms the soul (especially when you’re forced to eat drive-through and hospital food most of the time),” she shared.
So, who is Amelie? Many people see cancer patients as just that, a cancer patient. We wanted to know who Amelie was, so, Amy shared a little bit about her daughter, “Before cancer, Amelie was once an exuberant, courageous, determined little girl who loved people, running, and anything in the water. She laughed passionately and hugged hard. She would hold me so tight and kiss me so intensely, I would have to pry her from my arms with all my strength. She was just so beautifully expressive. Amelie and her younger brother, Bravery Jon Thomas, are only 18 months apart and, before cancer, were the best of friends. After cancer treatment, Amelie does not have the same exuberance, but her adorable sweetness of spirit will melt anyone’s heart. Amelie LOVES people–friends, family, anyone who comes to visit her. Her love of princesses and Little Red Riding Hood are her favorite topics, and rarely tires of talking about the ‘Big Bad Wolf.’ She gets tired very quickly and is very limited in what she can do now, but loves to tease and laugh. Amelie’s got a funny obsession with food that begins with ‘P’: pasta, pizza, peas, and, her absolute favorite, Pirate’s Booty. Playing ‘hide and seek’ might be her most favorite activity on the planet. She never tires of hiding, and when we go looking for her, we just follow the sweet sounds of her laughter. Her personality, although dramatically different after her diagnosis, is still so uniquely quirky, silly and playful, empathetic and kind to others, and deeply, deeply loving. Sensitive and tender, Amelie is truly one of a kind.”
With such a sweet little girl battling pineoblastoma, we asked Amy is she could share a little bit of their pineoblastoma story and fight. Amy opened up stating, “Amelie’s journey with Pineoblastoma brain cancer has been a harrowing long year for her, plagued with multiple surgeries and intense procedures. She’s had 8 different surgeries, including a tumor resection/biopsy, inserting a port in her chest, a shunt inserted into her brain that runs down to her belly, then taken out due to severe infection that landed her in the PICU, then another shunt, then radiation, where she was sedated 5 days a week for 6 straight weeks, G-Tube surgery, and 6 months of intense chemotherapy. She lost her hair, her will to eat, energy, her ability to walk and play, some of her hearing, her strength, her balance, her liveliness, and, many days, her smile. Every surgery has knocked her down. She simply does not grasp the severity and necessity of all these procedures and medication, despite our best efforts to explain what is happening to her. As if life-threatening brain cancer isn’t enough, Amelie has 22Q Deletion Syndrome. She was born with a micro-deletion of her 22q11.2 Chromosome. She has special needs and cancer has delayed her (already delayed) development and caused a massive amount of psychological trauma to a once thriving, healthy, wildly energetic little girl. What cancer has NOT taken from her: Amelie’s fiery spirit. Her initials are AFI, for ‘a fire inside’ b/c when she was born, her daddy instantly saw something unique and spectacular–a spark so small that burned brightly, like a candle in a dark night. And that light still burns brightly, despite all the trauma, confusion and pain she has suffered.”
With all of the hardships and battles that Amy and her family have been fighting with Amelie against this cancer, they have found support which keeps them going and fighting. Amy shared, “Words simply cannot adequately describe how vital GiveForward has to been Amelie and our family. The support we have received from GiveForward has been LIFE CHANGING. We are a one-income family and live on a very modest budget. GiveForward has given us FREEDOM. GiveForward has given us room to breath when we would otherwise be suffocating from the stress of financial and emotional strain. We have been able to take last minute trips (the few times she’s been well enough to travel), take her out to eat (the few times she’s been hungry enough to go out), and whenever she wants a new toy, we do not have to stress about the cost. It has afforded us the ability to fly family in from out of town to brighten her spirits during her hospital stays, or take our 3yr old son to Toys-R-Us, SeaWorld, Legoland, or the Zoo as often as he wants, in order to distract him from the intense suffering of his big sister and the acute loss of their close friendship. GiveFoward has given us the ability to help finance a desperately needed new car and make necessary repairs to our other car. GiveFoward has taken an immense BURDEN OFF of our overwhelmed shoulders in so many ways, like trips to Starbucks when we’re low on energy, desperately needing caffeine after a 6 hour hospital day, or the ability to buy high quality, organic produce/groceries in order to fuel Amelie’s tiny body with the healthiest nutrition. GiveForward has given us HOPE. Amelie’s cancer could very likely regrow–it is aggressive and so rare that there simply is not enough data out there to give us concrete answers–we pray that it doesn’t, but if it does, we are looking at experimental treatments that may or may not be covered by medical insurance and could cost hundreds of thousands of dollars. Lastly, GiveForward has given us a PLATFORM in which to update all the people who love Amelie and pray for her recovery and healing. We want to create an Army of Amelie’s Angels who pray for this child every day, and GiveForward has given us the ability to reach out to more people to pray for a MIRACLE.
Without GiveForward, and the beautiful generosity of it’s supporters, this cancer journey would have been, without exaggeration, unbearable.”