Graces Cancer Fight

Grace Estelle Cloutier was born on July 30th 2018 and in early September of 2019 shortly after her first birthday Graces mother and family members grew concerned of her persistent fevers that were ranging from low grade of just over 100 degrees to 104 and also had a rash that started on her face and progressed to cover her body. Grace had lost her appetite, was inconsolable, very lethargic, and they also noticed her face was beginning to swell. This prompted them to bring her to her primary care physician. The physician drew blood and upon receiving results they were sent to Baystate Medical. After more blood test, blood transfusions, and a bone marrow test they had found abnormalities that couldn't be explained so they sent the results and more tests to Cincinnati Children's Hospital for analysis and was then diagnosed with a rare disease called HLH or Hemophagocytic Lymphohistiocytosis (https://www.cincinnatichildrens.org/service/h/hlh). They were sent home with a treatment plan and medication. Home for only one day Grace then started to show symptoms that didn't add up. She started to develop a rash behind her ear that spread to cover the back of her head with raised masses so they went back to the hospital and demanded more test be done. After 3 days of testing  and finding similar masses on her kidneys and the lining between her rib cage and lungs they were transferred to Boston Children's hospital. For the next week Grace then had 3 more bone marrow tests performed, blood work done every time she spiked a fever, plus an early morning blood draw, ultrasound, and Spinal Tap. Upon receiving the results the team of doctors at Boston Children's Hospital broke the news to Graces very anxious parents that she now had another rare form of childhood Leukemia called A.M.L. or  Acute Myeloid Leukemia (https://www.lls.org/content/what-is-aml), on top of her rare HLH diagnosis. She is currently slated to stay at Bostons Childrens Hospotal for a minimum of six months while she receives treatment which consists of various chemotherapy drugs and constant monitoring and test. Graces mother, Ashley Cloutier, left her Job and is by her bedside everyday, hour, minute, and second of the day. Graces father, Matt Cloutier, juggles commuting from his home in Western Massachusetts to his job in Connecticut, to Boston where he tries to spend as much time with her as possible. Both Ashley and Matt are wonderful parents that are also struggling with being separated from their older son Samuel who stays with his Volva, Pepe, Gigi, and Papa. Not being together as a normal family has been tough on everybody to say the very least. Grace is a strong little girl and is surrounded by her loving family, friends, doctors, and nurses that will never give up helping her fight off these two rare diseases. Before Grace was diagnosed she was just like any little girl her age but with a little something else. She is full of life and energy, never wanting to sit still, always running around after her older brother Samuel who is just two and a half and her dog Benji. She loves all of her stuffed animals, loves to be read too, loves to be outside and go for wagon rides with her brother. Grace is full of sass and when she enters a room she greets everybody she sees with a smile that is genuine and full of love. Grace loves to point to things that spark her curiosity and most of the time its food that someone else has. A few more of her favorite pastimes include, playing peek-a-boo, dropping her binky on the ground and watching people retrieve it for her as well as chasing bubbles and no holds barred "screaming matches" between her and her brother! Grace loves being in and around water, she took to swimming like a natural and, if she could, she would stay in the pool all day! Her favorite foods include: strawberries, pizza, bread, her ba ba, yogurt bites, yogurt sticks and scrambled eggs. her favorite food by far, however, is anything that is not on her plate but someone elses! Graces parents, Matt and Ashley, are determined that she is going to beat these two rare diseases no matter what it takes. They would also like for everybody that hears her story to share it with as many people as they can in hope to spread awareness and the science behind these horrible diseases. They also want people to be advocates for their own children. If you feel that something is wrong with your child, you need to fight for them and for answers. Never settle with one opinion or one test, always ask for more test and push for them in a timely manner.