Graysen was born in March 2017. She was born the day before my birthday and we often say that she was the greatest birthday present ever. She was such an easy-going baby - happy, curious, and sweet with a magnetic personality. She was seemingly healthy, happy and 21 months old when we shockingly learned she had leukemia in November 2018. It was a diagnosis we never saw coming and one we were forced to simultaneously digest, navigate and hit head on.
Gray was diagnosed with B-cell acute lymphoblastic leukemia (ALL) and was hospitalized immediately due to her counts. In the days that followed, we learned more about cancer and Leukemia than we ever wanted to. We thrust into a situation of making important decisions while still in shock. Our doctors were optimistic about her treatment plan but prepared us for a long, taxing journey.
In the first week, Graysen had blood and platelet transfusions, countless blood draws, surgery to insert a port, a spinal tap and a bone marrow test in addition to starting chemo, took doses of medicine and antibiotics, and received countless vitals tests. She also learned how to take pills - a step most of us don’t have to learn until we’re much older and was forced to learn how to wear a mask. We were in the hospital for 25 days until her counts were strong enough to go home.
Shortly after going home, we reached the 2nd phase of treatment: consolidation. This phase lasted for about 8 1/2 months and included two trips per week to the pediatric outpatient infusion clinic — one to test her counts and the second the receive chemotherapy. This phase of treatment also included four planned hospital stays that ranged from 3-6 days each. It also included one unplanned 4-day hospital stay because of high fever and counts. Other weeks included receiving chemotherapy at home both through her port and in pill form. Her immunity was extremely compromised during this period of time so we were isolated for most of it. She adjusted quickly, but it was obvious how hard treatment was on her body. Shortly after her baby sister Quinn was born, we had to shave Graysen’s head - a visual, daily reminder of what her body was facing.
In August 2019, Graysen reached the maintenance stage of treatment which involves daily chemotherapy in pill form, monthly visits to the outpatient pediatric infusion clinic and periodic lumbar punctures. This phase is less intense on her body, and therefore her hair has grown back, and her immunity is stronger. Just in time for the pandemic to arise and shelter in place and quarantine to start - which feels oddly familiar and comfortable to our family given the 8 1/2 months of distancing we had to experience during consolidation.
She had handled each and every day with grace, bravery, patience and poise. Even the days when we knew she must be feeling awful - she never complained. She never asked why her. She’s not even really old enough to understand that this isn’t what everyone has to do. She just accepts it. And that continually gives us the strength to do so too. We focus on what we do have control over, which is embracing the days she felt good and strong and being grateful for every moment.
Throughout her journey, we knew people in our lives would want to help by showing their support. We were lucky enough to have great insurance, supportive jobs, incredible family and friends and knew we didn’t need or want anything. Instead, we started a GoFundMe page with 100% of donations benefitting The Leukemia & Lymphoma Society (LLS), which to date has raised more than $32,000. Gray’s journey has also inspired people to donate money and time to other incredible nonprofits as well as blood and platelets.
Today, Graysen is 3 ½ years old. She loves dancing, singing, playing make-believe, watching and playing sports, playing with her sister, playing hide & go seek, school and Barbies, going to the beach and the park, spending time with her family, watching Star Wars, Bluey, Peppa Pig and Sofia the First. She is curious, conscious, thoughtful, has a phenomenal memory, a large vocabulary and big sense of humor. She loves to laugh, cook and go on adventures.
If all goes to plan and prayer, Gray will compete treatment in March 2021. We approach this important milestone full of gratitude and hope, but anxiety and fear too. Completing this phase of maintenance is so important and we’re beyond grateful to be here, but we are not out of the woods and the real test will begin when the medicine stops.
And that’s why it’s so important to give and be a part of efforts like this, in support of the phenomenal work that LLS is doing, because we aren’t alone in this fight. Even one person lost to blood cancer is too many. And we can’t and won’t stop until blood cancers are 100% treatable and everyone diagnosed eventually becomes a survivor.
-Graysen’s mom
Heather
ALL survivor
