Clementine is the older sister of Freddie. She has many hobbies including reading, playing video games, and drawing.
Freddie was two and a half years old when he was diagnosed with cancer. For about a month, I kept noticing tiny little bruises around his ankles and wrists. I took him to his primary care doctor and had him checked out, twice. Both times I was told they were just “little boy bruises”. During one of his toddler music classes, I noticed that he had a petechia rash across the back of his neck. I called his doctors office after class and informed them that I was bringing him in again. Thing is that Freddie also had Down syndrome. Children with DS, especially in the 2-5-year-old age group, exhibit a 10- to 20-fold elevated risk of developing acute myeloid leukemia (AML), and acute lymphoblastic leukemia (ALL). So, I had this gut feeling that I needed to push the doctor for bloodwork. The nurse agreeingly ordered a CBC and some other labs. A few hours later I got a call to pack bags and bring Freddie in through the ER. We did not get to go home until 56 days later.
Freddie was diagnosed on January 8, 2019 with B cell Acute Lymphoblastic Leukemia. (The day after my 40th birthday) We found out a few weeks later that his cancer has a gene alteration called Philadelphia-Like. Philadelphia chromosome-like acute lymphoblastic leukemia (Ph-like ALL) is a subgroup of the most common form of childhood cancer, with features including high relapse rate and poor survival. Our first goal was to get Freddie into remission by day 29 of treatment, and thankfully he did it. We spent over 150 days inpatient throughout 2019. He had multiple surgeries, blood and platelet transfusions, C Diff infection, Rhinovirus, Enterovirus, numerous lumbar punctures, two bone marrow biopsies, multiple g tube infections, and 12 days of unexplained fevers. We celebrated four birthdays in the hospital. His dad’s, his own, and his two big sisters’ birthdays.
Freddie is now in the maintenance phase of treatment. Every 85 days he gets a lumbar puncture with chemo injected into his spinal fluid, IV chemo, and 5 days of steroids. He takes daily oral chemo and weekly chemo. He will continue with this treatment plan until March 20, 2022. Freddie will be a few months shy of turning 6 when he finishes.
Being separated as a family was extremely hard in the beginning. He did not see his sisters for a few weeks. He did not understand what was happening or why. My husband is a firefighter, and his shifts are 24 hours on and 48 hours off, so sometimes getting to see each other was hard. His older sisters, Clementine and Olive, are now used to things changing at any moment. A fever of 100.4 means an ER visit for Freddie, and if his labs show he is neutropenic that means he is admitted to the hospital. None of this is easy but we have learned to go with the flow, even when we really do not want too. I know that my daughters are forever changed. In some ways they have learned more about love, compassion, and how to be strong. But I know they have also learned how scary it is to watch a sibling fight cancer. They have seen their parents cry more often, whether its from being scared or from relief. This school year we have decided to have our kids do online virtual school. The girls had to leave a school they love because the possibility of them bringing a virus home to their brother, and us not knowing just when he is most vulnerable. They are doing well in school but are having a hard time adjusting to not seeing their friends in person. We have spent the last few years in a small condo with no yard. My daughters have been asking for a small house with a yard, for Christmas, for the last two years. We saved up our pennies, that were not spent towards bills, therapy, and such, and found them a place to call home. Our plan for this holiday season was extremely limited and that is okay. I know they deserve so much more, but I am thankful that Freddie is still here, and we all have each other.