Jaxon was just 4 years old in 2017, when he was diagnosed with medium to high risk Acute Lymphoblastic Leukemia. It was a shock to me, that what I initially assumed to be growing pains, was actually deteriorating bone marrow density and a spinal compression fracture. Who ever heard of a preschooler with a broken back? I had no idea what lay ahead, I was terrified.
The turning point for Jaxon happened within the first month of induction, when he began to rapidly put on weight due to the steroids. Not only did his skin itch and his body ache, but he was dragging around all the extra weight. He was on painkillers that didn’t minimize the pain, as much as making him feel lethargic, quite a change from the active boy that he was. As his mother, this was the hardest thing to see, such a drastic change in behaviour. I still struggle with this.
At this point I don’t know if I will ever get that boy back. I continue to learn more about the affects of treatment, as we lived and progressed through the journey of battling cancer. I’ve learned that chemo injections into the spine causes personality and behavioural changes, as well as learning difficulties. I tried to prepare myself and my other two children, for Jaxon’s eventual weight loss, loss of hair, nausea and mood swings, but I’m not sure anything could have prepared us for the personality changes we saw develop. How do you mourn the loss of the personality and life we knew as Jaxon? This disease greatly alters and rearranges the lives of a family.
Cancer affects our whole family. Although we all rallied around Jaxon and looked after the wellbeing of the boys, my marriage dissolved quickly, under the pressure of our new reality. I think his father just wasn’t prepared to see the effects that cancer had on his child. We have bonded together, Jaxon’s twin Ryan being Jaxon’s voice and confidant at times, and his older brother Ethan, who takes on a more protective role. When Jaxon’s hair started falling out, Ethan was always there to tell him he looked cool and let people know not to draw attention to it, proceeding any new encounter. In the family of a single mother, it was interesting to see how each of the boys dealt with the changes that Jaxon went through, they all had a role.
Right now, all of my boys are so grateful for Jaxon’s improved health, we are now more focused on paying what we can forward, we are grateful for the amazing people and organizations who have helped us get through the first very tumultuous year. I don’t think we would have done as well without the support of Helping Families Handle Cancer and their support during this past year. They have provided financial assistance when I couldn’t afford to keep the lights on or food in the fridge. They paid my Enmax and Direct Energy bills, provided groceries on a regular basis, and continue to provide parking passes and fuel for our visits to the Alberta Children’s Hospital. It would be a financial hardship without this assistance.
For me, the best decision I made, as a single unemployed parent of three boys, was to focus on my son’s recovery and make sure he was not alone. The support Helping Families gave me, allowed me to do that. They have been there for me and Jaxon, through every step of this journey. I know the foundation is there for people just like me, facing the same family crisis that we have faced, together. They know the struggles, they know next steps, they have the empathy and experience of interacting with parents in shock and then throughout recovery. That allowed me to breath, during a time when I felt I was drowning.
Our family mandate now is to give back, whatever we can now and in the future, to support charities like this. We want to stand behind this cause, to spread the word about pediatric cancer and the struggles a family has to face, as the impact of Helping Families Handle Cancer provides is life changing.
– Marie Howell
