Red Deer AB
As a family, we did everything together – my son (Daxton), my daughter (Khloe), my husband (Kyle), and me. We would spend every nice day outside, even if it was just jumping on the trampoline and having a picnic in the back yard. We loved walking the trails around our city and enjoying all the outdoor activities we could. We had never been apart except for the occasional sleepover at their grandparents’ house. On Sept 19, 2019 that all changed.
Daxton had woken up and complained of a headache. Then, he became extremely nauseous so I took him into the ER. An hour later, I learned that my son had cancer. It’s something I never ever thought I would hear. They transported him by ambulance to a treatment center 2 hours away from our home, as our city didn't have the resources to treat kids in his situation.
I cannot even explain how I felt in the moment the ER doctor told me my son had cancer. I remember my body going ice cold and then the next instant I was on fire. All I wanted to do was run back to him and hold him, somehow protect and save him from his diagnosis. I was absolutely helpless. My son, however, kept so calm and did his best to stay strong. I will never forget his sheer determination to not cry. His little sniffles just about killed me as we pulled away from the other half of our family.
Everything happened extremely fast. We arrived at the treatment centre where they got him a central line and started chemo by midnight the same day he was diagnosed. Thankfully, we met the most amazing oncology team to help find Daxton the most suitable treatment plan to fight the Leukemia. The next couple months were a blur of life saving choices, tests, transfusions, medical teams, new information, and new plans. A mutation gene called PH+ was found, which dropped Daxton’s outcome of survival and upped his chances for relapse. We were faced with a flight or fight situation and we chose to fight – hard. That is exactly what he has done every single day since. Daxton and I spent 13 months away from home. He was either too sick with infections or too immunocompromised to be discharged from the hospital. My husband and daughter lived 13 months without us. As much as we tried to plan visits, we had to minimize Daxton’s exposure to germs.
He is the toughest kid I know and I am so proud of my boy. He has gone through 13 months of treatments and is currently on maintenance for an undetermined time frame. Then comes yearly checks to make sure he remains in remission and unfortunately a lifetime of battling side effects and/or possible complications from his intense chemo treatments. But we have so much hope that, as he says himself, “I kicked cancer’s butt!”
Daxton has had to grow up too fast and he knows more about the medical field than most adults. I am so thankful that he is so smart and retains so much but my heart breaks for the way he had to learn all of this. I am so proud of the warrior that he is, mostly because he can still wake up every single day with smiles and letting all that has happened stay behind him. He is starting to become the happy, rough, tough, hilarious kid he was before, yet he is so very different.
My heart goes out to all the families finding out their kids have cancer and not being able to have their families to support and battle the journey with them. My best advice to those families who end up joining this fight is to speak up about the things you need from others. If you need extra help with siblings or a small break from your hospital room. Let people know, you cannot care for your sick child if you're not taken care of. Of course sacrifices are going to be made but try your best to take care of you too. Also, reach out to your hospital’s social workers to see what resources are out there to help you and your family not just financially but especially mentally. They know all the best resources to help you find what you need. Join online groups with other parents in your situation because they are out there and it's absolutely helpful to know you're not alone. Finally, take this journey one single day at a time. Things can happen and change so quickly with cancer that you cannot plan.
I still find myself closely watching him and worrying about each bruise, cough or if he seems a bit sleepy. I think that's just how I am now. Permanently on high alert. Watching a child go through something so intense and life-changing also changes you. I could have given up hope a long time ago but I didn't. I fought for him just as much as he did, made sure he got exactly what he needed and became his voice. I learned everything his team would teach me and did them because he trusted me and preferred to have me help or do everything I was able to. I am so proud of my boy for overcoming all that he has. I am also proud of me.
Daxton’s mom, Jacey