Mia was diagnosed with medulloblastoma on July 26, 2015 at the age of 13 months. Up until that point, she was a very healthy little girl. I fed her healthy foods, probiotics, no sugar, not so much as a cookie! I did everything I could to make her first year as healthy as possible. As you can imagine, we were devastated upon learning her diagnosis. Our entire world changed in an instant. She was admitted at the Hospital for Sick Children and within 20 minutes of being in the emergency room, they knew how sick she was and how little time she had to get treatment. They had to drill a hole in her head to drain out the excess spinal fluid that was accumulating in her brain because of papilledema (swelling of the brain). It was indescribable, watching your baby suffering in pain, with a tube sticking out of her head. She underwent a craniotomy, brain surgery, to remove her tumor the next morning. Doctors were able to successfully remove the tumor and she continued to recuperate very well over the next couple of weeks. She then started 7 months of chemotherapy treatment to ensure that the tumour cells were destroyed. It has been an emotionally a
nd physically challenging journey these past months for both Mia and us, her parents.
Thankfully we had an incredible support team, family, and friends. Some friends did disappear, not everyone can deal with this sort of crisis. That’s why we were even more thankful for the team at SickKids, and Ontario Parents Advocating for Children with Cancer (OPACC). OPACC was there for us every Monday morning and Tuesday evening at Sick Kids. They helped me talk about Mia’s condition and listened with empathy and such wonderful support- John & Sue are the best! God bless them for their selfless work. They gave me such great advice and helped me sign up for events for Mia. The coffee and treats they provided were so thoughtful and very much needed. It’s difficult to stay strong all the time, especially when your child is suffering from a critical illness, but OPACC helped me deal with my daily and weekly struggles, and I would always leave them feeling a little bit better. OPACC helped us create a blog to record Mia’s and our experiences to share with family and friends- it has been such great therapy for us, and for me especially.
It was so important to me that they knew what we were going through with Mia. Both John and Sue have lived through this. It was comforting to know that we were not alone in this journey. Yes, you have family and friends to help you, but no one really can understand your emotions and your struggles unless you have experienced them yourself. I got my strength from them. If they were able to continue on and get through their children’s illnesses, then we could too. And, we have been able to get through this.
Even though Mia has completed treatment and is now cancer-free, it doesn’t mean it is over. It will never be over. Our lives will never be the same. There will always be the constant fear of it returning, side effects of chemotherapy, and post traumatic stress that we are all experiencing. For now, we live and cherish each day we have with her. We thank the Lord every day for giving us more time with her and we continue to hope for a long and wonderful life for our little girl.
Amy, Carmine, and Mia Amato