During Shawn’s recovery period, his care team suggested we take part in a live-in therapy program that would give him daily physical, occupational, speech and play therapy. It had been 6 months since his diagnosis with an ependymoma tumour, subsequent surgery and radiation but Shawn still lagged behind as far as the anticipated recovery. He had only a few words and didn’t seem too interested in learning to walk again.
The team assured us that this therapy centre was the best place possible, filled with the expertise that would be just what Shawn needed to move forward with his life. Of course we wanted the best for him so we accepted the opportunity even though we longed to be home after months of living at SickKids then Ronald McDonald House.
But after three weeks it was apparent that this wonderful opportunity wasn’t the right one for Shawn. He remained fearful all week of the people in white coats and then thrived on the weekend at home with his lively, five year old sister. When we told Shawn’s case worker that we were dropping out of the program, she outright told us that it was a mistake. We would regret it, she said. As the news spread through the centre, the various doctors and therapists that had attended to Shawn echoed the same opinion looking at us like we were doing him harm.
All parents have those moments in life where they must advocate for their child’s best interest whether it’s with their teacher, coach or another parent. But when your child has cancer it is very difficult to not only recognize those moments when you need to intervene, but to understand how best to ensure your advocating is in fact helping, not hindering. As we look to the experts to lead the way on this path of uncertainty it’s very hard to say stop, you’re not listening to me or to ask for an alternative.
Remember this: the various experts that will rotate through the hospital room door certainly are experts in what they do but only you are the expert when it comes to your child.
Leaving the therapy centre was one of the best decisions we ever made for Shawn. He may not have had a group of professionals focused on his recovery on a daily basis, but he was home, in his own bed, surrounded by the best therapy of all, his family.
If there is one thing that I have heard over and over again from parents, it’s how much they wished they had pushed harder, had asked more questions, and were more involved in the decision making process. Of course hindsight is 20/20 and the fog that envelopes parents when cancer strikes their child is hard to muddle through.
Here are a few tips that may help.
Keep a dossier for all the paperwork you will receive because it will be plenty. Document conversations, ask for test results, keep copies of prescriptions and note any side effects. Keep a contact list for the various members of your child’s care team including email addresses. Jot down questions when you think of them and ensure you get the answers, then document those as well. You never know when you will need a medication list or a contact number in the middle of the night.
Ask questions. Lots and lots of questions.
Fortunately the care team assigned to your child will really know their stuff; unfortunately sometimes they forget that you don’t. You’re new to this experience and therefore may not understand something that seems second nature to them. If you don’t understand or are unsure, ask. There will be many people involved in the care of your child but don’t assume that they know what the other one has done or said. Yes, they document everything too but it’s not unheard of to receive conflicting information from different disciplines. So ask and clarify so you truly understand. Remember, you will be the only constant in your child’s life to connect all these dots so ensuring that you understand all the pieces of the care puzzle is imperative.
Trust your instincts and let your child lead.
How many times have we heard from parents that they ‘just knew something was wrong’? You are in tune with your child like no other person on earth, trust your inner voice and don’t be afraid to push if you think it’s necessary. Your child will give you signals so it’s your job to listen to them. After each radiation treatment, we had to wait in recovery for a volunteer to escort us to Shawn’s room. This sometimes added another hour of waiting before Shawn could finally have his first meal of the day. After pleading our case, I was given permission to bypass this protocol and take Shawn back myself once the recovery nurse gave us the okay. Of course, you won’t be able to control everything but for a child even the smallest change can make a big difference.
Talk to other parents.
Parents of a child with cancer are a unique group indeed. As much as you value everything that your child’s care team offers, no one can truly understand what your family is going through like those that have travelled the same road. If you haven’t met any families similar to yours, ask your medical team to introduce you or find an online source where parents gather to chat about their various concerns. Seasoned parents who have been trekking a long path will have insight unlike any other and can offer sound advice when it comes to the health and welfare of your child.
Ask for alternatives and get a second and even a third opinion.
Not every procedure or process is going to work for every child. Shawn hated the juice / chemo mixture that was put into his sippy cup and would throw it across the room when we insisted he drink it. Once we admitted to the oncology staff at SickKids that this wasn’t working, they came up with an alternative that gave us more control and lessened Shawn’s anxiety. Your medical team has probably seen it all so don’t be afraid to let them know that something that was supposed to be fairly routine, isn’t.
When it comes to the big decisions, don’t be afraid to ask for a second opinion or even a third. When Shawn’s medical team told us there was nothing more that they could do and that Shawn would die, it took me a few days to work up the courage to tell them we wanted to speak to someone at St. Jude’s, another leading children’s hospital. I was truly afraid of hurting their feelings believe it or not. They, of course, encouraged us to do so and even though the outcome was the same, I am so glad that I did.
You not only advocate for the good of your child but for the good of your soul as a parent.
You need to know that you did absolutely the best you could, no matter what.
Be brave, you may not have a cape and tights but you are the most important super hero your child has.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.