unless you’re a medical professional, you’ll probably have no idea what’s really going on in the early stages OF YOUR CHILD’S CANCER TREATMENT. but you’re your child’s best, most important advocate. here’s some help to start asking the important questions.
Can you even remember half of what you were told in the first few meetings with your oncologist? Or even if you could, did it make real sense to you?
There is a great deal of medical jargon that comes with a cancer diagnosis. Until you get clear on what it means, chances are you’re not fully comprehending what you’re being told. Here are some resources to help you quickly start making sense of the whole new world that you’ve landed in, and how it applies to your child.
resources
Getting a treatment roadmap from your oncologist
It’s easier to feel calm about things when you actually know where in the process you are, and what to expect at each point.
This workbook:
will help you to get your head around your child’s cancer, and the proposed treatment regime. It asks all the questions that you might not know to ask yet; and
is an interactive PDF, meaning you can type straight into the answer boxes if that’s how you like to do things, or you can print it out and write by hand.
Sometimes treatment regimes will be abandoned if a cancer is not responding in the way it is initially expected to. This workbook can be reused each time a new treatment regime is started.
Tracking your child’s bloodwork
After a while, you realise that your child’s bloodwork numbers, side effects, and medical interventions are all linked. By keeping your own track of these things, you’ll start to see the patterns, which will help you become more effective at ensuring that your child gets the treatment that they need.
For example, when we realised our son would get severe constipation due to anti nausea medication, we asked that he also start getting a laxative at the start of his chemo to stop that happening. When we realised that our son would go white because his haemoglobin was below a particular number, it would prompt us to ask if it was time for a blood transfusion.
You are your child’s best advocate for getting the treatment they need. Don’t expect that other people - like doctors, or nurses - will be on top of doing this for you. They’re often juggling a huge workload, and won’t be as proactive as you can be about these things.
Finding the experts on your child’s particular cancer
Curewheel is an application that combs through clinical trial data and published research to identify physicians that have particular expertise in your child’s specific diagnosis.
It takes only a few minutes to complete some questions about your child’s specific diagnosis, and the app gives you a free report on the physicians who may be best placed to help your family.
Curewheel was built by a dad of a childhood cancer survivor. It’s currently limited to physicians in the United States, but could be extremely useful to parents across the world who feel like they may have exhausted their in-country options.