I never signed up to join that club. The cost to join is enormous. But, join it I did on February 9th, 2007 when my then-two-year-old son was diagnosed with leukemia.
To say that the journey of helping a child through cancer treatments is a long, tough road is an understatement. It’s just plain rotten.
And, though it’s been several years now since my son finished his chemotherapy treatments in 2010, I still can clearly remember the questions and emotions that arose within during the deepest trenches of his journey.
I’m far from an expert, but I am a Cancer Mom. And so today I share five things I learned when my son got really sick.
1. The learning curve is steep, but you can make the climb!
The overwhelming days right after diagnosis
I’ve never felt more overwhelmed or confused in my life than the first few days of my son’s diagnosis.
I do not have any kind of a medical background, so when the nurses would say phrases such as “Ped’s Hem/Onc” and “We’re going to do an LP to administer IM,” I wasn’t sure if we were still speaking English. It’s okay. You’re not alone.
There is SO much to learn about blood counts, medications, clinical trials, doctors, Child Life… even where to park at each visit to the hospital—it’s overwhelming. But, you can do it! There are no learners more eager than parents wanting to help their child.
ASK QUESTIONS! Write them down and take notes. You may even feel like you’ve earned a medical degree by the time it’s all over… but come to think of it, I never have received my diploma in the mail.
2. Your doctor’s name is not Google.
I love to read and follow various blogs and news sites. And, when my son was first diagnosed I was so tempted to “Google” every symptom he presented. I wanted to know statistics and treatment plan expectations, etc. I think research is wonderful and statistics are helpful overall, but when you’re running on little sleep and your heart is broken, it’s better to get your information straight from the doctors and nurses that are caring specifically for your child.
Sometimes too much information at your fingertips can only lead to confusion, fear and frustration.
3. YOU are your child’s biggest advocate. Speak up!!
Healthcare professionals are superstars. They are invaluable, awesome heroes who help us throughout our child’s illness. But they are human.
Sometimes the people taking care of your child might be making a decision they feel is best, but you have a hunch that there is a better option. SAY IT! You are your child’s biggest advocate and you must speak up. Doctors and nurses appreciate parents and guardians who take a proactive role in their child’s care. Listen, ask questions, listen some more, and then share your opinions and follow through with the care plan.
4. Make the most of it.
If we’re being honest here, we all know that being a parent of a child with cancer is no joyride. At times it’s just plain crushing to your spirit. But, there are ways to make the most of the journey—even if it’s not how you would have designed your moments of joy.
My son loves trains and so for three years of our life we rode the People Mover train between Riley Hospital for Children and other nearby hospitals in the IU Health system. Back and forth, back and forth. It’s free, and honestly, it’s less than thrilling, but to my son that was something to look forward to each time we went to Riley. We found joy in that crazy monorail.
At home, there were nights when my son would wake up starving at 2:30 a.m. because of being on steroids. I never dreamed I’d be making mashed potatoes and chicken nuggets in the middle of the night for a chubby, bald, demanding toddler. But, looking back, I remember some of those moments with actual fondness. Sitting across from a little boy who couldn’t shove the food into his mouth fast enough in a quiet, still house was actually kind of precious. We talked together and made memories.
It is possible to make the most of even the darkest nights.
5. Find something to be thankful for every day.
Some days it may be really hard to find something to be thankful for if you’re watching your child suffer, but it’s not impossible. And, I’ve found that gratitude takes up a lot of room in your heart and tends to push out some of the less-attractive emotions.
Look around. What do you see that you are thankful for today? Is it something as simple as a short hug or conversation with fellow cancer parents down the hall? Is it the fact that we have access to world-class care and medications in our country – and right in our home state? Is it the sparkly sticker that a volunteer stuck on your child’s hospital gown, earning a smile from your precious patient?
The fact is, no matter how bad you have it, there is probably someone who has it worse.
Even if you have to phone a friend for help, try to find something to be thankful for every day.