After the Cancer Diagnosis: 5 Things I Learned When My Son Got Really Sick

k31_2I have to admit that sometimes I still cringe when people refer to me as a “Cancer Mom.”

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.

5 Years Ago…

I’m such a processor. I think and reflect often about my life. And, when an anniversary or significant reminder rolls around, I am especially pensive. Today is one of those days. Today marks the 5th anniversary of our son, Karson, being diagnosed with cancer.

For me, writing is therapeutic. I started a blog just a few days after Karson was diagnosed and have written thousands of words on his leukemia blog throughout the past five years. Writing is not a new thing for me. In fact, just this week after having a conversation with my parents about a tough time in our past, I went and dug out my old journal to read the scribbled entries I had written about my life at the ripe old age of eleven. Actually first, I had to remember the combination to the lock on the journal, but once I got it open I laughed as I read the preteen version of my therapeutic pastime. My husband teased me that not much has changed. Thankfully my grammar and spelling have seemed to improve since 5th grade!

So, here I am again today. Taking a quiet hour or so while my little girls nap to write about my thoughts and memories. Ironically, now I don’t lock them up in a teddy bear journal, but publish them online for others to read. Vulnerability is scary sometimes, but it has also helped me to have others walk with me through this journey. Having the love and support of friends and family has been such a comfort. It’s been five years now that I’ve needed that comfort as I’ve tried to comfort my own child while he walked down a long road of hardships. Today however, my little boy is the one helping me!

Five years ago Kraig and I were walking down the unfamiliar hallways of a hospital where we’d never before set foot.  We were shell-shocked, stunned, and scared. I was in denial and waiting for someone to tell me that they’d made a mistake. Our child, our little blonde headed two-year-old, could not have cancer. He was fine. He surely just had a virus or something causing his limp and fever. The nurses kept using terms like “hem/onc” and “LP” that sounded like a foreign language I did not have any interest in learning. We watched in horror as our son was held down on a table and a biopsy of his bone marrow was done. I walked with weak knees down a hallway toward a sign that read “Children’s Cancer Center” thinking that I must have been having an out of body experience because this couldn’t be my life.

Well, it was my life. Now, five years later it’s such a part of me. It’s hard to think back before I was–what they call– a “cancer mom.” I certainly would not have chosen this path, but I most definitely don’t want to waste it. Karson himself has helped teach me that. He’s not a prodigy or some child-Einstein (although I will say I’m getting nervous that his math skills are already close to surpassing my own!) but he’s a kid. His perspective is child-like and simple. This life he’s lived the past 7 years is all he knows. He knows that he had cancer, that he could have died, but that God has healed him and he’s doing great. He knows that sometimes he still has to go get blood drawn or tests done that aren’t very fun, yet he doesn’t complain. He looks for the good in things-which for him usually comes in the form of what food he can order while at these appointments. He tells people that he had cancer when he was two in much the same manner that you’d tell someone you had a pet fish. It is what it is… and that’s pretty refreshing.

For Karson’s diagnosis anniversary we gave him a gift bag. Inside was five candy bars and to each treat we taped a word. I had heard of a family giving each other encouraging words one year for Christmas and I thought it would be neat to give Karson 5 words on his 5 year anniversary. I wanted his words to be attributes given to him through having cancer, not things that were taken away. They are attributes that we see in him and that we are proud of as his Mom and Dad. The words were: Brave, Adaptable, Loving, Tough and Compassionate. He took them in stride and thanked us… mostly for the candy! But hopefully he’ll remember these words and continue to allow them and his circumstances to make him into the man God wants him to be. We also gave the girls their own candy with the words “Sweet Supportive Sister!”

Five years ago we walked down the hospital hallways. Yesterday, after taking Karson for his oncology check-up, I was able to walk down the halls of his elementary school. I dropped him off and although he was tardy, he was healthy, happy and excited to get to class. He kissed me before walking into his 1st grade classroom and I tell you what, I will never take that boy for granted. I prayed and thanked God over and over as I walked back out to the car. I didn’t know if I’d see this day. I didn’t know five years ago if Karson would live, let alone be able to learn in a social, school setting. The dark hardships of life bring to light all of the blessings.

I see blessings all around now. I saw them on the walls of the school where Karson’s name was above his locker. I see them in two precious little girls God has graciously added to our family. I see them in germy play-lands that we once could not go into because of having an immuno-suppressed child. I see them in the faith of others who have prayed for us along the way and who are now lifting their eyes to God in praise for what He’s done. I see them in the opportunities we’ve been given as a family because of Karson’s cancer. Opportunities to honor God-through trial and blessing.

Yes, I think about all these things. I’m nostalgic and sentimental… and a bit of a dork. But it helps me keep perspective in life. I’ve had hardships and blessings in my life and I don’t want to forget either. I want to have the simple faith of a child to say that whatever God brings my way I’ll trust Him. He’s proven faithful in the past and I know He’ll prove faithful forever. I know it’s not going to be a life without more pain, but if there is anything I’ve learned through my trials, it’s that God is good. And life isn’t about me, it’s about Him in the first place.

I am so thankful that today instead of watching Karson go through painful tests and procedures I watched him play with a marble track this morning and blow kisses to me from the bus window. I don’t want to ever take life for granted. It’s therapeutic to write about it and process all God has done… and in case you were wondering, no…you can’t have the combination to my journal!