A Father’s Day Blog by Rally Kid Dad Chris

Something just wasn’t right.

“It is probably another ear infection.  They will probably have to put tubes in her ears and start on another antibiotic.  It should be cleared up in a week”.  But the plan I had in my head didn’t come close to being true.  After a trip to Children’s Hospital of Atlanta (CHOA), bloodwork, and a CT scan, our first-born daughter Alexa was diagnosed with Stage IV Neuroblastoma five days after her first birthday.

My plan was shattered.  This was my worst nightmare.  Everything went dark in my mind and soul.

“We can fix it!”, I thought.  Through chemotherapy and surgery – she will be alright.  But after ten rounds of chemo, two major surgeries, two years of an experimental monoclonal antibody treatment in New York City, years of being on continuous flow of oxygen, and ten years later…my plan was again shattered.  Our plans for a life with her had crumbled and shattered us to the core.  Alexa lost her battle with childhood cancer.

Being a father of a kid with cancer challenged me like nothing else has in my life.  Alexa taught our family, friends, and community so many lessons over her shortened eleven years on this earth.  I felt blessed to be her dad as I watched her face such challenges better than I ever could.  Because of her strength during adversity, I wanted to provide her what she really needed – all of me.  She made that easy for me as I became inspired each day that she kept fighting this horrible disease.

In a speech she gave when completing her CHOA rehab program, she shared some encouraging words to the other kids which our family calls Alexa’s “Words of Wisdom”.  Looking back, these are awesome messages for fathers of these little warriors in our lives.  These “Words of Wisdom” are:

• Don’t ever give up – As a dad, this is our badge. We always find ways to fix things or make things right.  As a father of a child with cancer, you’re in a situation that cannot be fixed.  The cancer diagnosis is out of our control.  What we can do is embody an attitude of hope that can spread like wildfire to your child, your family and those around you.  Hope is one of the most powerful emotions to embrace even when there doesn’t seem to be any in sight.  For our family, claiming hope was a great way to manage our anxiety and worries as well as cope with any setbacks we would have along the way.
• Have a positive attitude – It is amazing what a positive attitude can bring even in the midst of turmoil. If you try to see the positive side to your situations, it really helps manage any negative events that may come your way. This doesn’t mean that you don’t deal with the realities of childhood cancer.  It means that you will be able to see this journey in a more optimistic light that can permeate outward to your child and family.  Your positivity can be contagious and lift the heaviness of your situation.  A positive attitude is important to overall health, but studies show that a bright outlook could play a major role in how someone handles cancer treatments.  Wouldn’t it be awesome to role model positivity in your family and potentially have a direct impact on how your child faces their treatment?  That’s some powerful stuff!
• Always find something to be thankful for each day – Resting in a world of thankfulness can be so challenging and seem so foreign while facing the true realities of your child’s rocky road ahead. But, as you start to find something to be thankful for EACH DAY and verbalize it, this can become second nature to you.  In our situation, we would identify the smallest and simplest things to be grateful for.  For instance, during treatment: no nausea, no hospitalization after chemo, successful surgery, good blood counts, clear scans, finding the right therapy, being eligible for a new experimental drug.  We would thank the doctors, nurses, therapists, those who cleaned our room, gift shop workers, hospital volunteers, and therapy dogs.  We also appreciated all of the loving support we received from our community of friends, neighbors and church members.  We recognized that we couldn’t fight this battle alone.  Having an “attitude of gratitude” became easier each day.  Being thankful for your child being diagnosed with cancer is like an oxymoron – you aren’t supposed to be thankful or grateful for that!  It is natural to be angry, confused, unsure and upset at the world.  However, finding something small to be thankful for daily can bring hope to your soul and a more positive outlook for you and your family as you all battle together.

Chris and his daughters Alexa and Jenna

The only way that I was able to function as a father, provider and protector of my daughter and family was to lean on my faith and belief in God.  The Bible tells us to give thanks in everything…in all our circumstances.  “Be cheerful no matter what, pray all the time, thank God no matter what happens.  This is the way God wants you who belong to Christ Jesus to live” (1 Thes. 16-18).  My initial thought was that there was no way to be thankful for THIS situation – my child’s cancer.  But I found that I had more strength in dealing with all that came my way when I tried my best to thankful and praise God.  One of my favorite songs is Praise You in This Storm by Casting Crowns.  These words are some of the most inspirational lyrics for me:

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

This Father’s Day, I want you to know that you can’t do this alone and you will need others to come alongside you during this journey.I pray that you will be able to find hope during your experience with Childhood Cancer and also find strength that will sustain you.  You are a special man.  You have been given a gift to care for. You can be a blessing to your child and family.

If you find that you don’t have many others to walk beside you at this time, please feel free to contact me at [email protected]. I am always open to listening and sharing with others who have experienced a situation similar to mine.