"My baby girl has WHAT?!"

“Yesterday is history. Tomorrow is a mystery. Today is a gift.” -Eleanor Roosevelt

Everyone has a tribe.  It is how we survive.  When you first become a parent, you suddenly find yourself wanting to be surrounded by others who are finding joy in the piles of diapers and sleepless nights.  There is something special about the bond that happens between two people who are on the same journey.  (I guess they always say that misery loves company.)  We were created to be in a community and to live life each day to its fullest…together.  It is how we thrive instead of just survive.

Tribes, however, are fluid and seem to be constantly changing.  We grow and our change interests.  We relocate because of school and work. Sometimes a new tribe comes crashing down on you when you least expect it. That’s exactly what happened to me in the fall of 2012.  It was a day that I will never forget.  It was the day when I first heard the words, “Your child has cancer.”

“My baby girl has WHAT?!”  I remember uttering those same words over the phone to my 24-month-old’s pediatrician late one Tuesday evening.  She had just been to her routine well check the day before.  Nothing seemed out of the ordinary.  As soon as we left the office, I made the typical post-appointment call to the grandparents to let them know that their granddaughter nailed her well check like a champ.  We were all completely clueless as to what was about to happen.

You can see why I was taken slightly off-guard when I received that dreaded call.  At first, it didn’t seem abnormal until he started asking me very detailed questions about my daughter (who just so happened to be playing beside me on the floor).  Was she feverish?  Was she black and blue anywhere?  Was she having night sweats?   Was she pale? The questions kept coming and were becoming more and more bizarre.  I just simply answered “no” every time.  She looked great and was acting totally normal (if “normal” is even possible when referring to a two-year-old).  The pediatrician proceeded to tell me that her routine bloodwork showed that she had leukemia.  He said that the results were odd since she was not showing any symptoms. Yet, he had already scheduled an appointment for her at the hospital the very next morning.  We were hoping for the best, but already bracing for the worst.

The following morning, the new bloodwork did, indeed, reveal that my little girl had cancer in her blood. It was there that I began to meet my new tribe—doctors, nurses, child life specialists, and other volunteers that would soon be our cheerleaders along this journey that we were dreading.  I remembered being ushered to our room (our new “home away from home”), with my husband by my side and our daughter in our arms. Tears were streaming down my face.  At that point, I already knew God had a plan.  It was just so hard when I really couldn’t see it.

The first 24 hours at the hospital were filled with a surgery for her port, blood transfusions, her first of many spinal taps and bone marrow aspirations, and first of countless bags of chemo.  At some point, her oxygen levels dropped and my seemingly healthy baby girl, won us our first trip to the Pediatric Intensive Care Unit when she passed out in my arms in her hospital bed.  The next two years were a whirlwind of ups and downs, some of which I do not even remember.  In the end, the perfect concoction of poison, antibiotics, and blood products did the trick, and we were able to celebrate her end-of-chemo party surrounded by our old and new tribe just before Christmas in 2016.

 

The world of pediatric cancer is real.  It is filled with complications and things that no parent should ever see.  Yet, here amidst this world of suffering and tears, I have found some of life’s greatest joys.  I have found a group of people who has a new-found passion for living and who never take a moment for granted.  I have met young girls who have learned that true beauty isn’t based on the latest trends or hair styles, but how you handle yourself in the face of adversity.  I have seen parents that have had to learn how to make quick, informed decisions during times of physical and mental exhaustion and put the rest in God’s hands.  I have learned the value of a perfectly-timed hug or encouraging word.  I have seen the good-hearted nature of communities that come together to support families on treatment.  The list could go on and on.

September is Childhood Cancer Awareness Month.  Hopefully, this does not mean much to you. However, many have already been introduced to the world childhood cancer. You maybe had a friend who had cancer when you were growing up.  You might have had a classmate of one of your children who has battled cancer.  Even worse, you may have had this horrific disease strike your own family. There are nearly 16,000 children diagnosed with a form of pediatric cancer each year.  That is a 24% increase in the past 40 years. Yet, less than 4% of the nation’s cancer funding is aimed at pediatrics.  It is a harsh reality.  I was a mom who was tricked into thinking that it could be prevented by my healthy lifestyle, homemade organic baby food, all-natural body cleansers and laundry detergents, and chemical-free house cleaners.  Cancer can strike without warning.

Here’s the good news.  Through our experience over the past five years, I have discovered that there is an entire tribe of people right now that are actively fighting to see an end to childhood cancer.  Our goal is that one day we will be living in a world where we will never again lose a child to something that could have been cured.  Our hope is that you will never have a personal experience with cancer.  We also want you to know that, if you do, we’ve got your back.  

-Kerry Kavlie

Patient & Family Services for CURE Childhood Cancer and mom of childhood cancer survivor, Rachel. Kerry is also the author of the bible study, “Glory Girls”.

For more information about CURE’s mission to fund research and support patients, visit our website at www.curechildhoodcancer.org or follow us on Facebook at https://www.facebook.com/curechildhoodcancer/.

Moss & Marsh will be donating 10% of website sales for the month of September to CURE.


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