Repost of my Huff Post Piece

I wanted to share a blog post, part of a series produced by The Huffington Post and St Jude Children's Research Hospital in recognition of National Childhood Cancer Awareness. You can link to the Huffington Post site here or read below.

We often find our 12-year-old son, John, deep in thought – his handsome, soft face full of contemplation, thinking about his reality and his future. A few weeks ago, during one of his moments of reflection, in a half-serious, half-joking voice, he said to Rich (his father) and me, “You need to let go.”

Rich answered quickly and with fervor, “I am. I am moving forward with you.”

I took a deep breath and pondered a moment. I also wanted to answer with enthusiasm and from a place of peace, but honestly, I struggle with letting go of the emotional baggage that we have accumulated along John’s journey with childhood cancer. So I responded with a heavy heart, “I’m trying.” 

Rich’s response was just right; precisely what John knew he would say and what John needed to hear. Rich is John’s security blanket, a constant source of strength and comfort and an unwavering companion. He is also the bond that holds our family together.

But, make no mistake, Rich hasn’t let go of anything. He puts it all away, deep inside, and only allows himself to visit the heart-wrenching memories in private. If you ask Rich how John is doing, he will eagerly reply, “Great,” so he doesn’t have to share his pain. He hides it along with his fears because he feels a sense of responsibility to carry our family forward, to inspire us and help us dream of better tomorrows. 

“I’m trying.” My response was raw and heavy and only partially true. I hang onto the dark, tortuous memories. I share them with family and friends, even strangers.

I want the world to know that childhood cancer is a nightmare. If people ask me how John is doing, I’ll paint them a picture of the agonizing reality of childhood cancer. I carry the memories around so that I can share them, giving people a cold, hard look at what hell looks like. 

Some of my recollections are blurry; my mind has mercifully allowed me to let them go. Others I choose not to let go of, especially the most painful memories. Those are often the ones that have revealed the greatest gifts. They have meaning. They have changed lives. 

I chose to share one of these memories with John, hoping he would better understand my struggle to let go of the past. Last year, during one of his intense rounds of therapy at St. Jude Children’s Research Hospital, I awoke in the middle of the night to the familiar smell of vomit. John’s bed was soaked and his body was so battered he wasn’t able to cry out for help.

With tears pouring down my face, I called St. Jude (open 24/7, 365) and was told to quickly bring him over and they would be waiting. After peeling his vomit-drenched clothes off, I anxiously wrapped him in a clean sheet and whisked him off to St. Jude. 

Waiting in the St. Jude lobby, as they had promised, was a nurse who quickly moved us into a room. A team of doctors and nurses took immediate action, working seamlessly to alleviate the side effects of the previous day’s chemotherapy. Once the medications took effect, the nurses helped me once again clean off John’s body, gently wiping off the remains of our difficult night. John was humiliated but too distraught to resist. I felt his shame and cried for him. 

Finally, after a long night, he was resting comfortably. Although it was the middle of the night, I wanted to share the events with John’s doctor, emailing him a quick note, letting him know John had a rough night, but was stable and resting. I joined John on his bed, cuddling him as I did when he was just a baby. At that moment, I needed him more than he needed me. 

A few hours later, before the sun rose, his doctor, Dr. Ching-Hon Pui, appeared in the doorway. He wasn’t there because he had to be. He was there because he wanted to be there, for John and for our family. I had to hold back my tears of gratitude as I listened to him make arrangements for John’s continued care.

We were later transferred over to the clinic where we were greeted by the warm embrace of our nurse practitioner, Martha May, my guardian angel. I explained to John: this is why I can’t let go of the past.  These dark memories have meaning. They have revealed gifts; compassion, renewed faith, hope and unconditional love. 

John struggles more with the present than with letting go of the past. He is painfully aware of his personal truth; he is on a 2.8-year St. Jude protocol, fighting childhood cancer, fighting for his life. While he is in remission, he suffers from many side effects related to his treatment: avascular necrosis (bone death), neuropathy (nerve damage), and a suppressed immune system, just to name a few. 

He misses out on birthday parties, school dances and soccer. Yet he finds the courage every day to keep fighting for his forever cure. 

John has outwardly let go of his pain and sadness while keeping the memories of this long journey intact, striking a remarkable balance for such a young man.  

With John, Rich and our daughter Isabella’s help, I know I will get there, too – eventually to a place where all of the fear and the anguish will one day be a memory with less bite, having served as a means to the love, compassion and strength that have survived. I will learn to let go of some things, while holding on to the most precious…with time. 

Kathy Hagen