A mother’s journey with childhood cancer – giving up is never an option

September 17^th is a date that will forever be ingrained in my head. It is the date I sat in a hospital room surrounded by family members while my son underwent 9 hours of surgery to remove a tumor from his right arm. Most people would probably remember the date of the original diagnosis, I don’t. I don’t know if it’s because once they confirmed the growth in his arm via xrays, we then had to go through numerous other tests to confirm what it actually was; which lengthened the time between the first moment we knew something was wrong until the actual confirmation that it was cancer. Or if I just mentally blocked that date.

But September 17^th I remember. Despite everything they say as a parent you still hope that once they finally cut him open maybe they will realize they were wrong, or maybe the growth was smaller than expected, or maybe the loss of functionality to that arm wouldn’t be as bad as they explained. In our case they were wrong once they opened him up they found that the growth was larger than originally thought. The surgery that was supposed to last 5 hours took 9.

By September 17^th, my son had already been in chemo for months, already lost all his hair, had lost so much weight that you could see every bone in his spinal cord and every rib in his chest. Coming out of surgery, he resembled a wounded soldier returning from battle. A scar almost the entire length of his arm that’s stitching resembled something akin to frankstein’s. His body covered in tubes and wires to help monitor his condition as well as control the pain. You’ll notice I said control because it wasn’t possible for him to be awake and pain free for the first few days. After that his hand would clench inwards as the nerves started to heal. The first couple days his dad or I stayed awake at night with our hands entwined with his to help keep the hand from cramping as it continuously tried to clench itself.

We were able to go home after a week or so only to return to the hospital every 3 out of 4 weeks a month for chemo. One of which deep red color and side effects has given it the nickname “red devil” and the other a sunny yellow color that contradicts its impact on the body. An arm that once threw fastballs hung limp and non-functioning. Months of physical therapy would finally enable it to function at about a 30′ angle raising that hand overhead would no longer be an option.

Through all this he persevered, he remained positive and focused on the end goal. He had the support of both friends and family. And we all rejoiced in March when the doctors stated he was cured. We celebrated, we were proud of ourselves for enduring that trial, thankful that we no longer had to travel the hour each way to the oncologist or hospital and we reveled in having time. Just having time with each other without that shadow surrounding us, haunting our dreams, invading quiet moments, it felt as if unbearable weights had been lifted.

Then June rolled around, and it was time for his 3 months post-chemo check-up. He and I had a great morning; joking around, planning our beach trip and his upcoming school year when he would finally be able to return to school. And, I’ll admit it if his being diagnosed the first time knocked the wind out of me, them telling us that it came back felt like my chest was crushing me. I couldn’t breathe, couldn’t stop the tears that just streamed, couldn’t pick up the phone to call his dad to tell him the news. And all at the same time trying to think, trying to remain calm and focused, hoping that I’d have at least one ounce of strength in me so that I didn’t fall apart, because he deserves more than that. Trying to figure out how when they said there is a 70% chance that it would never come back, how the hell did it come back? And why? Why God, why?

Then again more surgery this time on his lungs to remove tumors there, only to hear that once they’ve opened him up that they were only able to remove 2 of the tumors. And that unknown to us prior to surgery – his lungs are covered with nodules much like you’d cover a party table with confetti.

At what point do you get to scream “uncle” say “you win, I can’t take anymore“. “You’ve found my breaking point“, the answer is you don’t.

You continue on, you rally the troops, you research every last piece of information you can get your hands on, and you try to retain some piece of normalcy, you nag your son to do his homework, to stop picking on his brother, and to make his bed. You ignore the advice of the doctor and buy him a puppy to keep him company and to snuggle with. You sign him up for another treatment plan that includes chemo every three weeks that you’re not entirely sure will work although the doctors say it has worked before.

And you try to remain positive, but you won’t always. There will be days where you can’t physically move and tears just keep falling. Where you’ll ask your husband “What’s wrong with me? ” “why can’t I stop crying“. “He’s still here“. I still get to talk with him, laugh with him, listen to him negotiate with someone until they give in. “He’s still here” And, I know I shouldn’t be like this when I know other parents lost their child today. When I know there are children dying of starvation or in battle in war torn countries. That I should be thankful to live here, where we have access to modern medications and new advancements. But the thought always remains, is it enough? Will a cure come fast enough to heal my son?

So, each night I get down on my knees and pray to a God that I’m not sure has the same plan as only to wake up in the middle of the night just to sneak in and watch my son breathe. Ultimately, I follow my son’s lead, knowing that even at his age, he handles set-backs better than most and that he has no intentions of giving in and that giving up was never an option.

Update: Deena’s son’s journey can be followed here: http://www.caringbridge.org/visit/owenwicks