Once upon a time there was a boy, full of adventure and courage. He was empathetic and kind, making friends wherever he would go. He lived in Seattle with his parents and went to school where he learned Spanish, the native language of his father. One day the boy woke up with a runny nose and a hideous cough. Ah, another cold. Almost expected, as it was cold season in the month of November. As days passed, the cold persisted. No amount of rest or water could tame the beastly virus. It morphed and changed week by week, taking on new forms and creating new symptoms. Headaches came and went. Ears became so clogged the boy could barely hear. The cough, which at times seemed to dissipate, would return with a vengeance the following days like dragon fire. The boy and his parents had plans to go to Mexico in December to spend the holidays with family there. They were worried about the boy traveling with clogged ears and a cold. The boy’s parents took him to the doctor, twice. Both times they left with the reassurance that indeed, it was just a nasty cold. They were instructed to bring some Tylenol with them on the plane to alleviate any discomfort that the boy may experience in his ears from the change in pressure. By the time their vacation arrived, the cold had settled. They were all feeling better, safer for the moment. However, cautious and aware of the threat that was still there.
It was a comfortable flight to Mexico that December. The worst of the cold symptoms had disappeared. The apprehension and dread that had been following them for the past two months finally left and was replaced by the joy and excitement of being on vacation. The boy could hardly wait to go swimming in the pool and play on the beach. They had been looking forward to this vacation for so long, counting down the days. They had finally made it. Time to have fun and relax! Or so they hoped. As much as the boy’s parents wanted to let go of their worries, fear hung onto them. Something wasn’t quite right. The boy, although in good spirits and without cold symptoms, was missing the energy and strength that a healthy boy on vacation should have. Sure… he swam, he built sandcastles, he laughed and played. But it was softened and short-lived. As if someone had turned down the volume. The boy, at four and a half years old, was no longer taking long naps during the day. However, while in Mexico, he was taking naps as long as three hours every day. The boy, who normally resists an early bedtime, was eager to crawl into the sheets well before it was time. The boy, since birth a “hot potato” who is always looking forward to snowy days and a cool breeze, complained of being cold while the warm Mexican sun covered his skin. The skin, that normally would tan three shades darker in one day under the sun, was pale as a ghost. His energy and color gone, like it had been sucked away by a vampire. The boy’s parents, trying not to overreact or assume the worst, continued to believe that this unusual behavior was just the boy recovering from a bad cold virus, reassured by the recent diagnosis that the doctors had given them. They had good faith that after all the rest the boy was getting on vacation, he’d be back to his normal self by the time they got home. Unfortunately, things only got worse.
Towards the end of the vacation, the boy started having unexplainable pain in his right foot. Next came the bloody nose. By the time they were back in Seattle, his energy was so depleted he could not even walk up a set of stairs. The tiredness clung to him like venom, weighing him down every minute of the day. Red dots on his neck and thigh, (which they soon found out to be called petechiae) were the last and final sign that there was a bigger, scarier mystery to solve. Back to the pediatrician they went, knowing this indeed was not “just a cold”. This was something more serious. How serious, they were about to find out. The doctor noticed the petechiae almost immediately. He ordered an x-ray of the boy’s chest and blood to be drawn at Children’s Hospital. Did the boy’s mother hear the doctor correctly? She wondered nervously. Did he say, “slight possibility it could be leukemia”? Unable to believe such horror, the boy’s mother continued through the evening with complete disregard of the idea. So, they headed to the hospital where the nurse struggled to find the boy’ s veins and successfully draw blood. After four tries, the nurse finally got a sample. Exhausted from painful needle pokes and tears, the boy was anxious to go home and sleep. The boy’s mother, also ready to sleep, had assumed their adventures were done for the day. They ate some pizza on their way home and got ready for bed. Then came the phone call.
“Head to the emergency room right away” instructed the doctor. The next two hours were a blur of terror and doubt. Is this really happening? What is going on?? As soon as the boy entered the emergency room, he was swept away by nurses who immediately went to work on him. The boy’s mother was spinning, while the father, who was away on a work trip, drove frantically from Portland with dread in his heart to be with his family. The doctors finally confirmed the parent’s worst fear: leukemia. And so, their journey began.
The night we found out that Theo had leukemia, I cried the hardest I’ve ever cried in my life for two days straight. It was uncontrollable sobbing from deep within my gut. Each cry violently escaping my mouth like some form of exorcism. A way for me to process the pain so I could somehow climb out of the black hole and be present, in one piece, for my son. After those two days, my body felt numb. I had no more tears left, no more demon of pain inside me. That emptiness was soon filled with love, strength, and hope. Exactly what I needed for my family to win this battle. Time to put on my big girl pants. Theo needs me to be strong, he needs me to be brave. For two years I didn’t cry. I smiled and told myself everything was going to be okay. I told everyone that it’s fine, that Theo is so strong. I confessed that it was hard but tried to focus on the positive, believing we would get through it. AND WE DID.
On January 24th, 2022, Theo had his END OF THERAPY celebration at the hospital. When a patient finishes their therapy, they get to ring a big bell and have their picture added to the END OF THERAPY board in the main hallway of the clinic. Theo and I walk past that board every time he has an appointment. It is a massive collage, full of happy pictures of patients who have made it to the other side. As I walk past it, I look at it longingly. My thoughts have progressed from, “one day Theo will be on that board” to “almost there” to finally “he made it”. It’s like being inducted into the hall of fame. Now, when other families walk past that board, they will see Theo. My boy, in all his Spider-Man glory among the other smiling faces. I could not be more happy or proud.
So now what? Well, for starters Theo can go back to seeing his regular pediatrician for annual check-ups and routine concerns. The next time Theo gets, say, a rash (like he did on his hand about one month ago) we no longer need to contact his team at Children’s Hospital through MyChart with pictures and a description asking what to do. That’s what the pediatrician is for! Oh, but I love his team at Children’s Hospital. They are my security blanket. I know that part of the transition back to normal will be hard for me. But don’t worry. We are not saying good-bye. More like, “see you around”. As in, see you once a month for the next year. Then once every three months the second year. The third year is when they cut us loose and the long-term survivorship care team follows up with Theo once a year. Theo is presently having multiple tests done so his team can evaluate how his body has tolerated or changed as a result of the chemotherapy. He’s had an electrocardiogram, and echocardiogram, ultrasounds, and x-rays to check everything from his testicles to his bone growth and heart function. We will go over the results with Theo’s team within the next month. Theo’s immune system has been recovering at lightning speed. It’s hard, but I’m trying not to stress and worry every time Theo gets a cut or has a runny nose. He is a warrior after all. One day while riding his bike, he took a hard fall and cut up his knee pretty bad. It looked as though martial arts class was going to be a struggle. Turns out, it wasn’t. It was no big deal at all. I told Theo after watching him perform in class, “Theo, you crushed class today!” As cool as a cucumber, he responded with, “like eating a bowl of mashed potatoes.”
Theo was done with his treatment. Things were getting “back to normal” and Theo was feeling great! We had been waiting for this moment for SO long. The day when cancer was a thing of the past. The END OF THERAPY was here! It didn’t feel real. Thinking about what Theo had just been through, remembering the hardest days of treatment was like remembering a story. Did that really happen? Was that only two years ago? The memories and feelings are there but they are distant, as if from a terrible nightmare. I didn’t know what the end of therapy would feel like. People have been asking, “how does it feel now that Theo’s done?” My response was always a generic, “GREAT!” with a big smile. But it didn’t feel different at all at first. It just felt like another day because Theo had been feeling good and that makes us happy. I kept waiting for this change, this ah-ha moment of incredible euphoria. Like I was Fraulein Maria singing “The Hills Are Alive” in the beautiful Austrian Alps. Well, that never happened. Instead, I cried. All of a sudden and without warning…. at dinner with friends, while eating a croissant, while talking to my parents, when hearing a favorite song. Two years later…the tears came flooding back. The dam broke and the uncontrollable sobbing returned. Anything could trigger my tears to start pouring out of my eyes. Ugh, I felt like a mess. But sometimes change is messy. Sometimes we hold things in to protect ourselves and others. I had been holding those tears in for two long years and finally, I let them go.
As each day passes, Theo’s memory of this journey will become foggier. He’ll move on to go to school, meet new friends, and have different and fun adventures of his own. Our hope is that this journey with cancer will never EVER have to be repeated. But the imprint it has left in our hearts and minds will remain with us forever and remind us of the pain cancer causes. We will always be aware of the many families and children who are still going through it. Remembering that there are so many who are not as fortunate as we are. The world is full of suffering and pain but also full of GOOD! We know that because we received so much love and support from our friends and family. We see the silver linings, the good in times of bad. So now, let us use our health and good fortune to help others who are not as fortunate as we are. It’s that plain and simple. Spread love and kindness and it will come back to you. I promise.
“Let’s ride this baby” -Theo Avila (said just before body surfing a big wave in Mexico)
It’s not too late to make a donation on my personal fundraising page to the Leukemia and Lymphoma Society. I will be participating in the Big Climb on March 27th. Please join me! All donations go towards blood cancer research, education and patient services. This is a great opportunity to help others in need and give back to those less fortunate. Theo has climbed mountains to get through therapy! The Big Climb is but a tiny fraction of what cancer patients have to go through. This is our chance to show how much we care and fight for a cure!
My page: http://www.llswa.org/goto/TheoStrong