Colt’s health had been declining for more than a month. He was experiencing continually worsening symptoms including back and leg pain, and chronic low-grade fevers. Most notably, Colt seemed to have lost the vital energy and joy in living that had always made him such a delightful kid to be around. Doctors and nurses initially diagnosed him with the flu, but as time went on, we knew there must be something else going on. On what seemed to be a normal Wednesday afternoon we were told the unimaginable diagnosis that our precious child had Stage 4 Neuroblastoma cancer. I had never heard of the condition, but it turns out to be a particularly ominous type of cancer affecting children between conception and 5 years of age.
Colten has always been able to light up a room with his energy, natural charm, and big blue eyes. His bashful crooked smile never failed to captivate everyone who ever came into even casual contact with him. There was nothing in our lives that could have prepared us for this news, or the journey we were now embarking on.
By the time the diagnosis was confirmed, Colt had been ill for a month. The symptoms began January 10th. We were on a family outing at a park near our home playing with friends. Colt had been riding around on his Big Wheel with his little buddies when suddenly, with no warning, he declared that he was freezing cold and that his legs ached. He managed to ride back to the house, but then went straight to the couch, collapsed on it, and fell fast asleep. Our little boy was not well. Over the next few days, he continued to have fevers that varied between 101-103 degrees. His complexion was extremely pale.
A few days later, however, Colt appeared to be recovering to the point that I let him go to his preschool a few times. However, he really wasn’t healthy. His temperature would be normal in the morning but would be elevated again by the afternoon. He was still pale and did not have much of an appetite. After ten days, or so, of that we took him to his pediatrician, Dr. Garcia. He tried to rule out the flu and wondered if he had some kind of viral infection.
The symptoms persisted and it was difficult to watch our young child struggle with fever, back and leg pains, and loss of energy, and problems with digestion. I took him back to the doctor on two other occasions and he ran several lab tests that continued to rule out the “usual suspects” including mononucleosis and flu. He was mildly anemic but his white blood count was fine and there were no signs of infection.
Twenty-five days following the first appearance of symptoms, I was on the phone describing to his doctor how the fevers had increased in frequency and that his pain had spread from his hip to his knee. Even though the next day was Saturday, and the clinic was closed, the doctor made a special appointment. By that time, Colt was hobbling around as though he were an old man. He had lost more than six pounds, which for a skinny little 4-year-old is a huge percentage of body weight to lose! With no evidence revealing how to treat this, the doctor decided it was time to consult a hemoglobin specialist to make sure we were not missing something. He called him personally in an effort to expedite the process. That turned out to be a life-saving recommendation.
The specialist, Dr. Smith, who is a John Muir doctor and affiliated with UCSF, said we should error on the side of caution and immediately take Colt to UCSF Benioff Children’s Hospital. When we arrived, the medical staff was expecting us and directed us to Oncology, which turned out to have some of the nicest doctors I ever met. They declared the fevers and leg pains symptomatic of one of three things: an infection, an autoimmune disease, or cancer. They reassured us that, cancer was actually the least likely of the three possibilities.
They admitted Colt and immediately began a series of tests. Colten was a terrified little boy, trembling when anyone walked into his room and at the thought of being “poked.” He had never been hospitalized in his life! One of the tests was an ultra sound examination, which revealed a mass on his kidney. Suddenly we were confronting the terrible reality that the least likely of the three possible causes was, in fact, the culprit. A urine sample, MIBG scan, and a bone marrow biopsy confirmed our little boy had cancer.
It took a few days for us to get our minds around the altered state that our lives had suddenly been plunged into. Even in the depths of our initial despair, however, there were some things to be thankful for. In the midst of our sorrow and pain, we were able to be grateful for the chain of events that had led us to those incredible UCSF specialists. If our pediatrician hadn’t trusted a mother’s intuition that something was not right with her little boy the situation might have been unimaginable. If we hadn’t caught it when we did (taking a deep breath at this point), Colt would have only survived a few more months. Just thinking about it is enough to send chills down my spine and nausea to my stomach.
However, the good news is that we did catch it! The tumor was 2.75 inches in diameter, which made it a little larger than a baseball. They also found traces of the cancer in his hips, a leg, spine, ribs, and shoulders, which were areas that could easily be reached by chemotherapy. Neuroblastoma is a very aggressive cancer. It is common for the condition to be unnoticed until it has reached stage 4.
Neuroblastoma is not genetic, or based upon environment or diet. Poor little Colt had just had the worst luck!
However, Colt also had some wonderfully good luck in that he is being treated at the new UCSF hospital, which has some of the top Neuroblastoma specialists in the world!
The good things that happened and the reassurances that we received were rays of light in a world that had become dark. We were terrified about the awful thing that was happening to our beloved son and continue to to overwhelm us.
TAKING THE BATTLE TO THE ENEMY
The course of our lives had moved in a difficult direction, but we decided from the beginning that Colt would never think of himself as a cancer victim. Even though he was only four years old, little Colt had been born with the spirit of a champion and following infancy had, embraced super-hero images, especially the big guys, like the Incredible Hulk. In fact, he had been nicknamed Hulken by a little buddy, Jacob Barajas who is a year younger than Colt. We met up at the park one day. Colt had his Hulk shirt on and doing the usual “hulk smash” yell. Jacob’s mom, Jen, told Jacob “There is Colten,” and Jacob said, “Hulken.” No matter how many times she tried to correct him he kept saying, “no, that’s Hulken!”
So during the dark days following the diagnosis, rather than treating the cancer as some disaster that would overwhelm us, we decided to treat it as an enemy and that Mighty Hulken would go into battle and would ultimately smash the enemy, crushing him into oblivion. Each procedure or treatment would be a battle in which Hulken could display his power by denying the ability of the event to push him down. “Colten Smash!!!” became our cry of victory over each small success. There was more laughter than tears; more smiles than pain. Everyone began to even comment on how fun and cheerful Colt’s room became.
Then something truly amazing took place. Mighty Hulken’s fight turned into all-out warfare because a mighty army of supporters suddenly arose who were prepared to follow him into this battle. A Facebook Group, Team Hulken, was started up and almost immediately, it seems, had more than 1,500 “warriors” — committed to fighting at Colt’s side by sending encouraging messages, enlisting other people’s help, sponsoring festivals and sales, donating goods and services to raise support money, and generally “being there” with us. Colt received boxes filled with hundreds of cards, cash donations, games, and toys. Early in the hospitalization, Tricia Piquero, publisher of the 110° and 86° Magazines that I design, brought a large stack of presents for Colt and even for his older brother Cameron that she had gathered as gifts from a Walnut Creek toy store called 5 Little Monkeys. They also donated some books to the other kids at the hospital. We draw strength from the innumerable host of supporters; he started to refer to them as his “baby army of smashers,” which made me smile.
We are surrounded by a host of people who are sharing our tears and sorrow over Colt’s weakness and pain. However, they also join in our laughter and joy along the way. Through a steady stream of pictures taken on my iPhone, they share my delight over incredible images, such as the ones showing our little warrior in one of his super-hero outfits, with a comically stern expression on his face, bravely shaking his tiny fist at the terrible Enemy that is causing him such pain. We call Chemotherapy “Super Medicine.” I made a Hulk-style case to put the Chemo bag in that the nurses happily use. Colt has business cards we call “Share Cards” that he proudly hands out while he welcomes doctors, nurses, adults, kids, and even dogs to join Team Hulken. Tim and I also finished a comic to explain to Colt how even super heroes need to be “powered up” with Super Medicine and that he is a Chosen One who will come out stronger, and even more “super” when this is over. An intense phase of the battle is approaching and we know the comic book will better prepare him by making him feel empowered in the fight. We finished it just in time for our new friend, Kolton, who is also fighting this disease, to read before he enters the MIBG Radiation Phase.
You would not believe smiling and cheerful Colt is the same boy who in February could barely walk into UCSF under his own power. Not only can he now run, and “bust-a-move,” he has become Dr. Colten, giving all the nurses their shots! He says, “If you take my blood pressure then I get to give you 45 shots!” He shows off his Kung Fu moves on the staff in the wee hours of the night. You don’t want to make him angry because he will glare at you with his Hulk-like expression and say, “You won’t like me when I am angry. My eyes are turning green!” The nurses always high tail it out of the room, hiding their smiles from the little monster. The courage and good cheer of our tough little guy helps drive from our own hearts the dark fears that have taken possession of so many of our thoughts and caused so many sleepless hours.
My husband Tim and I do our best to adjust to our new norm. Tim is always by my side and often playing with Colt and raising his spirits with fun games that appeal to the his imaginations. He and his brother Cameron are lucky to have a dad that loves to play!
Jennifer and Joseph Barajas along with Chase Clark and John Lanier became some of the field commanders in the war we are fighting when they created the Colten Smash t-shirts for our army of “Smashers.” Jennifer made a brightly decorated drop-box at Willy’s Bagels & Blends for people to drop cards or letters. Colt loves mail, especially the hulk pictures and keeps them all!
My cherished friend and neighbor Theresa Addison became another field commander in our war. She recruited a number of selfless volunteers to spread awareness and sell the Hulken Smash Gear back in March at In-Shape’s open house event. Jill Divine and Julia Kennel had the entire staff at In-Shape Health Club armed in their Colten Smash shirts supporting their kids club member. Theresa set up a Go Fund Me Account with the domain name www.teamhulken.org, and organized a Team Hulken MEAL TRAIN. Her daughter Olivia, who works with Heritage Video Productions, produced a professional quality Avengers vs. Cancer video about Colten’s battle. Tricia, Theresa, Caroline Robertson, and Angie Rhodes Harper have formed themselves into a “dream team” putting together ideas for fundraising events. The big event is coming up on May 17th, and they anticipate it to be Epic! Check out the website and the informational flyer on page 18.
An amazing number of friends and family members have helped with laundry, cleaning our house, picking up meals, and dropping off groceries. We are so grateful to have a family that has been by our side every step of this journey, and have even stayed with Cameron at our house on the nights neither of us could be there. For every person who has helped us in one of these ways, I sensed there were dozens more who would have stepped up to help, if needed. My business partner and close friend Carly Cornejo stepped up immediately to take over the job of laying out both of the magazines.
I think almost all of the warriors in Colt’s army of supporters pray for him constantly. Tricia Piquero sent out a perfectly worded note about the subject,
“I believe in the power of prayer, the power of the universe, manifesting, and love, whatever it is you believe in, please send it Colt’s way.”
“Good things come out of bad things,” they say. Colt’s battle is becoming a source of hope and comfort for a lot of people. Stephanie Bellow wrote a note about Colten that expressed the feelings of a lot of people: “His little smile seriously makes my day better every time I see it. Despite what he is going through he is still the cutest, strongest little guy!” Then she added, “The moment I think I’m having a bad day I think of him and suddenly my bad day seems silly! What a little inspiration he is!”
All of us have been fundamentally changed by the battle we are fighting. We’re more engaged in the important things of life than ever would have been possible without Neuroblastoma — more conscious of the importance of relationships, more aware of the love that others have for us, and we for them. Most of all, we have learned the power of the human spirit to confront and defeat the worst that life can send. We don’t know, of course, what the future holds, but we know for sure that whatever happens, we are going to Hulk Smash through it! Defeat is never an option.