January 3, 2011, at 5 PM, I stood over the bed watching as his little body breathed, in and out, then in and shudder. I was glad he had made it out of surgery alive and was just waiting for him to wake up so we could go home.
It had been a long day already. We had arrived at 7 that morning, where they started an IV on his small arm. He cried, but I cry too anytime I am poked with a needle. We sat for hours waiting for an available opportunity for the operating room to be free. It was hard for mom to not eat all day, let alone a 3 year old. But he was so sick and listless that he didn’t even make a fuss. Finally, they took him back at about 4 PM, while he cried for me.
“Mommy. Mooommmmmyyy,” he sobbed while being wheeled down the hall.
My heart broke. My little boy was going into an operating room for a bone marrow biopsy. I only hoped the news would be good. It had to be good, right?
I looked back down at my little sleeping child and rubbed his back softly as he continued breathing deeply, the chirps of hospital machines in the background. He wasn’t the only child in the recovery room, but he was certainly the littlest at that time of day. His body was so tiny compared to the hospital bed he was on; the oxygen mask covering most of his face. This was my rough-and-tumble football-playing boy looking frail in a hospital bed. It just wasn’t possible.
The craziness had started the October before. He had fallen off the bed and hurt his hip. I took him in, but nothing showed up wrong on the x-ray. They sent us home with instructions of tylenol and bed rest. The told us it would be a few days and he would get better. Well, he did and he didn’t. Yes, the leg seemed to heal just fine, but every once in a while, he would limp. Then he would get sudden fever spikes, with no explainable reason. I finally took him to an orthopedic surgeon, our first appointment not until December.
He shook and cried out in the bed. The nurse shooshed him and took off the oxygen mask. The blood pressure cuff on his right leg tightened up again and then slowly released it’s squeeze as it calculated the numbers. He turned his head to the left. plopping it down on the pillow, then immediately did the same thing back to the right. He took another deep shuddering breath and calmed back down.
I know how rough waking up from anesthesia is. You have this total loss of control feel; you’re conscious, yet unconscious. I can only imagine how hard it was on this little boy, not knowing what was happening to him. I rubbed him on the back again as the nurse continued to write in his chart.
The orthopedic doctor looked at the boy, moving his leg this way and that, seeing about the mobility in the hip socket. He didn’t seem too concerned until I told him about the fever spikes. He told me he wanted an MRI right away. In the middle of December, it is very hard to get anything done, but we managed to get the last MRI appointment available in San Antonio.
If you have ever had an MRI, you know how loud and scary they are. Now imagine you are only 3. I literally had to lay across the back of the MRI machine and hold his arms through the tube. Despite his crying and fear, he laid still enough for them to get good pictures of his hips. Unfortunately, the orthopedic surgeon was now on vacation, and the results would have to wait until after the new year.
“He’s going to be just fine,” a voice broke me out of my reverie.
“Excuse me?” I looked up to see an elderly nurse standing next to me.
“This is the best hospital for children. They will know how to get him fixed up and playing again.”
“I hope so.” I looked back down at my still sleeping child. The tears started to flow from my eyes as the stress of the past few days finally broke through.
The nurse hugged me. “Don’t you worry mija. God will take care of him and you.”
I continued to cry as I thought about our journey to this point. The past few days had really thrown our lives into chaos.
December 29th, the boy was playing at home with his grandma and grandpa, wearing the new socks they had gotten for him. He started to run, like all little boys do, and slipped on the tile floor. He fell, smashing back down on the hip he had injured before. My father got him on the couch, gave him some tylenol and put some ice on the hip. When I came home, little man was still laying in the same spot. His eyes were glassy from either pain or fever. I held him and gave him more tylenol. By the end of the evening, he seemed to be a lot better.
December 30th, I got a call at work. His fever was up to 103 and even with tylenol and motrin, it wouldn’t go down. I left and took him to the pediatric urgent care by my house. The doctor there moved his hip, he screamed, and she immediately sent up to the emergency room. There, they did all sorts of x-rays and ultrasounds and saw a mass surrounding his hips. Since they were really short staffed, they sent us in an ambulance to the children’s hospital downtown.
He was instantly admitted to the hospital and placed on the floor for really sick kids with no diagnosis. It’s really scary that such a floor even exists. It’s even scarier that it was mostly full. That night, I got no sleep as they did x-rays, MRI’s, blood tests, and everything else. I lost track of all they did. I lost track of who we saw, I lost track of what they said.
Dr. Aune came in to the recovery room. He had brought someone else with him. We stood there for a moment overlooking the small child who still lay sleeping in the bed. He finally spoke up.
“We got the test results back from the pathology department.”
I looked at him hopeful. I had met him just a few days before when he had come in with the boy’s MRI results. Dr. Aune had suggested Langerhans Cell Histocytosis as a possible explanation for the boy’s condition. It’s a serious disease needing some chemo, but it wasn’t life threatening. This was the doctor that had made us come in for the bone marrow biopsy. He was here to tell me we were going to be fine and that I could take the boy home for dinner. Right?
He continued, “This is Leanne Embry, the hospital psychologist and counselor for the hematology/oncology department.”
I shook her hand and smiled at her.
“I’m afraid the diagnosis isn’t good. The cells came back as lymphoblastic leukemia cells.”
The floor dropped out from under me and I could fell Dr. Embry holding me in a strong embrace. Tears flowed freely as I sobbed over the diagnosis.
Cancer. The ultimate horrible death sentence. My son. My son has cancer.
It has been almost four years since that day. We have discovered many things along our journey. Leukemia is not the death sentence it used to be. Now most children survive with very few having any sort of re-occurrence. Cancer in children isn’t as rare as you might think. There are a lot of kids who have some form of cancer or another; some of them not near as lucky as my son.
Going to the hospital has become commonplace for us. We know all the doctors, all the nurses, all the day surgery staff, all the front desk people, and even the cafeteria people know us. These people become part of your extended family and you rely heavily on them to help you get through the rough times.
My son is now done with chemotherapy and all other cancer related drugs. He took his last pill on September 28, 2014. I cannot call him cancer free at this point. I have to wait another year and a half for that day. Until then, he still goes to the hospital clinic once a month to make sure that his blood counts are normal and that no other masses are found on his body.
His port-a-cath where they dispensed the chemo meds straight into his veins has been removed, and not the threat of infection is slim. I no longer have to rush him to the hospital for any fever. His ability to fight infection on his own has returned, and now the common cold is much less scary (though still super annoying).
And while he has made it through the chemotherapy, the invisible scars are still there. My son has terrible ADHD. The chemo has eaten away at some of his brain, leaving what is called white matter leakage. Sadly, this is considered a normal side effect of the methotrexate that was injected into his spinal fluid on a regular basis. Also, the constant steroid use has given him mood swings which may or may not go away over the next year.
While I am thankful that modern medicine has kept my son alive and living throughout the whole cancer ordeal, it’s so disheartening to think his life will never be normal. He will always struggle with development, he will always struggle with rage, he will always struggle with attention deficiency. He will always have to be vigilant in watching out for other form of cancer since he will be twice as likely as anyone else to get a cancer again.
Someone once whined, “Why do all the child cancer victims get the attention?” My answer was simple, “Because they don’t have any idea what a normal life is. Nor will they ever.” While I am super sympathetic to anyone who has to deal with cancer, it’s one thing to get it when you are older, you have lived life. A child with cancer is still just experiencing.
No one deserves to have cancer, especially a child. Let’s give these kids a fighting chance. Please consider donating to your local children’s hospital oncology center. Money isn’t the only thing needed. Sometimes, they just need a friendly face.
Monsters in fiction will never touch the horror my son and I have experienced. Real life has been much scarier. But we still love our vampires, zombies, demons and ghosts!