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August 21, 2017

After the pediatrician says “tumor”

My son during his bone scan
My son during his bone scan

My son has a tumor in his leg.

He had been complaining about pain in his legs for a few months, and I chalked it up to growing pains or shin splints. I finally “found the time” to take him to the doctor a few weeks ago. An x-ray revealed a dense mass on the back side of his tibia.

The x-ray led to an MRI. I felt guilty. Why didn’t I act sooner? I watched as my 9-year-old son’s legs were banded together so he couldn’t move. Contrast dye was injected into his veins. The machine swallowed the lower half of his body, and it began its loud banging and whirring as hundreds of images were taken.

As hard as he tried to stay still, my son still wiggled. The technician grew frustrated. My son cried. The images would have to be retaken. I placed the noise headphones on my ears, placed one hand on his chest and used the other to stroke his hair for the next 30 minutes as the machine clanged and buzzed around him. The guilt hit hard.

Two days later, we met with an orthopedic surgeon. He reviewed the MRI disk and showed us the images. The tumor was right there. Egg shaped. Pressing into the bone marrow. He examined my son and spent several minutes asking him questions as he pressed on other bones in his body.

“It looks like an osteoid osteoma,” the doctor said. “But I’m not sure. I’d like to do a whole body bone scan to get a better look at things.”

Osteoid osteoma. Thank God he didn’t say osteosarcoma.

I know too much about cancers. While in college, I worked in the fund raising unit of St. Jude Children’s Hospital. At first, I was heartbroken to see the kids. However, after meeting several of them, my sadness was replaced by joy. Yes, I hated to see kids in pain, but these children exuded joy and hope. They celebrated LIFE and didn’t focus on what could happen down the road. I never had the opportunity to meet any of the parents, and consequently, I never knew the complex emotions they experienced.

Until it happened to my son.

The doctor couldn’t tell me if my son’s growth was benign or malignant. The bone scan would give him a better idea. I did a little research online. Dr. Google terrified me, but I found comfort in the websites of St. Jude and other children’s hospitals. If the tumor was an osteosarcoma or related bone cancer, it would light up on the bone scan. A benign growth was not as spectacular.

The waiting was brutal. The bone scan would be a week later. I asked friends and family to pray for my son, my family and the medical personnel he would encounter. A prayer request on Facebook led to more than 90 people committing to lift us up. One of my high school friends reached out to me. His daughter fought another form of cancer that first manifested as leg pain. He was able to encapsulate everything I was feeling – punched in the stomach, dizzy, scared, numb but also fierce, compassionate and determined. He offered to be my sounding board as I went through this grueling wait.

My son’s football buddies and all the coaches were praying. One prayer, from the team running back, made me smile with its innocence, “God, protect RH. If he can’t play football this year, I’m going to get creamed. I need him out there.”

A friend whose husband recently beat adult leukemia kept me in check. “You don’t know what you don’t know,” she said. “So stop trying to guess.”

I admit it. I was trying to know everything, and what I didn’t know made my mind go to bad places. I was making plans to donate my own marrow for my son. I worried about every “ouch” he uttered. I feared that a misstep would cause a fracture. I cried over his baby pictures. I held him as he slept. My husband was quiet, but I knew the fears were plaguing him as well.

During this time, my husband’s 107-year-old grandmother was admitted to the ICU.  My in-laws were upset. I heard their discussions about tests and medical procedures, and my mind wouldn’t let me empathize with their fear or pain. My thoughts kept going back to internal screams of, “None of this matters! My son has a tumor! He’s 9-years-old!” My selfishness was astounding. I felt guilty.

The day of the bone scan finally came. My husband took a chair in the imaging room, and my son whispered, “Will you be next to me the whole time?” Yes. Of course. I wouldn’t be anywhere else. The technicians injected the isotopes. We watched them blink across the screen as they made their way through the blood. The first scan took only a few minutes. We were to return in three hours for the whole body scan.

The second scan was a bit more frightening. The machine rested within an inch of my son’s face. I felt claustrophobic for him, but I kept my hand on his shoulder and told him stories to keep his mind occupied. He closed his eyes and breathed deeply. Slowly, the table moved and his head was eventually out. The machine scanned the rest of his body over the next 15 minutes. I placed my head by his side and stroked his hair the entire time. We talked about kids at school, our disobedient and high strung dogs, cartoons and  his ideas for his future. His life goal? Play in the NFL or become a Navy SEAL. I told him he’d be awesome at either one. A quick silent prayer went up, “Give him the chance to be awesome.”

We met with the orthopedic surgeon the next morning. He reviewed the images from the bone scan. A few areas lit up, but the doctor explained those were growth plates in the bones and they were supposed to look that way. He scanned down to the tibia. Nothing spectacular.  He scanned the other bones. Nothing.  I knew what that meant.

Benign! The tumor is benign! It’s limited to the tibia! My son does not have cancer!

We spoke with the doctor for another 15 minutes. He reassured us. The tumor is there, but it doesn’t appear to be growing. He tells us our son needs to come back in four months for another x-ray of the tibia – just to make sure everything is okay. He tells us the growth may go away on its own. I’m okay with everything he says. Actually, I’m feeling hopeful.

As far the leg pain my son experienced, the orthopedist suspects a mechanical issue with his knee. Mechanical, not biological. It’s based on the way his body is put together. We can try physical therapy and he suggests an MRI of the knee. Again, I feel hopeful.

My son looks wonderfully bored by the entire conversation. He asks the doctor if the MRI will involve more needles. No? He’s good with that. Professional athletes go through physical therapy. He’s good with that, too.

He is beautifully ignorant to the thoughts that have gone through my head during the last few weeks. With God’s help, I did nothing to tip my hand about the fears I was facing. He got on my Facebook account and thanked people for their prayers. He then went outside to play Navy SEALs with his friends.

My son has a tumor in his leg.

I have hope.

 

Update: This post originally ran during June 2013. My son’s tumor was eventually absorbed by the surrounding bone, and he remains cancer free. Ten months after this post, I was diagnosed with thyroid cancer. I am currently in treatment.


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10 Comments on After the pediatrician says “tumor”

  1. This, too, touched my heart. I, too, have heard that word from a pediatrician about my son. He, too, had a benign tumor. It was removed six and a half years ago. He’s doing well, and I don’t think he knew all the thoughts that went through my head at the time, either.

    I would like to meet you some day.

  2. Hi there-Found your blog through the Miley post(which was great). We have so many things in common! I have constant vertigo(but haven’t been diagnosed with menigers(sp). And my daughter had an osteoid osteoma when she was 5(she’s 12 now). She had it on her tibia as well. She had hers removed through ablasion(sp). The Drs told me that the tumor would continue to grow as her bones continued to grow and make a larger mass. If she’d been older and almost done growing they would’ve left it. They also told me they couldn’t tell for sure if it was cancerous until they biopsied it(although I’m sure you read that most are benign). Maybe technology has advanced more in the past 7 years and they can tell more. The surgery is pricey, though. She had to be hooked up to an MRI machine for the entire procedure. Thankfully, we had great insurance at the time! I’ve never heard of another child having it. They say that it usually happens in late teens. Anyways, good luck!

    • I definitely want to talk to you if we have to use ablation. He goes back in a few weeks for a recheck. I hope it remains benign and STOPS growing. If it continues to grow, it’s going to cause a lot more pain.

  3. Glad to hear of the happy news. At one point in my life, I was that young adolescent. At the age of 16 though, I had no idea what high grade astro cytoma on the brain stem meant though.

  4. Wow. So glad your boy is OK. My son tore a ligament in his ankle a few years ago, but the pain came and went, so we didn’t go to the doc until a year later. The MRI showed the tear, and I felt awful that we had not gone to the dr. sooner. He need surgery and PT, but is OK today. We moms have to forgive ourselves, don’t we? We make so many mistakes! Thank God kids are resilient.

  5. Hey Kim, you and I tend to have similar experiences. Our son Zac was also diagnosed with a benign tumor under his knee this past year. He’s so bony he looks like he has two left knees. I’m glad I found your blog. Interesting reading!

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