10.13.2019

How We Found Out Our Son Had Cancer...Again

This is story of how we discovered our son had cancer...for the second time.

teenage boy leaning on crutches


It was a Monday. He was home from school as he always is on Mondays. He wasn't feeling like himself. He was sleepy and lethargic after having a full night's rest. I thought perhaps he might be coming down with a cold.

We watched a movie in the morning, had lunch, and then watched a TV show. When the show was over, he stood up from the couch. And that's when it happened.

The First Symptom

He took a few steps and was just standing in the middle of the room, facing away from me. He started swaying and I asked him if he was okay. No response. I asked him again, "Luke, are you okay?" He stumbled backwards, fell on his bottom, looked up and said "No." I gulped back the intense fear that was rising inside of me. I knelt down, grabbed my phone, put 911 on dial and was waiting to press send. Those were some of the most heart-stopping seconds of my entire life. He quickly came around and by that time was shaking and scared, not sure of what had happened.  Neither was I. Although he has had dizziness in the past, it was never this bad. For the rest of the day, Luke rested in his room and was dizzy every time he tried to get up.

The following morning he felt good enough to go to school. On the way however, he was grimacing and trying to stretch his right leg out. I asked him what was wrong. I could see he was trying to work through the pain. He said his right leg ached and that it had been hurting for two weeks. Luke has a pretty high tolerance for pain so when he said that it had been hurting for two weeks, coupled with dizziness and near black out, I knew something wasn't right.

We drove right past his school and straight to the doctor's office.

The Primary Care Doctor

Because we had arrived before the pediatrician even opened, we were able to get in right away. His doctor did a thorough exam. She noted that his right leg was a little swollen and he should have an x-ray taken to make sure it wasn't broken or fractured. Luke had just run 7 miles on his leg that previous weekend and could rotate his ankle and wiggle his toes. That's when it started to dawn on me that this might be more than a running injury.

We've had so many false alarms before...a spot on his shoulder in 2017 that was a ganglion cyst, an enlarged spleen, prolonged low white blood cell counts for all of 2016...that we have learned to roll with the punches. It could be cancer, or it could be nothing.

While we were home and waiting for the results of the x-ray, Luke had another episode of near black-out and I called the nurse hotline to ask when I should take him to the E.R...they referred me back to his pediatrician for instructions. So I waited for the pediatrician to call back.


teenage boy laying in hospital bed

Later in the afternoon, I got the call that no parent ever wants to receive. "There is a new lesion on your son's tibia bone. You need to take him to the E.R. right now so they can draw blood work."

I had pulled over to the side of the road just after getting Luke a frappuccino from Starbucks when I received the call on my cell phone. Luke was in the car next to me. Having seen the way his ankle area was swollen, even with movement, I knew this was probably a recurrence of his osteosarcoma from late 2014. After speaking with the doctor, we immediately headed down to the children's hospital. Luke received bloodwork and a review of the x-ray from the on call oncologist. Thankfully, Luke was in good spirits. Aside from some mild bone pain, he was feeling okay. We were even joking around in the exam room.  Doctors found a 7cm tumor that started in the soft tissue and grew out of his right tibia bone, wrapping its way around the bone and causing significant deterioration. He wasn't allowed to walk on it for the first several weeks of treatment. After the trip to the emergency room, later that evening, we took Luke out to a fun dinner and just enjoyed being together.

teenage boy leaning on crutches

Diagnosis

Something most people don't know is that each cancer type has its own chemotherapy protocol with differences in medicines, dosages, and time in and out of the hospital. Some cancer treatments require chemotherapy, surgery, and/or radiation. In 2014, Luke's oncologist began treatment with a biopsy surgery, then chemotherapy, then another surgery, then chemotherapy again. Treatment spanned a period of about 10 months with much of that time receiving in-patient care at the children's hospital. Further testing revealed a nodule on his right lung and microscopic disease in his sinus. Osteosarcoma is not staged like other cancers. Staging a tumor is a way to describe a tumor's location in the body, its behavior, unique characteristics, etc.  For Osteosarcoma, there are no stages like 1,2,3 or 4.  There is only localized, metastatic, and recurrent. Metastatic osteosarcoma means that the cancer has spread to other parts of the body. So Luke's cancer diagnosis is Metastatic Osteosarcoma  Treatment would be different this time, and yet similar.

Having walked this scary and uncertain path before when Luke was much younger, we knew the stakes. We knew the length of the battle and we knew how hard it would be. But we were and still are, not without hope. We have so much hope.

To read more about our son's first cancer diagnosis, visit our post on How We Discovered Our Son Had Cancer

You might also like more posts from our family's cancer journey.




0 comments:

Post a Comment