Voices of Childhood Cancer: When Your Child Has a Number Attached to His Life Expectancy
Listen to the voices of childhood cancer this month. Every experience is different. These stories of hope and healing start with your compassion and generosity. Your donation helps us reach farther and move faster to develop improved treatments and promising cures for kids with rare cancers. Be childhood cancer aware. Take action. [Presented by Atrium Health Levine Children’s]
- Patient: JJ, 5 years old
- Cancer: Wilms Tumor
- Diagnosed: February 2021
- Treated At: Atrium Health Levine Children’s
Written by Stacy Funderburke, JJ’s Mom
JJ had been complaining of a stomach ache for a few days. He was playing and eating like he usually did, so I didn’t think anything of it until he started crying that his shoulder also hurt. That’s when we decided to have him checked out at our local urgent care (it was a Saturday). They sent us to Levine Children’s Hospital by ambulance. Once in the ER, the doctors ordered a CT scan.
I remember the doctors pulling us into another room, and one said they needed to get another chair. I knew then that it wasn’t good news. Doctors only tell you to sit down when it’s bad news. We were told there was an 11 cm mass on JJ’s kidney, along with innumerable masses in his liver and lungs. They said the scans were consistent with a stage IV cancer diagnosis, and they were waiting for the oncologist to come down from the 11th floor to meet with us. JJ was diagnosed with stage IV Wilms Tumor on February 6th, 2021.
JJ’s cancer, Wilm’s tumor, is a solid tumor resulting from kidney cells growing out of control. It is a malignant type of cancer and had already spread considerably around JJ’s abdomen before it was found. Abdominal tumors are scary because of the extra space for tumors to grow undetected. The doctors estimated that JJ’s had been growing for up to a year without any noticeable symptoms.
With the masses on JJ’s left kidney, the scans also showed his cancer had metastasized to his liver and lungs with an additional mass stretching through his inferior vena cava and into the right atrium of his heart.
JJ received a total of 12 weeks of pre-surgery chemo. The surgeons were able to safely remove his main tumor and kidney. They were also able to safely remove the tumor that had been reaching into JJ’s heart. The entire surgery was around 6.5 hours. He had a large incision going straight down his abdomen (almost 14 inches). JJ also successfully completed radiation.
Did you know that more than 95% of cancer survivors will have other significant health problems later in life (diagnosed before age 45)? Because kids are diagnosed before their bodies have finished growing, cancer can negatively affect developing organs. JJ has to get an ECHO every few weeks to measure his heart function. It had already declined after only 6 weeks of chemo. Because he only has one kidney, all of his meds are filtered through that one part. We still don’t know the lasting impact the chemo will have on his solitary kidney.
In the world of childhood cancer, the future is 5 years. Post-treatment outcomes are measured in 5 years. Survival rates and reoccurrence statistics are looked at in 5 years. And another fact for you… In 1955, the 5-year survival rate for children with cancer was only 20%. Thankfully today that number is estimated at around 88%. Some childhood cancers still have a survival rate of 0%. Unless your child has a number attached to his life expectancy, it’s hard to understand.
We’ve had a lot of people talk to us about strength, and how strong we’ve been through this. How strong Josh and I are, how strong JJ is. We’ve even had a few people tell us how God knew we could handle JJ’s diagnosis, and how He doesn’t give us anything too heavy to carry.
But this weight has definitely been too much for us to bear, and I think that’s part of the point. We were never made to carry this alone. Thankfully, we haven’t had to. We’ve been able to lean on our family, our community, and more importantly our faith. This weight is great, but we don’t bear it alone.
JJ is completing a 35-week chemotherapy regimen the last week of September with scans following on October 5th.
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VOICES OF CHILDHOOD CANCER