JJ’s Fight with Wilms Tumor

Written by Stacy Funderburke, JJ’s Mom 

“Lucky”.  That is the word my husband and I tossed back and forth a few nights ago when we got back from a 5-day hospital stay with our son, JJ.  We talked about how “lucky” we are that JJ has Wilm’s (a solid tumor that started growing on his left kidney).  We are “lucky” because JJ’s cancer is treatable with a relatively high 5-year survival rate.

When he was diagnosed on February 6, 2021, we didn’t feel very lucky.  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 (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.

The next few weeks were a whirlwind.  Two days after finding JJ’s tumor, they did a biopsy and port placement.  He would spend the first 35 days of his treatment at Levine.  Right when he would start to improve, there would be a new setback or life-threatening complication.  We still didn’t feel very lucky.

After finally getting to come back home on March 11th, JJ continued to improve at home.  He got to see his best friend (his sister) again for the first time in over a month.  He 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 a tumor thrombus that had been reaching into JJ’s heart.

JJ is now on a modified 35-week chemo regimen.  Every day he is getting a little stronger, a little better.  Some weeks it feels like we take two steps forward and one step back.  Despite it all, we know that JJ is going to be ok.  We are lucky that so far JJ has only had one neutropenic fever.  We’re lucky that he has only needed one transfusion during a routine clinic visit.  We know that the amazing team at Levine Children’s Hospital is working all things to allow our little boy to stay with us.  We know that God is healing him.  Every day that we get to see his beautiful smile is another day that we are lucky and blessed.