My son, Brodey, is an overcomer. He has faced medical obstacle after medical obstacle from the time he was a baby. Addressing one medical issue at a time as they arise and yet he is always joyous and quick to share his medical adventures. But our most recent medical adventure is one that I have felt protective over but yet one that should be talked about despite my feelings. Nothing good comes from fear, at least for me.
Brodey was diagnosed with juvenile papillomatosis. It's also known as juvenile laryngeal papillomatosis and reocurrant respitory papilloma. You may be asking yourself "what's that?".
It's a disease that causes growths to form in the larnyx (Brodey's vocal cords) and the respitory tract, that obstructs ones ability to speak and even breath. It's caused by the papilloma virus. This virus is more commonly known as HPV. You may be asking how a kid could possibly get something that is so commonly known to produce abnormal/cancerous cell change on the cervix of a woman.
Brodey got it from me...He was infected during pregnancy. It was believed that babies contracted it in the birthing canal but further study has shown that even babies born via c-section have also been infected. This is VERY rare.
I had read that there are only 20,000 cases reported. Now if that's accurate, i don't know. I also read that 30% of babies born to mothers with hpv are infected but 1% of those children suffer. I don't know how accurate that is either but was interesting to read. I was told by Brodey's pediatrics specialist that it's been found that 1st born children are the ones that are affected.
I felt guilt. I felt that had I made better life choices that I would not have contracted hpv and as a result would not have infected my child with this disease. I have made strides in coming to terms with this but to say that it's not on my mind would be a lie. God is granting me peace daily and for that I am grateful. HPV is unfortunately common but Brodey's disease is not.
You may have seen on Instagram, if you follow me, that Brodey had surgery a week ago. This surgery was to laser remove the growths that formed on his vocal cords and scope his respitory tract to ensure that it had not spread. This surgery has given him vocal restoration and allowed for better breathing since the growths narrowed his airway drastically. This is how we treat the disease. Surgery. It's not cosmetic. It's life or death. These growths can/will return and may not stay isolated to his vocal cords.
He has been put on an antacid as a precautionary measure to help reduce damage and irritation caused by possible silent acid reflux. He has also been attending speech therapy to help with proper voice use to reduce strain and stress on his vocal cords. These two things have shown to aid in the slowing down of regrowth. I will however always be hopeful that there will not be reoccurance though the odds are stacked against us.
How is Brodey today? Well, he is great! He anxiously returned back to school today to share with his classmates and staff his new voice and his experience at Denver Children's hospital. People noticed an immediate difference when he walked through the doors and started talking. It was like bringing in a new kid.
Brodey has always had a voice but this disease has kept him from using it. The breathy, raspy, hoarse, projectionless tone quality was far from a voice. It was an indication that help was needed. It has kept him from being heard. It has kept him from being understood. It has brought massive frustration when he would try to share something and got tired of repeating himself. It has brought unwanted attention to how he sounds and self consciousness. It has brought explanations that at one point weren't even accurate because he had been misdiagnosed locally.
Now we have hope because we know what it is. We know how to treat it. We can educate as we come educated and we can bring a voice to a disease that chronically takes the voice of those who have it.
I thank God that he provided us with an amazing medical team and hope for the future. I thank God for his faithfulness in providing us with the resources needed and the people to support us through it all. I thank God for giving me a family that made themselves available for whatever needs we had. I thank God for friends that did the same. I thank God for the amazing work that's been done in my son and will be done in his coming days. I thank God for his many many many blessings in the midst of the storm. Without him I'd have no hope and he has restored it fully.
Thank you, God ❤️
-"C"
