Last Friday Deacon had his third surgery to remove the pappiloma's from his vocal cords. He was as usual a super champ and even brought Dr. Eskew a page he had colored for him that morning.
The doctor loved it and was super sweet to Deacon about it. I figure since we're going to be seeing him often we might as well get to know him and bring him sweet gifts each time we have a surgery! I love when doctors start to see you more as a person that just as a patient. That's my goal with having Deacon color him pictures and flash his sweet smile at him!!! I think it's working.
Prior to the surgery the doc came by to chat with us and I was able to ask him if he received the lab reports from the last surgery. I had called about a week after surgery #2 and they hadn't and I never called back. I kinda forgot, but I also was scared of getting bad news. You see there are lots of different numbers of HPV that it can be. I don't understand it at all, but I do know that there are low risk numbers and high risk numbers. We obviously were praying for a low risk numbers. The risk is that these “bumps” could eventually turn malignant.
The report wasn't in his chart so the doc went and tracked it down and he told me that Deacon's HPV typing is one of the low risk types. OH PRAISE GOD. I breathed a huge sigh of relief. He then proceeded to remind me that there is still a risk, but it is low and he has never personally had a patient with low risk turn malignant. After that he told me that he did lose a 14 year old patient at one time that had a high risk type and indeed it turned malignant and he passed away. Oh my heart broke for that family and I began to praise God even more in my heart for our good news.
The surgery went fabulous and the doctor told me that it looked good and they were not at this moment growing at an aggressive rate. We have already schedule the next surgery for June 25, and if it looks as good then as it did this time we'll go longer before the next one.
He reminded me several times that this disease is very unpredictable. It could speed up or slow down at any time and for reasons that doctors have no clue about. He also reminded me that this disease is so rare and unresearched that they are not even 100% sure of why some kids get it and some don't.
We are thankful for our doctor and the fabulous nurses that we have met these past three times at the surgery center. They make our surgery days much more pleasant. Please continue to pray for Deacon and the healing of his body.
So glad to hear that he has the low risk type. Praise the Lord! I can’t imagine how relieved you and Aaron are.
Glad each step is going well. Praying for the growth each time to slow and go away.
Do you know if this disease is genetic or not? I ask because my dad is a molecular biologist and is doing a lot of research right now about genetic diseases in children, ever since my brother was diagnosed with stargards disease, which is a genetic disease that will cause him to lose his vision at an unpredictable rate, but right now it seems its going pretty quickly… Anyways he’s collaborating with a research group at UCLA that is decoding the mutated genes involved in these diseases and if what Deacon has is genetic, I’m sure they would love to get some samples (its just a cheek swab that you send them).