This morning Deacon and I headed to the surgery center for his 7AM surgery. We had his first surgery at this same center, but with a different doctor. The doc that we have now is our 3rd doctor that we’ve seen and we really like him.
Taking Deacon to get his surgery done this morning was not as stressful as last time. Aaron stayed home with the other 3 kids and I took Deacon alone. When we first found out about RRP a mom told me that eventually we would get used to all the surgeries. I hate that this would happen, but even today only on surgery #2 I found myself knowing that things would be fine and it was kinda just another day.
Deacon was in surgery for a bit longer this time, which had me worried, but the doc said all was good. He said it didn’t look too bad, and there was no air way blockage, but just papilloma’s that were effecting his voice. He removed them and will send them off to pathology to determine the type of HPV virus that they are. From what I’ve read online most cases are HPV 6 and/or 11 and very few (1-2%) are type 16. HPV16 has a higher risk of one day becoming malignant, but from what I’ve read it is in very few cases.
Even though it’s rare to be HPV16, I still worry about this. I’m so thankful that this doctor is doing the testing of what type his are. The last doctor didn’t see the importance and as a mom I thought it was very important. We are praying against the number 16 and really praying for healing for our little boy.
Once again I was thrown off guard in the doctor’s office this week when he used the word “disease”. I just hate hearing that and each time I do it’s as if my stomach drops. Just saying “my son has a disease” is so hard for me. Who wants to ever have to say that?
The doctor confirmed the randomness and unpredictable nature of this disease again this week. He reminded us that there is so much unknown and to think we can ever have his surgery schedule figured out or how often they will return is not likely.
As of right now we have surgeries scheduled for every 2 months. I hate that for Deacon. He is such a trooper, but today I could tell that he was a little more anxious right before he went back. I’m sure he knew what was to come and he was not looking forward to it. The thing he hates the most is the IV in his hand when he wakes up and the thing he likes the most is the popsicle.
We have not shared with Deacon the extent of this disease, but after today I feel as though he deserves to know more than he knows. We are firm believers in not lying to your kids, but tell them as much as they need to know for their age. It is too much for me to explain HPV to Deacon, but I think he needs to know that this is not going away and he’ll have many surgeries over his lifetime.
Today after all the docs and nurses had come by to ask their questions, introduce themselves and talk to us Deacon crawled up in my lap and nestled his head against my chest. I could tell he was getting a bit anxious and I poured love and kisses on him. I prayed for him and reminded him that no matter where he is or how scared he is Jesus is always with him. He then looked at me and said “this isn’t going to work, I’m sick.” Oh my heart fell to the ground and I fought off the tears. You see we have never told Deacon about how these “bumps” will always return. We’ve never explained to him the awfulness of this disease that there is no cure for. We hadn’t told him about this upcoming surgery until Monday. I think he deserves to know more. In the next few weeks I think we’ll have a mom, dad and Deacon dinner somewhere and talk to him about it and reassure him as much as we can!
Thanks to all of you that prayed for my sweet boy today. I’m telling you he is so brave and so strong. I’m so proud and honored to be his mommy!
*He always wants to walk back by himself. No bed, wheelchair, wagon or being carried for my boy. He is brave!