I have never talked about it extensively on my blogs, but I thought perhaps it was time to shine a small light on the condition he has because it's pretty rare and there's not a lot of awareness about it. I think there should be more awareness so that the doctors and researchers will be able to get more money for the studies that will enable them to find a better treatment for the disease, something better than what we have to do now.
The condition is Recurrent Respiratory Papillomatosis (RRP) and affects the airways. Growths recur in his airway that, left untreated, would block his airway so he wouldn't be able to breath. He was diagnosed at around age 1 after four months of misdiagnoses (allergies, asthma, etc) and went in for immediate surgery after the doctor who scoped him said he had about 98% airway blockage.
Currently there is no CURE for the disease, but it is treated periodically with a procedure where they take a laser and burn the growths off his vocal chords which is where he is primarily affected. So, in addition to it affecting his breathing, his speech is also impacted. The closer he gets to surgery the more hoarse he gets. Much of the time he can only speak in a whisper. As you can imagine this has the potential to cause some significant social issues for him with other children as well as adults.
As I said, this will be his 15th surgery in the 5 years since he has been diagnosed. (And his particular condition is moderate -- there are some children who have to go in for surgery every two weeks. And with pulmonary involvement this disease is fatal.) Fortunately, there is a new drug trial that has recently started and it looks very promising. I'm not sure it can be used to treat the RRP in the lungs, but it has been used for what Julius has. There was a recent segment on the news about it. It's positive and upbeat if you want to go watch it, although it did make my mother cry.
I've debated long and hard about whether or not to write this post. I share with you a lot of superficial minutia from our lives and try to make it funny and lighthearted. I am blessed to have a lot of great moments in my life. But no life, no matter how great or funny, is without its bumps in the road. This is one of our bumps. It is a part of me since I became a mother. It colors me and skews me. It doesn't DEFINE me, but it does influence our family in so many ways.
And so I thought it was fitting that I finally and officially share it with you. I've shared it on my family blog because on surgery day I try to do a real-time posting of the events of the day so I don't have to make a lot of calls to update different people with the same news multiple times per day. So, I invite you to follow along as friends and family today over at Observations from an Ozark Life where you will see the chaos of surgery day in sort-of-real-time.
To learn more about RRP, check out the RRP Foundation's web site.
We'll be back to the regularly scheduled programming on Friday. See you then!
Update: We're back home and Julius did great. The amount of papillomas that he has is small compared to what he's had in the past. So that is awesome news! The unfortunate thing is he's built up a significant amount of scar tissue which is causing some problems. The doctor cut through some of the tissue to try to separate the vocal chords and put on a topical solution that is supposed to help inhibit more tissue growth and hopefully keep the scar tissue from sticking back together again. He says it will, but this might slow it down. Eventually when he gets older we'll have to deal with some secondary issues that have come up from the scar tissue, but he says it's not time yet for that. So, we wait. but in the meantime -- no new tissue is infiltrated and there is no bronchial involvment. WOO! We declare ourselves victorious for this round and the doc says we might even be able to push him to six month intervals. Here's hoping we make it to January. Thanks for all your loving support, prayers and well wishes. We appreciate them IMMENSELY.