Story about Recurrent Respiratory Papillomatosis .

Alyvia

May 29, 2017


My daughter was very quit when she was born.  We took her to a local ENT in Evansville, IN where we live.  The Dr said nothing was wrong with her, after many and many of scopes.  There was definitely something going on, as we couldn't even hear her even cry.  I asked for a referral to Riley hospital in Indianapolis, IN.  So.. went to to Riley and meet an ENT named Dr Matt.   He scoped her in the office that day, and did an emergency surgery that morning.  She was so bad, her airway was almost blocked.  After recovery, we headed home, not knowing anything about this disease, and had many of questions.   As soon as I got home, I googled everything I possibly could.  Not knowing, how, what, why me, and everything else that runs through a mothers mind.  We went back in 6 weeks for another surgery.  And every 4 to 6 weeks for about an year and half.  I asked Dr Matt if there was anything possible to slow this down, and he said there was 2 drugs he could try.  One of the drugs would take the  estrogen out of her, and the other had shown to cause kidney damage years ago.  Well Alyvia was born with 1 kidney.  I knew something had to changed, cause I hated putting Alyvia through all that  anesthetic.   So after researching it, I call Dr Matt's office and told him we were ready to try Cidofovir.   At her 17th surgery we tried Cidofovir, and Dr Matt told me, "this drug may work, or it could do nothing at all", he also told us that if the drug worked for her, it would maybe be every 6 months instead of every 6 weeks.  That's was still a blessing to know we would only have to go twice a year.  We left and hoped and prayed for the best.  Little did I know then, that I would be sitting here writing this article, 12 years after her first injection of   Cidofovir.  My daughter has been in remission since April 2005. Alyvia has a very aggressive case, and after only 1 injection of Cidofovir, she has been remission.  Alyvia's first surgery was at 8 months, and her last one being at 3 years old. 17 surgeries and she is a healthy 14 year old that lives a normal life.  Her voice is softer than most people, but to me, her voice is the most beautiful thing I've ever heard.  She doesn't remember any of her surgeries, or nothing that she has ever had to go through.  As for me, being mom, it is something I will NEVER forget.  Nobody knows anything about remission with RRP, or if there is really a real thing.  But I hope this stays away from Alyvia forever.  She was given her gardasil shots at 10 years old, as Dr Matt told me, as soon as she was able to get them, she should.  Alyvia is my oldest child and was delivered with a normal birth. 

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