Last Tuesday I picked Deacon up from school a tad bit early to take him to a doctor's appointment. Little did I know that his life would change from this one appointment.
If you know our Deacon you know that he has a sweet, raspy, quiet little voice. It's kinda his trademark. It has always defined him. He is Deacon and has a raspy voice. Sometimes we even have him hold up his hand move his pointer finger up and down while saying “red rum, red rum”. It's just so dang cute. We have never wondered if anything was wrong with him, but just knew that God had made his voice different and we loved it. Until recently, when he has been getting quieter and quieter. His voice sounds as though he is straining to talk and we find ourselves watching his lips lots to figure out what he is saying.
At his four year visit I mentioned to our pediatrician (whom I love) that we were getting concerned b/c it was getting worse and not sure if it was something to worry about or not. She recommended we see an ENT whenever it was convenient. I called 2 weeks later to make an appointment for after Christmas and they said they could get us in the next day.
That was last Tuesday. I have been putting off this post for 6 days now. In an email to some friends I told them that it is hard to write about this, b/c you feel as though if you put it out there than indeed it is true. I wondered if I never told anyone if it would make it less true. Needles to say it doesn't work that way.
When we saw the doctor that day, he diagnosed Deacon with a disease called RRP, which stands for Recurrent Respiratory Papillomatosis. RRP causes tumor-like lesions to grow on the vocal chords and the treatment for them is removal. This is a disease that there is no cure for, and without treatment it becomes very serious.
Deacon is scheduled to have his first surgery a week from today on the 14th. This will be the first of many, since the only treatment is to remove the papillomas each time the return, and they will always return. I have met some moms who their children have had 10-15 surgeries over 4 years since diagnosis. This is a hard disease to live with and there are some side effects that we are hopeful we won't endure. After the surgery they will biopsy the paps that they remove and we'll know more about how bad it was in there (although the first doc we saw said it was heavily diseased by looking through the scope), and when our doctor would like to see us again. He could tell us to come back in 3 months or he could say let's just schedule another surgery in 6 weeks. We'll need to see how fast they grow back.
We are praying against them spreading to his lungs and trachea for this could be life threatening. We are praying against them ever turning malignant for that equals cancer. We are praying that he will one day grow out of this disease (our latest doctor mentioned this and although no one else has mentioned this and we haven't read it anywhere, we are still praying it!). We are praying that they grow back at a very slow rate. We are praying for understanding from friends and that he will not endure teasing for his “different” voice the rest of his life. We are praying against scar tissue building up. We are praying that our doctor has very steady hands next week as he scraps away the bad stuff and doesn't mess up his vocal chords with permanent damage. We are praying that Deacon's heart and mind be guarded from fear, anxiety, sadness or anything other feeling that is NOT OF GOD.
This has been hard for us. To hear someone say that your child has a disease is something no one wants to hear. To hear someone tell you that your child will endure many many surgeries in their lifetime is not something you want to hear.
I am so saddened by this. I cry probably once a day about this. It's not big cries, but just random crying b/c my sweet Deacon is not “normal” in the eyes of society, but then again, none of us are!!!
As hard as this is, I honestly am trusting God to do some big things through this. I know he will. Story coming home and me seeing God's hand through all of that has changed my thinking in some ways. I am getting a bigger view of my God. A God that created Deacon's body is a God that loves him, adores him and wants the best for him. I prayed today that God would use this that we see as bad ONLY FOR GOOD in Deacon's life, our lives and any other persons lives that we might tell about this. God had big plans for Deacon's life before this news and he STILL HAS BIG BIG BIG PLANS for Deacon's life. If you've met my Deacon then you know that he is pretty special and that God will use him for big things one day.
our family is joining yours in prayer!
patsy and i are praying as well. our hearts hurt for him and you guys. enough already! we can totally relate to the pain you feel as you watch your child struggle and worry about them.
Jamie, I am praying and trusting God for a miracle. Bless you all.
WOW..Praying so hard for all of you as you endure this, and help Deacon go thru it as well.
Remind him everyday, that Normal-is WAY Overrated!
Praying for your adorable Deacon and for incredible strength for you and Aaron. I know your mommy heart just aches over this. We just want to fix everything for our little ones. I am praying for peace for your anxious heart.
Love you guys:)
I am crying for, hopeful for, and praying for you all.
I am praying for you guys and for your sweet little Deacon as well. I am praying that the surgery will be a fantastic success and that Deacon will be a statistical miracle – that he will grow out of this, that the fight with these little papillomas will be incredibly successful and that surgeries will be limited. I pray for peace for you and Aaron. And I wonder at our incredible God who before the beginning of time chose you guys to be Deacon’s parents to help advocate for him with this. Jesus, please give comfort, healing, wisdom and above all be glorified. Like Jamie said – you are BIGGER than we can even fathom. Please be HUGE in even this. Please comfort sweet Deacon – shield his mind and heart and bind the enemy.
wow! i will for sure be praying! i can only imagine how hard this must be for you. please let me know if you need anything. mean it.
Praying for Deacon and the family.
My heart aches for you…
Jamie, I am so sorry – I was imagining receiving a similar diagnosis about my girl and my eyes instantly teared up. It must be hard. I will be praying for that little guy! And the rest of you, too. 🙂
Praying that God will hold the Dr’s hand steady and he will get the polps. And that God will seal them so that they never grow back!!!
Oh how I love that boy and his precious voice! He is an absolute delight in Jumping Stones and I will be praying for that sweet child. Maybe Ella could stop by after surgery and cheer him up with a card or toy! (or a shake if allowed!) Let me know time and hospital when you get a chance!
knowing first hand how it feels to hear that your child has a life threatening disease… I completely understand. I tried to do the denial thing for a while as well….
Praying with you that Deacon/the doctors/and you and Aaron are held in God’s great big grip and that you receive steady guidance all through this journey….
we love you and are praying fervently alongside you.
Joining in prayer!!
The Haines fam will pray.
Praying for you guys…
so sorry to hear this news about your sweet Deacon. he is a precious boy and god does have big plans for him! praying for you all,
My thoughts and prayers are with you as well!
It is very hard to hear that something is “wrong” with you’r perfect child.
Eli’s blindness was hard at first. He’s stronger than I am I think. I’m hoping and praying for a cure and here at this point in his life he wouldn’t want his sight to change. He’s happy with who he is.
I’ll be thinking of Deacon and your family!
With water-filled eyes I too am praying for all of you…
Praying for Deacon and your family. Don’t be afraid.
I’m so sorry. I am praying for Deacon and for your family.
I just wanted you to know that I read this earlier today while visiting the Guadarramas, a family from church. They know of you and your story, have never met y’all personally, but their 4 year old Vangie is sometimes in Deacon’s class. And we all, two adults and 6 children (even Vangie) prayed to Jesus to heal sweet Deacon’s body. You’re right: it’s not hard to see that God has big plans for that boy. We will all continue to keep him in our prayers.
Bless his heart. I’m so sorry. I’ll be praying.
Our family is praying…Although we’ve never met, we love you guys!
We are sending up prayers for your entire family and your dear sweet Deacon. As a mother my heart hurts for this little angel. He has also been added to all of our congregation’s prayer lists.
Oh wow, Jamie. Thanks for sharing. We will definitely be praying for your family and little Deacon.
Jerod & I prayed for Deacon last night before we went to sleep. God is faithful.
How blessed Deacon is to have a Mom and Dad that will remind him daily of his uniqueness in Christ. As a Speech Therapist, I see kids every day with different speech and voice problems. Deacon has so many options for good communication and a happy and full life. We will be praying for him tomorrow!
Love your new site. Praying with you…