July 1, 2009

And Now for Something Completely Different (UPDATED!!)

Today we're taking a break from our regularly scheduled program for an interlude from real life. There will be no regular blog post today because the family (sans Tristan) will be off at the hospital for Julius's 15th surgery.

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.

47 comments:

  1. Thanks so much for sharing your story! I hope Julius will get better and hopefully one day will be able to live a normal live without regular surgeries. I keep you, Julius, and the rest of your family in my prayers!
    I really enjoy reading your blog and I hope the next post about Julius contains some good news.
    Hugs Katrin

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  2. I recently started following your blog. Your stories are wonderful! This story has really touched my heart. For you to be able to share this intimate story with us has made this blog much more personal n our relationship with u much more closer. Thank u for letting us be a part of this.

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  3. Thank you for sharing. As you might suspect, it isn't a condition I'd ever heard of before and I'm appalled to discover it exists.

    I had a similar decision to make regarding my cancer diagnosis. Was that something to make public or keep private. What constitutes a reasonable boundary.

    In the end I decided that too much privacy is a dangerous thing and keeping medical conditions in the dark only makes them the more frightening.

    Thank you for sharing with us and I hope the surgery goes well.

    Good news about the trial drug though!!!

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  4. My thoughts and prayers are with you. We are lucky to live in a time when surgery exists and then on the other hand surgery always seems archaic, like there ought to be a less invasive treatment.

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  5. oh, i am so sorry to hear that about your little boy! I pray for you guys today. better go b4 i cry!

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  6. hope that drug can work... so Julius won't be tortured anymore.

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  7. Oh, Wendy. How horrific but what a blessing it's mild. Perhaps it will get better with age, as some conditions do (like allergies, exzema, etc.) I wish I could be there, I would totally babysit Tristan for you.

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  8. I am glad you decided to share. I can only imagine how scary it was when he was undiagnosed and having a hard time breathing. My own son was born with only 1 opening in his nasal passage, so I know what it is like when little air gets through. But we only face 1 surgery, bless your heart for facing many!!

    Thank you for sharing! Will keep you in my thoughts and prayers today!

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  9. I am glad you shared this. Sending your son love and light through his surgery and sincerely hoping this drug trial pans out.

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  10. Oh my,,,seldom am I speechless,,thank you..glenn

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  11. What a strong little guy you have. Group hug to you all.

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  12. Oh Wendy, as a mother my heart goes out to Julius and your family. I hope they can find a cure sometime soon so he won't have to continue enduring these operations. Hopefully that new drug can help. My thoughts will certainly be with you and your family today. Hope everything turns out well.

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  13. I don't know what to write, but I want you to know that I care.

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  14. I'm glad you chose to share your story....and I hope you find comfort in knowing that complete strangers care and wish you and your family well.

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  15. As a mother I am speechless. But I want to thank you for writing this intimate part of you and your life. I have only recently started following your blog, and your stories are wonderful. This post really touched my heart.
    I didn't know of RRP. I hope gestures like these today will trigger research and exposure in the future.
    Big hugs of encouragement to your little brave fighter and to you, his steadfast beacon.

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  16. Sending good thoughts for you and your family on this difficult day.

    How awful for Julius to go through that, but I'm sure he finds comfort in his amazingly awesome mother who provides all the love and support a young child could need

    ((HUGS))

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  17. Thank you for sharing. I'll be thinking of your family today and sending good wishes.

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  18. Thanks for sharing about this. My heart goes out to your son and your family. I hope things will soon change for the better.

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  19. My family will also be thinking of you and your son today and sending you good wishes. I hope that the trial will turn out successful.

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  20. Good Luck to Julius! I applaud your decision to share, it will help others who are having the same or a similar trial.

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  21. I appreciate it when people just talk about what's really going on with them. I do that and I think it's a good thing. I am very sorry to hear about the problems you are talking about and will say a prayer that things get better and stay better.

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  22. Thank you for having the courage to share and thank you as well for making an effort to make others aware. Good luck to Julius today - I'll say a prayer for him.

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  23. Sending prayers and happy thoughts to Julius and your family!

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  24. Thanks for sharing. it can be difficult to know what to say about truly personal things on blogs, so I'm touched that you chose to share it with all of us on this blog.

    I hope it goes well and will be thinking of you all.

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  25. I know that its not much coming from a stranger but my prayers will be with your little one and your family. I hope all went well and that there will be leaps and bounds in this field. Sending love your way.

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  26. I'm so glad to hear that Julius did well! That's fantastic news!

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  27. Thank you for sharing. We all have big stuff we have to deal with. It is understandable you do too. Good luck with everything!

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  28. That's great news! I'm glad it went well.

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  29. Wendy, you were brave to post this. And I'm glad to see, from your update, that he came through the surgery just fine. Although sad to see it will be recurring problem. You're in our thoughts and prayers.

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  30. I had no idea these struggles were part of your life. Wow! The kids and I will say prayers for ya'll tonight. I really hope someone will find a cure for this soon. Thanks for the post and the info.

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  31. At nap today I told Jazzy we were gonna pray for a little boy and she did a very good job. Glad things went well today. We will continue to pray!

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  32. Aw man. Don't ever be afraid to share your bumps in the road. Life is just as funny as it is sad. People whose personalities are rooted in whimsy and good humor are often the ones who, when they reveal "bumps," inspire those around them.

    Your blog is great.

    Also: the Ozarks are beautiful.

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  33. Thank you for sharing this intimate part of your life. We never know what we'll be handed. I'm glad today's surgery went well and hope the new drug tests are successful and available to Julius very soon. Hope you're doing okay, tonight, Mom.

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  34. I will always keep Julius in my prayers.

    Take care...

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  35. That sounds really quite scary! I'm glad Julius is dealing with it well - you too - and that the number of growths this time is small.

    Is there any chance that his immune system will begin to deal with this over the years? I hope so.

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  36. This is great news! I'm so happy for your family. I know someone who has a daughter with a cleft palate....surgery after surgery. It was so emotionally draining for their family.

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  37. Thanks for the update! Wonderful news!!!

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  38. Sending good wishes, if belatedly...

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  39. So glad everything went well. What a scary thing for a mama/family.

    You've got a lot of 'friends' out here prayin' for you all!

    Get well soon, Julius!

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  40. I am so glad everything went well! What a tough little boy you have.

    Your son, you and your family are certainly in my thoughts and prayers.

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  41. Just wondering...when Julius is completely grown, will the excess tissue stop growing as well? I'll keep you all in my prayers. By the way, I don't see much point in sleeping any more than I have to, either!

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  42. Thanks you so much for sharing this intimate part of your life. A prayer for Julius is going out from this end of the blogoshphere and strength for your family...

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  43. Wendy, I'll be praying for Julius as he recovers and for future treatments. You rock!

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  44. Wendy,

    Girl, my thoughts and prayers are with you. Thanks for sharing this, and bravo to you, your family, and your brave boy for dealing with this illness in such a proactive and positive way.

    P.

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  45. I applaud you for your upbeat and positive attitude, even though this "bump in the road", as you put it, obviously does take up a huge part of your family's life. My prayers and thoughts are with all of you, that Julius' case will continue to improve and that new treatments and/or drugs will be discovered to help him.

    I'm very happy to hear that the news was good after his most recent surgery!

    ~hugs
    Susan

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  46. glad to know that the surgery went well for your boy. thank you so much for sharing this, i think it's easy for us to think that our own troubles are the worst and everyone else's lives are way easier than our...and, of course, that is simply not true. i hope julius continues to do okay, and that the new treatment makes his condition easier to live with.

    many hugs.
    bonnie

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  47. Thank you for sharing your family's story. Please know that it is serving as immense support and encouragement for other mothers and families! I will be praying for you and your family and know that this is only the journey and not the destination. The victory on the other side is going to be glorious :)

    Blessings,
    Veronica

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