Cystic Hygroma

...only without so much "hyrgo."  We are so glad to have discovered the root of Katie’s facial pain.  It is a large cyst, which has evidently been there, undetected, for at least over a year, probably two.  Previous images from last year show it plainly, but no doctors saw it because they were focused more on bone issues, and overlooked the soft tissue problems.  Thankfully, an ENT (Dr. Grimmer) that the infectious disease guy asked to look at her, immediately saw the problem.  He is used to working with soft facial tissue and it jumped right out at him.  Two days ago, on Friday, they successfully completed the scan with contrast.  I guess the cyst in her cheek is larger, more cavernous, than expected, so it took a whole lot of fluid.  But they think they have a pretty good feel now for what needs to be done.  This weekend, we have fasted to understand which of our three choices to take:

1.      Do nothing, and let her live with the pain, controlling it with Gabapentin, amitriptyline, and, if necessary, Oxycodone;

2.      Do a radical facial excision of the cyst, which would require that they basically peel the right side of her face back and CAREFULLY cut it out so as not to damage any of the five facial nerves; or,

3.      Do at least one and possibly three injections of bleomycin, and first-line cancer drug, which would hopefully cause the cyst to collapse on itself and thus heal. This procedure is called "sclerotherapy."

#2 has been proven to be the most successful means of dealing with such a “cystic hygroma,” but contains serious dangers that we don’t want to have to deal with if there is another way.  We’ve researched this 3^rd option, and though it, too, has some potentially bad outcomes, if done correctly (meaning the right dilutions and hitting exactly the right spot), has been shown to be very effective.  The medications she’s been taking have given her some relief, but I can’t imagine having to deal with that pain for the rest of her life.  So, our decision, with which we went to the Lord in prayer and fasting this weekend, was to pursue Option 3 as quickly as possible.  It won’t require a hospital stay, so she’ll be able to participate in the holiday cheer, and can happen within the next two weeks.  We’re awaiting confirmation that we’ve made, or not, the right decision.  Please pray with us.  Katie is so anxious to get rid of the thing that she seems almost willing to just submit to the radical surgery and get it over with.  But we feel pretty strongly about trying the less invasive alternative first.

Queen for a Day!

Katie was thrilled to be crowned Queen at Dixie High's Senior Ball on Saturday night!  Here are a couple of pictures - you can see how excited she was!  Of course, it was too much activity for a gal with a facial infection, and she has paid for it dearly today, with increased pain, to the point it affected her vision.  But she'll remember this day of fame for her entire life!

Teeth

Hi, All – the predicted demise of Katie’s teeth is progressing.  She has been in terrible pain for several days, but it’s been building for several weeks.  There is another tooth that has failed, and there are no other options than to remove it.  Fortunately, Dr. Egbert, whom we saw in SLC last Thursday, thinks there is enough bone to implant a couple of posts to at least give her two or three molars on each side to chew on.  Previous dentists had concluded that her bone density was too low to handle implants, but they didn’t have the expertise of a prosthedontist, so we’re hoping Dr. Egbert is right, AND that the implants will be adequately solid and correctly placed to hold some front teeth too, for appearance’s sake.

Katie is on antibiotics to clear the infection caused by the bad tooth, so hopefully that will reduce the pain.  She’ll see our good, wonderful dental coordinator, Dr. Christensen, tomorrow, so we can get the tooth extraction scheduled for next week. So please pray with intensity that we can get some implants to take hold so she can have teeth.  We were so disappointed that the prosthetic jaw wasn’t an option, because that would have given a good, strong foundation to at least her bottom teeth.  But, come to think of it, it wouldn’t have done anything to help the top teeth, so this is the route we would have had to go anyway.

This continues to be a very stressful thing for our little family here on Charbonne Dr.  We’re counting on your faith, combined with ours, to first, reduce her pain; and then, to allow the implants to take solid hold.

Thanks.  We love you all very much

Professional Photographs

See our photographer's pictorial account of Katie's New Ears Day:
http://amymonroyphotography.com/2013/08/21/utah-event-photographer-k-s-new-ears-day/

KSL Report

KSL finally aired the piece tonight on Katie's ears!

KSL News

Ken from KSL contacted me tonight; the story on KT's ears will be aired this Thursday night during the news at 10:15 pm (approximately). You can watch it live at that time on the internet at http://live.ksl.com/scheduler/embed-view?cid=KSLHP_channel

New Ears Day!

A MOST UNBELIEVABLE DAY 

IN THE LIFE OF KATIE

Paul Tanner putting on the final touches Friday.  Note: KT was not allowed to see the real ears until he was completely done.

Once he was finished, Katie was allowed to turn around and see her final ears for the first time.  The photo above and below captured her reaction from two different camera angles.  You can just SEE the joy in her soul.  It was a very emotional moment for all of us!

 Then, she got to hang some earrings on those new ears!  This is where joy intersected with pure pleasure.  

By the time we got home, Grandma had posted this sign in the front window of her house, declaring it a HAPPY NEW EARS DAY!  There has been nothing but rejoicing since.

Day 2 of Ear Week

We spent a long day at the Huntsman Cancer Institute where Paul Tanner's medical artistry is practiced.  Katie didn't mind the tediousness of all the aligning, adjusting, and talking to the news crew.  These wax ears are just preliminary, but even so, it was an emotional event to see her with ears on the side of her face for the first time ever!  Katie was all smiles, especially as she hung her first set of earrings to see how they looked. Friday will be another long day to finalize everything.

Ear Week!

CLICK ON THE PIX FOR LARGER VERSION

This blog episode is all in pictures.  I hope you can follow the process.  




It's pretty fascinating!   Katie is EXTREMELY excited about these ears!  The surgery to expose the new implants from under the skin went very well yesterday. She has only had a small headache today.  KSL TV will be airing a special segment on Katie getting her ears this weekend.  We'll post the time when we find out.

Significant Headache

This isn't a very appealing photo, but we thought it would be good to document the prosthetic ear process.

A total of FOUR posts were implanted into her skull on the right side; only 3 on the left.  The top post, which was done through a completely different process, is to hold her right-side BAHA (Bone-Anchored Hearing Aid), so she'll have bilateral hearing.  (She already has a BAHA on the right side.)  This post is capped with a plastic cover, and will take 3 months to heal before a hearing aid can be hung on it.

THREE posts were implanted on each side of her head to hang her prosthetic ears upon.  These were surgically implanted into the bone, and then covered with her own skin, where they will heal in a protected environment for less chance of infection.  These will heal in only 6 weeks, at which time they will cut holes through the skin to allow the posts to protrude.  They will then attach screw-like ends to them, which will then hold the "snap-on" ears on.

The other incision was to remove her misplaced ear "nubs" that she was born with.

KT is hurting pretty badly still, 5 days after the surgery.  We thought this would be not quite so significant a surgery, but I guess you can't expect 7 new holes in your head to NOT cause a headache!  We're hoping the pain starts subsiding soon.  She received a blessing from our Bishop this afternoon.  Please pray for her!

- Glenn

P.S.  KT has started her own blog to express what it's like to live with TCS (Treacher Collins Syndrome).  http://strollimysoles.blogspot.com/

She's Holier Now!

As KT woke up from the anesthetic yesterday, she said, "I'm holier now." At first, I thought maybe she'd had an out-of-body experience, or something.  But then it quickly came to me that she was making a good, old-fashioned Whicker joke!  With 7 new holes in her head after yesterday's surgery, she certainly is "holier" than she was before!  It was nice that she had such a good sense of humor right out of the chute.

The humor didn't last very long, though. This turned out to be a harder surgery than we had anticipated, and she had a rough night, though, thankfully, it wasn't in the hospital; it was in the comfort of Grandma's home. The pain meds only lasted about 3 hours, so we had an hour of pretty intense suffering each time they wore off before she could have any more.

The bandages will be changed on the 3rd day by Pam, then every day for the next 4 days.  The problem we didn't anticipate is that she cannot get her hearing aid on with the bandages as they are today, so she'll be deaf for these few days, and she does NOT like that!  She wants to be in on everything, and going without her aid is a worse sentence than anything else she can think of.

This morning, at about 9:00 a.m., she said she felt a little bit better.  So maybe we'll be able to enjoy the 4th of July a bit.  She was so excited about this surgery, and none of us expected it to be quite as rough as it has been for the last 24 hours.  But now, we're on the upswing, and once she can get her hearing aid back on, she'll be a happier camper!  Thanks for your prayers and love!

- Glenn

Goodbye, Nubs...

KT is in surgery right now to have 3 titanium posts implanted on each side of her head to hold the new prosthetic ears she gets in August.  She is so excited! Never before has she gone into ANY surgery smiling like she did this morning.

She will have her ear nubs removed as part of this process, so we took one last photo to remember them by. Lastly, she will get a new post on the left side to secure a new bone-anchored hearing aid (BAHA) to, so she'll have bilateral hearing after all these years.

It should be a 3 hour process.

- Glenn

Tailbone Surgery

Katie will undergo removal of her tailbone on Tuesday, 21 May, 2013, here in St. George.  She broke her tailbone 10 years ago in Virginia on a water slide, and has endured the problem all this time.  It caused serious issues during her long hospital stays during the summer of 2011, so we decided it was time to remove it.  We're hopeful it will be a quick and easy healing process so she can get on with life.

Her severe facial pain issues continue, so we're hopeful that Dr. Wells will be able to do a test nerve block in her face while she's in the hospital overnight.  We're also trying to schedule craniofacial surgery for July in North Carolina to build her jaw joints, so that her lower jaw can finally be rotated sufficiently to bring her teeth together and create a chewing surface, which was nearly completely lost during the recent molar extraction (which was supposed to be the root of her face pain, and didn't do a lick of good.)

We're really struggling with knowing where to go and what to do to help this little gal.  She successfully made it through her Junior year of high school, but with much difficulty because of the pain.  Please, Lord, guide us!  She wants to go on to college and become a veterinarian, and needs a more stable face to be able to make those goals.

Thanks again for your prayers.

- Glenn & Pam

Special Fast

Since tomorrow is Fast Sunday, we're asking that anyone who cares to please focus their faith on the healing of Katie.  She has suffered so much this week with severe pain, and we've come to the conclusion that we're going to have to have more jaw surgery this summer - things just cannot go on like this!  Only this time, we'll have a jaw joint made for her, which she has never had.

In the meantime, she needs relief from the constant pain.  We've got 5 doctors/dentists working with her right now, and they all have differing opinions about what is wrong and what to do, so progress is slow.  Dr. Christensen, though, is right there with us and very concerned.  He is doing all he can to help us find a solution.  Strong pain meds don't help her much at all.  She's missed most of the week's school classes.  

So, thank you if you can fast with us.  We'll be seeing the infectious disease doctor in Provo Monday to rule out any further bone infection, which the bloodwork does NOT show, but which the local doctors think might be hiding.
Now we're seeking to find the right doctor to do the jaw joint building.  We like the guy in North Carolina, David Matthews, but would like to find someone closer. There is one near San Francisco I'm conferring with, but the one in Dallas won't take our insurance and wants $50,000 cash to do it.  So we've ruled him out.

Love to you all!
- Glenn

P.S.  There's some assymetry going on with her face lately; we're not at all sure what's causing that.  Oh, and on a bone density scale, which should measure a value of 360, Katie's right lower jaw measures MINUS 6.  Not good material to work with, and whatever we do will be a tremendous challenge for any surgeon.

The Pathway to EARS!

At the U of U hospital today, Katie is getting her first laser hair removal treatment, in prep for getting the abutments for her snap-on ears!  She was so excited yesterday after our consult, that she literally walked down the hall of the hospital and ran, jumped, and clicked her heels together!  This really means a lot to her.  It is a longer process than we thought it would be, mainly because she has so much thick hair in the way of where her ears will be that they have to do 6 – 8 laser removal treatments in order to get rid of it all!  And each of those treatments is supposed to be separated by 5 weeks, but we’re trying to squeeze them together into 4 week intervals.  The last couple of treatments will be done after she has the surgery to install the abutments, so we can get her into ears by the week school starts in August.  The surgery will be on 2 July.  We’re trying to, at the same time, have another hearing aid abutment installed on her left side, so she’ll have bilateral BAHAs, to improve directional hearing, etc.  We’ll see if that all can be fit in on the same surgery.  At least that’s the plan.  We’re trying to do all this before she’s 18 to ensure our medical insurance will cover it.

Prom!

KT is on her Junior Prom date tonight, putting forward a good face.  She has still been struggling with some pretty significant pain, but has been pushing through it bravely.  She's on some new pain medication which is supposed to build up over 3 weeks to take full effect (gabapentin), and we're hoping it will do the trick.  But it is slow in coming.  She was THRILLED to get invited to prom with this young man, Tyson.  His father, by the way, was a missionary in England when we lived there in the late 80's, and we had him over to our house for dinner many times.  Small world!