Home!! And Just a Few Pictures......

....well, maybe not just a few. How about a whole bunch?!

Before I post some pictures, do note that the less birth mark there is to take off, the less of a change or difference you will see. Right now, it may look like there is no difference when you compare the before and after, but once those steri-strips come off in a week or so, we will really notice the work Dr. Zuker did.

Keziah had no problem going to the hospital on Tuesday morning, even with knowing full well what was about to happen. She was smiley before we left, and in the car, she did what she does best: sang her little heart out :o)

 

Just after 12 noon, Dr. Zuker came by to talk with us. Keziah was excited to give him her crafts that she carefully made for him. You can tell by his reaction that this man "gets" kids. He patiently sat through her little spiel, describing every little thing on her picture :o)

And then, off she went! On her own!!! We clearly see God's presence surrounding her as she does this without a problem. It brings tears to our eyes every time we think of how brave she is.

Finally, late in the afternoon, we could go and see her. Here she is, making sure her class pet, Penny (who desperately needs a wash because she went camping with us, too!) was near her. Penny was given to her to borrow from her teacher and classmates :o)

So, if blood and stuff makes you a bit queasy, don't look too closely at the next pictures. Under the steri-strips are the incisions, so right now it looks like the nevus is still all there. But Dr. Zuker was able to remove most of the nevus under the eye (leaving about 2 mm); he removed everything off her temple. He did this all by doing something like a facelift, cutting the skin under her eye, up her temple and down by her ear and then lifting the cheek flap up. And you know what?! He used all original scar lines, so Keziah has no additional scars!!

 And then the plan was to work on the end of her eyebrow, but seeing that it was already pretty tight, he left that alone and worked at the beginning of her eyebrow, starting by her nose. He excised her eyebrow, making it skinnier till about halfway (which now makes the rest of it look pretty bulky, but that will be taken care of next time). He then lifted the brow a bit, so it now actually has an arch to it. This means that now you can see the lighter nevus under her eyebrow a lot more than before.....but that also will be taken care of next time.

Although she came out of recovery around 5, by 6 she was asking for her broccoli.

And like the last 5 surgeries, Opa came to visit, bringing us a homemade meal made by my mom.

2 hours out of recovery, I knew things were looking really up when I hear, "Mom, is there anything on my nose?!" with a mischievous glint in her eyes :o)

And this morning, that happy glint was still there! Good morning!!

Life is great at the hospital when you have funny nurses, yummy breakfasts and an IV pole you get to drive!

  

 

And before she could order food for lunch, the hospital thought she better be discharged!! Dr. Zuker thought she might be staying in another night due to her eye swelling, but as you can see, so far the swelling isn't so bad at all. So after saying good-bye to Child Life Specialist Shaindy, we went home.

So, here are some BEFORE and AFTER pictures for now:

BEFORE and AFTER of the FRONT:

 

BEFORE and AFTER of the SIDE:

 I will update in a week from now, once the steri-strips come off. Until then, know that this girl is very thankful for all your thoughts and prayers! I read each one to her, and she loved hearing what you had to say. Thank you so much for remembering her these last days! We are so thankful to all of you, and most of all to God for blessing her with such a strong and brave spirit. See you in a week!

Surgery is Done!

It is almost 5:30 in the afternoon now, and we are resting up in our room. Surgery for Keziah went well and took a full 3 hours. Dr. Zuker is pleased with the results. Due to the work being done around her eye, her eye will most likely be swollen closed for a number of days. So he said we may be in here for two nights.

Oh, I gotta go - "Mom, I am hungry." No wonder - it's been 24 hours since she's had food. Broccoli, strawberry ice cream and a bagel with cream cheese coming up! :o)

Thanks for all your thoughts and prayers - I will update the blog with pictures once we are home. Take care!! Love from Keziah and her family.

Part Three is Around the Corner!

In less than a week, Keziah will be heading back to the hospital to continue on the journey of removing her freckle.

Next week has crept up on us quickly and quietly, due to life being busy with her in school, camping and everything else that keeps a family busy.

However, there was one other event that we were not counting on that made for some busy days, and that was another trip back to Cincinnati. We were there in August (see last post), where we met some amazing people, two of them being Tanya and Christian. We were blessed to be able to spend some time with them in the hospital, as Christian was fighting melanoma.

A week and a half ago, God called Christian home. While it was and is still so hard to believe and take in, we are so thankful for the time we were able to be with him. "I am so glad I could make him laugh, mom." said Keziah, when I told her that he is now in heaven.

And so, thanks to some amazing friends and family who were able to take the kids at a moment's notice, I made a quick trip down to Cincinnati for three days, to be there for Christian's funeral. It was oh so hard, but it was such a blessing to be able to do these difficult days with some of our nevus family again.

Tanya asked me to take some pictures, which I did, but I am waiting for her permission before I share them here. We pray for Tanya every day, that God will continue to uphold her in the very difficult days, weeks, months and years to come.

It really hit home with Christian's death that melanoma *IS* a risk with the type of birthmark Keziah has. It may be slight, but that risk is there. And so it has made us truly grateful that we are doing what we can to eliminate that risk by removing the birthmark. While there are no studies (yet) that say removing it removes the risk, to us it just seems to make sense. I mean, aren't we always told to watch the little moles on our bodies for changes? And then have them removed if there are changes to lower the risk of it turning into melanoma?

And so, on we go with this journey.

Next Tuesday, Keziah will be admitted in for surgery at 12 noon. No expanders this time (yahoooooooo), but what the plan is, Dr. Zuker will do a procedure called an excision. You can read what that means here. Dr. Zuker is going to cut away the birthmark under her eye, up her temple and shorten her eyebrow as much as he can, as right now it goes way past her eye. Here are some pictures:

Yesterday we went to the doctor's for her pre-op check up, to weigh her, get her vitals and to fill out forms.

Usually I do this with just her, spending some time together, making it a bit of an adventure. But this time we were accompanied by her two cousins, as they are staying with us for a week. That's an adventure in itself, all right!! So here they are, all three boys sitting nicely, waiting patiently:

Keziah has no problem going to the doctor's as long as there are no needles involved. She is also well aware of what is to come and is okay with. She is just nervous about the smelly stuff that puts her to sleep: "They said it smells like fruit, but that is NOT what fruit smells like!" :o)

And not even 10 minutes later, we were out!! I think bringing in the troop helped to move things along quickly :o)

And so we hunker down for the next 5 days to get mentally prepared for another surgery. What better way to do that than to go camping!? And so that is what we will do, to celebrate our Thanksgiving weekend. This is good, because it is hard not to get carried away with our worries and concerns about this surgery - it is *so* close to the eye.......we are praying hard that what is done next week does not distort her eye by pulling it open and down. That is a BIG risk with this surgery. Please pray with us, that God will guide the hands of Dr. Zuker and his team as He has done so far. Thanks!

Doesn't looking at this bright smiley face make you forget all your worries?! Ah, how we love her and her zest for life so much!!

Meeting Family We Never Knew We Had

Just before Keziah received her first expanders placed on her forehead and cheek, we were introduced to the Facebook Group: Nevus Outreach, Inc. Very quickly after joining, we were welcomed with arms wide open to a family we never knew we were missing - nevus owners and their families. This Facebook group, as well as the Giant Removal Facebook Group, has been such a support and place of comfort - a place to go to for any question or concern at all, because guaranteed someone has already dealt with it.

Often, while dealing not only with the affects of birth but also with a newborn baby with an obvious "mark", we turn to the specialists - dermatologists and surgeons. Unfortunately, there are too many horror birth stories due to the lack of knowledge from the derms and doctors:  the baby being whisked out of the room and put into isolation and the family told that their precious little one will probably not live too long.

That is why it is SO important to join up with a support group - a group filled with the real experts: the nevus owners and their families. And for the past 2.5 years, we have had the privilege of being a part of this group and have "met" so many amazing people.

So when a family wanted to see if other families were wanting to get together, we jumped at the idea! It did mean a 7.5 hour drive, but we didn't mind. We couldn't wait to actually meet some people we have come to see as family.

And so, that is what we did. Last Thursday, we dropped Lincoln off at my parents and headed down, down, down. All the way to Cincinnati, Ohio. Keziah was an absolute trooper the whole way there and back (4 days later). Not a single complaint out of this girl!

Ah! Finally! We have arrived in our room. And first things first? You just have to test out the bed:

Once we settled in, we headed to the pool. The hotel was quite a large one, but other than one other family, I believe we were the only ones there! Yay! Pool to ourselves!

The other reason we didn't mind to drive 7.5 hours is because that meant we could meet up with a surgeon that did all of Keziah's fills the first time around: Dr. Sitzman. He was working under Dr. Zuker, did all the fills, but then his internship/fellowship was up just before Keziah's first removal surgery. So he never got to see the results of his fillings until this trip - 2.5 years later! He took an hour+ out of his day to spend with us, which we so appreciated!

But our visit to the Cincinnati's Children's Hospital was two-fold. We took the elevators up to meet one of the bravest little boys we have ever known. Meet Christian and his ever-strong mama, Tanya. Christian was also born with the same birthmark as Kez, except larger and in a different area. Unfortunately, he was diagnosed with melanoma (which is a slight risk in having a nevus) at 2.5 months old, recovered, and then again this past spring. While his story is absolutely heart-breaking, what mends the heart back together is knowing Who Tanya and little Christian put their trust in: our God.

Keziah was so good with Christian, making him laugh and smile despite the pain he is in. I know Keziah has always said she would like to be a teacher when she grows up but in these pictures I see her being a Child Life Specialist :o)

After an emotional visit, yet strengthened by finally meeting (as well as by reading some of the Bible verses that are all over his room), we quickly met another little tyke, Dylan, who had just had expanders placed for removal of his nevus. We didn't stay too long as he was recovering but it was nice to meet this handsome boy as well. We then left to meet up with some more families at the Newport Aquarium, in Kentucky.

That is when we met up with Addyson and her family, as well as Sophia and her family. All three girls are around the same age and all of them have a nevus. They hit it off right away! In fact, about 10 minutes after meeting, Addyson and Keziah were already holding hands :o)

We saw some pretty amazing sea creatures!

 ^^ two albino alligators!

This poor tortoise - looks like things got out of control "in the bedroom". He found himself in a position that made him lose his dignity by the second. A biologist had to come and rescue him. I wonder if tortoises blush.....:o)

Saturday was a fun-filled day at the Waterpark, where we met up with a few more nevus owners and their families. I have pictures, but all of them are blurry and somewhat foggy due to how hot it was in there. Oh well! It left lots of time to enjoy the waterslides - which we did!

Later that afternoon, we headed to Walmart to pick up some groceries for the ride home on Sunday. Not only do the prices of things shock us here, so does what is actually sold in regular stores!! A whole isle of alcohol! Right there in Walmart!

And if we weren't shocked enough by how cheap the groceries were, we were stunned when we had to fill up for gas: $3.15 a gallon. A gallon!!! We pay $5.20 a gallon up here!

Funny story - Saturday night was going to be our last night altogether, and so we wanted to meet up at a restaurant and eat dinner together. We forgot that we were with Americans (who have accents :o), and so when we were told where to go, we looked everywhere for it: Red Rabbit. It wasn't until we came upon a Red Robin that we realized that is what we were supposed to be looking for! We forgot that all the "o's" are pronounced as an "a" sound ;)

The girls were thrilled to be have a table all to themselves!

Who knew that even at this age, a girl can't go to the bathroom by herself?!?!

Keziah with Sophia

All the proud nevus owners!!

And their families (one family is missing - we met them at the waterpark but then left before I could take a picture with them).

Sunday came - the day to head home. On the way, we stopped and met with one other family. This family just welcomed a beautiful baby girl into the family just 6 days earlier. She was born with a nevus as well, so it was so great to meet with them. Not only were we able to spend some time answering questions, I was spoiled in being able to hold such a precious little blessing!!

Back at home, we are proud to wear our "We love Christian" "We hate cancer" shirt, as we daily pray for Christian and his family.

Overall this trip was a.maz.ing. We met some wonderful families and made some memories. It was so nice to spend this time also with our darling Keziah. If it wasn't for her, we would not be a part of the nevus family.

We are so thankful for the relationships that have formed over the past two plus years, and we look forward to being a source of encouragement to new nevus families, as well as continuing in gaining knowledge from others' experiences with a nevus.

Surgery Is Set!

A hello to all of you! We are nearing the end of summer (noooooo!!), with Fall around the corner. Before we know it, September will be here and with that comes school. That's a big deal here, as Keziah will be starting kindergarten in a few weeks (noooooo!!).

And seeing how fast time keeps marching by, October will be here, which means surgery for Keziah. We just got home from camping (if interested, you are more than welcome to check that out here for lots of pictures and stuff) to a message on our phone from Sick Kids.

Her surgery has been set for Tuesday, October 14th at 12 noon. No expanders this time - yay!!!! For this surgery, Dr. Zuker will be doing what is called an excision. That is, cutting away some of the birthmark around her eye and up her temple, then stitching the edges together.

Below is a good picture of what he will cut away - all the birthmark under her eye and up her temple. He also mentioned he will take away some of her eyebrow as well, so it isn't so long past her eye. As for the rest of her eyebrow, he will deal with that next year.

I have noticed over the last few years, the part under her eye and temple has become quite a bit darker over time. This picture is from 2 years ago, about 10 days after her first big removal surgery, and the birthmark under her eye and temple is definitely a lighter shade than what it is today.

You know what's pretty neat though? The birthmark you see going up her temple is the bottom part of her birthmark, which was down by her ear before any removal was done:

Anyway, it'll be nice for Kez to have this surgery in the Fall, as that will hopefully stop the many curious people that she meets everyday, who ask her how she got such a black eye. She already knows about the surgery and is completely fine with it. I also find that amazing!! And such a blessing. This darling girl has gone through a lot the last few years, and yet she has no problem with having to go back for surgery.

But, while time flies by, it is still 2 months away. So that still leaves lots of time for this girl to enjoy what childhood is all about: imagination and play. What better way to pass your time away than fishing for leaves in a puddle?!

She is now a newly fresh 5 year old, and we couldn't be more proud of her!

Thanks for reading!