Still Journeying.....

Why, hello there! It certainly has been awhile, eh? Like 7 months since my last blog post?! But what that tells you is that there really wasn't much to write about in the last months. While our journey with Keziah and her freckle is ongoing, there haven't been any appointments or changes to update you on. Really, the only change that has happened since I posted has been that this girl continues to grow, looking older and older as the days go by.

But today we had an appointment, one that was 2.5 years overdue. It was a visit to the dermatologist at Sick Kids. It being 3.5 years since we last saw the derm is actually not very wise on our part - 3.5 years since her last skin check up. Her freckle needs monitoring to be sure that there are no worry spots. Even though most of her large freckle has been removed, the whole area of where it was and is still needs to be monitored for melanoma. So she should be going in yearly.

So off we went to a 2:30 appointment. Keziah was pretty excited to go back to the hosptial, taking her new Bravery Bead Buddy with her. This stuffie was made for her by a high school class in Toronto. She was "nominated" by someone for one to be made for her, and Keziah loves it! All her bravery beads can be fed through the mouth and there is a window pocket for a stomach where you can see all the beads. She hasn't used it for that though - just for snuggling so far :)

We actually arrived 1.5 hours before our appointment (traffic was great!!) and we hunkered down, thinking we were in for a very, very long wait. However, before we could get too comfortable, we heard "Keziah?". Really?! They took us in early! Yay!

So in we went and they checked her all over. We have noticed over the last years or so that she is getting more freckles (also known as satellites). This is common with having a congenital melanocytic nevus. So every freckle was checked over and photographed.......all 66 of them!! Yes, she has 66+ freckles, not including her large one.

To hear the words "they seem to all be benign" really hits home the reality that there is still a risk for her for them to not be benign.....that melanoma is a real risk for her. When you live with it for so long and freckles are just a part of your life, you can forget the truth that there is a risk of melanoma with having a CMN and satellites.

But praise the Lord for the fact that right now, all her freckles are benign! We shall continue to be diligent when in the sun, using sun screen. She always has it on around her eye and you will often see her wearing a hat.

We were in the car and ready to go by the time our appointment was supposed to start!

But not before our regular stop at Tim Horton's. Someone has upgraded from Timbits to a whole donut! :)

And another appointment is already booked for a year from now.

On the surgery front, we just got a date for June 7th. It'll be a minor yet delicate surgery, as Dr. Zuker and Dr. Wong will deal with the droop and heavy eyelid. You can see what I mean in this picture below....

The redness of her scars continue to come and go. Her last surgery was just a year ago and they have come a long way in a year, and they will continue to fade as the years go by. We do still massage every day for 5+ minutes.

 Above is a year ago, below is from last week

Keziah continues to be a happy girl. Every once in awhile she bares her heart and her struggles with how her eye looks. Hearing your child say, "I hate how my eye looks. It just looks so weird" and "I don't like looking at my pictures or in a mirror" cuts through our hearts swifter than the sharpest blade. But her working through her "differences" is part of this journey of a nevus. She however tells us emphatically that she is so glad that most of it is removed and she does not want what's left in her eyebrow removed ("Or else I won't have any eyebrow and people will ask even more!!" is her reasoning). She just doesn't like the attention "looking different" gets. So we work through it together, continuing to pray for wisdom and courage.

Once June 7th is here, you'll be hearing from us more :o) Until then, take care and thank you for reading!

Another Appointment Down in the Books!

Today I had to dust off my Medical Journal that I have kept since the day of our first appointment at Sick Kids with Keziah, as we were headed back there this morning. I have recorded every question, answer, comment and concern in this book as it has traveled with us through the last 3.5 years of surgeries and appointments. What's kind of neat is that for today, not only did I have questions, Keziah is now old enough to have her own. And so that was also written down :o)

Thankfully the traffic wasn't too bad. We even got to see this!!! You certainly don't see a Lamborghini every day! So we took the picture for Nathan Lincoln.

So the appointment. It was a follow up yet from her last surgery back in April, 5 months ago. We didn't see Dr. Zuker, as he is now retired. Well, so called retired. He was actually doing surgery today! But we met with his colleague, Dr. Wong. What a great and fantastic doctor she is as well!! We are so thankful to begin a relationship with her now. She has been involved with Keziah since the start, but more in the background, following Dr. Zuker around. She will now be who we see.

Overall, things are healing well. We asked about the brown spots, especially near the corner of her eye that are still there, and she reassured us that the spots will fade yet. It is all still healing. It takes about 8-12 months for things to really heal up.....which is when the redness will also start to fade. The redness really comes and goes. Below you can hardly see it, a picture taken a few days ago. Other times, it is very, very red.

There is a bit of drooping that is happening. There is a heavy fold of skin that goes from under her eyebrow down to the corner of her eye, extending down, which is causing the eye to droop. You can really see it here (see how red the scar is under her eye? This picture was taken tonight):

So there is a minor surgery in the future. We signed the papers, which are good for a year, and plan on taking care of the fold and droop within the next year. Her last surgery around the eye was only 5 months ago - like I mentioned earlier, it takes 8-12 months for everything to settle. We would like to give it some time for this to happen. So that means it may droop further in the next year, but knowing something can be done for her about it is reassuring. So we will probably look at a surgery date either Spring or early Summer. Revisions are common, especially as things settle and her head continues to grow.

In the mean time, we will continue to massage the scars twice a day, and enjoy the sparkle that lights up every room she enters!

 

I'll end off with a few comparison pictures.....this was right before the surgeries started (ack!! Those eyes!! Be still my heart! So thankful those haven't changed at all!!!). I don't know about you, but I always find it so amazing to see where we started and how far we've come.

This was a year ago:

And this was today while we waited to see Dr. Wong:

In a different perspective.......this was 3.5 years ago:

This was today:

Wow. Someone has been doing a lot of growing!!! But when you see the two pictures, you can see how long this journey has been. Yet while it's been long enough for a little girl to grow from her daddy's wrist to above his elbow, it's been a blessed one. Has everything gone right? Nope. But the fact that this girl was excited to go today, yup, you read that right, excited, tells us that it has been an experience that has made us grow in so many ways. We praise God for being with us every step of the way.

Oblivious No Longer...

Oh, how I love that darling face!! She is two in the first picture, 15 months in the second picture -the time before all surgeries, procedures, owies, bubbles, drains, suture care, pokes, bruises, hospital stays, IVs, infection. It is also the age where she was so innocent. Not innocent in behaviour (don't be fooled by her adorable face :o). ), but innocent in the fact that she had no idea yet that she has something on her face that not too many others have.

That was then. This is now.....4 years later. I've mentioned it before that the window of Keziah not realizing that she looks different than others was closing. This was obvious through the comments stated here and there by her. Well, that window is most certainly closed. She knows. She is very aware of how she looks. She is very aware of how others look at her. It's not only the fact that she is almost 6 that tells us she knows. It's when she plainly told us last week:

"I don't like my face. I don't like how my face looks."

Nothing like putting tears in our eyes quicker than if we had put our hands in the very campfire that we were sitting around when she said this.

I can't remember exactly how it came up, but we were chatting around the campfire, just her, her dad, and me. We were talking about how two people at a store had asked her what happened to her eye. No one has actually asked her in awhile, so it threw us for a loop for a minute, forgetting that there really is still something "different" about her eye. And that is when she said that - about her face.

My heart stopped and my stomach dropped. I quickly looked at Nathan and didn't say anything. She clearly wanted to talk about it and so we just let her talk. And it all came out, statements like:

"I don't like it that my eye is different than everyone else's."

"I don't like it that is all hairy and that people stare at me."

And the comment that nearly did us in:

"I don't like looking in the mirror. When I brush my teeth, I always see my face, and I don't like it."

What do you say?!

While she was talking, I couldn't help but pray for wisdom. The time that the social workers "warned" us about before we adopted her has come:

• Are you ready to deal with self-esteem issues - more than what others will have to deal with?
• You realize that by adopting her, you are signing up for more questions by her and will need to help her in dealing with the fact that she looks different than most?

So we knew it would come. One day. But so soon?! When she is still so young? When no 5 year old should ever say she doesn't like looking in the mirror because of her face??!

We let her talk, and not once while she was talking did we tell her she was beautiful, that it doesn't matter that she looks different than others. Why not, you ask? Because we truly felt that we would have then dismissed her feelings. She was opening up her heart to us, so to tell her "It's not true - you are beautiful!! So people look at you, who cares?" just didn't feel like the right response at this moment. Of course, we tell her those things often - but we really felt that while she was baring her heart, now was not the time. It was time to comfort her, to let her know that we are there for her, to help her work through how she feels. And by pushing her feelings away by "disagreeing" with her just did not seem like the right option (this time).

And so we listened to our darling, beautiful daughter tell us things that no 5 year old should be saying. We held our tears in check (until after she went to bed) and validated her thoughts by letting her just say whatever she felt.

Let me tell you, it was hard! SO hard!! But so important for her to work through and talk about. And I write about it because it is all part of this journey of her and her freckle.

We ended the evening in front of the mirror so she could show me what she didn't like. She pointed to her eyebrow, as well as all the redness around her eye (scars and the skin graft under her eyebrow) and said she didn't like it because it looked like blood. I told her that we can use special stuff to cover it up a bit if she'd like, which she loved. Thankfully her and I have very similar skin tone, and so my cover up will work for her (which by the way, she hasn't asked for since this night and I have not brought it up).

I also reassured her that the redness will fade away over time, which she also was happy to hear.

Once tucked into bed, I did then tell her that while she may not like it that her face looks different than others, I said that I did - because that's how I know she is my girl! The sparkle was in her eye and she fell asleep with a smile on her face.

I then went back outside to the campfire and cried.

Did we handle it right? I don't know. You may even have disagreed with how we handled it. All I know and am comforted in is the fact that God chose us for her and her for us. And so we will continue to look to Him for all things we need to raise our daughter up to know that she IS special and beautiful - not because of her birthmark, but because she is His child. We pray that we may continue to help her to grow emotionally, that she may know that she may come to us and be heard. And we pray that this journey also helps her to be open-minded to others that may look different, that she may see past the differences and acknowledge that they are still people, people with feelings just like her.

 

 

5 Year Old Insights

We are two months post op now, with healing continuing to take place around Keziah's eye. Some days it is very red and angry looking, and other days the redness is gone. Stitches are still working their way out, which often means small infections here and there along the incision line, but clear up after a few days. Sometimes they clear up on their own, other times we need to rid of the pus. We continue to massage the scars twice a day, something we will do for another year or so.

Throughout this journey, we have always been ever curious to know what she has thought about the whole process of removing her freckle. We've always been somewhat apprehensive in our decision to remove as she has always expressed that she loves her freckle. From start to finish, Keziah was most concerned that Dr. Zuker would take all her freckle away.

One of the gifts that we gave Dr. Zuker was this, a Before and After picture of Keziah:

Before we gave it to him, I had shown it to Keziah and asked her which of the 3 pictures was her favourite. She pointed to the bottom one. I asked her why, and she says:

 

"Because I like my smile there. And I have my whole freckle."

 

Gulp.

• Did we, her parents, make a mistake by choosing to remove?!
• Will she grow up and tell us we never should have removed it?
• Will she be angry with us for making the decision for her, a decision to do something to her body/face?
• Should we have done what others chose to do, and that is wait until she is older so that she could make the decision herself as to whether to remove or not?
• Will she always wish she still had her whole freckle?

Making the decision to remove her freckle was never an easy one. It was difficult, confusing, and worrisome, with lots of sleepless nights, tears and very tight stomachs.

 

So now that we have done it, that has left us very curious to know what Keziah thinks of it all. Of course, she won't comprehend yet what all went into making such a big decision like this one, but still.....what does she think about having most of her freckle removed?

 

Well, the other day I received an email from someone who had found this blog. He was in search of what to do, as his daughter was born with a facial birthmark as well. He sent some pictures - pictures of his beauty, a little one with a large birthmark. He was looking for advice as to what to do and who to go to.

 

I decided to show Keziah the pictures of the little baby. I did not say anything about the freckle. I wanted to see what her reaction would be. She noticed right away that the baby had a freckle "just like me, mom!", and then went right to oooohhhhing, and ahhhhhing of how cute this little one was.

 

I then told her that the baby's parents are wondering what to do: should they remove the freckle or not. This was what Keziah thought:

 

"They can take the freckle off, but not now. Not when she is just a baby. She is too little. They should wait till she is older, so that she can understand what is going on."

 

I asked her if they should wait till she is the same age that she was when we started the removal, and she said,

 

"Yes. I liked it that I was older and I knew what was happening. I liked it that you could tell me what was happening. I could understand better because I was older."

 

I then asked if they should just leave the freckle alone, let the baby keep her freckle forever.

 

"No. Or else everyone will stare all the time, and say 'what is wrong with your face?' I don't think they should take all of it off either. They should just leave some like mine. Or else she won't have an eyebrow and people will ask, 'Hey, why don't you have an eyebrow there?'. But they should wait until she is older, not now when she is a baby. She won't understand now. I am glad I was older so I could understand."

 

This conversation left us both (my husband and I) in tears. To hear her speak so openly and with such care for this little one was really neat. Clearly, her main concern was that the baby needed to be old enough to understand. She also spoke with such confidence, in a tone of "I know all about this." 

 

We are so proud of this girl. Not because she has eased our concerns somewhat about whether she would grow up angry with us for making the decision to remove. But proud of her in her viewpoints, her concern of others, how she expresses and handles herself, not only through the process of removal, but today, dealing with thoughts that most kids don't need to think about.

 

I know, she is still young yet, so really, how can she give advice?! In reality, while her reasoning for waiting till the baby is older is a good one, it is actually easier to remove (if that's the decision for your family) the younger they are. They don't remember the process and their skin heals so much quicker than if older. But it was just really neat to hear her take on it all. (Just a side note, there are grown ups who have left the facial birthmark alone, and are also very confident in who they are, which is so good!!)

 

We continue to praise God for this gem of a girl. We also continue to thank Him for blessing her through the whole process, leaving her with a positive and mature outlook in life. He has also blessed this girl with a heart of compassion for others. What a gift she is.

And That's It.....For 6 Months

Well, we woke up this morning, a month after Keziah's last and final surgery, prepared to say "Good-bye" to someone who has been a household name for the last 3 years - so much so that Lincoln thinks anyone, including himself, who sees a doctor must see Dr. Zuker :o)

Keziah was happy to go back to the place that she absolutely loves, despite everything that she has been through there.

We packed up some gifts for him and Ms. Valentina (who unfortunately wasn't there today), and headed off to Sick Kids. Usually it's me taking the pictures, but she took the liberty of snapping some shots of The Big City, using her Leap Pad.

Our drive time was an hour (!) and what we thought would be a very long wait time, was not! In fact, only one book was read and then in walked the man of the hour.

Before we could give him our gifts and express our thanks, Dr. Zuker had a good look at her eye and skin grafts. To hear him say, "Perfect" is such a blessing! He was very impressed with how it all looked. Yes, it needs to settle down yet but for only being a month old, the skin grafts look amazing. It is so nice to see a surgeon pleased with his work....especially when it's your daughter's face we are talking about!

Keziah did have an uncomfortable moment, as a staple had to be removed from her head. I found it a couple days after all her head wraps came off.....it's right there, pretty much center of the picture.

And then it was time......time to say good-bye, or so we thought. But actually, no! He wants to see her in the Fall, just to make sure things continue to go well. He'll also have a team of others with him to do the "hand off", to explain what was all done, the results, the processes etc. etc.

Phew!! That meant I didn't have to pull out my Kleenexes just yet! I have 6 months to go yet before we really cut the ties.

Nevertheless, we still gave him his gifts :o) He was thrilled!! It was hard to come up with what to give him.....but we stuck with things we learned about him over the past 3 years, of things he liked: my baking and his love for his dog (which has since passed away, but thankfully his secretary just got a puppy, so the dog treats and toy will be going to her!). We also learned, from a little bird, of something else he liked and so gifted that as well, much to his delight!

Before we left, we snapped a picture of him with our beautiful girl. What a gift he has been to our family! We praise God for placing him on our path.

Dr. Zuker has done amazing work on our daughter. He started with our daughter just over 3 years ago, with her looking beautiful as ever, beauty that included a very large black freckle:

 3 years later, through all his handiwork and talents, as well as the blessings of God, she still looks as beautiful as ever, beauty with just a little freckle (which she is so thankful to still have!) :

And through it all, by the grace of God, those eyes and that smile never did change!!

I have plenty more to write, but this will be for now. I will update the blog in a month or two, to document the healing of the skin grafts. Until then, once again, we thank you ALL for the support you have shown via prayers and comments. May God bless you like He has blessed us *by* you.

Worse First, Better Later

Between surgery date and bandage removal date, Keziah enjoyed a week under the careful and watchful eye of Dr. Lincoln:

Keziah handled being "under wraps" quite well, but she was very thankful when Tuesday rolled around for her to go back to Dr. Zuker, get put out and have it all taken off.

 

So off we were by 5:45 am. It certainly isn't too often that you get to paint just after 7 in the morning!

By 8:00, the team was ready to go. And so was she. Off she went again, chose the same sleepy smell (orange) as before, and 15ish minutes later, all was done.

Now, this is very important for you to read: for a skin graft to look good, it needs to look terrible first. After seeing the pictures, you may very well think, "Well, doesn't that look worse than the birthmark?!" or "You can't even tell there's a difference so why bother put her through all that?!"

Well, you are right. At first. But when we think of her first skin graft a few years ago, we are confident in how her skin grafts will look in a few years. Let me remind you what her other skin graft looked like from 3 years ago:

 This is what the skin graft looked like 2 months later:

And this is what the first skin graft looks like today, almost 3 years later:

So, please keep this in mind for the following pictures :o)

As I was saying, about 15-20 minutes later, someone was waking up, with all smiles, eager for some freezies!

 

After another 20 minutes to spend in the playroom (with Opa!!) to make sure all the wobbliness had left, we were able to go home:

Let's do some Before and After pictures so we can see the differences this surgery made:

Here she is, before and then after of the skin graft placed around her eye last week:

Before and after of the skin grafts down the side of her eye, shortening the eyebrow:

 

Before and After of the excision done under her eye:

 

And the before and after of the scar revision done on her scalp:

 

The skin grafts came off her ear, and to keep that incision sealed, she goes to bed with a sweatband around her head, so her ear won't fold over as she sleeps and rolls around:

 

So even though the skin grafts all look a bit rough right now, we couldn't be any happier for her! Her eye shape looks great - not too droopy or pulled open. The excision under her eye is amazing!! Plus, Dr. Zuker is pleased.....which makes us pleased as well.

Her next appointment is a follow-up one, for May 7th. And you know what?! That could very well be the last one!!!!!

Now, I ask you: how in the world do you thank a man that has made such a difference in someone's life?! I have 3 weeks to think of something.....

It also gives 3 more weeks for this girl to heal up some more. We pray for continued healing - that nothing gets infected (the ear is starting to get pretty red and swollen with some pus), and that we can soon close the door of this removal journey. We praise our God for blessing this journey thus far!