Thursday, April 21, 2016

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!


  1. I too have the same mark your daughter had, but my parents made the decision not to have it removed. I could understand their concern, no one wants to see their child undergo surgery... But being 44 years old, I have always had low self esteem and social anxiety. I wish they were brave enough to do it. I wish I was brave enough to do it when I got older... I commend your bravery and wish you the best.

    1. Hi Christina, Thank you so much for your comments! They give us surety in that we made the right decision for our daughter. It's tough, making decisions! Are you on Facebook? If so, search for the Nevus group....ask to be added and then you can also ask to join the nevus adults group as well. You are not alone dealing with low self esteem and social anxiety. I wish you much strength and courage. You are strong!!