Another Appointment Down in the Books

It has been 1.5 years since I've updated this blog. The last time I wrote, it was in regards to her yearly dermatologist appointment. This time I am writing an update again on exactly that: a dermatologist appointment.

CMN (congenital melanoma nevus) is a lifelong condition where Keziah will always need to have all her "freckles" checked on a regular basis. The reason for this is because she has a slight higher chance of getting melanoma than you or I. Our dermatologist reminded us again that just because a lot of her nevus has been removed, that does not lower her risk.

So off to Sick Kids we went last Thursday afternoon. It had been quite some time since we've driven that way - so long that I took the wrong exit! This resulted in a "scenic" route, adding 20 minutes to our drive time. The blessing in this is the fact that I can no longer do this drive in my sleep! There was a time a few years ago that I could do that due to how often we were making that drive, every week!

 

We arrived 1 minute before our 1:30 appointment, which didn't leave a whole lot of time to craft....but enough time to make this:

 

Once in the room, Keziah had to change into the hospital garments. My, has she ever grown! Here is the first time she ever donned a hospital garment! Just 2.5 years old here....a few minutes before they took her for her very first surgery of expander placement....ack, my heart!!

She has now upgraded to the "grown-up" kind....but with lots of room to grow yet.

Passing the time away while waiting for our derm...

A close-up of her scars - pretty red here. The redness still comes and goes - sometimes really red, other times a pale pink. The derm said we could tackle this with laser eventually, which would help the pigmentation of her scars.

Keziah had come up with a list of 6 or 7 questions she had for the derm - and the assistant did an amazing job answering them.

We went into this appointment with some concern over one of her satellites (freckles). Throughout the summer, this mole would swell up, scab over, and fall off. This repeated a number of times. But with great relief, we found out at this appointment it was nothing to be concerned about - the mole looked healthy. The reason for the swelling/scabbing etc is probably due to the placement: it is on her inner thigh, and so it rubs against material and her other leg. We praise God for this news!

In fact, we praise God for the positive news that ALL her freckles, moles, nevus and satellites look healthy!!

So we left with a skip to our step (after another appointment was booked)....until we hit the road, where what should take 10 minutes took 60 minutes, thanks to traffic! And that was just to get to the highway - we had to get home yet! Thankfully after more than 2 hours of driving, we arrived safely home.

Keziah is now 9. This girl has gone through a lot...

 She continues the journey of acceptance that her face looks different than most, and for the most part is okay with it. She still states often she is so thankful we made the decision for her when she was young. That is very relieving to us as the weight of that decision was huge!

There are no surgeries in her near future -  not until she is a teenager. Then we can do a bit of scar revision, and she can decide what she wants to do with her eyebrow, and the nevus on her scalp yet....if anything.

So onward we go, enjoying this beautiful girl God has gifted to us!

So

Sigh of Relief!

Wow, it's been almost a year since I've written on here! That's because our "freckle" journey has been very quiet lately.

Keziah had her last surgery sometime in June of last year, where they lifted up her eyelid a bit as it was getting pretty heavy. Other than that, we haven't done anything in regards to her freckle, and had not been back to Toronto Sick Kids.....until today.

I was notified this past Monday night by a recorded message from the hospital that it had been a year since Keziah was last seen by the dermatologist and that an appointment was booked for today. I thought of cancelling it as I had totally forgot this appointment was booked and so I was not prepared. But knowing how important this appointment is, we made arrangements and off we went to make the trek to Toronto.

Boy, I have *not* missed this at all!! It didn't help that it was pouring rain pretty much all day! Just under 2 hours there, 2 hours back. A trip that really should only take 45 minutes. But hey, we arrived safely there and back, so much to be thankful for.

Keziah is one of the best travelers around, though. She passed the time away, colouring.

Dear Patches has come with her every trip to the hospital since the very first one. This time, another stuffie-friend joined him :)

We only had to wait about 45 minutes until we met with the dermatologist. This girl has had to change into a hospital gown more often than she should have to, however she does it every time with no problems or fears, despite what these gowns usually mean.

After answering lots of questions about all her freckles, satellites and moles, the inspections began. This is when I always get a little nervous. They use a magnifying glass surrounded by very bright lights, and any that they feel need to be looked at closer, is done. They are looking for irregular colour and shape, signs of melanoma.

So you can imagine the deep sigh of relief that comes out of me when I hear, "Well, they all look good and there are no concerns of melanoma at this time."

The threat of melanoma isn't on our minds much at all.......however we can't ignore the reality that the danger is there and we need to remain diligent in her sun care. This always hits home every time another member from our nevus support groups has been diagnosed with cancer, or in the worse case, when they pass away from it. It's not common, yet, with this condition of congenital melanocytic nevus, it's a slight higher risk - hence the sigh of relief after today's appointment.

We didn't get a count of freckles/satellites this time, but more have been popping up. The derm did say that after the age of 6, everyone's freckles tend to pop up and show themselves. The important part is that Keziah loves every single spot :)

After next year's appointment was set, we headed back home. We picked up this gaffer from a friend's home - thanks to this friend's mom who was able to have  Lincoln at the last minute.

Before we got home, we did make that final stop....to Tim Horton's - which has always been included every time we have to go the hospital. The kids were happy to split a donut!

 

So, as long as none of her moles change, we don't have to go back until next year. As for surgeries, nothing will be done until she is a teenager - once her head stops growing. She often states that she is so thankful for the nevus left which is in the shape of an eyebrow. Her scars under and around her eye are a bit red/brown. I am not sure if it's connected, but we have been a bit lax in the massaging of it. We shall start doing that again and see if that helps.

In the mean time, this girl shall continue to create and imagine her way through life! Life is grand in her eyes when she can play, play, play. She has grown up so much since this journey started, pretty much 5 years ago this month. Ack!!! My heart!!!!

Look at her now....7.5 going on 16.

Although most of the main freckle is missing, that bright and sparkly personality continues to shine through. We have so much to be thankful for! We praise God for safe travels today, and a favourable outcome. But most of all, we praise Him for this treasure of a gift, our beautiful, brave girl. May our God continue to keep her safe as she grows emotionally, physically and spiritually.

Thanks again for reading! Take care for now!!

Surgery #.....Who Knows?!

Another surgery is behind us.......and we do believe that this may very well be the last one until her head/face is done growing. Yay!!!

Today's surgery was a delicate yet minor one, especially compared to what she has all been through in the past 4 (!) years. When dealing with the eye area, it's always a bit tricky.

Getting ready for today actually started last night. We stocked her up on food after supper because we knew she would not be allowed to eat after midnight, and her surgery wasn't going to be until 3:30 the next afternoon! So she enjoyed a chocolate pudding, a snickerdoodle square, a cookie and a slice of bread with chocolate, all before she went to bed. I don't think she mind at all....do you?! :o)

 

 

And because she didn't have to wake up early, she got to stay up to watch her (and my!) favourite show on the Food Network: Chopped

Before she went to bed, she listened to a video message from her nevus friend who lives in England, Isabelle. Hi Isabelle!!! Thanks for the well wishes!!

 

Due to the "No food" rule, she was quite thrilled to have Ginger Ale for breakfast! Certainly something I didn't think I would *ever* say: go get a pop can from the fridge for breakfast. But alas, it was said this morning!

 

We dropped Lincoln off at his little preschool and then killed some time at Walmart and Value Village, where a KinderSuprise and a baggie of little toys ended up coming home with us

Before we knew it, it was time to go. So she quickly changed into her favourite shirt, one that reminds her of a very dear little boy who lost his life due to complications of his congenital melanocytic nevus which became cancerous. She met Christian 2 years ago and he and Christian's mom (Hi Tanya!!) are never far from her thoughts and prayers.

Once at the hospital, we found out that we were given the wrong time.....but it was good!! 'cause instead of her surgery happening at 3:30, they were ready for her at 2:30!!

Keziah was quite nervous this time, becoming very quiet and unsure. We could really tell she is getting older and knows exactly what's coming. But again, when it was time to go, off she went on her own. What a girl!!

 

 

Can you tell which file is hers?! Not sure why it's in the "E" block, but there it is - that big fat one.

While waiting, we met up with another nevus family - Hi Karen and Scott!! Their little girl was having a tissue expander placed. It was neat to meet and chat together for a bit. We pray that Alanna's recovery goes smoothly, as well as all her fills.

Around 4:30, Dr. Zuker and Dr. Wong came to let us know that all went well. They excised a tiny bit of nevus (it was a very thin line down the side of her eye), did a Z plasty on her scar on near the corner of her eye, and then also did a very deep "hook" stitch to lift up the droop of the corner of her eye. That deep stitch will hopefully hold in place for a very long time, preventing the corner of her eye from drooping.

After they left, the anesthesiologist came to have a talk with us......she threw him for a loop because she was co-operative and completely fine until the mask (to put her to sleep) came out. She absolutely freaked out. He ended up putting the tube of the sleeping "air" in between his fingers and then cupping her mouth and nose with his hands, which worked and calmed her down. But her freaking out really shook him up and bothered him. He was really concerned that she will now be fearful of coming back to the hospital, that this "event" will leave her with a very negative experience. We did reassure him that her freaking out was something she does - she did for every single fill when dealing with expanders, and yet 2 minutes after the fill, she was happy, and week after week, she was eager to go back to the hospital. This reassured him somewhat, but yeah, it really didn't sit well with him. Wow. What amazing, caring and compassionate professionals Toronto Sick Kids hire!! We knew she hated the mask.....next time I will give them a "head's up"......I just never did as I didn't want to say it in front of her, causing her to get all anxious. But I shall pull them aside next time (and doing an IV instead of the mask will also cause her to absolutely freak out, so that's not an option either)

Anyway, she woke up in recovery and about 1/2 an hour and two freezies later, she was wheeled out to the car to go home, hugging her bear that apparently also needed an eye lift :o)

 

Once home and settled she wanted a piece of jam toast.......

.....only for it to all come back up about 20 minutes later! She hasn't thrown up after a surgery since her very first surgery, so this was a bit of a surprise. We know it can happen, but it hasn't happened in 4 years, with lots of surgeries in between that first one and today's. Those eyes - such a sad look!!

She did give me this soft smile but then promptly threw up. Darling beautiful brave girl we have.

So as you can see by the pictures, not much change is obvious. We can see the "eye lift" and can tell the difference....but it is hard for others to notice right now. It'll swell up a bit but not too bad, with her hoping to go back to school in a few days.

The one thing they did not do was touch her scar on her scalp. It is quite wide again due to her head growing. The placement of this scar and the leftover nevus is there from that "failed" expander a couple of years ago. If that expander had worked, the scar would be in her hairline and there would not be any nevus behind her ear.

We will deal with that years from now when she is done growing....possibly with excisions or even doing hair transplants. For now, we will keep her hair long and do different hairstyles to cover it.

 

We will be back for a follow-up in a few weeks. Then the steri-strips will come off and the swelling will be down, and the work that was done today will be a wee bit more obvious.

We are thankful once again for the talents of Dr. Zuker and Dr. Wong. We are thankful for safe travels. We are thankful to my parents for taking this blue-eyed-full-of-life boy - he's talking on the phone with my dad, "So opa, when Keziah goes to the hospital, I am coming over to your house. We will wrestle first and then you can read me a book." :o)

And we are thankful for all of you, with your many thoughts and prayers!

"See" you in a few weeks once we have the follow-up!