As usual this is being posted a few days late, but we are still making progress with Seren’s treatment.  We have seen a few people while out and about who have commented on how well Seren looks, and the less affected areas of her skin are noticeably smoother.  There are still a few areas that are sore, but this tends to be over her joints where the skin has thickened.  The itch is still there but is not as bad as it was and is still more of an issue when she isn’t getting her own way so starts to scratch out of frustration!  We’ve sent the following photo’s to Dr Aron who says to continue with applications 6 times a day for 5 more days then reduce to 4 times a day.  This should tie in with Seren’s next visit to her NHS dermatologist on the 10th October.  We are hoping we will be able to show her a great improvement by then.

Photos taken on 2nd October

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So the cream arrived yesterday and we have started treatment, as usual Seren is not happy about having cream applied.  But other than that early signs are promising.  We didn’t manage any photos at the start of treatment but these were taken a few days ago

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These don’t really give much of an idea of how sore her skin was at this point, and how awful her scalp smelt from the weeping sores on her head, but needless to say by this point we were all pretty desperate for some relief.

Pictures taken today, after 5 applications of Dr A’s cream and a bath (with soap!)

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We now have everything crossed that this continues.

So I could probably win an award for being the worlds worst blogger, both in terms of how I write and the frequency that I do it.

Anyway an update,  my initial surgery was in March and went well, except I got an infection in my jaw which needed further surgery in May.  Now everything is ok-ish, and I have an appointment with the oral reconstruction team in October, on the anniversary of my first appointment with the max-fac team.

My main reason for re-activating this blog though is to record Seren’s progress with a new treatment. When I last posted about her eczema someone message my with a link to this doctor in South Africa http://www.draron.co.za/.  Over the past few months I’ve kept coming back to his website an looking up information on him.  Like everything on the web, I’ve wondered is it some sort of scam, or a quack, but everything I’ve found has led me to think he is genuine and gets good results for children with eczema that isn’t responding well.  We were hoping to hold off on treatment until the half term holidays but Seren’s skin is again deteriorating with the onset of Autumn so we are starting tomorrow.  Contacting Dr Aron was scary, we are putting our faith in the hands of a man we have never met, but everything we have read suggests that he can help us, and the treatments he uses are all conventional medicines, just used in a slightly different way.

So watch this space and hopefully updates will be slightly more frequent over the coming weeks.

On the jaw front there is no news. The pain has settled down quite a lot, although I’m sure it is still growing, and now extends onto the tongue side of my jaw as well as the cheek side. I will chase the operation date after New Year and hopefully won’t have to wait too much longer.

The current major medical issue is Seren’s eczema, which is currently flaring up quite badly. it started when she was about 10 weeks old, and at 4 years and almost 6 months is showing no signs of leaving us.

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This was taken earlier in the year but she currently is in a similar state. At the minute she is scratching her head so badly she is starting to lose her hair in patches.

It feels like we have tried everything to try and get on top of this, but every time it feels like we are making progress we end up back at square one. It is doubly frustrating that she has eczema as she is the one that I few myself until she was 13 months old, I have to tell myself that maybe if I hadn’t her issues would be worse.

As anyone who knows Seren will know she is a tough little girl, very outgoing and feisty, so when she is screaming at us in the middle of the night to make the itchy stop it breaks our hearts. I don’t know what the next treatment will be, if any, we keep being told that most children with eczema outgrow it by the time they are 7, so until then we might just have to continue with steroids and emolients. We try and keep positive but hte next three years could be a very long wait.

So not only do I have a tumour with an odd name, its also pretty rare. I was talking to a dentist who’s never come across one in 13 years. This makes finding out information pretty hard. I had found a support group for people diagnosed with ameloblastoma but there seems to be nothing comparable for keratocysts, so I will attempt to write about what I have found out and been told.

First off, even the name is confusing keratocystic odontogenic tumour, is it a cyst or a tumour. Up to 2005 it was classified as a cyst, after then it was reclassified by the WHO as a tumour due to its aggressive nature (in terms of how much bone it can destroy and how frequently they recur), the structure of the tissue within the tumour and the genetics surrounding it. As someone with one of these, I prefer tumour, cyst sounds like something easy to treat not something that is going to need surgery to sort out (apologies to anyone with a cyst, they are horrible and painful). In case anyone was wondering odontogenic refers to the fact that the tumour originates from the cells and tissues that form the teeth and related structures. As mentioned before we are referring informally to the tumour as Lurleen, this is mainly due to my addiction to the Simpsons game on my phone and also because it’s easier for the children to understand.

The next thing is how do they happen. Sadly again it’s nothing straight forward and is the subject of some debate. It’s probably easiest to start with things that don’t cause them. It’s not tooth decay or gum disease, so I don’t have to worry about the time I went to bed without brushing my teeth or ate too many sweets. One theory is that they are caused by cells that were supposed to turn into a tooth but didn’t and ended up as a cyst instead. The other, and frankly geekier, theory involves mutations of something called the Sonic Hedgehog Pathway, this just for the name alone gets my vote. Genetics go way above my head but from what I can gather this particular bit of genetic code is involved in tumour suppression and when it goes wrong you can end up with these tumours in odd places.

Just to clarify it’s this Sonic
http://en.wikipedia.org/wiki/Hedgehog_signaling_pathway#Tumor_regulation
not this one
http://en.wikipedia.org/wiki/Sonic_the_Hedgehog_%28character%29

And finally a bit about the treatment, which may sound a bit like using a sledgehammer to crack a nut. To give you some idea of the size of the problem look at your own teeth and count the one in the middle as 1 and your wisdom tooth as 8, my tumour extends through the right hand side of the jaw bone from tooth 2 to tooth 7. My consultant, Mr F, has said that for it to get to this size it has probably been growing for years, and typical KCOT’s work their way through the bone for a good number of years before causing the bone to expand. I have obvious expansion on both sides of my jaw bone, which also gives an indication of the length of time this has been growing. I have been quite unlucky in that the roots of several of teeth have been resorped as a result of pressure from the tumour onto them. We were also shown on the CT images how the tumour was pressing down on the nerve that runs along the jaw, which was causing a considerable amount of pain, luckily when the biopsy was taken some of this was relieved. A further factor that influences treatment is how often these tumours recur. Anywhere between 20-60% of tumours recur within 5 years of initial treatments, so one of the aims is to get rid of any microscopic daughter cells that may be within the bone after the cyst has been removed. That is why the cavity will be treated with something called Carnoy’s solution prior to the bone graft being inserted. But while it all sounds a bit daunting, I’m amazed that I am only expected to be in hospital for one night (expecting that to go up to 2 to allow for diabetic fasting) and that recovery will be a lot shorter than expected too.

Well that’s been a bit of an epic post, so it’s time for me and Lurleen to say goodnight.

So I’ve managed to skip over the bits about having CT and a biopsy, that kind of got mixed up with the excitement of birthday parties (children and business) dance shows and weekends away. Anyway today it was back to the hospital for the results and a treatment plan. There was some discussion about what the tumour is, but in the end we were told it is a catchily named keratocycstic odontogenic tumour (KCOT) although we prefer to call her Lurleen, after Lurleen Lumpkin. Much relief all round as this means it’s not cancer. Surgery will be needed to sort it out though. This will involve removing the loose teeth on the right side of my jaw, I think this will be 4-5 teeth. The jaw will then be opened up and the tumour removed and cleaned out with some sort of surgical weedkiller. Then hopefully in the same procedure some bone will be taken from my hip and grafted back into the cavity in my jaw. With luck this will all happen before Christmas, and then next year if the bone grows back ok, I will be able to have new teeth implanted. So all in all the thought of surgery is a bit daunting, and I can’t say I’m looking forward to being without some teeth for a few months but it could have been a lot worse. If you had told me a few weeks ago I would be relieved to be told I only need a bone graft from my hip I would have have thought you were mad!

The main area I have to be concerned about between now and surgery is not putting any undue stress on my jaw, as there is a risk it could fracture, so no toffee for me this Bonfire Night.

I’m not much of a diary keeper or writer but having a record of the next few months could be useful for me and also an easy way of keeping people updated as to what’s happening.

A brief history if what’s happened to date. In recent weeks I have noticed a lump on my lower right jaw, which had now been joined by a couple of wobbling molars. An X-ray had shown that the cause if this could be an ameloblastoma, this is a benign but aggressive tumour. Benign sounds good to begin with, but a quick search shows the preferred treatment for this type of tumour is removal of the affected part of jaw and reconstruction, usually utilising bone from the lower leg.