History

Tuesday, June 10, 2008 11:42 PM CDT

Hi again

Well I have purposely not entered anything here until now, because I didn't want to jinx anything! Most of you will know Cameron was scheduled for surgery on 16 April but this was postponed. So when we got an appointment for 4 June I didn't want to say too much in case it got cancelled again.

Anyway this time it wasn't cancelled and we went to Wellington on 3 June. It wasn't a good start. We arrived at the airport to discover that our flight had been cancelled - 2 days earlier, due to industrial action by Air New Zealand engineers. Air NZ had tried to contact all passengers but since it was the Ministry of Health that booked ours and it was Queens Birthday Weekend - no one was there to take the call. Anyhow they booked us on the next flight to Wellington which was scheduled for over 2 hours after the orginal flight. So we just hung round the airport waiting, since our airport is miles from the city in the middle of farmland. Then the fog rolled in. The flight to Christchurch half an hour prior to ours was cancelled because the plane couldn't even land. Then we heard our plane circling the airport and they said it was going to attempt a landing but if it couldn't it was going to continue to Invercargill, refuel and wait for the fog to clear before returning to Dunedin to pick us up. Then all of a sudden the fog lifted, the plane landed, we boarded an hour late, and finally arrived in Wellington around 12.30. We had phoned the hospital and said we'd be late so that was OK.

The operation was on Wednesday, it took 4 hours. The doctor removed a substantial amount of the plexi, leaving some of it round his mouth so that he wouldn't lose his smile. He took a lot from around his eye and his eye is still very swollen and weepy a week later. His face is quite swollen also but already looking a lot more symetrical. We stayed in Hutt Hospital for a week - I stayed in the hospital with him. It was the children's ward, and Cameron made a really good friend with one wee boy staying in for a week also. Unfortunately he lives north of Wellington - even further away! So they will probably only keep in touch by email.

Cameron will be off school 3 weeks altogether, hopefully that will be all. But the health department has teachers, and I gather they will be sending one to our home for some homework. Cameron is not impressed, he thinks he can sit and play playstation all the time!

Will update later. In the meantime I have attached some photos of after the surgery.

Bronwyn

Sunday, March 9, 2008 4:33 AM CDT

Well I have been very slack as has been pointed out on numerous occasions. Frankly there has been nothing to report.

Cameron saw Mr Charles Davis, a cranifacial surgeon in Christchurch last year, and he requested MRI and CT scans, the CT scan had a 28 week wait. He threw a tantrum at the eye clinic refusing the othmontologist to get a look at his eye (that cost Cameron a week of not being allowed to play Xbox LOL). In the meantime I slipped in some ice and broke my arm. That is about the only news of merit.

In December things started happening, firstly he got to see the child psychologist about his learning disability. They are leaning towards ADHD INATTENTIVE type, (emphasis on the inattentive part) however the school teachers don't believe he is. I think they are so used to the hyperactive ones they don't actually think inattnetive type exists. The teachers say he tries really hard, it's just not getting him anywhere. However he did get an award at the end of the school year for attitude and trying hard, and he got a $60 Warehouse voucher with the certificate. The school give out 1 certificate for each year (grade for you US readers) so he got the one for Year 3. I was and still am so proud. He spent it on games, a Spongebob one and some other monster destruction one. Anyhow, back to learning, he is getting one on one with the school principal for reading and maths, she seems to think he is doing alright, it is good, just him and Mrs Carter in the room makes it much easier for him to concentrate without any other distractions. We still waiting to hear if the psychologist still wants to recommend a trial on Ritalin, we are keen to see if it makes any difference. We will wait and see there.

Anyway the big, big news is, Mr Davis came down to Dunedin last week and he told us that Cameron is on the waiting list for surgery and we will probably be called up to Wellington in a couple of months. He wants to fix Cameron's eye before it is permanently damaged by his eyelid being closed most of the time, he also talked about lifting his ear and removing some of the bulk of the tumour which sounds like pretty major surgery. I am and I am not looking forward to it. The worst thing is the tumour will grow back, the other thing is the risk of paralysis.

What else, oh yes, Cameron went to Camp Quality in January. The Child Cancer Foundation put his name forward, they have been brilliant support for Cameron since there is no real support groups down here at the bottom of the world, there is one in Auckland but that is so far away. Anyway Camp Quality is free and it is for children who have lived or live with cancer, and NF tumours count as that. Indeed most of the kids going to camp are cured, and Cameron has to live with his tumour probably all his life. This year the camp was in Oamaru, about an hour and a half north of Dunedin. It was his first time away from home without any family members, and he was a bit shy at first until about dinner time on the first night. Then he had an absolute ball. They did all kinds of fun things like canoeing, swimming, ten pin bowling, visiting the fire station and the penguin colony and even at base camp they had fun with a concert night, and doing arts and crafts and getting lots of yummy food to eat.

Well hopefully this will keep you up to date. At least this year there should be a lot more to tell you about so I can update it more often.

Thanks for your interest in Cameron and how he is doing and thanks for all the lovely comments in the guest book.

Bronwyn

PS I forgot to say, it is Cameron's 8th birthday next Sunday, the 16th. He's getting a bike, he knows he is but he thinks it is hidden somewhere at our house and is looking for it all the time. But we put it on Layby so it is still at the shop - well hidden from him. We will go down there on his birthday and pay off the final $10 because they need to go through safety checks with him and the bike anyway, and we need to get him to try on a helmet as well.

Tuesday, January 9, 2007 2:37 AM CST

Hello everyone

As Kelly in Canada has pointed out I haven't updated in a while - a year - that's bad. Though I did update the photos. Thanks everyone for your messages, Cameron loves having them read to him.

To be honest there hasn't been much to report, Cameron has had no scans, been to about 5 appointments where they say - OK we'll see you again in a few months.

We think we have a referal to a craniofacial surgeon this year (I say think because the oncologist seems to have forgotten his name). This surgeon is based in Wellington but has clinics at Christchurch, which for you overseas people is a lot closer to us than Wellington - it's in the same island for starters. He has also been referred to ENT. His eyesight in his left eye is deteriorating thanks to the plexi. He does not yet need glasses - fortunately he has perfect vision in his right eye. His left eye is closed most of the time. I really don't want him to have to wear glasses because his face is asymetrical and glasses don't sit horizontally on his face - when he wears sunglasses they tilt at an angle. I suppose they will have to make special frames for any glasses they prescribe.

Cameron's tumour is growing about the same rate as he is. It is becoming more invasive inside his mouth and the dental professionals are becoming concerned that he is going to have difficulty eating. He lost his front teeth months ago and the adult ones are only just coming through, with any luck it might make him enjoy a nice steak more, right now he says he hates it because he can't bite it (even when I cut it into pieces for him).

It is the summer school holidays here, back to school February. NF is causing some learning difficulties for Cameron, he is not yet reading despite being at school for nearly two years. He can recognise individual letters and almost write them as well (when he asks how to spell something it is recognisable).

We haven't really done much in 2006 - nothing exciting like going to Australia for a holiday like last year. We'd love to go back, or to somewhere tropical like Rarotonga (in the Cook Islands which is close to NZ and a popular holiday destination for New Zealanders) maybe when we win the lottery! But for now we will be happy to go and stay a week with my parents in Cromwell for a week on the 22nd. Cromwell is about 2 and a half hours drive from here in Central Otago, and located about 50 minutes from Queenstown - one of NZ's top tourist destinations.

Take care

Bronwyn

Tuesday, January 3, 2006 2:30 AM CST

Kia ora and Happy New Year to everyone, we trust the holidays were good for everyone and not too many dramas.

We had a fairly quiet Christmas at home, just the 4 of us for Christmas Dinner, then my parents and my sister and her family arrived up for a BBQ tea in the evening, in the torrential rain! Cameron and Jordan were both spoilt rotten, but of course Cameron said his favourite present was his Mitre 10 Mega truck - a $4 dollar truck with the store's branding on the side purchased when the huge hardware store opened here just prior to Christmas. Never mind the more expensive toys.

On the medical front there have been no developments, no word from the doctors. We were planning on moving to the Gold Coast in Australia's Queensland, and we used our better judgement and decided to stay in NZ, I didn't want to leave in the first place, and when we couldn't sell our house that kind of sealed it, it was like a message saying "don't go". However I wonder if the doctors think we left - surely not. When everything gets back to normal after the holidays I will ring them up and ask when his next appointment is supposed to be. He seems to be doing well, though I suspect his tumour is still growing, perhaps not as fast as earlier on. Dental xrays show that it is coming into his mouth through his lower jaw now which is a bit of a worry. But the doctors don't seem overly concerned right now, and Cameron certainly doesn't care.

Well there isn't really much news at all, there is no school until 7 February, I hope the weather improves for their break - torrential rain as I said, storm force winds, thunder and lightening, doesn't say much for a summer break. Never mind, they have their Playstation, Xbox, Cartoon Network, Computer and heaps of art and craft stuff, and if all else fails they can play Monopoly and start world war 3!!!!!

Take care

Bronwyn

Sunday, September 11, 2005 4:59 AM CDT

Hello everyone

Well a couple of months back we noticed a hard lump within the mass of Cameron's plexiform neurofibroma, so we made an appointment to see the paediatrician. The doctor scheduled an MRI which was a couple of weeks ago, because he was concerned that bone was becoming involved with the growth. Here in New Zealand we have to wait 2 weeks for the results of an MRI (unless it is an emergency), which I believe is due to a shortage of specialists with the ability to read the results.

Anyway we had a consult with his oncologist on Wednesday where they still didn't have the images of the MRI like I requested. But they had a written report which said the main mass of the tumour has remained relatively unchanged and that if anything it has spread slightly down his jaw line. The oncolgist said that because NF involves nerve cells it could be that it has gotten into the nerves of his jaw bone, but the nature of these types of tumour is such that it won't break down the bone like a malignant tumour would, and is therefore nothing too serious - given that there is no pain or rapid growth in the tumour. The hard lump we felt is of similar nature and is related to his upper jaw, and that is being refered back to the paediatric dentists.

So all in all not too bad a result, the main thing is the growth is fairly stable at the moment, and as it is not causing any problems right now they will not be doing any surgery in the short term.

On Friday last Cameron had his second general aneasthetic in under 3 weeks. He hates them, he hates the smell and the mask thing. So this time they gave him a sedative before hand and were able to get the drugs into him through his hand, it was much better, no struggling or kicking or spitting. He still vomited afterwards when he woke up - he always is thirsty and gulps down his water or iceblock too fast. Anyhow he was getting some dental work done - I could not believe it - seven cavaties - too many sweet drinks I think. They got a good look at what the tumour is doing to his teeth, it is pushing them aside, but nothing too serious right now, he will need orthodontic work in the future. They want to see him every 3 months for flouride treatments and to get him to clean his teeth properly which he doesn't really and refuses to let us help.

Well that is about it for now - oh one more thing, Cameron got his school photos last week. They were taken by the same photographer that did his kindergarten photos 18 months ago. When I compare them, apart from Cameron grinning cheekily at the camera in the latest photo, causing his eyes to screw up more, there is no real change to the tumour, just as the MRI showed.

Bye for now, Bronwyn

Monday, July 4, 2005 1:44 AM CDT

We have been quite busy lately and that is why I haven't updated this page. Since our last update, Cameron has seen no further doctors so there is nothing to report in that respect.

But in June we all went along with his grandparents (on his Dad's side) for a holiday on Queensland's Gold Coast, in Australia. We stayed with relations, including Millie who has posted some lovely comments in the guest book - thanks Millie, they brought a smile to our face.

We had such a wonderful time, even though it is winter in Australia, just like it is here in New Zealand, their winter was the same, if not better, than our summers, with lovely warm weather. We went to all the theme parks - Wet N' Wild, Movie World, Seaworld and Dreamworld as well as Currumbin Wildlife Sanctuary. Cameron loved the polar bears at Seaworld but when he came across the kangaroos at Currumbin he had a new favourite animal, if he could have packed one in his suitcase and brought it home he would have, but he had to settle for a toy one. He got pretty tired of shopping, I don't blame him, a bit boring for a 5 year old.

When we got home it was back to school and he was in the school production. His class did a Maori theme reinacting the arrival of the Maori in New Zealand, and they did some traditional songs as well as a bit of a haka - it was so cool, the only thing that ruined the night was his brother Jordan was also meant to be in the production but was at home in bed with a stomach flu or some sort.

Well that's about it for now, will update later on with any new news.

Bronwyn

Wednesday, May 11, 2005 0:09 AM CDT

Today we had an appointment with one of Cammy's oncologists who was very apologetic and embarrased because he had no news for us. The only new thing he could tell us was they had been in contact with the Neurofibromatosis Foundation in the US and that the response back to them had come from the president of that foundation, so somebody important may be able to pull some strings with any luck. But he added there had been some time since hearing from that person.

At the last appointment befoer Christmas we were told they had heard from a hospital in the US whose opinion was that Cammys neurofibroma was pretty much beyond their abilities. Today I asked him was that hospital CHOP (Children's Hospital of Philadelphia) and he said yes it was. I had heard that was the best in the US and that if they couldn't do anything then no one can. But there are other doctors so they are still looking, and he will be in touch with his colleague tomorrow to ask him exactly what has been done in the last six months, because it is like a waste of time going in and being told nothing is being done, no one in this country knows what to do, and nobody knows who can do anything.

The doctor agreed, he wants to see some treatment (surgery) options being made available as soon as possible - there are all sorts of issues, his eyesight could be threatened in the future, as could his hearing, chewing/speech ability, not to mention the cosmetic and phsychological issues. The most worrying thing is there is a 5o 7isk of it turning malignant - that is the doctor's biggest concern. I had known there was a 5isk of this but never put it into any perspective until today - children who don't have neurofibromatosis do not have anywhere near that likelihood of developing a malignant tumour at age 5. The good thing is we know it could and are on the lookout for any sudden changes so could get treated a lot sooner.

Also he is being referred to a physiotherapist because he has a rather strange gait, he tends to cross his feet when he walks, that explains why the big toe on his shoes always wears out first. Hopefully it is just the way he works and not another NF issue with his leg bones.

Hopefully we may have something new to say but right now it is life as usual.

Wednesday, May 4, 2005 4:52 AM CDT

Cameron is 5 and he lives with his family here in Dunedin, New Zealand, he has an older brother called Jordan. Cameron has Neurofibromatosis Type 1, he is mostly affected by a plexiform neurofibroma (benign tumour) on the left side of his face, it reaches from above his eye to his jawline and ear. It has grown through the roof of his mouth and is pushing his teeth to one side. His eye is often closed, and it is now encroaching on his ear canal. Cameron's doctors have different points of view regarding his treatement options. The tumour itself is growing along several branches of Cameron's facial nerve making it very difficult to operate on. We have been told it is so difficult it is practically inoperable, surgeons in NZ don't want to touch it at all. One doctor is saying since it isn't impacting on his eyesight or hearing or breathing (yet) then they won't operate because the risk of damaging the nerve is too high. That and the fact these tumours have been known to stop growing, but there is no guarantee this will be the case with Cameron. Another doctor, an oncologist is keen to find someone overseas to do the operation because it is growing and has the potential to start causing problems, combined with the fact that it is disfiguring.

Cameron doesn't seem to need much sleep and we have heard hyperactivity can be an issue in NF children. He often is still awake late at night - we put a DVD player in his room so he can watch his movies in bed, the plan being he falls asleep, then we sneak in and turn the TV off. It worked for about 2 weeks, now he is often still awake at the end of a movie, but school tires him a little bit, now he is asleep before 10.30pm some nights - instead of midnight! And yet he is full of energy the next day.

On a positive note, Cameron started school in March. We had always been worried he will be bullied, but so far everything seems to be going really well. He is a little shy but is making friends and is positive about school - he says he loves it.

Cameron loves playing on his trike which he calls his 'work van' and with his cars. Recently he has discovered what the buttons on the Playstation and Xbox remotes do and he is getting quite good at some of the games, but gets really angry when he loses the game.

Monday, May 2, 2005 4:36 PM CDT

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