History

Monday, August 11, 2014 4:52 AM CDT

Cohen is now 21, an age we were told he would never reach, he has weaned him self of all meds except one as it was doing a lot of damage to his body with the side effects, one being his teeth are crumbling. His pain levels are still quite high but he is coping. Some days are worse than others. The tumours are appearing all over his body now and it looks like one of them may need to be operated on as its effecting his arm and hand. Still he smiles and jokes. We head of to Christchurch at the end of August for another appointment with the eye clinic to see how his eyes are going, and hope that the melanoma hasn't reared its head or no other tumours are present within the eye area. will update again at the end of August.

Sunday, October 20, 2013 5:18 PM CDT

Well its been a while since I posted on here and Cohen is now 20 years old he has achieved School certificate 1 and 2 which is an achievement in itself . He has had two knee surgeries to fix his knee caps as they kept popping out so has heaps of scars .He is also on a great concoction of pain medication charted by a Pain Clinic Specialist in Dunedin , seems to be working . As for work well that's a fighting battle as soon as you mention one of the pain medications he is taking then boom that's it sorry cannot work as its an Osh risk . all he wants is for anyone to give him a chance to show what he is capable of , but alas this is a cruel world we live in and a sympathetic though no longer exists in Bosses anymore .

Tuesday, November 27, 2012 10:57 PM CST

Well Cohen has been in Hospital since Friday 23rd November with muscle spasms in his legs , he cannot walk without aid and has no control over his movements , He is going to Dunedin to a Rehab Centre to help him adjust to what he is going through , He has a wheel chair and a walker so will be a very long road ahead of him .We hope he will be home for Christmas , but alas time will tell .

Sunday, July 1, 2012 9:16 AM CDT

O.k folks have been in Christchurch for just on nine days and Cohen was operated on by Dr Martin McFarlane for removal of two tumors of the right arm just below his elbow resulting in 80% Motor and 20% Sensory reduction which may or may not get worse as he heals , so now He has two arms that are more or less buggered and useless to him as his left arm is permanently fused because of his breakage years ago , But he did learn to adapt and use his right arm instead to compensate for this and now we have almost nothing in function for his Right Hand ? Heartbreaking to see and Observe not only for him but alas us too as well . He has seen two Occupational Therapists who have advised us that he is on a very long long road to recovery and yes there are thousands of special gadgets out there for Him that he may be able to use now and in the future , but the reality is 80% total Motor Function of said hand ?I mean we will help in in every aspect that is going to arise for him , but alas we are never going to be there for ever ? Its just another Obstacle for us all and we will take each day as it comes like we have in the past and the road has been full of let downs and bumps and diversions but still we will manage like we have and endure what the future has to throw at us as we cannot sit and dwell on this as if we do , then I believe we may fail and as God is my witness , We are not going to let this happen ever !

Tuesday, June 5, 2012 9:07 AM CDT

Well all paper work had been done for his next operation on his arm , Dr Martin Mcfarlane will be doing the surgery in Christchurch as Dr Beadle was not competent enough to do it ...... All his medications have been changed once again and he is also waiting to have more surgery done on his left patella and then on crutches for 3 to 6 mths and back in for surgery on his right patella , like everything it all takes time so once we get the word to go we are gone . Ronald McDonald House will be our home for the duration of time it takes for Cohen to recover enough to travel back to Invercargill from Christchurch as most of our family will be with him . Nothing more to add so until next entry ...... God bless everyone who has visited and signed his guestbook .

Sunday, May 6, 2012 6:28 PM CDT

Met with Dr Beadle and he cannot do the surgery as it is above him as it actually involves the Nerves and he is a Orthopedic Specialist , so Dr Martin McFarlane the Neurosurgeon will be doing it instead around June , have been told there is 98% probabilty that he will lose the use of his little finger and possibly reduced use of his thumb , if the severity of the thumb is to much then they will try and splice a Nerve from his foot into the arm to try and regain movement , but this will be after the initial operation around one to two months later .Pain wise they cannot give him anymore medication as he is already on a fair amountfor his back pain and it would,nt help anyway ..... So just need to sit back and wait now for the letter from Christchurch confirming time and date .
Once again I would like to thank Ronald McDonald House South Island for there generosity with accommodation and meals whilst we were up there .Will update once again when we know more .

Friday, April 20, 2012 12:09 AM CDT

Well Cohen is off to Christchurch on the 29th April to meet with a Dr Gordon Beadle the only surgeon in Australasia that can perform the specialised surgery that he so much needs on his right arm to try and give him back some of his independance , He also requires surgery on both his knees too and they will be done one at a time with a six to eight month wait between each one to allow for strengthening of his muscles. Pain wise Cohen has been living with a pain scale of 7 to 8 daily and nothing we give now seems to alleviate this , so he spends a lot of time in bed sedated until we can meet with these surgeons . The drugs he takes for his pain cannot be good for him in the long run , but we have been assured that as long as he is in pain then he won,t become addicted , this I cannot believe as they are very strong and addictive pain killers and nerve blockers as well . Each day we see him deteriorating and the feeling of knowing that you cannot assist is very overwhelming . But alas we will pursue the issues head on like we always have as seriously there is nothing new that we can do ..........He is our son and we will do what ever it takes .

Thursday, March 29, 2012 4:16 AM CDT

Spent all day today at Kew Hospital as Cohen has developed another tumour in his right arm just under the inside of his elbow , Going to have two Mri,s doen tomorrow and also a Nerve Conduction test before surgery can be done as the specialists are a bit concerned that it could also be another tumour in his neck as well , thus the 2 seperate Mri,s , He is still on the urgent waiting list for surgery on both his knees as well with a 8 mth Convalesce time for each knee , so they have decided to do one knee at a time to give Cohen the strength to get over one before doing the other as he said that he does,nt want to be in a wheelchair and lose his independence which he has now . He actually asked me a question today that I have been dreading and that was : Why do bad things keep happening to me ? , So I calmly replied that if I knew that answer son we woudn,t be here now , He said o.k and went to sleep .Each day for us is a new challenge as he gets older and wiser , but we will be here for him for as long as we can . .His sister Farrin has also decided to shave all her hair off for Ronald McDonald House in Christchurch , so are quite busy arranging permissions and sponsership for this event as well .Somedays I feel like I have come to the end of my rope and I dig deep and find the inner strength within is always there just waiting like it has every time before and it really scares the hell out of me that one day , its not going to be there and I will eventually crack , Its a very hard battle losing one child to Cancer already in my life and here I am facing the same challenges once again and Honestly its something I really thought that I would never have to go through again . I know its made me a stronger person but to see your child in such pain and turmoil is heartbreaking and something I would never wish on anyone . I sit here writing this and think of the great times we have shared and then again it brings a huge lump in my throat and tears to my eyes when I think of what Cohen has actually gone through in his short 18 years of life and what he has had to endure in that time is beyond comprehension .Will update later after surgery and when we actually know what we are up against .

Sunday, February 19, 2012 6:23 PM CST

Well a few people think I was a bit harsh in the way I worded my last entry about Cohen and his attitude , all I can say is sorry if I offended anyone , but the reality is it was the truth and its been really hard with his new medication , there has been two intervals where Cohen has dropped and stopped breathing thus ensuing Cohen to approach his Paediatrician and actually sign a Do not resuscitate order which has been signed by us as well , this was a hard decision to do , but alas it was Cohens right as an individual to choose this and he did it by himself , He has just recently undergone two emergency MRI,s one for his head and the other of his spine and we are awating the results back on this , also cohen won a competion on facebook for Adventure Aaron http://www.facebook.com/AdventureAaron#!/AdventureAaron?sk=app_187409591310113 and is now on Stewart Island with him and his crew and Erica Donovan the second winner as well , I hope they have a great three days and have a lot of fun over there . I will do another entry once we have the results back from his MRI and we know more about whats going on with his health .

Thursday, October 20, 2011 10:44 PM CDT

Well Cohen has seen the orthopedics specialist and he has decided that he needs surgery on both his knee caps now as they are starting to pop out of joint , when will all this crap end , just think we are getting on top of things with new medication and what knot and then bang it happens again a huge smack in the face ,Cohen failed on his Barista course and funny thing is so did all the other people that had dissabilities , Cohen lodged a complaint and by the looks of things he may get another chance but with a different tutor, his pain remains at a level 6 and has been on new meds now for just over 2 weeks , Consultant said can take up too 4 weeks for improvement to show . They also placed him on Clonidine twice daily , well the night time dose enhanced his Gabapentin to a degree that he became a total asshole , I mean his whole attitude changed from a good kid to an abusive , swearing little prick , so stopped the night time dose and things normalised .I need to ring the pain clinic every fortnight for the next few mths to give a full report on his progress and stability of meds that he is taking , oh well another battle to fight and one where we will succeed once again .

Friday, October 7, 2011 6:24 PM CDT

Been a while and things have changed , Cohens paediatrician has put him off school for 3 years following his last operation and he is having Health School comming in and assisting him to achieve his NZQA credits , He has gained level 1 and is 3/4 way through level 2 and has numerous certificates for First Aid , Food Safety , Kidzone etc etc etc . He is going to do a 3 day Barista course in Gore next week and have had to observe him over the last week as medications have all been increased to the stage that he can actually go into Respirtory Distress , we are waiting to take ACC to court for Medical error and that was lodged in May 2009 and still no sign of a hearing date . Cohen is now 18 and seems to have fallen through the medical system , where no one seems to give a shit anymore and they pass him from one person to another to try and solve his pain problems without success , I myself have to ring the Pain Clinic in Dunedin every week to let them know his progress , so quite possibly another increase will be on the agenda until we can get his pain down to a level 3 or 4 on the pain scales .He is a fantastic kid and it does get to him at times which is very understandable given what he has , There are still no treatments available apart from the pain medication as instructed from the Pain Clinic , which at the moment dont seem to be working , Cohen is after a laptop to continue his schooling as he spends a lot of time in bed as not to aggravate his pain .Mum and Dad are still coping even though at times we both think we are going mad . We thank all that have contributed to Cohens cause and will keep everyone posted on his progress from now on .He is also an active member of Canteen and is on the Comittee as well .

Saturday, July 31, 2010 3:11 AM CDT

Cohen has had three operations done since last journal to removed tumours , the most serious one was on his C1 and is a Rosette - forming Glioneuronal tumour RFGT WHO grade 1 , he has been given six mths to convalesce at home and we have health school that come into our home to do his schooling . They could not get all the tumour as it was growing out of the spinal cord , so he will need more operations every 4 to 6 years as it grows back , we have also been told that the Optic Nerve Glioma that he was supposed to have since he was 3 1/2 never existed and that someone stuffed up , so have the Health and Disability Comissioner looking into this case as to why this managed to happen . The other two tumours were removed from the right and left side of his neck and were just normal fibroma,s associated with Neurofibromatosis and were benign , so this was good news .

Wednesday, June 2, 2010 3:37 AM CDT

Cohen had three operations last week , one to remove the tumour on his C1 and 2 minor ones to remove a couple of fibromas that were bothering him , the Biopsy came back as unidentifiable and has now been sent to Australia to see if they can confirm as to what it is ? we spent 3 weeks at Ronald McDonald House in Christchurch and had the pleasure to meet a few new friends up there as well . We take our hats off to Doctor Martin McFarlane who did the surgery and we could not have asked for a better surgeon , he is the best and also thanks to everyone at ward 28 at Christchurch Hospital . I will write more once the biopsy results come back and we know what we are fighting .

Friday, April 16, 2010 10:33 AM CDT

Well Cohen had an Emergency MRI done before Christmas and a Dr McFarlane wants to do surgery on a C1 cervical Tumor that has developed in the back of his neck , we are on the urgent waiting list at Christchurch Hospital , so just have to sit and bare it now , Cohen has been in a real mood since finding out , but alas I would have to say that he might be shit scared and I think that I would be too given what he has been through over the years with no guarentees .Oh well will do a new journal once we have had something done .....All our love to everyone .

Tuesday, November 24, 2009 12:53 AM CST

Well its been a while since this journal has been updated , Cohen is now 16 and is taking Methadone and Gabapentin daily for pain in his lower spine , which cannot be rectified via surgery , on the good side , we now have a Neurosurgeon that is claiming that the Optic Glioma that he was diagnosed with when he was just 3 1/2 and he had invasive surgery on does,nt exist and never did , Cohen had a very intensive MRI done yesterday to confirm ..... If this is the case , how do you give a kid over 12 years of there life back ? Cohen is very tall and has a lot of problems walking any great distance now because of multiple tumors on his lower spine , we have seen one of the best Neurosurgeons in the Country who has made it quite clear that no one any where in the world would contemplate surgery ....., so take heaps of drugs and she will be right .... oh well just a quick catch up , I will fill in more once we know more , so keep your heads up all that have Cancer or any other situation thats not good or viable .

Monday, November 10, 2008 3:50 PM CST

Shit , its been a while since I have added anything to this journal about Cohen , He is now 15 and just recently went for some Emergency MRI,s and would,nt you know it news wasn,t great , they have found another Brain Tumor growing back into the Motor Neurone section of his brain , so we are currently waiting for an emergency appointment with the Neurosurgeon . I mean we just think that things are starting to look better for him and what not , then BANG it all goes horribly wrong again for him , Its just not right that anyone should have to endure what this child has had to go through , somedays I really wish that he hadn,t been born , I know its selfish to think this but alas after watching my other child writher and die from Cancer and what he had to go through till the end , has just made me wonder what the **** I did wrong to deserve all this torment in my life , still I am thank full that I have my wife and children here for support and alas they are suffering too . Cohen now takes Methadone for pain two times a day and also Gabapentin and it stinks knowing there are no Medical avenues that are available for him apart from Pain Managment , NO Chemo , NO Radiation ??? . I look at Cohen and also relise that there are a lot of kids out there that are worse off than him , but still things don,t get any easier and the burden is taking its toll on me as an individual Mentally and Physically as well . Some days I just want to throw it all away but I know that I cannot as thats just not me , whilst there is still a breath of air left in my body I will do whatever it takes to help Cohen and my family in every aspect of our son,s future till the end , no matter our horrendous the journey is going to be ! I have done it once before , and I know I can do it again but still it does,nt make it any easier as seriousley you do not expect your own children to sucummb to an illness that you have no control over before you !Life is not an easy road .

Wednesday, June 18, 2008 4:34 AM CDT

Well Folks it,s been a while since we last updated this journal , Cohen is now taking Methadone and Gabbapentin plus Oxynorm for chronic pain management and at the moment he cannot fucnction normally because of this , it,s all trial and error with his medication now untilwe find a balance that is right for him to the point that he can return to school and the normalilty of life that he is accustomed too . We are doing everthing possible within our power to help him and its great to know that he has heaps of support from people within the internet circle . Cohen is now 15 , very tall and can barely walk , we are currently looking into obtaining a Mobility scooter so that he may have at least some dignity in getting around without our support .There are no Surgeons in New Zealand that can offer any surgical procedures that could benefit Cohen , so eventually we may have to look abroad .

Monday, November 19, 2007 7:02 PM CST

Been a while since we updated Cohen,s page so here go,s , Cohen is back at school full time and takes his Oxycontin still 4 times a day , he is booked in for another MRI as he is well over due on receiving one . He has good days and bad days and we have been told once again that the chance of finding a Surgeon that is willing to try to help is like finding a needle in a hay stack , so we are really at a loss as to where next ! He has numerous multiple fibroma,s growing around his lower spine and to try and remove them could actually be more damaging for him than leaving them there . Cohen too is sick and tired of being in pain and specialists , he thinks no one believes in what he says ? We take each day as it comes now and just plod on like everyone else that have medical problems that prove to be to much for even the Specialists out there . we look forward to all the response,s we receive and so does Cohen as well ! Neurofibromatosis is a killer Disease and everything that can possibly go wrong has with Cohen and then I look at whats happening around this world of ours and realize that life is a challenge and I have come to the conclusion that in fact life is a Prick !

Sunday, August 5, 2007 8:44 PM CDT

Well we are back from Australia and what fun we had , Cohen went on the Superman roller coaster -- 0 to 100 in 2 seconds , unfortunately he passed out on take off and spent 2 hours at the Medical Center at Movie World , was his first and only extreme ride for the whole 8 days we were there . We stayed at the Turtle Beach Resort in Surfers Paradise and was amazed that we could sit out in the spa pools till 9.00pm at night without being cold , coldest it got was 17 degrees and hottest was 29 degrees , We could not have asked for better weather . We did all the theme parks and Movie World would have to be the best one . We also did all the major malls , Australia Fair , Pacific Fair and Harbour Town , Cohen bought himself a mini dvd player for his bedroom as well as a remote control toy that is not available in New Zealand , His back is really sore and his condition is getting worse as time goes on , He still takes a high dose of Oxycontin 4 times daily and is more or less stoned 24/7 . The main thing is that we all had fun and Cohen actually got to see HOOTERS lol. We want to thank the Make a Wish Foundation of New Zealand for making it all possible . Thank-you

Tuesday, June 12, 2007 11:50 AM CDT

Hav,nt been on for a while now , Cohen is off to Australia with the whole family in July compliments of Make a Wish Foundation New Zealand . He suffers from unbeliveable back pain because of multiple tumours on his lower spine and takes 40 mg of Oxycontin and 600mg of Gabapentin 4 times a day to make his daily life as comfortable as possible . Medically there is no treatment other that pain control management that can be done for Cohen as surgery is just to risky . He goes to school every day and finnishes at lunch time as the drugs knock him for a sixer and he is more or less Stoned 24 /7 . He is a very tall young man now at just over six foot 4 and I will update his photo,s when we come back from Australia with all recent ones .
He walks with a permanent gape and has lost the full rotation of his left arm as he broke it a wee way back and after 4 operations later , it was decided to remove his ulmer and fuse the wrist and elbow , We have to wait for another 2 years before we can claim from A.C.C. for a lump sum payout because of this . He is still the only Child in Australasia that has 3 different types of Cancer .
An Iris Melanoma , A Optic Glioma and a Astro Sarchoma .

Tuesday, March 13, 2007 4:00 AM CDT

Well Cohen will not be going to Christchurch as everything medically that can be done for Pain management has been done via Dunedin Pain Clinic . Cohen now takes 1600mg of Gabapentin per day with Three 30 mg doses of Oxycondone over 24 hours . We have been told that given Cohens rarity with his condition that he should just go for it and live everyday to the fullest and yes by all means go to Australia and just go ballistic as the pain he experiences is actually Nerve pain not skeletal . So we fly out on the 23 July for 8 days of pure adrenalin pumping fun for all the family and Cohen will be stoned 24/7 anyhow ! We as a family are looking forward to the break away from Doctors and Specialists with all the proding and what not , mind you so is Cohen . We are doing everything within our power to make his life as comfortable as possible and him being Stoned all day is the only option available to him now until he ends up in a wheelchair . He still only does 2 1/2 hours Schooling each day with 2 days where he does Health School . He now has his own Mobility card from C.C.S. as his condition will deteriate over time .
I will write again after we get back from Aussie and will also place up New photo,s of all the family , so that all can enjoy . So until then god bless you all.

Monday, January 1, 2007 6:12 AM CST

Cohen has been quite sick lately and it has got to the degree that he takes Oxycontin fro the pain as well as Amitryptaline to stop the pian on his nerve endings , he now has multiple tumours on his lower spine and finds it very hard to walk great distances without assistance , There is nothing medically that can be done for him and we just have to let nature take it course with him , We are all going to Aussie in July back to Surfers Paradise with the whole family this time as this is what he would like to do , before he ends up in a wheelchair . He only does 2 hours school work per day now and we are seriously thinking of doing home schooling for him to makes things more adaptable for him . We go back to Christchurch in Febuary and will keep everyone informed of what happens during that visit with all his specialists .

Friday, November 17, 2006 3:17 PM CST

Been a while since I have updated this site , Cohen has had numerous problems , the first was he broke his arm over 2 years ago and was in a cast for over 18 mths , they removed his ulma bone and had over 3 operations , he also has numerous tumours now on his lower spine and is on a b controlled drug for pain , he only does 2 hours schooling per day now and has reel trouble walking . He however is still the same happy chappy that everyone loves and we would.nt change him for the world !

Monday, April 3, 2006 2:54 AM CDT

Well people have not been online for a while now . Cohen has now developed tumours on his lower spine and after being in a cast for over 15 mths , he will be having surgery once again on his arm to remove the ulmer bone and they will also fuse the bones together so he will not be able to rotate his arm at all , He has slight scoliosis of his spine as well and takes 120mg Codeine Phosphate per day to kill his pain , One of his Cancer friends died recently aged 13 and she was one of Cohens secret admirers at Cancer camps , she wanted to see her 13th birthday and her wish was granted but alas . Cohen has had a lot of time of school already this year and no doubt there will be heaps more . We love seeing people being so positive and hope the faith and kindness continues , so until next time .
xxxxxxxxxxx

Wednesday, January 18, 2006 11:20 PM CST

Cohen has had a really bad year and is now back in a cast , there is a good probability that he will lose his arm , He has been in a cast now for over 12 mths with two operations on the arm to try and fix it , the first with Titanium, rods and the second with steel plates and screws , neither have worked as yet . He also has lower plexiform tumors growing on his lower spine that are starting to give him problems too . He has missed 86 days from school lats year and we hope that 2006 brings better news and technology in advancements of treatment for him . Eveyone have a great new year and thanks for all the support .

Friday, November 18, 2005 1:39 AM CST

Cohen went under the knife and is in Invercargill Hospital until the 19/11/05 , He is still very sore as the re-broke his arm and had to take a bone graft from his hip , we are applying back to the Koru club to see if we can get him a trip over sea,s . We will be updating his photo,s soon with more recent ones and we really love to read all the feedback from visitors on this site .

Friday, November 18, 2005 1:39 AM CST

Tuesday, November 8, 2005 0:48 AM CST

Well Cohens surgery on his arm has been delayed until next Thursday , We have spoken to one of his doctors who is making contact with Andrew Law at Starship Hospital with reards to Neurosurgery as Cohen has multiple tumuors growing on his lower spine , so a trip to Starship before Christmas is on the cards , He is a bit upset about the colour of his new contact for his eye , we have assured him them it can be changed and won,t be a problem and this will be done as soon as possible .
Cohen is still a bit annoyed at Whitewolf from Waihi and the issue of his mountain bike not been painted as promised ,but alas that is life . The only person you can really rely on is yourself .

Friday, November 4, 2005 2:20 PM CST

Been a while since I updated this , Cohen is going back into hospital next week to have his arm re-broke and steel rods and a bone graft put in place , He is under investigation by specialists as he has had very sore lower backs and a MRI showed numerous Neurofibromas on his lower spine . Cohen has also recieved his new contact lens for his eye , but alas it will have to go back as it is the wrong colour . Will keep you updated in the future .

Friday, September 30, 2005 1:54 AM CDT

Cohen met with the fracture clinic in Invercargill this week as he has been having major problems with his joints where they actually pop out of there sockets , A MRI was done recently and shows he has numerous plexifibroma,s on his lower spine and will need to see a Paediatric Neurosurgeon either at Christchurch Hospital or at Starship , who ever is the better medically for Cohen , he is currently taking 30 milligrams of Codeine Suplhate plus Ibo-brufen as well for pain which will be increased in the future until he is actually seen up north .We will keep you up to date as things progress .

Sunday, September 11, 2005 10:49 PM CDT

We all spent this weekend on Stewart Island with all the other cancer kids from Camp Quality and had a great time .
We went on fishing boats and over to Ulva Island and saw the weka,s , parrots and heaps of sandflys that had a great feed from all of us , the trip on the new Ferry
was incredible , very fast and calm .
We cannot thank our hosts the Local Lions Club on Stewart Island enough for making it all possible plus all the locals on the Island that made our trip such a memmorable experience .

Friday, August 12, 2005 6:42 AM CDT

Hi all this is an update on Cohen and what has been going on , Well for starters He has been bullied at school and has been punched repeatedly in his lower back by these tossers who think they are better than anyone else , Cohen is still having seizures and he had a major one 2 days ago on the way home from school and he wet and dirtied himself , The thing was that not one person stopped to help him , What sort of world are we living in when a fellow person will not stop to help another whom needs help , Cohen has another MRI done in 1 week and also meets with his pediatrician next week too . He is waiting to get his bike back from up north and has decided to keep it in his bedroom as a precaution , so it won,t get damaged at school or by himself should he be riding it and he has a seizure , He takes his epilim 3 times a day . We are saving like hell , so that we may all go to Australia and travel from Sydney up the coast to Brisbane using a rental motorhome . I will keep you posted on what happens with his MRI and I want to take a moment now to thank all that have signed and supported Cohen during his ordeals .

Tuesday, July 5, 2005 6:47 AM CDT

Cohen since returning from Christchurch has had a couple of seizures and is back on his epilim , he has also gone downhill with his motor skills and was tested at Kew Hospital for the child development service under the movement ABC , the summary was that Cohen has definate motor dificulties especially with hand-eye co-ordination and balance tasks , The results from the Rivermead Behavioural Memory Test indicates that Cohen will have difficulty recalling verbal information including instructions given to him by any peer .So Cohen will be getting help not only from us , but also from special Therapists that are going to meet with him on a one to one basis . Cohen is really looking forward to getting his bike back plus his birthday is comming up as well , we keep our fingers crossed and hope that his condition won,t deteriorate to quickly .

Sunday, June 5, 2005 1:27 PM CDT

Hi everyone , Since returning from Christchurch , Cohen had a massive seizure and is back on Epilim , he cannot remember things and his pediatricion is contacting a Paul Shiletto in Christchurch again to see what should be done , A MRI or CT scan is on the list with very controlled monitering of Cohen himself within a hospital situation .
He cannot even play his x-box games that he use to excell at and gets really frustrated and angry .
He has no recollection of Christchurch or meeting Mark Elder , so we will keep this post updated as we find out what and why this is happening .
xxxxx to everyone that has offered there support .

Monday, May 30, 2005 2:50 AM CDT

O.K folks we have been up in Christchurch staying at the Ronald McDonald house , we met with professor Mark Elder from the Christchurch Eye Clinic and was told that there are no treatment options available for Cohen , but on the good side all is going well , Cohen will be getting a professional contact lens made for his bad eye and wewill be having regular visits at six monthly intervals .
We are looking forward to getting home and to sending Cohen,s bike up to Waihi to get airbrushed by a beautifull person whom offered to do this after reading this website and who has kept in contact via e-mails and what not .
Hopefully Cohen will be able to get back into the routine of things and we are all thinking of moving to Christchurch in the near future for medical reasons .

Wednesday, May 4, 2005 5:59 AM CDT

Hi folks , well we are off to Christchurch Hospital Eye Clinic to meet with a Dr Mark Elder on the 30th of May in respect to histology that was sent to the Wills Eye Clinic in America . We are going to be driving up there and it will be great to get away for a couple of days or more depending on what issues are raised and as to what actual treatment options will be made available .Cohen is looking forward to getting his new bike airbrush painted by a very generous person , whom made contact with us via this web site and we thank all who have made it So . For all that don,t know Cohens condition here it is .
Cohen has a disease called Neurofibromatosis , he also has an Optic Glioma ( Brain Tumour ) behind his Optic Nerves which is inoperable , plus he has an Iris Melanoma of the left eye which has been excised , he is the only child in the whole Southern Hemsisphere with this condition , He has two seperate types of Cancer which are both very rare and serious . To date no treatment has been available , so keeping fingers crossed that this may have changed .

Friday, April 29, 2005 10:15 PM CDT

As you can see by the photo,s Cohen did go to Australia as a Jingle Bail Child with the Edge Radio Station , It was supossed to be a trip of a lifetime , but alas Cohen was not allowed to do any of the rides over there because of his broken arm as he had a titanium rod in it. He also gets a lot of flack at school because of the way he looks as he is different , he got a new bike for xmas and he is still not allowed to ride it al least for another 2 mths .
He loves playing the x-box and never lets anything get him down . His conditon is terminal and not one specialist can give a definate answer as to how long , so we treasure each and every day that we have with him .
He is a superb kid .

Friday, April 29, 2005 5:16 PM CDT

Our son Cohen James Brown was born the 21/7/93. Cohen was two when he was diaganoised with Neurofibromatosis . At the Age of 3 it was discovered that he had an Optic Gilmoa and was operated on at Dunedin Hospital, the tumour could not be removed as it was too dangerous. Cohen then developed Epilespy and had nocturnal grand mal seizures, all of which needed hospitalization on many ocassions , we nearly lost him because of these seizures , the longest one he ever had was for over 2 hours where this one Doctor bagged him for the entire period , so that he could breathe .
Cohen has also had a major operation done on his left eye by a Professor Richard Clemett at the Christchurch eye clinic for an Iris Melanoma , He is the only childin the whole Southern Hemishphere with this condition . He started to have back problems and problems with his arms and legs we were told that the muscles that pulled away from the tendants he felt as though his bones were *clicking* he was put on medication and an scan was done,it was found that he had scoliosis of the spine and it would develop quite fast so 3 monthly checks would needed to be done. In December of last year Cohen fell breaking his lower arm badly in two places this took two operations to fix and it was found that the bones in his arm where bowed and this is why it broke so bad and took so long to heal he was in a cast for over 4 months. He had an eye check done a few weeks ago and another tumour in his eye apears to be growing we are waiting to hear from Christchurch Eye clinic on what steps we are to take next. We have been invited to meet with Jerry Sheilds in the USA who works at the Wills Eye Clinic and who is a leading doctor in eye cancers but this is not possible because of the cost invovled. Neurofibromatosis causes many problems within the body including death. It causes tumours to grow on every nerve ending in the body, it also can cause learning and behavoural problems. People with Neurofibromatosis can also develop depresssion easily. This condition is known to be one of the worse genetic conditions known to man.

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