12th January 2003 until present date
12.01.03
Well folks that's another year started, how time fly's. We all had a great time at Stirling Castle on New Years Eve, a wee bit cold but great fun. Kieran thought the fireworks were fantastic and he thoroughly enjoyed himself.
He was "jigging" to a Scottish folk song and dancing to a Canadian Barn Dance that he got taught at school.
We are due back up to Yorkhill for his scheduled C.T.Scan next Thursday with the results due the following week. At present he is still keeping well.
12.01.03
Well folks that's another year started, how time fly's. We all had a great time at Stirling Castle on New Years Eve, a wee bit cold but great fun. Kieran thought the fireworks were fantastic and he thoroughly enjoyed himself.
He was "jigging" to a Scottish folk song and dancing to a Canadian Barn Dance that he got taught at school.
We are due back up to Yorkhill for his scheduled C.T.Scan next Thursday with the results due the following week. At present he is still keeping well.
Kieran & Mum on a freezing Stirling Castle Esplanade. Hogmany 2002
02.02.03
We received the results of Kieran's CT scan last week and once again the Tumour has remained static. This is excellent news as he continues to keep good health. Kieran has been enrolled into the local Scout troupe and just this weekend he was away to "Lapwing Lodge", an activity center near Glasgow for a day trip and nature walk. He just continues to go from strength to strength long may it last.
We are preparing to launch a model rocket that Kieran received for Christmas in the next few weeks. He is really excited at this, as the rocket is no toy and is expected to reach approx 250 ft in altitude. We are planning to have a launch party with some of his friends attending. (Uncle Stuart better not fly his model plane that weekend) We'll keep you all posted on its success.
06.04.03
Kieran is keeping extremely well at the moment we were away for a short break last month to Aviemore, a small town in the Scottish highlands, we all had a great time here. Kieran even managed to leave a message on his guest book from the restaurant at the summit, the wonders of modern technology.
We have launched his rocket a few time s over the last month and he gets very excited at this as he's the Launch Controller and looks forward to the countdown before it shoots into the sky.
Kieran and Rocket getting ready for launch 05.04.03
Kieran down at the Rocks June 2003
22.06.03
Sorry for the lack of updates recently but we had major tech difficulties with the P.C. thankfully they are now fixed. Kieran continues to keep excellent health and as you can see from the new picture above he looks great. We received first class reports from his teachers during the recent Parents Evening, we are delighted with his progress. As a reward we are going to Disney Land , Orlando in September where we all will have a great time.
18.07.03
Kieran is continuing to keep good health although he is complaining of a sore leg at the knee joint. We have taken him to the doctors and they seem to think this is down to growing pains.
We took Kieran Quad biking last weekend, he has been asking to do this for some time. He had a fantastic day and thoroughly enjoyed himself. I have included some new photos of his day out.
Schumacher Who ?
Kieran Quad Biking July 2003
16.08.03
Kieran attended Yorkhill last week for his scheduled CT Scan although there was a problem with the CT Scanner all the images were taken .We will receive the results when we see the consultant on the 27th Aug. Over the last few weeks Kieran has be complaining of headaches more regularly he is also saying that his right eye is sore more often. Although we are obviously concerned and anxious at this. We are confident that the scan results will be positive. In the mean time we have to keep strong for Kieran and are counting down the weeks until our holidays to Florida.
Kieran Riding the Waves, Hawaii 2003
(Only Joking Solway Firth Scotland)
27.08.03
Excellent news from today's meeting with the consultant. The Tumor has once again remained static. The medical team, as well as us are delighted with Kieran's progress over the last 4 years. It was 4 years virtually to the day that Kieran had his surgery. He has progressed so much over these years continually amazing us and going from strength to strength. We are going on holiday next week to Orlando where we are sure to have a great time.
Kieran and Space Cadet Mickey
Epcot Center, Florida 2003
29.09.03
Well folks, we had an excellent time in Florida. Kieran was great and was amazed at the Magic Kingdom and all the other parks. We did all the Disney parks and went to the 3 big water parks. We spent quite allot of time at Cocoa Beach surfing and boogie boarding, unaware that the sharks were biting a few miles up the coast at Daytona. The Space center at Cape Canaveral was outstanding and Kieran was overjoyed at this park. Overall we had a fantastic time and most of all Kieran was of excellent health throughout the trip.
Kieran the "Cool Dude" Florida 2003
Kieran & Goofy, Magic Kingdom 2003
20.12.03
Kieran continues to keep good health and is looking great at the moment. He is eagerly awaiting Santa's arrival although I think this will be the last year we can bribe him with the Santa story. He told me the other day that Santa was a fake.
Although he is keeping well we have been attending Yorkhill regularly to try and get his eating or lack of eating attended to. We have been put in touch with the feeding clinic who are monitoring his weight loss. The consultant has referred Kieran to an Endimetriologist (forgive my spelling) who has a theory that the tumor may have damaged Kieran's Pituety gland. This is something that we have said all along, so we are grateful at last that someone is taking our comments seriously. This appointment is scheduled for January. We also have a meeting with the Surgeon who carried out Kieran's op, this is just a follow up meeting to see how Kieran is progressing.
We have some snow forecast for this weekend so hopefully Kieran will get out sledging and have some fun playing in the snow with his friends.
Have a great Christmas from all of us here to all our friends everywhere.
07.01.04
Unfortunately we have to start the New Year with some unexpected bad news. Yesterday we attended the meeting that was arranged with the Neurosurgeon and was dealt some devastating news. She had studied in more detail the CT Scans of last August and had some concern over the increase in size of the Ventricles. They have increased in size quite considerably and she needs to find out why. We have been asked to attend the Southern General Neurological ward on Monday for a CT Scan, she hopes to receive more detail from the scan which will determine the future treatment.
We are totally shocked considering how well Kieran is doing. He is showing none of his previous symptoms and is looking fit and well. We hope and pray that because of this the Tumor hasn't began to increase in size.
We keep you posted on the news of the scan results.
11.01.04
Just a short update prior to taking Kieran up to the Southern General Hospital tomorrow. He is still keeping well although he complained yesterday that he had a headache and that his eye was sore. Today I took him out on his Quad Bike for some fresh air and he had a wonderful time in the woods, although it was freezing, never mind he was well wrapped up.
Tomorrow will be a testing day for us all but we will just have to be positive and strong for his sake, unfortunately we wont receive the results until later in the week.
Check out the new pictures of Kieran on his new Quad that he's uncle Peter got him for Christmas.
Stopped in the pits for a wee packet of Smarties
16.01.04
We attended the Southern General Hospital on Monday as planned and Kieran was seen by a Neuro Ophthalmic Doctor who gave him a very thorough examination, he had his eyes tested, field of vision tested and most importantly he checked for pressure behind the eyes. All test results were good and the Dr confirmed NO pressure within the Brain. This was positive feedback. After lunch Kieran went down to the CT Scanner to have his scan, which he did with ease.
We contacted Miss Brown's secretary on the Wednesday to receive the results, only to be told that Miss Brown had sent a letter asking us to attend the clinic on the 27th Jan. Because of this time scale we are a little bit confused. If the scan was just routine why was such urgency put on the appointment? and if the results of Mondays scan had shown any concerns surely we would be asked to attend a meeting long before 27th Jan for the results? We are still trying to contact Miss Brown for more clarification, in the mean time Kieran is continuing to keep well and looking forward to more Quad bike riding on Sunday.
I'll keep you posted on any further developments
28.01.04
We attended the Southern General yesterday and had our consultation with the Neurosurgeon. Unfortunately the news was not good, but to be honest was what we were expecting. She showed us the scan results from the previous week and took great time to explain the changes. On a positive side there is NO evidence of the Tumor increasing in size but the bad news is that there is a cyst forming on the topside of the mass.
Miss Brown then went on to explain the options on treatment with surgery being the most likely option that will be taken. She explained that Kieran will require an Angiogram, we hope this will take place within the next 2-3 weeks. The reason for this is to get a more detailed map of the artery's supplying the Brain/Tumor. She is of the belief that when the cyst is removed there may be an opportunity to remove more of the Tumor mass, if she can determine what vessels are feeding the Tumor. As well as this she will replace the Stainless clip within the brain with a Titanium one.
Obviously this is not the news that we would have liked but we are keeping positive that some more of the Tumor will be removed during the delicate surgery. Fortunately we have had 5ish great years with Kieran enjoying his health and we will just have to put our trust in the hands of the specialists and look forward to his recovery.
09.02.04
Kieran attended the Neurosurgical unit at Southern General Hospital today to receive his Angiogram. His treatment all went to plan and Kieran came round from the Anesthetic a little bit groggy but otherwise fine. He was complaining that the area where the needle was inserted was pretty sore but this is to be expected.
We caught up with Miss Brown, the neurosurgeon who said the results were good and had gave her a more detailed plan for the forthcoming surgery. Kieran has been kept in hospital overnight and will have a CT scan tomorrow before coming home.
10.02.04
We received some more news from the Neurosurgeon before e being allowed home today. The images that were taken yesterday and also today's ones indicate that their is a large artery running through the tumor mass. This is not very good news as it changes all the plans that we were hoping on.
Miss Browns states that because of this new evidence the risks are now too high at this stage to carry on with the planned surgery and has resorted back to the Stereotactic needle biopsy option .This will hopefully remove the liquid from the cyst by needle and although still carries a high risk is more favorable than the original plan.
We have to return to the Southern General tomorrow afternoon, with the surgery planned for Thursday. Although this type of operation only takes approx 2-3 hrs Kieran will be in hospital for 5-7 days. We will be keeping our fingers crossed that all goes to plan.
12.02.04
Excellent News Today !!!!!!
Kieran went down for his operation at 11.45am today and the results were more than we could have hoped for. The surgeon successfully removed -without any side effects occurring 12ml of low viscosity fluid from the cyst. This news was truly remarkable considering the risks that were attached to the operation. By 3.30pm Kieran was sitting up in bed ,drinking and asking for a McDonalds. What a Brave soldier. We will have to wait a few days to see if the removal of the fluid has released the pressure on the area of the brain controlling the left side. But in the mean time we are both delighted to have our special wee boy back with us. We congratulate all the medical team involved in today's operation.
16.02.04
Kieran returned home today, the doctors are delighted with his progress over the last few days. He is continuing to make progress with his left arm and there is a definite change in strength since the op. This is all great news. Kieran will continue on steroids for the next couple of days, these are just to keep any swelling of the brain to a minimum.
We are planning to go away for a short break this weekend to recharge our batteries. Probably through to Edinburgh, this all depends on how Kieran feels over the next couple of days. We don't have to go back and see Miss Brown until 3 months where see will give us the results of the biopsy. In the meantime we are going to enjoy Kieran's good health once again.
Kieran after the operation to remove the fluid from the cyst
The next day, amazing what Coca Cola and Tomato Soup can do to aid recovery!!
27.02.04
Kieran is now back at school and keeping well. We enjoyed a few days break through in Edinburgh last week where we visited the Castle and all the other tourist attractions. Kieran was doing a project at school all about Greyfriars Bobby so we made a point of visiting this area. We are continuing to keep a close watch on Kieran's strength particularly in the left arm but at this stage things are continuing to look good.
Kieran and Greyfriars Bobby - The Scottish Terrier who kept a 14 year vigil at his masters grave.
Kieran & Dad at Edinburgh castle
24.05.04
Since the operation Kieran has kept reasonably well. His left arm has lost some of the strength that he gained after the op. We also raised our concern with Miss Brown, Neurosurgeon that on 3 occasions since the operation Kieran has passed out while being sick. After the vomit has passed he remembers nothing of the incident.
Because of this worry Miss Brown requested that Kieran be admitted back into the Southern General to undergo another operation. This time they would insert a ICP Monitor (Inter Cerebral Pressure) for 24 hours and monitor the fluid pressure within the brain.
I'm pleased to say that Kieran underwent this operation today and is in the Southern for the next 2 days. The operation was a success and we will just have to wait and see what the results bring. If the results show an increase in cerebral fluid pressure he might have to undergo another operation to have a shunt fitted. We will just have to wait and see. Otherwise he is keeping good health and enjoying his school time.
Kieran after surgery to have the ICP Monitor fitted to his head 24.05.04K
03.06.04
Kieran was re-admitted back into the Southern General yesterday 02.06.04.The results of the ICP tests did show that Kieran intermittently suffered from high pressure within the Brain. It was decided to perform the shunt operation as soon as possible. He was scheduled to have the operation today and as i speak, can confirm that it went as planned.
Kieran will have the shunt inserted within the left ventricle of the Brain. This acts as a non-return valve and will greatly reduce the pressure within the Brain. The shunt will remain in the ventricle for ever only being changed if he outgrows the length or if an infection develops within the shunt chamber.
Kieran after his Operation to insert VP Shunt 03.06.04
13.06.04
Kieran is now back home and recovering from the Operation to have the Shunt fitted. So far this seems to be working as he has been sick twice since coming home last week and both times he hasn't passed out or had any seizures. This, hopefully, can only mean that the shunt is performing as it should.
He has to stay off school for the next week so he is excited at this prospect. Although he is still quite weak he is gaining strength each day. Miss Brown told us just to keep a close watch on Kieran but she has not gave us an appointment to go back up to the Southern General to see her, we will just play it by ear and pray Kieran continues to gain strength each day.
Kieran 4 days after his operation and gaining strength daily.
23.07.04
Kieran has had a very roller coaster last few weeks since the operation to insert the shunt. He continues to be very lethargic and low in enthusiasm. We did enjoy a short break down at his cousins in Chippenham, near Bristol. We all had a great time here and re-charged our batteries- just what we all needed. Since his return last week he has been complaining of headaches and has been vomiting more regularly. We took him back up to the Southern General yesterday where he was given a C.T. scan and blood tests . The scan was to see if the shunt was working correctly. The results were very encouraging. The shunt is doing its job and Kieran's blood tests were all clear. Miss Brown asked us to keep close watch on Kieran but as far as she was concerned all seemed to be well. We will just have to wait and see, maybe he has picked up a bug when on holiday.
29.08.04
Kieran continues to keep relatively well. Over the last month he has had quite a few 'off days' where he has been very tired and lethargic. He also has headaches regularly and on occasion is sick. This may all sound as though Kieran is not very well, but all in all he is keeping well. Unfortunately it seems that since he had the shunt fitted he has became more ill. Prior to the shunt being fitted he was only sick on a few occasions.
Apart from his 'off days' we try and do as much as possible on the 'good days'. last weekend we cycled 10 miles round a small island called Little Cumbrea off the west coast of Scotland. The weather was great and the scenery even better. Stopping for a picnic in the small seaside village. Kieran had a great time.
We are expected to meet up with Miss Brown, Consultant within the next few weeks where we will discuss Kieran's health in more detail.
Kieran having a great day at Millport, Isle of Cumbrea 2004
27.09.04
Kieran has had a roller coaster last few weeks. His left arm has become progressively weaker and he has been complaining of bad headaches and pains in his right eye. Because of this he was asked to attend the Southern General on Monday 13th September to receive a C.T. Scan. The results of the scan would allow Miss Brown to see how much the Cyst had filled up.
The results showed that the cyst had filled up since the last C.T. Miss Brown asked us to come back on Thursday 17th Sept for a thorough eye check up with the ophthalmic consultant. This was carried out and Kieran once again took everything in his stride although the Dr had a problem getting the canula in Kieran's wrist. Three times of trying before a success.
We came back to see Miss Brown in the afternoon and she explained the results of both the C.T. and the eye tests. The eye tests revealed that Kieran has some double vision in his right eye, we had expected this for some time as the nerve that was damaged during the original surgery controls the muscle that adjusts the focusing of the eye. We have been given exercises to try and correct this weakness. Apart from that his eyesight is the same as it was in January. This is relief as Miss Brown had thought the cyst was affecting the nerves that operate the eye, giving Kieran pain in this eye.
The result of the meeting is that yes, Kieran will have to have the cyst drained again but Miss Brown is hoping to leave it as long as possible before needing to perform the needle biopsy. She is also going to insert a fibre optic tube into the cyst and this will be left in place allowing her to use the tube to drain the cyst if needed in the future.
At present we are trying to cram as much fun things into Kieran's schedule as possible, knowing that in the near future he will have to have another major operation on his Brain.
02.10.04
Reporting back sooner than expected. Kieran was admitted back into the Southern General yesterday (Friday 1st Oct) with severe headaches and pains in his right eye. On arrival he was sent for a CT Scan to determine if the shunt was performing as expected, the results showed that it was. This wasn't exactly the news that we had hoped for.
On seeing Miss Brown, Kieran's consultant she explained that the most likely cause of the headaches, now that the shunt was given the all clear, was that the cyst had started to cause increased pressure within the area of the right temporal lobe.
Kieran was kept in hospital overnight and started on a course of steroids. We will be going back up to the hospital on Wednesday where he will get bloods taken and meet with the anesthetist. The operation will be performed on Thursday.
Kieran will have another stereo tactic needle aspiration to remove the fluid within the cyst, the fibre optic tube will not be inserted at this point. Miss Brown will wait and see how long it takes for the cyst to fill back up after Thursday's operation before making the decision.
Once again our brave wee boy will have to endure another major operation in quick succession, he is putting a brave face on things at the moment but it is clear that he is getting tired of all the hospital attention. We just try to keep him positive and explain that each time he attends the Southern General it is to make him better.
I'll give you an update on how the operation went next weekend.
11.10.04
Kieran's operation didn't go as planned this time. As we expected the cyst was to have been drained of fluid and the tube inserted for future aspiration unfortunately this didn't happen. Yes Miss Brown did manage to withdraw approx 10ml of fluid, much less that she had hoped for, she felt that because of the small amount of fluid that was removed this time it was not viable to insert the tube into the cyst for future aspirations. She also re-inserted the needle into another area of the cyst to see if fluid could be drawn from here. This also proved unsuccessful.
Kieran is now home from hospital but is still in considerable pain. There has also been now improvement to his left arm this time, we have also noticed a couple of other symptoms, a slight tremor in his left hand and he is dragging his left leg. This is not what we had expected.
We will have a consultation with Miss Brown over the next couple of weeks to discuss his future hospital plan. It is becoming more evident that another craniotomy will have to be performed in the near future. This, as Miss Brown has said is only going to be for the removal of the cyst and possibly some more of the tumor mass. It is still not an option to try and remove the complete tumor mass.
As you can imagine we are all a bit demoralized at present, but for Kieran's sake we need to remain positive.
Kieran after his 2nd Stereo tactic Needle Aspiration 07.10.04
20.10.04
Kieran has had a very bad couple of weeks. Since returning home from the SGH he has continually complained about headaches and sharp pains behind his right eye. On top of this the left arm is virtually no operative. We expressed our concerns during the appointment to remove the clips on his wound. Dr Walsh-Miss Brown's assistant gave Kieran a thorough examination and confirmed our thoughts.
Kieran will have to go back into hospital in the next week or so to have the big operation. It is the intention of Miss Brown that she will perform another craniotomy to remove the cyst and accompanying membrane of the cyst. She will also attempt to remove some more of the tumor. The positive news, if there is to be any, is that the cyst is lying to the right of the main arteries and hopefully clear of any incisions.
At present we do not have a date for this surgery but Kieran has been started back on Dexamethasone, this is a steroid that reduces the swelling in the normal tissue around the tumor. We are confident that the surgery will go ahead in the next week or so and we can then tackle what lies ahead for Kieran.
