Regular Updates
Here we will be posting information about Gus' treatment and progress. Please come back regularly to stay informed.
March 30th 2008
It has been a while for this update for reasons as;
End of August 2007 our outdoor school attending , football playing big boy ran into the hospital Ponchaillou in Rennes France having complained for 3 nights of having a headache (night time only). Gus was seen by an oncologist and neurosurgeon whom agreed whilst there was no abnormal signs clinically in Gus - one of the shunts in Gus's head was perhaps under performing.
Without a scan it was decided that a routine procedure for correcting the under performing shunt be carried out and we were informed Gus would be in and out of surgery and could have food one hour later. Gus remained in theatre for 7 hours + he was returned to a low risk ward having suffered some 'minor bleeding' during the routine procedure. During his return to a normal ward Gus suffered further bleeding internally and started to have convulsions, he was rushed into a scan which revealed both compression and a cyst.
We were advised that the cyst would have to be drained as it was large (69ml drained off) and Gus would have to have an external shunt for a short period of time. Gus has never spoken, walked or eat since - he had a further 8 (firefighting) operations in France whereby it was declared that nothing more could be done and he would die.
We transferred Gus to Gt Ormond St Childrens Hospital (luvly Parrot Ward) whereby it was discovered that Gus had a severe shunt infection which was left undiscovered by the team in France despite the continous presence of an infection somewhere. Gus was treated by the most fantastic supportive team of medical staff that we have experienced and this is no mean feat considering the 4 years and different continents/hospitals/clinics we have been to.
Gus stayed at GOSCH having pulled through surviving an infection that you just dont!! Gus was taken as far as possible with maintenance and treatment and his little body had taken a real bruising,Gus left GOSCH with a similar outcome predicted for the future as the team in France.
We have Gus back home at in a much loved environment with home food,health supplements and now cold laser therapy (acupuncture with laser) as we are not prepared to simply throw the towel in. Our son has good days and bad days --- but they are all extra days to fight for and as long as Gus is prepared to fight then so are we.
Love you 'Big Boy'
Mama,Papa,Amelia,Newby & Gaige
XXXX
January 2007
Another christmas has come and gone, thankfully this year uneventfully!! (with Gus).
Father christmas spoilt the children this year, with the highlight event of Gus riding his first big boys bike albeit with a feminine touch in the dolls seat attached to the rear for the purposes of strapping his pump/medical bag on!!! The beaming smile and giggling when racing his sister was a moment that was priceless.
We are stable in all aspects of the condition and continue tapping away at the 'rock' as one day that rock will be BROKEN!
To our network of supporters we wish you all a great year for 2007 and thank you from our hearts for all your actions, thoughts and prayers.
With all of our love,
The Lilley Bunch
XXXX
October 3rd 2006
We have held back the latest MRI scan initial results as there were conflicting reports. Initially we were informed of a whopping reduction which unleashed a whole bag of emotions, however as we have learnt if all parties do not agree the patience is a virtue.
We realised the error through our own scrutiny of the scans and realised the comparison for the latest scan was put against a scan result of 2005! It was a small knock which we recognised as a genuine error and laughed as foolishly our hearts had overuled our heads (sometimes no matter what is obvious you just dont see it!).
Gus is stable with no progression we have alikened his tumour to that of a peach of which all the flesh of the fruit has gone but the stone is there which will take longer to crack.
Gus is in school and it has to be said not only does he enjoy it immensely, his progress has been quite amazing in particular to his grasping of the French language of which he 'waffles' in all day long!!
All in the household are doing very well and its that time of year again to prepare for the arrival of 'Pere Noel' and his mince pie and sherry habits!!!
As ever our love-thoughts and warm wishes go out to all the team and support network.
Love the lilley bunch
xxxx
May 10th 2006
We received the results from the latest MRI scan and as agreed by all parties (this is a first!) stable aspect with increased necrosis, effectively the tumour has not moved but looks better!! I hope that makes sense!!!
Gus's development is well on course and is equal to that of any regular boy of his age, this includes both mental and physical attributes.
We are pleased to say that Gus is demanding more and more food by mouth and progress in this area is all his own doing~~ the spicier the better!
Gus will be starting regular school sometime this September coming, the sooner the better as the daily enquiry of 'Am I going to school today?' is driving us mad!
Next MRI is due in July and we will be pushing for another breakthrough.
It can never be said enough 'ALL OF OUR LOVE' goes out to the TEAM, family, and the ever increasing support network of friends.
The Lilley Bunch
xxxx
January 10th 2006
This year christmas came early in the 'famille lilley' household, the big boy of the house had his MRI scan on December 9 and the result was............... a further reduction in the tumour to the tune of 10%!!!
We held onto this news until the arrival of the written confirmation, but needless to say christmas was a very happy occasion XXXXXXX.
Santa duly delivered Amelia's bike and Gus found himself with two toolkits (Santa I think had drunk one glass of sherry too many before his delivery!) Turkey & trimmings with bingo & horse racing thrown into the pot, made the day.
We again nervously look forward to the next MRI scan due end of January 06.
Wishing all of our friends & family & team a great new year full of promise.
With our love
The Lilleys
xxxx
October 17th 2005
Oct 05
28% Tumour Reduction!!!!!!!
Yes we finally have written confirmation of our extraordinary news!
The big boy has made fantastic progress in all area's, speech, co-ordination and a great concern of ours 'Gus is now walking unaided'!!
We feel light and giddy, its, if you could imagine--like having an anchor around your neck that someone has lifted off and you now are able to look ahead into the future with renewed energy and vigour.
There are we know many more battles to come, with the support of our friends and family, the battles will always be fought and god willing be won.
With our renewed strength and resolve.
Love 'The Lilleys'
xxxx
August 9th 2005
News! News!! News!!!
6% TUMOUR REDUCTION xxxxxxxxxx
We anxiously await the second opinion of GOSCH, and 'nervously' look forward to the next MRI scan~~~ could this be the breakthrough? Can miracles happen?
We have held onto this information for two weeks, not daring to believe it, emotions are running high and if someone up there is listening to Gus's faithful circle of friends & family, then note 'the tears are of joy this time'!!
Our strength comes from those who know, it is you that we are in debt to and you that we offer all of our love.
The Lilleys
xxxx
June 18th 2005
June 18th~~ 'Guster Day', yes the big boy is 2 and don't we know it!! Gus had a great day with lots of presents, cards (spoilt as ever), we had a little garden party with a big homemade chocolate cake (which the more senior members at the party ate the greater part of!!)
We have another MRI scan booked for the 11th July, our wishes and hope is for a unified decision of stability, as any 'gentle' growth could jeopardise the current situation.
With our love,
The Lilleys
xxxx
June 9th 2005
25/05/05~~~~~~'Newby Day'! 7lb 8oz of trouble arrived!!!
The latest addition to our growing family arrived at 02.28am and it has to be said 'He is perfect'. A character already with appetite and attitude! Well done mummy...
We attended GOSCH on Monday the 6th June to discuss GOSCH's opinion of the latest MRI scan. Not good news, GOSCH are of the opinion that there has been further growth and will be recommending a course of action to be taken.
We have agreed to consider the options after the results of the next MRI scan, due around June 27. The Burzynski clinic remain positive and hopeful as in their opinion the tumour has stabilised, lets hope the next MRI confirms this and we can get on with the fight.
With Our Love,
The Lilleys
xxxx
May 17th 2005
May 2005, Mad May!! Gus is going great on the Burzynski Protocol, he has broken through a number of personal goals in relation to the both the treatment (highest level smashed and still rising) and his development.
Gus is walking well with the aid of Mama's or Papa's hand, he has also a healthy obsession with footballs and now posesses four balls of which one is always by his side. Gus's vocabulary has increased ten fold with too many words to list!!!
Gus weighs in at a storming 11.2 kg!
Scan news.......... latest scan results show first opinion as 'STABLE NO INCREASE' - we await the second opinion of GOSCH with baited breath.
Other news~~ our new arrival is expected within the next 10 days, mummy is hoping for sooner rather than later! It is a Boy.
Our best wishes and love to everyone especially the 'TEAM'.
The Lilleys
xxxx
March 3rd 2005
February what a month! We have gone through some big high points this month.... only to experience an increased number of lows.
Feb 14th Valentines day~~ Gus had an MRI scan this day and the initial feedback (lasted 5 days) was that in our doctors opinion there was a large black area on the scan which was described as necrosis (tumour dying) we were smiling all day every day....... then our doctor having flown over to the UK to present Gus's case files to GOSCH decided to reverse her previous diagnosis.
We now have some differences of opinion between necrosis or a cyst/active component within the tumour, we are awaiting the opinion of GOSCH.
We have moved back to the UK, having to leave all of our animals in the care of a friendly neighbour, Gus's sister is missing them terribly. The move back to the UK is for Gus's benefit, the continuation of his treatment along with the support of GOSCH and friends and family gives us extra comfort in what is proving to be our most difficult time so far.
With our love and thanks,
'The Lilleys'
xxxx
January 24th 2005
A series of adventures led to both an eventful xmas and an occupied new year.
Gus himself has been by and large a pleasure, for someone so small and innocent he has certainly had his fair share of the ‘ downs’ in life already.
A quick summary of events pre xmas and after~~ Gus continued to gain weight and reached 9.2kg at one point, then…..
For the third time running an inexperienced home nurse burst Gus’s catheter resulting in the last repair possible on xmas eve, Tanya now takes charge of Gus’s blood tests and draws his blood twice a week herself!
Gus had an appointment for an operation to replace the catheter on 28 January 05~~ we will not make this appointment as last week Gus was admitted to hospital in order to have surgery on his head to relieve the enormous pressure of fluid build up (commonly known as water on the brain).
Gus had two shunts put in and a new catheter fitted at the same time~~ he now has five new holes/scars with stitching, ‘ what a bruiser’. Gus is recovering well in intensive care and we hope to have him home soon.
Home will be back in the UK on and around the 17/18th February whereby Gus will hopefully be supported between NPH and GOSCH. The reception for Gus in the UK two weeks ago was fantastic and very supportive.
Given the trial treatment Gus is on at present, it is refreshing to not have to battle with the authorities as we have just about enough energy to fight the battle for Gus alone.
Our love and thanks goes to all those who have supported us with both kind words and action.
The Lilleys
xxxx
December 2nd 2004
We have been home for four weeks now and finally have some form of routine for the Burzynski DIY treatment protocol!! For all those people in support roles of those currently on the same treatment at home I am sure you know what we mean!
Gus had a blood transfusion to maintain the hemo's, as they had dropped quite low and has also been off of treatment for the last week due to weight loss.
Gus's latest MRI shows an increase in the tumour size, however, we have some doubts over the new measurements as the method has been changed utilising a volumetric conversion of which has never been done before.
Gus's Dr has doubts/concerns over the effectiveness of the treatment and would prefer Gus to be on a more conventional therapy. This is probably most reflected in the dressing up of information.
Gus has only received 26 days from 42 of treatment at a dose lower than the recommended, the protocol indicates 3-6 months of treatment before a unified decision can be made.
We are determined to give Gus this opportunity, against other wishes.
November 7th 2004
The treatment, The clinic, The cure, The USA.
9/10/04- Our bags are packed and we are off to Houston,Texas. We are going to the Burzynski clinic for a treatment programme that could potentially offer Gus a cure for the tumour, without the toxicity and side effects of long term chemotherapy.
The programme at the clinic involves three weeks of intensive treatment and instruction for continuation in your home environment.
Gus initially appeared to be tolerating the treatment very well (despite increased weight loss) until the sixth day whereby Gus 'Bottomed out' and had to be taken off of treatment for four days in order to recover. At this low point in time we questioned our decision to trial the treatment.
Gus recovered well and resumed treatment on a protocol of our own with the onus on taking things slowly giving Gus two or three days on the same dosage before increasing.
We are advised by the clinic's doctors that signs of reaction in the tumour from the treatment should if positive be visable through an MRI scan within 3 to 6 months. We are needless to say counting the days.
Our stay in Houston was made comfortable by both the facilities of the 'RINN' and its fantastically caring staff to whom again we give our warmest regards.
We have met many new people on this trip and some we now count as friends, each with their own personal battles to win. There is one such friend, a young lady, in fact a princess who has touched our hearts and who is always in our thoughts~~ 'We will not lose'.
September 20th 2004
We have found that Gus's chemotherapy has failed and the recommendation is to switch treatment to another chemotherapy protocol. This is the natural path to take, but we have some mixed emotions over this.
We have decided to take Gus to Houston USA for treatment which does not have FDA approval as of yet. The treatment holds promise for Gus and whilst some of the medical fraternity frown upon this, the mear fact that we have spoken to survivors who were told prior to this treatment they were a lost cause, only spurs us on further.
The treatment is less toxic than chemotherapy and this alone is a good enough reason to try, as we know the potential harm to Gus on long term chemotherapy is quite high.
Gus is crawling and standing up on his own now, its a sight to marvel at, seeing this and his happy smiley personality makes us pray even harder, he deserves a lucky break and every opportunity.
Love from us all
xxx
September 10th 2004
The past two weeks have been very testing for us as family, Gus's latest scan showed no movement implying stability. We have since learnt that in Gus's doctors opinion (since she was absent from the scan due to holidays) there is a slight increase.
Gus's doctor would like to change the treatment to the French protocol which has an approximate 50% success rate. We are of the belief that the negative side effects of Chemotherapy treatment long term, far outweigh the rewards. In other words we are following a programme of maintenance (with nasties attached) which only delays the inevitable path of radiation/surgery.
We have found an alternative treatment which is based in the USA, which does not have FDA approval. Dr Burzynski offers a treatment protocol with less harmful side effects, its expensive, its without approval, but having spoken to other Buryznski patients it would always leave us with the 'What if / if only' cliff hanger.
This we would be unable to live with...... Whilst we have some time on our side and with the limited options available, the decision is easy. We sincerely hope that Gus's team still backs us and as already proven would work in conjunction with others for the common goal of helping Gussie without politics and bureaucracy coming into it.
All of our love,
The Lilley's
xxx
August 24th 2004
Gus's last two trips for regular maintenance (blood test, plaster change & weight) went very well without any causes for concern. The little fellow has gained weight and now weighs in at 7.3kg, largely due to Gus's reduced sickness.
We have another MRI scan set for August 30, we are hoping to see decreased activity in the tumour and with luck some further signs of a positive reaction to the chemotherapy. Again we are crossing everything.
Love The Lilley's
August 11th 2004
The week started very well with everyone happily enjoying some lazy days in the sun at the beach, then... The stomach button saga continues, Gus's button came out at 4am Friday morning leaving a hole, which had to be temporarily patched with a plaster.
Tanya made a dash to the hospital were we learnt from a senior Doctor that this button (Freka) is by no means a patch on the previous service issued button (mic-key). This information was given to Professor Le Gall (head of the service) who happened across the scene on Friday morning.
The reason for changing a perfectly reliable piece of apparatus? Cost, Cost, Cost!! On learning this we contacted our medical company and ordered the Mic-key button ourselves as back up to the latest below standard Freka. Oh and by the way the difference in cost of the two buttons wouldn't buy you a decent cup of coffee! I hope the service takes note.
Frustrations over, Gus' coped very well with treatment today and amazingly put on some weight, he now weighs 7.25kg. We are told Gus will have another MIR scan this month in order to keep a regular check on the tumour progress.
With our Love,
The Lilleys
xxxx
August 5th 2004
Well the day has been and gone.... we have mixed emotions about Gus's MRI results. The centre of the tumour is showing signs of reaction to the treatment(black spots) however, the circumference has increased.
Gus's doctor is of the opinion that we should continue with the treatment and hopes to see more positive results around week 30 ( 6 months into treatment).
We are on tender hooks, if the circumference of the tumour continues to grow at a rate greater than the reaction, then the pressure and space occupied by the tumour will inevitably lead to further complications for Gus.
We have however received some very positive news of a similar reaction in a child with the same condition as Gus, and thankfully that little fellow is doing really well now. XXX
We are hoping to put Gus's MRI scans on the site for referral purposes and we welcome all thoughts and opinions, so please, please encourage anyone that may know something on this subject to come forward.
With all of our Love,
'The Lilleys'
July 30th 2004
We have had a few problems this week, equipment related. Gus had a new button fitted in his stomach which is a much improved version of the original~~ when it works.....
Through the week we tried different combinations of equipment (tubes/nozzles) in order to feed Gus as opposed to the bedding. Gus's stomach button turned out to be faulty.
We spent all of Sunday in the hospital in order to feed Gus and have a replacement button replaced on Monday morning. Accident and Emergency at the hospital were unable to replace the button on Sunday, however the Doctor on replacing the button showed us the procedure as he thought it would be a good idea for us to know for future reference.
We now understand the procedure and are competent, but we asked the question if we are able to do this at home, why was the A & E dept incapable?? We were frustrated at having to keep Gus in hospital for 36hrs when he could have been home in his own bed and environment.
Frustrations over, Gus is fairing well despite a weight loss caused by this saga. We anxiously await for this Monday 2/8 and the subsequent MRI scan results.
With our Love 'The Lilley's'
July 20th 2004
Gus had a small operation today to change his button on his stomach to a much improved version. Gus would not go to sleep on the sedative alone to which unervingly gas was used. The medical team were constantly commenting on Gus's strength in fighting the sedative ~~that's our boy!!
Gus had lost weight this week, as we expected following the chemotherapy and related sickness. We also hope the operation has no adverse side effects aside of the discomfort that was apparent on Tuesday evening and Wednesday daytime.
We nervously await Gus's MRI scan due for Monday 2nd August at 9.00am, if you can cross everything around this time it would be appreciated...
Our love to everyone,
xxxxThe lilleysxxxx
July 16th 2004
Gus went in for his double dose this week, we were/are very anxious as there is a possibility of an adverse reaction to the treatment. Gus was great through the day, but suffered during the course of the evening with sickness and fever.
The next day Gus was still very feverish causing us some alarm, but remarkably he picked up during the evening and was back to his smiley laughing self by thursday morning. He even got a piggy back ride by tom(the sheep) which brought about a infectious giggling/screaming fit!!
Gus's medical team are happy with his progress, especially with another great 'WEIGHT GAIN' 140g!!!!
Love 'The Lilleys'
July 9th 2004
Gus has excelled himself this week, he pushed through the 7kg magical barrier!! We are all very pleased especially Mama (just rewards!). Gus is now creating a new but nice problem for us~~ CRAWLING EVERYWHERE!!
We have a lot of real information relative to Gus's condition with some very interesting/promising contacts. We give our deepest heartfelt thanks to a small but dogged band of friends.
Gus and Amelia have some new arrivals to our garden, Tom & Kurdy (the sheep), Daisy & ? (the ducks), ?&?&? (the chickens), in our first two days Amelia and Gus have collected five eggs. Tanya is baking!
June 29th 2004
Gus starred at two hospitals today, armed with enough homemade chocolate brownies to feed the five thousand!!
Having completed his normal(!) checks, small weight gain(:¬) we tottered off to the hospital Ponchaillou for Gus's latest eye examination.
All appears well on this front, to the point whereby Gus has a prescription for Sunglasses, well as they say 'when in France'.
Our quest on feeding regimes and products continues with renewed energy, thanks to the support of some very good friends.
Love to everyone
June 24th 2004
Gus returned to hospital today having faired average from his chemotherapy last week (double dose). He has remained weight constant since his gain two weeks ago, which in itself whilst positive still gives us cause for concern.
Gus's dietician has upped his intake solely based upon calories, we are unsure of his regime as it appears a lot of guesswork is going on.
Currently we are advised to give Gus 800ml per day of a high sugarmilk formula with added sugar in the form of Dextrine Maltose, this on top of his lunch (180g) with dextrine maltose again added.
Gus has not tolerated this increase very well and is sick two or three times per day, to offer an analogy its likened to having a cup of tea with one sugar, to now having the same cup with five sugars. How many cups could you hold down? How long does it take before your body accepts or totally rejects?
Gus had his first birthday last week and was thoroughly spoilt, his smile was ear to ear and his laughter is infectious
God bless you 'Goo Goo' xxpapaxx
June 8th 2004
Gus travelled light today (its so hot here right now), we were in and out of hospital within 40 minutes and the little fellow has made another gain in weight... We are confident that he will be wearing shorts for summer!!
Gus's doctor is travelling to Boston on the 11th June for a star studded international conference on childrens brain tumours - we hope this conference will benefit both Gus and the other children in his doctors charge so Bon voyage Dr Edan.
Love the Lilleys
May 25th 2004
Tuesday 25th and Gus received his last weekly double dose of chemotherapy, hurrah.
Gus will now return every three weeks for the next three months for his treatment which hopefully will allow us to concentrate on building his immune system and weight up.
On the weight front Gussie put on just under half a pound this week, hence this week we are all on a high!
Gus still returns to the hospital each week for blood and weight tests....
Thank you all for your support and kind words, it really is important to us.
Love 'The Lilleys'
xxx
May 19th 2004
Gus has been sick quite a lot this week, we feel the chemotherapy has really taken effect.
Tanya arrived at the hospital expecting a weight loss due to the sickness, only to be very surprised to find Gus had gained 6oz! We are still in shock!!
Way to go Gus, we know you're doing your bit...
Love from us all
May 15th 2004
Week 8 for Gus's treatment went very well, whilst there was no recognised weight gain for Gus, he is stable and well. We are looking forward to the three week gaps in treatment after week 10, as this will give us more time to build Gus up, he currently loses one/two feeding days directly after chemotherapy through sickness.
We have been very lucky in locating a wonderful homeopathic doctor who has given us some very good medicines to aid Gus through his treatment. We started on this course last week and have seen some early signs of improvement.
We are looking into feeding regimes around the world with a view to ensure the best regime for Gus is his current one. Gus's regime at present amounts to a high calorific formula milk with a product called 'Dextrine Maltose'(basically sugar!!) which is added in large quantities.
Our love to you all
The Lilleys
May 9th 2004
Gus had his double dose this week, we never normally look forward to treatment day but on this occasion having found a mark on his leg caused by the elastic on his sock we were excited about weight gain prospects.
Gus with his clever mummy's idea of syringing little and often (an idea initially frowned upon by med team) has gained half a pound in three days of trial... every one on the team is extremely happy and accept that sometimes 'Mummy really does know best'.
We have Gus's medical records and scans and hopefully within a short time we can put these up on the site for all existing and new medical interest. With everyones help and support so far we know the answer will be found.
April 30th 2004
Following Gus's treatment on the 27th and subsequent weigh in of which there was a cause for concern (no weight gain, small loss) a new increased volume feeding regime was presented to us.
On applying the new regime Gus has been sick during the night, we returned to hospital today 30th, to find another small weight loss had occurred.
The team have agreed that the increased volume may have been too bigger a step for Gus's stomach, we have returned to original volume with the added extra of a high calorific powder supplement.
We are keeping everything crossed as the line between stable and unstable with weight is a fine one.
We hope to be able to post Gus's scans and prognosis on the site with the wish that this information gets to the best medical brains in the world and some viable options (backups!) come.
This week we feel very low but are determined to remain positive...
Love from us all
April 20th 2004
Gus's operation on Friday 16/4 for his stomach tube ( the sight of so many wires/tubes attached to him has not aided restful sleep on our part!) has proved to be a resounding success. After tests Gus was fed through said tube for the first time on the evening of Sunday 19/4, remarkably Gus's weight has improved post op, he is as implied recently 'a strong un'.
Following chemotherapy today again tolerated very well, we almost escaped back home however, the now nicknamed 'Meals on Wheels' machine for home use never materialised due to a logistics problem.
Tanya and Gus will be home tomorrow as guaranteed by our feisty med team....
April 13th 2004
Gus had his fourth session of chemo today - it was a double dose but he seems to be coping with it very well. Unfortunately he hadn't managed to put on any weight this week despite eating well during the week but he continues to smile and keep the family positive.
The plans to put in his stomach tube for feeding are going ahead - this is to build him up and ensure his nutrition levels are good. He will go into theatre on Friday morning for the operation. Although fairly straightforward he will have to be in intensive care for a couple of days due to the high risk of infection.
His hormone tests came back as normal which hopefully means the tumour hasn't damaged that part of the brain.
The research side continues with full force, a huge amount of support means we are progressing well with finding out about alternative treatments should his current chemo not prove effective enough.
A team of doctors from France will be attending a large conference on Brain Tumours in Boston in June, where all the top specialists from around the world will be discussing the latest treatments and research. It's a great comfort to know that Gus' hospital will be represented there by Dr Christine Edan, so a big thanks to the team for everything so far, with special thanks to ABNYC!
A no doubt more eloquent update will be posted in a couple of days from Ed (AKA papa) with news on how Gus' op goes....
Auntie B x
(PS. the Easter Egg hunt was a big success although I think Gus' big sister enjoyed most of the findings !)
April 6th 2004
Gus had third round of chemotherapy on 6/4/04, he is tolerating the treatment reasonably well at present, we caused a slight panic with the nurses as on 'weighing in' Gus had increased his body weight by 1lb within a week! The nurses were amiss until we explained that this was the first week of Gus's high calorific diet, we are all celebrating his achievement by planning a huge easter egg hunt in the garden on Sunday...
March 23rd 2004
The ball is rolling in respect of treatment...
1.30pm 23/03/04 Gus administered 1st treatment of chemotherapy, combination of Vinscrintin & Carboplysatin. Treatment programme 1 day per week for 10 weeks, then 1 day every 3 weeks until 24th week. MRI scan to monitot effectiveness will be advanced from week 24 as protocol to weeks 14 to 18 tba.
4pm. Gus serenaded by guitar playing nurses lucky boy!! (real emotional reminder for us just how poorly he is not that you would know it with him!)
Remainder of day spent playing, feeding and trying to get him to sleep! He has a good team of people around him, with support from all angles we have told him he just needs to do his bit of the fight and all will be well.
March 22nd 2004
Gus and Tanya will return to hospital to begin Gus' Chemotherapy treatment.
March 18th 2004
Gus and Tanya go to hospital to undergo Growth Hormone tests on Gus - this will show how much damage has been done by the tumour.
March 15th 2004
Gus and Tanya returned to hospital to prepare Gus for Chemotherapy treatment. He had a tube put into his chest to allow the chemicals to be administered.
March 11th 2004
Gus and Tanya went home for a few valuable days with the rest of the family.
March 8th 2004
Gus and Tanya were transferred to hospital in Rennes.
March 8th 2004
Gus underwent an MRI and a CAT scan and was confirmed as having a large Juvenile Polycytic Astrocytoma (brain tumour).
March 5th 2004
Gus was diagnosed with Russell's Syndrome.
