Updated: Monday 19th March, 2012
Tess is fine and living at Strathmashie. She is now 18 and has a boy friend called Jay. She is currently a part time Avon rep. Tess has recently enjoyed studying digital photography and child care with the Open University while also being increasingly involved at Spartan Press.
What follows is Tess's famous 'blog', which was started during the dark days of 2000 to keep everyone informed when Tess was undergoing all manner of emergency surgical operations...
Wednesday, April 6th, 2011...
Tess arrived back at Strathmashie on Tuesday 5th April. She was suffering from headaches and had been fainting, and had been undergoing tests in Raigmore, Inverness since Thursday 24th March. She was meant to be assigned a new Neurologist (Dr. Jones) but she had broken her leg! Up till now, Tess (NEARLY 18 years old), has been under the care of a Neurologist at the Royal Hospital for Sick Children in Edinburgh, but not any longer!
The results of the CT scan on Friday 25th March showed that her shunts were not blocked and that there is no abnormal pressure in the brain as a result. This is extremely good news (been there before!), but they still ain't got to the bottom of the headaches yet. There where more blood tests, full MRI and lumber puncture stuff... so it goes on... A referral to Edinburgh Neurology Department looks the likely next step.
On Tuesday night (30th March): following further intrusive and painful tests (EEG, Lumbar Puntures, etc) the hospital team thought they had found out what was causing the trouble: an infection of the stem of the brain... so she was put on an anti-biotic drip... but then taken off...(?)
Thanks for your kind concern and support.
Tess and Dad travelled down the country as part of her 17th birthday celebrations in July, to a remote airstrip in Cambridgeshire to meet up with various members of the Neurofibromatosis Association. Two of these brave NF1 sufferers sky dived in a bid to raise money for the Association. The event was very exciting, even emotional, and Tess is keen to jump next year on her 18th birthday! See Tess's facebook page for lots of photos.
In June, Tess purchased a magnificent red tricycle to give herself a bit of independence. The machine came with 6 gears and a massive basket for shopping. Trips have been frequent down to the Wolftrax Mountain biking centre, to visit friends at Strathmashie Cottages, and occasionally down to Laggan village.
In May, Tess ran in the FUN RUN (part of the Laggan 10k Road Race) and raised over £300 for The Neurofibromatosis Association. Sponsors visited her page at http://www.justgiving.com/Tess-Goddard.
Last year, at the age of 16, Tess had an opportunity to leave home in the summer, albeit 100 yards across the courtyard to share the Keeper's Cottage with Annette Reavley, Fuller Music's manager.
Having left school, Tess has been working locally in both child care and in the seasonal tourist business in Laggan last summer, and as a much sought after baby sitter. She has taken up a place at the 'University of the Highlands' in Inverness, studying from home on a distance learning course geared towards child care. Tess has also been recruited to house sit. In March and April 2010, the rest of the family went on a months holiday to visit old friends in New Zealand: Tess could not be persuaded to go, preferring to house/dog/cat sit Strathmashie, which she did with distinction!
Friday, 28th February 2009.
Tess's recent operation at the Edinburgh Sick Kids, 23rd January 2009 was a success. This was a 2 hour cosmetic (Hollywood style) 'face lift' to reduce the uneven shape on the right side of her face. She was back home within two days and is now back to normal.
This is Tess's last year in school (unbelievably!).. and she has been accepted to study on a 'distance learning' course through Inverness College as part of working towards a specific job she has in mind involving working with young children. For this to succeed, she has to have had at least three "work experiences" in the field, the opportunities for which appeared like magic: three primary schools in Badenoch heard of her plans, and offered work experience within their pre-school departments. This process is now in full swing, and Tess has really enjoyed the 'jobs'.
March 2008: Home Schooling - We decided that to try to get Tess through her exams next year, given her increasingly tired and anguished countenance, her best chance may be to step back from the on-going strain of getting back and forth to School, and study more efficiently at home. Up until Christmas, Tess was happily attending Kingussie High School during mornings only, but then retiring, shattered each lunchtime. Despite the School's energetic and caring efforts, Tess was still gently slipping behind simply because of the 50% attendance rate. So we cane up with the idea of working at home, made possible thanks to home visiting teacher Max Brown, supplemented by occasional 'practical' lessons by arrangement at School (home economics for example), and the redoutable "Mrs Goddard" at home for intensive music lessons(!), progress is now being made. Just as importantly, Tess's whole aura is now more calm and happier as well as better focused on each of the school curriculums. And now, outside activities like Guides, Church and Swimming sessions (which become important 'contrasts' during the week), are thoroughly enjoyed by Tess with much more energy than before. And of course theres Pat's family excersize routine, keeping us all fit....
Pat's Family Exercise Regime, 2008: Land's End to John 'o Groats, daily, and cumulatively... The whole family kepting records during 2008 of the number of kilometres walked each day. Conversion rates are applied to other physical activities like swimming, ballet and log-splitting for example, and all this data is recorded onto a splendid wall chart with totals and sub-totals. Pins are held in an old road map of the UK showing our respective daily locations. We started on January 1st, and eventually made John 'o Groats. Treats and incentives were awarded at weekends for reaching saliant settlements en-route. We ended the year by booking into a motel on John 'o groats for two nights (in reality) and enjoyed walking on Duncansby Head Cliffs (far top right hand corner of the mainland). The weather was very sub zero, so the visibility was fantastic! So... for 2009, we are all mapped out to virtually walk from Dover to Cape Wrath, this time, with the aid of some new intranet software to help us all keep tabs electronically, and show us our pins on a map on screen.
Operation successful - Tess is out of hospital today (15th December, 2007). Everyone seems amazed at the speed of her recovery.
New operation booked for Tess at the Royal Hospital for Sick Children in Edinburgh: Wednesday 12th December 2007. This operation, which she has been waiting for since April 2007, will replace a broken titanium plate that was part of the November 2005 work done in Great Ormond Street, holding the spine straight at the back of the neck (C3 area). The Edinburgh Surgeon will be Mr Statham, who knows Tess well and was instrumental in the early years at the Sick Kids. Pat (mum) and Tess will leave Strathmashie for Edinburgh on Tuesday 11th. They reckon Tess could be out of hospital within a few days - this operation is not a 'biggy' (comparatively)!
MRI scans 9th October 2007, overnight brain pressure tests and blood tests at Edinburgh Sick Kids. News was good - in fact, they saw no trace of the tumor that caused such problems back in 2000. There is no undue pressure in the head.
Tess has been recovering well since the big operation in 2005 (see below). Now in 'S2' at Kingussie High School, there have been terrific efforts from her and the staff at the school, to catch up with all the work missed. Tess has had the benefit of extra tuition at home too, thanks to Max Brown!
Things were getting back to normal when suddenly in April this year, Tess was again in agony. Unfortunately one of the metal plates fitted into the back of her neck had simply broke. Following various rounds of xrays, discussions and some thinking, it has been decided that a new operation to re-graft on some bone across a replaced titanium plate is the way to go. Tess, as usual, is bravely facing upto the next stage and is keen to get this sorted so that she can maintain the long term progress made so far. We will post any further details, (op due to take place in the Sick Kids in Edinburgh), as soon as we know ourselves.
Tess was awarded the Chrissie MacPherson Prize for Personal Development at Kingussie High School in June 2006. The prizes at the ceremony where presented by Karen Darke, the intrepid explorer who lost the use of her legs in a rock climbing accident. Karen gave a fully positive and uplifting presentation to a full house of pupils, staff and parents in the School hall.
Tess Goddard, who suffers from a condition called Neurofibromatosis Type 1 - (NF1) had two major spine operations in 2005 (21st and 28th November) at Great Ormond Street Hospital, London.
Download a video clip of Tess out and about with the infamous halo, 20th November 2005 (the day before Op.1) taken by Tess's auntie Kay from Eastbourne. (3,291KB).
Download a video clip of Tess talking to Dad 26th November 2005 (weekend before Op.2) about the various terms of endearment used by Tess's nurses. (2,157KB).
Download a video clip of George pushing Tess in a RHSC wheel chair through the Meadows on their way back from Jimmy Chang's Chinese Buffet. Sunday afternoon, December 18th 2005. (1,505KB).
I (Pat) returned to Strathmashie (Dec 5th) leaving Mark at the bed-side for a week. Tess and I have been so touched by all the hundreds of e-mails, cards and gifts, including two stories written for Tess and a specially recorded performance of 'Pictures at an Exhibition'!!!
Thank you very much to everyone, Tess really looks forward to the arrival of the post and visitors.
Tess no longer has the 'halo' following op. no. 2 and is now eating well (we all had a Chinese take-away by the bed on Saturday!); she is also moving her arms and legs much better now that the physio work has started. It's going to be a long haul, but Tess is cheerful.
I (Mark) have just returned to Strathmashie (Dec 12th) leaving Pat at the bed-side in London. Tess and I have had a very busy week down in Parrot ward. We had to relocate rooms twice - not easy with over 100 cards on the walls!!!. This was all good news though - gently moving away from the 'intensive care' and 'high dependency' units is solid evidence of progress. The noise level is quieter down the far end of the corridor - much better for rest! The various pipes and wires have now gone (hooray) and Tess is fully involved in 'Re-Hab': being encouraged to wear ordinary clothes as much as possible, and to get up and about.
There were the usual regular visits this week from consultants, doctors and nurses, the teachers (I witnessed a maths lesson) the pain team (successfully reducing the drug infusions each day) and from the physio team (getting Tess to move her arms, sitting-up on the side of the bed, and re-learning to stand up using a tilting table thingy). There were also surprise visits from friends and well-wishers, chaplains, AND by no means least... two separate visits from musicians from the L.S.O. playing clarinet and viola respectively. During these marvellous sessions Tess also got the chance to play some improvised heavy metal on an electric guitar (with a bit of support with each hand).
The effect on a parent of all this is humbling - to witness all this professional care and attention.
Bit of bad news this week though: it looks like Tess may not now be home for Christmas as the physio team reckon on weeks of hospital based physio work. The latest MRI revealed that the spine is very bruised, although every day there is more progress to report. On Sunday (11th December) Tess was winched into a wheel chair and allowed out of the Hospital for the first time for three weeks - a great moment!
On Friday 16th December, Tess and Pat were flown from London to Edinburgh (nearer home) for the next stage of 're-hab'. The surgeon is not sure he has actually finished removing all the offending bone - another (but smaller) op. may be on the cards early next year to 'finish the job' back at Great Ormond Street - but Tess needs to recover a bit more first.
On Sunday 18th December Tess is wheel-chaired out across the 'Meadows' for a slap up nosh at Jimmy Chang's wonderful Chinese Buffet Restaurant (next to the Usher Hall). She now feeds herself and is walking from bed to wheel chair and back (with the aid of a zimmer frame). There is talk of trying to arrange a trip home for Christmas - lots of physio planned for this week...
On Friday 23rd December Tess is allowed home to Strathmashie for Christmas weekend, complete with wheelchair, zimmer frame, commode and a carrier bag full of medical supplies. This is her first return home for 5-6 weeks and is a wonderful change for her.
Tuesday 27th December we all return to Edinburgh Sick Kids (as agreed with the Docs) - but not without a full ceremonial family visit (it being George's 10th birthday) to the Odeon en-route to Edinburgh to see the new Chronicles of Narnia.
Thursday 29th December Tess makes the journey back to Strathmashie for the new year weekend, taking in the panto in Perth Theatre: Sleeping Beauty. The show was first class.
Wednesday 18th January Tess is back at Strathmashie, working hard with visiting physios, catching up on school work and enjoying dogs/cats/hamsters and a bit of homely comfort. Occasional sporadic hostilities break out with brother George - we see this as an encouraging hint of normality!
Thursday 2nd February An MRI scan down in Great Ormond Street proved to Surgeons Thompson and Casey that the third operation is not required - certainly not yet anyway, given that Tess has made such good progress since the dark days of November and early December. Tess is now walking steadily and using the right hand increasingly for writing etc... Their view is "lets see how well Tess can get WITHOUT recourse to further risky surgery".
So at 7.15am on Monday 6th February (the date of the 'threatened' operation in London), Tess (and Pat) arrived back in the Highlands on the Caledonian Sleeper (the wonderful night train from Euston) nicely in time for a re-united family celebration slap-up greasy breakfast at the best transport Cafe in Scotland: The Chef's Grill, Newtonmore.
Tuesday 14th February, Tess returned to Kingussie High School again after the half term break. She is using the wheel chair as she gets very tired, and the School have been extremely accommodating. A new lift has recently been installed which makes this all possible. There is progress (and lots of physio) each week.
Saturday 20th May, Tess is awarded the 'Star of Merit' medal for courage and fortitude at an emotional ceremony near Inverness. The medal, never before awarded to a Girl Guide in the Highlands, was presented by the Commissioner of the Girl Guiding movement for the Highlands during their bi-annual Guide leaders conference at Culloden Academy on Saturday May 20th.
Thursday 25th May, Tess is interviewed by BBC Radio Scotland about the Guides award. The interview is broadcast the following lunchtime.
Saturday 27th May, Tess completes the 1 mile fun run in Pat's 'Laggan 10k and Fun Run' in aid of the local primary school. She also has a stall at the race and raised several hundred pounds (combined with sponsorship) for Great Ormond Street Hospital.
Monday 29th May, Tess starts 'S2' (her second year at Kingussie High School). Its a wonder (and great relief) that the first year did not have to be repeated, but Tess has been working hard to catch up, and the entire experience of staff and pupils has been fully supportive.
Surgeons Thompson and Casey reckon that if all goes well, between now and the summer Tess will progressively feel a different person. The support that Tess has received has been tremendous. Thank you everyone for your emails, cards, phone calls, presents and visits to GOSH.
In April last year Tess's consultant paediatric Neurologist at the Royal Hospital for Sick Children in Edinburgh along with specialists at the Raigmore Hospital in the Highlands came up with the following diagnostic details, prior to Tess starting High School next year in Kingussie.
- Neurofibromatosis Type 1 - Plexiform neurofibroma
- Optic nerve gliomas
- Shunted hydrocephalus
- Severe cervical kyphosis/subluxation of the atlanto-axial.
- Congenital malformation cervical spine
- Prone to headaches
- Previous pilocytic hypothalmic astrocytoma/previous ventriculitis
- Myopic astigmatism
On 2nd August 2004, Tess returned to the Royal Hospital for Sick Children in Edinburgh for a scheduled operation to have a 35mm lump on her shoulder removed. Tess boasts: "Operation number nine, scar: 18!". The offending lump, caused by NF1, was not sinister but was giving Tess some agro - being on the "school bag" side. The operation went well and Tess is already back at school, attending dancing lessons in Pitlochry every Monday and Brownies in Newtonmore every Thursday!
Back in April 2002 things were very different: the last time Tess at the RHSC in Edinburgh, she was rushed in as an emergency suffering a severe infection of the cerebral fluid in the "ventricles" (cavities) within the brain. A sort of Meningitis. This inflammation produces high pressure in the head and very serious headaches.
During an operation on 23rd of June 2002 the plastic drains (known as "shunts") were removed following another infection. Large amounts of anti-biotics were being administered both through canulars inserted into her arms and straight into her head through "access devices". On 5th July, a further three hour operation saw two new shunts and access devices in both temples fitted successfully.
Back further... in December of 2001, the whole family were treated to a visit to Euro Disney in Paris, via a light plane from Inverness to the heart of London where we visited all the sights. Then on by EuroStar to Paris. The trip was "Tess's Wish", organised by the Roundtable Children's Wish Charity.
The Story actually begins in 2000
Having survived a brain tumour nightmare in 2000, Tess bravely underwent traction during March 2001 (provided by a "halo" contraption screwed into her scull prior to an operation to sort out a dodgy 3rd Vertebra in her neck).
During this uncomfortable time, flat on her back, she raised £17.30 from passing doctors for the comic relief campaign. Following this, Tess had to wear even more hardware including full Spartan cuirass (see picture) which continued to stretch the spine in readiness for an operation planned for May 2001. On the night of Wednesday, 18th April 2001 - Tess was in agony and early next morning the local doctor was consulted on the telephone. Dr Fraser came straight round to the house, equipped with pethidine in a hypodermic and a white Range Rover which he parked in the middle of the lawn(??)...! Once the drugs were in to pacify a by now frantic little girl, the Inverness paramedic team in their new helicopter arrived on cue and whisked Tess and Dad off to the Royal Hospital for Sick Children in Edinburgh. The Range Rover was there to show the chopper where to land in poor visibility. The journey by car is nearly 3 hours. The helicopter ride (which was spectacular) was a mere 20 minutes! As is usual, two fire engines and the police were waiting in "The Meadows" in front of the hospital, complete with ambulance on the grass.
What was wrong? ... Tess's halo has four screws holding the thing in. The front two screws had (after 5 weeks) worked their way out of the scull and were strafing the scalp with pointed ends. In a treatment room, new sterile screws were found to replace the loose ones and driven home with decisive skill by Dr Lynne Miles from Ward 7. Very shortly, Tess was back to her happy, talkative self, obviously much better for the maintenance! She was kept in one night just to be on the safe side and then allowed home to Strathmashie (120 miles away) via double decker bus and train (unfortunately not helicopter)! Tess has now had what we hope was her final operation to stabilize her spine.