The Tamsin Colley website

2005 UPDATES

13 December 2005

Dear All,

Since the update of 6 October we have been on a longish (3-4 week) holiday and then had another appointment with Dr Charlie Teo - on 29 November.

The holiday was wonderful - to Australia's Northern Territory, which is a mixture of outright desert in the south and tropics in the north. Always warm to hot, and very hot at the time we visited - 35 to 40 degrees Celsius every day. A bit too hot to want to spend much time in the midday sun, but the holidays was attached to the end of a work conference for Dad.

Tamsin and her older sister Shannon did very well and enjoyed themelves immensely. Highlights include the kids seeing Uluru / Ayers Rock, Katherine Gorge and Kakadu National Park. Seeing lots of huge crocodiles in the wild on the dawn cruise at Yellow Water within Kakadu National Park was well worth getting the whole family up a long time before dawn.

Tamsin had some falls but nothing serious. Everyone has to learn to live with a few falls when you have a daughter recovering from a JPA brain tumour. Someone has to be with her all the time when outside, and all non-car travel was by paediatric push chair (a folding stroller-like device built for older/larger kids) or by backpack. When in hotel rooms she was reasonably safe in terms of walking very short distances by herself.

Back in Sydney in late November involved a rapid round of visits to rehab therapists to get written reports on progress before seeing Charlie Teo. Those reports are in the reports section of the website. All the reports tend to say slow but noticeable progress. There have been some jumps in progress in speech and walking, but they are more the result of Tamsin finally getting to a point where the effort is resulting in a satisfactory outcome so she is doing a lot more of it.

After reading the therapist's reports, and also that of the 2nd neuro-radiologist (see last update) Charlie is more than ever of the view that nothing needs to be done about the fluid collection at the back of Tamsin's head. He was a little open to the idea of more surgical intervention at the last meeting, but the new opinions have changed that.

We agreed that nothing surgical should be done now, and that we should wait for the next MRI scan in June/July 2006. That will allow more time for the fluid collection to show whether it is expanding or stable.

And we have to live with the concern that Tamsin's progress is slower than it would otherwise be if the fluid collection was not there and possibly placing pressure on her brain.

Of course, it could well be that Tamsin's progress is the best we can expect. There are a wide variety of recoveries from JPAs. From what Cathie can determine from her research, Tamsin's recovery is towards the poorer end of the scale, but that may just be our fate. For the moment we must do the best we can.

We are indeed fortunate to have two darling daughters and we are looking forward to Christmas and summer with them. Season's greetings to all.

Love, Peter and Cathie

Uluru, November 2005

Tamsin, Cathie and Shannon in front of Uluru / Ayer's Rock, central Australia, at sunset.

Litchfield National Park, November 2005

Tamsin and mum Cathie in one of the many stunning natural pools at Litchfield National Park near Darwin in the Northern Territory.

Alice Springs, November 2005

Tamsin and dad Peter in the hotel pool at Alice Springs, central Australia.

6 October 2005

Dear All,

Life is confusing, especialy with a disabled child. Since our last post we have received an assessment from our specialist developmental paediatrician, and a second opinion from a neuro-radiologist.
The former assessed Tamsin on the "Brigance 3 year Old Child Preschool Screen" and said her progress was at or above the correct level for her age - except on gross motor skills. The latter specialist gave an opinion on the various MRI scans. He said that he was certain that the cerebo-spinal fluid collection that we have seen on various scans is NOT growing and that the fluid IS circulating rather than being confined and causing pressure on the brain.

Which is quite contrary to other opinions we have had.

Which we suppose only confirms that the assessment of MRI scans remains an imprecise science. The more opinions we get, the more they contradict each other.

On balance we think Tamsin is improving, though only very gradually. Her speech is becoming better defined, and we think more people can understand her. She is using a walking frame more consistently, and in the home environment is taking more steps independently.

On the good news / non-medical side: Tamsin and Shannon had a birthday party at Malabar beach on 10 September whch was attended by many friends. A photo of a post-party session at the beach is in the photos section of this website.

And last weekend we were able to go away to a friend's caravan on the coast south of Sydney and have a great time without too many traumas about falling over or medical assistance. So life is definitely getting a little easier and enjoyable.

love, Peter and Cathie

Tamsin at Malabar beach, 10 September 2005

On 10 September Tamsin celebrated her 3rd birthday. After the party in the adjacent park, there was a further get-together at the beach itself. Tamsin (centre) is pictured with her sister Shannon (right) and friend Alex Brown (left) and Nikesh Dhanji (background).

7 September 2005

Dear All,

We wanted to update you on our dilemmas about further surgery for Tamsin.
She has a fluid collection/cyst at the back of her cerebellum which is gradually growing and exerting some pressure on her cerebellum. All the specialists agree that there is a fluid collection/cyst. Not all are certain it is exerting pressure and therefore might be slowing progress.

Her progress has been slow but continuous- but she can only walk a few metres unaided and has severe articulation problems which mean most people can’t understand her speech. Her hand shakiness seems slightly worse to us. She can eat a tub of yoghurt but is working so hard to do this and she can’t drink water from an open cup. We do heaps of therapy/practice and she works so hard and the therapists agree that she is improving on the things she has worked on but doesn’t seem to have much reduction in the level of ataxia (wobbliness). She doesn't seem to be having spontaneous improvement; she seems more to be adapting to her disability.

We now wonder if all the therapy she has is actually masking her lack of natural recovery. (There are copies of recent reports from the occupational therapist, physiotherapist and speech therapist in the Reports section of this website.)

Our neurosurgeon (Charlie Teo) was initially not at all concerned by the fluid (he thought it was just taking up space left behind by the removal of the large tumor) but we got a second opinion from the head of neurosurgery at a major teaching hospital who felt that the fluid should be investigated with a reservoir placement and contrast injection and MRI scan and then fenestration to communicate it with the ventricle or shunt insertion if this didn’t work. He said it would not be a miracle cure but should speed up her rate of progress.

Plain English translation of terminology above - reservoir placement involves drilling a hole though the skull and then connecting that passageway with a small sack that is placed under the skin on the outside of the skull. The sack becomes filled with cerebrospinal fluid which can be sampled/dyed etc without further surgery. It is an exploratory / testing procedure. Fenestration to establish communication with the ventricle will be corrective surgery that seeks to tunnel from the cyst to the ventricles which do the normal task of circulating/draining brain fluid. This will drain the cyst. A shunt is the alternative method - a tube from the cyst that is run all the way down to the torso to drain the fuild to there. Something to be avoided if at all possible as it is an artificial device that can develop problems over time.

On Tuesday 30 August we went back to Dr Teo - who now agrees there may be a problem but feels the risks of surgery outweigh the possible benefits. He will review Tamsin again in three months after our OT has repeated the Peabody (standard test) which Tamsin had 3 months ago to see if her hand function has really deteriorated. He doesn’t like the idea of the contrast injection due to infection risks and would go straight to an endoscopic fenestration if he was to do anything. We suspect that in three months time Dr Teo will be keener to do the surgery.

We quite like this plan as we don’t want to push Dr Teo into surgery if he is not convinced of the benefits but we are keen to give Tamsin a chance at improving more quickly and catching up a little bit with her peers. Of course, all surgery carries risks, and especially neurosurgery. We would have to live with the consequences of our actions if anything went wrong.

On the positive side, Tamsin’s most recent MRI showed that there was no residual tumor- so we try to stop worrying about Tasmin’s disabilities so often and remember that we are really in a great position and have been very fortunate.

love, Peter and Cathie

22 July 2005

Dear friends and family,

Tamsin and Cathie met with Dr Charles Teo, the principal neurosurgeon, on 19 July to discuss the MRI scan that occurred last Monday.

Dr Teo said that he and fellow neurosurgeons were happy with the scans and they were agreed that further intervention was not warranted.

The next MRI scan is set down for a year from now.

There remains a possibility that something is still wrong inside Tamsin's head - that there is too much fluid at the back of the head and it is not draining properly. But she is improving and, while that continues, it is preferable to avoid surgery. All surgery carries with it significant risks and so is best avoided unless the evidence FOR surgery is compelling.

With regard to Tamsin's improvements, there is a new Physiotherapist's report in the Reports section that confirms the significant progress in recent weeks.

Love, Peter Colley

11 July 2005 - Tamsin is walking!

Dear friends and family,

Two important bits of news.

Firstly, Tamsin has begun to walk! See the video clip in the Reports / video section of the website. Yesterday she seemed to reach a "tipping point" where her coordination level meant she could walk a small distance without major risk of falling over so she was more inclined to do it.

We hope to see a lot more of it in coming months, though her rate of progress will not be like a normal 10-14 month old beginning to walk.

Secondly, Tamsin had another MRI scan today. For a 2 yr old that requires a general anaesthetic, which is always a worry. She did the scan and recovered well.

We do not have the formal results yet - that will take another week. But a good friend and doctor who is a senior medical researcher looked at the scans informally and said they seemed pretty much the same as six months ago. That means there is PROBABLY no issue of increasing pressure inside her skull from fluid not draining properly - an issue that has been on our minds for the last six months.

So, at this stage - before official results - the news is that we are very happy about Tamsin walking independently a little bit, and we are less worried about further problems inside her head.

love, Peter Colley

18 June 2005

Dear friends and family,

This journal entry is made as we finish our initial efforts on a website for Tamsin - tamsincolley.info

The website will enable our updates on Tamsin to be accessed by a wider group of people than those who received the emails that have been circulated previously. It will also enable people to browse photos, reports and scans as much as they need or want to.

Tamsin is progressing steadily but there are no magical breakthroughs or leaps in progress. She gets steadily more stable, and her speech slowly improves. She can only walk with someone holding at least one hand, and her speech is mostly only intelligible to her family and therapists.

We were bouyed by a neuropsychology assessment in May (see Reports page for a copy) that said that Tamsin was beyond her age level in many areas of development - but not in gross motor skills or speech articulation. So it seems that her cognitive/ thinking ability is still good.

There will be another MRI scan in July. This was originally scheduled for next January - one year after the last one - but has been brought forward due to mild concerns that the fluid at the back of her skull may not be draining properly and might be pressing on her brain matter. At the moment the view of the main neurosurgeon - Charlie Teo - is that Tamsin's recovery is in the normal range and so there is probably no problem.

Tamsin's older sister Shannon will be going to school in 2006. This has already started us thinking about Tamsin's transition to school and how she will cope. It won't be until 2008 but we know she will still have mobility and speech problems then and the transition will be difficult.

Tamsin and Shannon are very close and Shannon is very much her little sister's advocate. It is important they both go to the same school.

We are researching what the public school system will provide in the way of assistance for a child in Tamsin's situation and so far the information is encouraging.

love, Peter Colley

7 February 2005

Dear friends and family,

I last updated you on 12 July so we've been thinking it might be useful to give you some detail on how Tamsin is going.

We are certainly beyond the fear of death, fear of sudden re-hospitalisation stage. Our daughter Tamsin sleeps well, eats well and is generally a cheerful good-natured girl aged 2 years, 5 months.

But the path of recovery / rehabilitation is longer and harder than we imagined.

We had thought that she might recover relatively quickly and be walking independently by now - 10 months after the operation. She can stand for some time by herself (with us behind her) and walk with one hand held. The chief neurosurgeon now says she may walk independently one year from now. Her poor gross muscle coordination means she is in constant danger of falling over and requires close supervision, especially if she wants to be mobile and play. It's not as bad as it was; Tamsin is more aware of her situation and often waits for us when she wants to stand up.

Her speech is a problem that we weren't well prepared for. Speaking requires very fine, precise muscle coordination so it is a major hassle for her even though her comprehension is fine. She is now stringing parts of a few words together but to people outside her immediate family it is unintelligible. She is progressing but it is a hard slog.

To give you more detail on how she is progressing I attach:

- a series of questions and answers from our consultation with the chief neurosurgeon - Charles Teo - on 1 February

- progress reports from the hospital speech therapist and physiotherapist that she is seeing regularly.

It is great that the tumour is almost certainly completely gone and there is very little likelihood of a recurrence. Tamsin had her most recent MRI brain scan on 24 January.

I also attach a recent photo of Tamsin and her sister Shannon. We are very fortunate that Shannon has continued to be (mostly) charming and mature for her age in the face of this adversity. Some kids rebel at the amount of attention their sibling needs. For the most part Shannon copes with it very well and even helps us in Tamsin's rehab speaking and movement sessions. We try to make separate time to spend with her so she can be the centre of attention sometimes.

So . . . Tamsin should end up being a reasonably functional kid and her cognitive/thinking ability seems unaffected. She probably won't walk in a straight line and won't be a good public speaker. And we have a long road ahead to get to that point.

But at least we weren't in Aceh during the tsunami and we still have both our lovely daughters. We have had access to some of the best health care in the world, and virtually all of it as public/Medicare patients. Our employers, work colleagues, family and friends have overwhelmingly been sympathetic, helpful and supportive.

We have been fortunate when confronted with adversity.

Love, Peter Colley

Tamsin (left) and her sister Shannon, February 2005

Sydney Harbour, January 2005

Tamsin on a ferry on Sydney Harbour with her older sister Shannon behind her. Harbour Bridge in the background. Mother Cathie to the right.