Updates

The Tamsin Colley website

2006 UPDATES

24 October 2006

It has been a long time since the last update. That's been because the news/life has been mostly good.

Tamsin has improved quite a bit over the course of 2006, though she is (and always will be) wobbly and with impaired speech. Her walking has improved considerably. Last weekend she walked to her grandmother's house next door without us parents holding her hand and without even thinking about it. A year ago that would have been unthinkable. She now talks a lot and most people can understand her if they put in a little effort. Last year most people didn't understand her.

We went on holidays to the far north (warm) part of Australia in July. Things went well; everyone coped and had a good time. Tamsin got to try out her new (second-hand) wheelchair (see photo). It has been a good decision to move to the wheelchair for significant walking distances. As well as being more comfortable for her, others now recognise she has a problem that they should make allowances for. When she was in a jogging stroller people just thought she was lazy and her parents poorly motivated to make her walk.

Shannon, Peter and Tamsin. Cairns, July 2006

In ealry September Tamsin had her 4th birthday. Together with her sister Shannon they had a birthday party.

Joint 4th and 6th birthday party, September 2006

In October we spent a week and a half going to the Gold Coast (Australia's mini-version of Miami USA), (where Dad had a conference to attend) and visited relatives on the way back down the coast to Sydney. Again, it went really well.

Tamsin, Dad and Shannon, Gold Coast, October 2006

There is no significant medical/diagnostic news to report. While things are basically looking "up" there are always new decisions to be made. Is she right or left-handed? We think that, from observation, she is probably right-handed, but her disability is more on her right side so that impairs her right hand ability. We are in the process of deciding that we need to encourage her to be left-handed.

It is only a bit over a year till she will be in school. We have already negotiated a little with the pubic school where she will be enrolled, and they have said they will seek funding to enable them to cope with her. They have indicated a quite positive attitude to coping with her. Like all schools, they have quite a lot of kids with behavioural problems, so when they observed her calmly playing with toys with a reasonable amount of concentration they thought she was pretty good!

Of course we remained concern that there will be a presumption by teachers and students that she is developmentally delayed or intellectually disabled because of her speech impairment, when to date she seems (and has been analysed as) quite bright.We will attempt to establish some reading skills before she starts school so that she has some evidence of her ability.

We have a vague plan right now to travel around Australia for three months next year, doing a lot of camping. This will require a lot of planning, and is ideally done before Tamsin actually starts school. We'll keep you posted.

love, Peter and Cathie

28 June 2006

Tamsin had her first MRI in about 12 months on 5 June and we met with neurosurgeon Charlie Teo on 6 June. Since then, the team of doctors deaing with her case at Sydney Childrens Hospital has also reviewed the scans.

All up, the news is good. No sign of tumor! And the large fluid collection at the back of the cerebellum seems exactly the same as a year ago. Charlie Teo said the next scan will be in two years!

There was controversy about this fluid collection after the last MRI, with some doctors saying if you don’t operate on this it will get worse as it is an isolated cyst. Well, we didn’t let them operate so we are very relieved that the fluid collection has not grown. The lack of growth seems to indicate that due to the space in the brain from tumor removal and damage from tumor, scar tissue etc to the 4th ventricular drainage area the CSF (cranio-spinal fluid) has found a new pathway to drain which involves this area of fluid collection. It does look scary on the MRI as it is pretty big (looks like one quarter of the cerebellum on some views) but we are now happy about leaving it alone.

So we can get back to the ongoing process of coming to terms with Tamsin’s likely lasting deficits and working towards improving these as well aiming for her life now and in the future to be as rewarding and enjoyable as possible. The next step on the way is to look into getting her a wheelchair as she can walk by herself indoors and with her walker short distances on flat ground outdoors but is still being transported in a jogging pram or special needs stroller for longer distances and uneven ground. We feel this is not so appropriate for a child who will be four in a few months. We think a wheelchair will give her some more independence and help her feel like a big girl who has some mobility problems but gets about well rather than being an overgrown “baby”.

We'll put pictures of the MRI scans in that part of the website.

We're off on holidays for two weeks from 1 July - to far north Queensland where it's warm at this time of year in Australia.

love, Peter and Cathie

Tamsin receiving physiotherapy, Sydney Children's Hospital, May 2006

23 April 2006

31 March 2006 was the two year anniversary of the removal of Tamsin's brain tumour. We had a quiet champagne to celebrate Tamsin's survival and recovery, and to reflect on progress over the last two years.

There has been a lot of progress, but not as much as we first thought. Tamsin is walking and talking, and seems very bright / intelligent. But we had expected a fairly complete recovery, whereas we now recognise that Tamsin will always be a wobbly child and always have a speech impediment. The ongoing problems seem to be related to exactly where in the cerebellum the tumour was. It was in the middle of the cerebellum, and that seems to do more damage to motor skills than tumours that are to the side of the cerebellum.

In the reports section of the website we have uploaded a report from the developmental paediatrician summarising Tamsin's progress.

We have begun the process of getting Tamsin enrolled in the school we hope she will attend - Maroubra Junction Public School. Her older sister Shannon is already enrolled there. We have been advised that consultation on enrolling a disabled child should start at least 18 months before the child is due to start school - to enable the school to make the necessary adjustments to to receive additional funding for that. Tamsin will start school in February 2008. It will be a major step in seeing just how much she can be "mainstreamed" and how much assistance she will need.

The Kids with Cancer Foundation has kindly donated a new walking frame (see photo). Technically Tamsin did not have cancer, as it was a grade 1 tumour. Higher grades get called cancer. But Tamsin's tumour would have killed her if it wasn't removed, and it has had permanent impacts on her abilities.

Technical Aid for the Disabled (TAD), another charity, had adapted (on a cost-only basis) a bicycle to enable Tamsin to ride like other small kids. It has a special back support, a seat belt, extra-strong training/stabiliser wheels, and foot straps. She loves it - see photo.

All in all, things are looking up.

The worst news is that we lost the first 8 months of our Guestbook due to a stuff-up by our website hoster. Their claims of multiple back-ups turned out to be worthless. This was a major disappointment ot us and very distressing, as there were so many kind and valued comments there. We have now utilised a different guestbook hosting service, and plan to make our own regular backups of the guestbook. We have also decided to abandon the site-design software provided by the website hosting service as it was very awkward and clunky. We're now just doing our own site design in a very minimalist style.

love, Peter and Cathie

Tamsin with her new walking frame, March 2006

Tamsin with walking frame, March 2006

Tamsin with her specially-modified bike, March 2006

Tamsin on her bike, March 2006