The Tamsin Colley website

2004 UPDATES

12 July 2004

Dear friends and family,

It's been a long time since the last update (14 May) and people are regularly asking how Tamsin is going.

We have passed a milestone with the 3 month follow-up MRI scan so it's a good time for a final update.

No more hospitalisations or major scares since 12 May.

Tamsin is still on the anti-vomiting medicine but she's down to one tenth of the original dose and may be off it altogether in a week.

The MRI scan on Monday 5 July showed no sign of any tumour so that's very good. However, the unexpected post-surgery blood clot is still there and has only just begun to dissipate. The blood vessels blocked by it have not yet built pathways around it. This is not seen as a major problem though better progress would be preferred.

The official view from the main surgeon is that the operation is a success and progress/recovery is reasonable though not great.

We were told that there would be significant ataxia (coordination problems) for 6-12 months. This now seems to mean that in 6-12 months we will have a better idea of how complete her recovery will be. It seems more probable than possible that there will be some level of ongoing problem such as a degree of wobbliness. We just have to wait and see. And work with Tamsin to stimulate her efforts at coordination so that the brain area that was damaged by the tumour (the cerebellum) finds new ways to do its job.

Tamsin is very cheerful but somewhat frustrated at her coordination problems. She can sit and crawl well, and is now standing unaided for a few seconds. She requires assistance to walk and at the current rate of progress it will be some months before she can walk unaided.

While Tamsin's comprehension of what people say is quite good, her own speech is falling behind (it's another muscle coordination issue). Apparently it is common for children who have had this kind of brain surgery to need speech therapy and we are starting that.

Overall, our lives are a lot less fearful than they were but day to day life is pretty labour intensive. Neither Cathie nor I have returned to our employment at the pre-surgery level. In part that is due to Tamsin being unable to attend childcare without extra attention. There is a Commonwealth scheme to fund the extra attention required for disabled children in long day care and that should be sorted out soon. Tamsin may need it for many months.

Thank you all for your support over the last few months. Life isn't normal (is it ever?) but it's heading more that way.

Love, Peter Colley

PS the delay in sending out this update since 5 July is because I was hospitalised with pneumonia from 6-8 July. It's the 2nd time I've had pneumonia but the first time I've been overnight in hospital since I broke my arm in two places at age 4. I've resolved to reduce the risk of being run-down by getting 7 hours sleep a night rather than pretending I can get by on 5-6. I'm recovering well and went back to work today.

13 May 2004

Dear friends and family,

Tamsin and Cathie came home from hospital (again) yesterday. So far, so good.

Tamsin was in hospital from Saturday to Wednesday with unexplained vomiting following the brain tumour removal on 31 March.

Ultimately the doctors' main view was that she is more likely to chuck due to factors persisting since the operation - the blood clot is still there but no longer a major problem, the area of the surgery may be bruised and unstable, etc.

There are a couple of other theories afoot but not worth burdening you with.

She has been given a supply of a new drug designed to stop vomiting in patients who are having chemotherapy (and Tamsin isn't having chemo). Apparently it is so new and expensive that it isn't available on prescription and the top doctor at the hospital had to authorise it. Ondansetron

Thus far the results are great. No chucking, but more than that she has been very cheerful and willing to progress. She is now sitting fairly well, and has crawled up to 5 metres. It is so damned good to have a kid who is happy in herself and willing to get about and do things. But still a wobbly girl and will be for some months.

The stress on the parents has decreased considerably. We have disposable chuck bags positioned around the house, the car, the kids' day bags, etc but we feel we don't have to monitor her constantly. Just at least every 10-15 seconds.

At this stage, less than 48 hours after discharge from hospital, and no less than 4 hospitalisations since 25 March, we are making no forecasts.

Love, Peter Colley

8 May 2004

Dear friends and family,

The last update was 29 April and I thought that would be the last.

But, like a bad soap opera, Tamsin's problems just continue.

She has been hospitalised again today (Saturday 8 May) for 1-2 nights. With either a mystery bug or a case of her tumour and surgery leaving her with an excessive predisposition to vomiting.

Since I last emailed on 29 April, Tamsin has made reasonable to good progress neurologically, with increasing steadiness, ability to sit independently and some crawling. But she has been vomiting 1-2 times per day, leaving us worried about her hydration and generally unnerved about taking her anywhere; even on a local car trip.

On Friday she vomited 4 times and ate nothing. Cathie and Tamsin went to hospital and they were sent home after some liquid was taken in without chucking, and with instructions to return the next morning. That was 5 am after she woke up in poor condition but refusing to take any food or liquid.

So she has been admitted for 1-2 days for observation and rehydration. A further MRI scan of the brain was done today under general anaesthetic. It showed nothing unexpected.

The best spin that can be put on this is that it is a case on "two steps forward, one step back".

Tamsin's older sister Shannon threw a rather large tantrum on the prospect of going for a hospital visit today. After 4 separate hospitalisations of Tamsin since the last week of March, I guess she is saying she has had enough. I think all in the family feel the same way.

Love, Peter Colley

29 April 2004

Dear friends and family,

The news is good and hopefully the last that we need to send out via email for a while.

Tamsin and Cathie came home today (Thursday). Tamsin has made an excellent recovery from the urinary tract infection (UTI) after beginning antibiotics a few days ago. No more temperatures and no more vomiting.

In terms of recovery from the brain tumour she appears to be progressing well albeit slowed down by the UTI as well as the previous complication of a blood clot in blood vessels leading from the brain. She is sitting unaided for several minutes at a time and tomorrow we will start encouraging her to crawl again.

The doctors have a theory that she may have an anatomical predisposition towards UTIs. A test yesterday showed no major problem but there will be a different test in about six weeks to see if there is a minor problem. The difference between major and minor in this situation is that "major" requires surgery while "minor" may be something that she will grow out of without further surgical intervention.

Right now things look really good and we are crossing our fingers that they remain that way.

Love, Peter Colley

26 April 2004

Dear family and friends,

The news since Friday is that Tamsin was hospitalised again from about 5.30am Saturday. High temperature and vomiting.

This has continued to today (Monday). Panadol and Nurofen do control the temperature but it quickly rockets up to around 40 degrees once they wear off.

It has been and is both frustrating and worrying for us. This is the third bout of unexplained temperatures - once before and twice since the operation. All supposedly coincidental and unrelated to the operation or to the brain tumour.

This bout has finally been diagnosed as a urinary tract infection (UTI) and Tamsin is now receiving antibiotics. If they work she should be back home Tuesday or Wednesday.

Neurologically she has continued to progress ie in her understanding, vision, coordination and mobility. Again slowed down by the complication. We can only hope there are no further complications.

Love, Peter Colley

Update and recap 23 April 2004

Dear family and friends,

At the risk of overexposing you to these emails, it is a week since Tamsin Colley came home so perhaps an update is worthwhile. Also, Cathie has asked that I do a recap of the events for those who only have part of the story.

Tamsin is doing well, but she has a considerable way to go and there have been some worrying times in the last week.

Since arriving home on Thursday 15 April Tamsin has noticeably progressed each day. But her starting point back on 1 April was flat on her back with searing headaches and nausea, no movement on her right side and heavily blurred vision.

In the last two days she has started to sit unaided for several seconds and has made some tentative crawling efforts. Over the last 3-4 days her ability to grab food and feed herself has dramatically picked up. Her speech, which we have been warned will take longer to recover than her movement, has to date included mama, more and boo (as in peek-a-boo).

Believe it, this is good progress. I'm hopeful she will be crawling and siting unaided in about a week. That won't be far off where she was before the operation, as she had never walked independently due to the tumour interfering with her coordination.

The most worrying thing has been some major chucks. We were warned that chucks were a sign of deterioration warranting a return to hospital. After two major chucks on Sunday morning we spent 2-3 hours in hospital casualty before being sent home. Further chucks have followed on Monday and Wednesday but a scheduled visit to the neurologist today left us with the advice that provided other things were progressing well the occasional chuck was OK.

We have the distinct impression that, while the headaches have subsided, she still doesn't like bright sunlight or too much colour and movement. She is still on painkillers 1-2 times per day.

So . . The current signs are good; let's keep pour fingers crossed and in another week we might be able to say we are out of the woods.

Shannon, our three and a half year old, has continued to be (mostly) an angel throughout this. Her routines have been totally upset and Tamsin has been getting most of the attention. But she has coped very well. Thanks to those who gave her presents to help her feel special. And we all scored a huge amount of chocolate over the Easter period as numerous well-intentioned people/foundations/companies toured the children's wards of the hospital. We even got chocolate from a major producer after Easter who was clearing unsold stock.

_______

Recap of events

These emails first started on 25 March with the formal diagnosis via CT scan of a 4cm brain tumour in the cerebellum (back of the brain, low down). Apparently coincidentally, she was admitted to hospital the following day with a high temperature for one night but it seems to have been an unrelated virus.

Our concerns began to arise back in January when she failed to progress in her efforts to walk. She was 16 months old. In February and March Cathie began to research and consult on this issue. As a physiotherapist she could see something was wrong, rather than just slow. We began to canvas possibilities such as spina bifida and cerebral palsy.

Around the beginning of February there was an appointment with a developmental paediatrician, who among other things measured her skull and told us to come back in 6 weeks when she was 18 months old. 90% of kids are walking by 18 months and half of those who aren't do have a problem.

At the follow-up appointment a second skull measurement showed an unusual increase in skull size and warranted the scheduling of a reasonably urgent CT scan. A good friend advised that a tumour was one of the more likely causes of the problem.

When the tumour was finally diagnosed on 25 March it was therefore not a complete surprise. We had been going through the mill for some time.

Further dates/events were:

Monday, 29 March - admission to hospital in advance of surgery due to some signs of neurological deterioration. Probably coincidental.

Wednesday, 31 March - surgery. Perhaps the worst moment in our lives as we surrendered our daughter to the surgeons. Cathie and I have both had to cope with death and near-death events among our families and friends, but dealing with such an event for one who has had so little opportunity to experience life is especially gut-wrenching.

Surgery lasts longer than expected but the surgeons says it was a good outcome. She looked "OK" after the operation - no ventilator down her throat and no tubes draining fluid out of her skull.

Thursday, 1 April - Tamsin is discharged from intensive car only about 18 hours after surgery. This looks good. An MRI scan shows the tumour completely removed, and the most common post-operative complications have not occurred.

Tuesday, 6 April - after initial improvement Tamsin's condition deteriorated. Constant headaches (hard to diagnose), frequent vomiting and severe constipation. Doctors very worried and run a series of tests - urine, blood, lumbar puncture, CT scan of brain, X-ray of chest and abdomen. No useful results. The doctors develop alternative and contradictory theories about what might be happening.

Wednesday 7 April - final biopsy results confirm that the tumour was benign. Good news. No chemotherapy or radiotherapy required, and long term prognosis is for complete or very good recovery. But problem symptoms are only improving slowly.

Thursday 8 April - re-examination of the MRI and CT scans from before and after the operation reveals the presence of a blood clot in Venus sinuses or blood vessels draining from the brain. It is apparently highly unusual and has the doctors stunned. It explains Tamsin's deterioration and slow recovery. The clot means there to be higher blood pressure than otherwise in the brain and this will cause problems. Apparently kids are normally bouncing around a week after this operation; Tamsin is still laid out on her back weak with pain, nausea and constipation.

The doctors are unwilling to administer blood-thinning drugs to help dissipate the clot as thinners increase risks in post-surgery situations. Instead we have to wait for the clot to dissipate by itself, or to become hard and allow the blood vessel to work around it.

Friday 9 April - Hament Dhanji succeeds in coaxing the first smile from Tamsin since the 31 March operation. The smiles flow for her dad and others the following day.

Thursday 15 April - Tamsin discharged from hospital. Over the previous few days her progress had become consistent and the doctors were comfortable with the view that she was definitely on the mend. The neurologist said we could expect Tamsin to progress in "leaps and bounds" over the near term.

_____

We are hopeful that Tamsin will sit properly and crawl in the next week or so. But given that she had never learnt to walk properly, that is something she still needs to learn rather than recover. There is still a significant possibility that the surgery disrupted some parts of the cerebellum with the result of medium term mobility impairment eg a limp. This would probably disappear in a year or two.

We just have to wait and see. For the moment we have our youngest daughter back and well on the road to recovery. For that we are immensely relieved.

Thanks to all of you who have been with us through this in your thoughts and actions.

Love, Peter Colley

15 April 2004

Dear family and friends,

The good news is that Tamsin is home today and progressing very well.

After a roller coaster ride of ups and downs, Tamsin has been doing well over the last few days. Rapid progress in mobility and stability, and increasingly happy within herself.

The neurologists have said they think she will progress in leaps and bounds over the short term.

Right now she is more like a 5 month old than a 19 month old; she can't sit up unaided nor crawl. But we are hopeful she will recover strongly in the short term. Complete recovery including walking and running; well we will just wait and see.

To put it all in perspective - in late March we were terrified of losing our daughter and today we are mostly wondering how long her recovery will take. It's a helluva lot better position to be in.

Thanks to you all for your support through this difficult time.

I've attach a photo of Cathie and Tamsin leaving the hospital. Tamsin was being a bit circumspect about the exit but is otherwise happy. And tonight Cathie is sleeping in a bed rather than a chair in a hospital ward for the first time since 29 March.

Love, Peter Colley

Leaving hospital, 15 March 2004

Tamsin and her mother Cathie leaving hospital about 2 weeks after surgery (which was 31 March). Cathie had spent every night of those weeks sleeping in a chair next to Tamsin's bed. There were to be more hospitalisations in coming weeks.

Tamsin's scar, 14 April 2004

This shows the scar from the surgery after about 2 weeks. It healed well, and is now invisible underneath her hair.

9 April 2004

Dear friends and family,

Tamsin was a bit better today. Holding food and liquid down and quite a bit more animated. Not so exhausted by headaches. If this keeps up she might be home in days rather than weeks. I attach a photo of her first smile since about 30 March. Our thanks to Hament Dhanji, the born comedian and hero who produced this smile.

Love, Peter Colley

Tamsin's first smile after surgery, 9 April 2004

Tamsin had some post-operative complications which caused vomiting, constipation and headaches. It was 9 days until her first smile. It was produced by our good friend Hament Dhanji, a born comedian. Smiles flowed more easily in the following days.

8 April 2004

Dear family and friends,

Yesterday's update was upbeat; this one is more downbeat. We finally have an explanation rather than a theory for Tamsin's headaches and nausea. The problem will probably be resolved/fixed but it will take some weeks.

A radiologist re-examined Tamsin's MRI and CT scans and noticed a difference in the 'before' and 'after' scans which no one else had picked up. There is a 'thrombosis in the Venus sinuses'. In plain English this is a blood clot in one of the blood vessels than drains FROM the brain at the back of the head.

The blood clot is causing pressure inside her brain to be higher than it should be, and explains her symptoms.

The clot should either gradually dissolve, or the blood vessels will develop paths around it. Either way, it may take weeks, during which time she will be in some pain.

There is some risk of the clot growing larger and precipitating a stroke, but most of that risk is close to the time the clot first happened and so is now past. There is also some risk of part of the clot breaking off and making its way to the lung where it could cause significant lung failure.

It is common to prescribe blood thinning drugs to help dissipate clots, but the doctors are unwilling to do that in cases of recent surgery as it increases the risk of wounds leaking or breaking open.

So . . . at least we now know what the problem is. The long term probability of full recovery is still very good, but the current initial recovery period of 7-10 days now looks like stretching into weeks.

Cathie and I have yet to work out how to deal with this in terms of looking after Tamsin, Shannon and our jobs. Both of us have substantial accumulated sick/family leave and sympathetic employers, so that is not an immediate issue but is more pressing over time. Shannon has thrown a few tantrums over the disruption to her life but has almost always been an angel. We are so fortunate to have her. Thank you to the numerous people who have already helped us by spending time with her (and good luck and special thanks to Mandy and Andrew for taking her to the Easter Show on Good Friday!).

Thanks to all of you for your continuing support.

Love, Peter Colley

7 April 2004

Dear family and friends,

After yesterday's update telling of continuing problems, today's update is good news.

After throwing up breakfast, Tamsin has been holding down all food and water. She has also been less distressed generally, indicating her probable headache is subsiding.

Most of today she was lying quietly, with grizzling on being picked up and exposure to bright light or noise. All consistent with a low pressure headache as described yesterday.

Her final tumour biopsy/pathology result arrived today, confirming the initial result that the tumour was benign. That's very good news. There is a high probability she will make a complete recovery with no recurrence of the tumour.

If we all keep our fingers crossed, Tamsin may come home during Easter.

love, Peter Colley

6 April 2004

Dear family and friends,

It's 4 days since the last update and Tamsin is having problems rather than getting better as expected.

She is being laid low by a mystery illness which the doctors have yet to diagnose. It's symptoms appear to be a mixture of major headache, severe constipation and inability to hold down food.

It's been getting worse over the last few days though the worst appears to have been Monday night when she threw up 6 times and was awake in pain from 3am.

Though she appears to be getting better neurologically since the operation - all her limbs are moving, and her eyes now follow you around - the illness appears to be sapping all her energy and making her very miserable.

The doctors have done:

- a CT scan of the brain - no problem

- urine tests - no problem

- a blood test - no problem

- xrays of chest and abdomen - no problem except evidence of constipation

- a lumbar puncture to check cerebro-spinal fluid (CSF) for meningitis - no problem.

The neurosurgeons appear to be leaning towards the idea that she has too much fluid in the brain still and this needs to be drained via a lumbar puncture.

The neurologists seems to have the opposite idea - that she is experiencing a leak of CSF and this is causing a 'low pressure headache' from loss of fluid pressure in the brain. Apparently women giving birth who have an epidural block that goes wrong can experience this headache - caused by the epidural needle causing a leak of CSF. Apparently it is a really bad headache.

The latter theory implies that the neurosurgeons may have caused the problem during the operation, and the surgeons believe they didn't.

We can only hope that the problem goes away. At the time of the operation it was stated that Tamsin might go home in a week, which would be tomorrow (Wednesday). At this stage we are long way from discharge.

love, Peter Colley

2 April 2004

Dear family and friends,

Our immediate crisis with Tamsin appears to be over so I should stop these daily updates. Hopefully the news from now on will be more gradual as well as good so more normal communication will work.

Tamsin appears to be recovering well from her brain surgery last Wednesday. Her various doctors think so too. Today we had her sitting up and she had two meals - her first solid food since Tuesday night.

All limbs now appear to be working and her eyes are coming into consistent alignment. We were told she would have had double vision for some time, which was one good reason to keep her eyes closed.

We still have to wait out the risk of post-operative infection and get the final confirmation that the tumour was benign. It will then be a gradual process of discovering her degree of mobility and how fast she progresses in that area now that she no longer has a 4cm diameter tumour and cyst interfering with it.

She may come home around Tuesday-Wednesday next week.

Thank you for being with us through this.

Love, Peter Colley

1 April 2004

Dear family and friends,

Tamsin was in intensive care for less than a day after her brain surgery. She is now in ward C1 North at the Sydney Children's Hospital.

Today she was very drowsy but improving well. Another MRI scan under general anaesthetic on top of yesterday's major operation kept her that way.

The official news from the doctors that is new since yesterday is:

- the MRI today showed that all of the tumour was removed

- there have been no post-operative complications, and most of these tend to occur in the first 6 hours after the operation

- there is some sluggishness in her right leg, but it is responding to stimulus so it will hopefully be OK in the medium term.

Still some days to confirmation that the tumour was benign, and also many days/weeks to see what sort of damage to balance/coordination/mobility has been done.

So far, it looks good. Casting an eye around the ward Tamsin is in shows that everybody else there has far worse problems. Knowing that Tamsin is on the up means that Cathie and I feel a whole lot better than we did yesterday afternoon.

Shannon coped very well with seeing Tamsin in intensive care. We had been told that kids are generally far less intimidated by intensive care than most adults.

Love, Peter Colley

31 March 2004

Dear family and friends,

The news is good. Things could still go wrong, but the biggest part seems to have gone well.

Tamsin went into surgery at 1.15pm today and the first feedback from doctors was at 6pm. (After we had been told it would be a morning operation and 3-4 hours.) By 7.30pm she was out of surgery and in intensive care.

The good news:

- they think it was a benign tumour, though confirmation of that will take until 5 working days after surgery

- they believe they got it all

- no radiotherapy or chemotherapy required

- the surgeons believe they did some damage to the cerebellum, and this will result in some temporary motion/mobility problems but probably nothing major or long term

She looked 'good' after surgery. No ventilator down the throat, and no tubes in or out of the head. Only visible sign of surgery a large bandaid on the back of the head.

There is still the risk of post-operative complications - infection, haemorrhage, stroke. And they may have the tumour wrong (5% risk)

With luck she will be out of intensive care within a day, and back in the neurological ward (ward C1 North, Sydney Childrens Hospital, Randwick). Probably another 5-6 days in hospital.

Thank you all for your support. It mattered.

Love, Peter

Intensive care unit, 31 March 2004

30 March 2004

Dear family and friends,

Thanks to you all for your support in recent days.

Tamsin was admitted to the Sydney Childrens Hospital, Randwick, today after showing some worrying symptoms of neurological problems - dazed look; one eye half-closed. Probably just the strong drugs she is on. She perked up quite well when I was there this (Monday) evening.

Tamsin is having an MRI scan on Tuesday (which requires a general anaesthetic for young ones that won't stay still) and her operation has been brought forward one day to Wednesday 31 March.

Love Peter Colley

24 March 2004 - Tamsin is sick

Dear family and friends,

Apologies for the email but this was the easiest way to tell most of you this news.

Tamsin has been hospitalised tonight at the Sydney Childrens Hospital in Randwick. No bed or ward yet. Cathie is with her. We think, but do not know, that surgery will be within a day or two.

Tamsin has worried us for some time with her slow progress in walking. Lots of problems with coordination and balance.

A paediatrician we saw a week ago agreed it was a problem now she was 18 months old and organised a CT scan for today.

The scan has revealed a 4cm brain tumour in the cerebellum (back of the head, low down). Initial signs are that it is benign and that its removal would have good outcomes (minimal brain damage, if any), but we have to wait for an MRI scan, and ultimately surgery itself, to confirm this.

Love you, Peter Colley

The Colley & Sherrington family, November 2003

This photo is from before diagnosis of the brain tumour. Tamsin in the middle, older sister Shannon to the right, dad Peter Colley at the back and mum Cathie Sherrington on the left.