View Megan's Guestbook

Sign Megan's Guestbook

Updated  22 August, 2002.   

Wednesday 30th May 2001

When a neurosurgeon smiles at you and says…”Do you want the good news or the good news?”….can you assume that all is well????…..YES!!!!!!!!!! 

Megan’s MRI scan from yesterday has shown a decrease in size and intensity to the areas which took up contrast in the last scan.  This is consistent with post-surgical change & blood, and not with tumour. In other words….the tumour isn’t there anymore one month later!  Megan is due to have another scan in 2 months time to hopefully continue to confirm no growth of tumour.

Could our day have got any better?  Yes….and that it did.  Megan had her eyes checked again today and she followed the light!  There has long been a question over her eyesight and today she showed definite signs that she CAN see.  At this stage she is still too young to determine the range of her sight and only time will answer that one. 

Finally good luck seems to have come our way and we would like to thank everyone out there who has prayed for Megan and crossed fingers, toes & anything else crossable – it worked!!

We have overcome so many hurdles to get this far and although her journey is far from over – Megan has proven that miracles can happen and you should never give up hope.

Tuesday 29th May 2001 17:00

Megan had her MRI scan at 11:45am today. We have an appointment at 9:30am tomorrow morning to discuss the results with Megan’s neurosurgeon. One more sleep…..or in Megan's case..... 7 more feeds!

Sunday 27th May 2001

Daily visits to the hospital for blood tests have shown Megan's sodium level to have remained reasonably stable.  A few minor hitches with her DDAVP (anti-wee medication) but overall a fairly event free weekend.  Megan's weight has been steadily increasing over the last week and today she tipped the scales at 5.655kg.

Tomorrow we hope to have a hospital free day with the district nurses visiting to take blood.

If everyone could please cross every conceivable body part at approximately 11:45am Melbourne time on Tuesday as this is when Megan has another MRI scan to hopefully show there is no tumour growing.

Thursday 24th May 2001

We visited RCH today – Megan had a clinic appointment with her neuro-oncologist. All is well in this department. 

She isn’t however following any kind of pattern at all with regards to her urine output and it is becoming increasingly difficult to know when to administer the drug that helps to control this. Earlier in the week she wasn’t weeing enough and yet her sodium level was high – today she is weeing like a trooper once again and her sodium is still fairly high. We were hoping she would start to follow some kind of pattern to make giving this drug a little more user-friendly towards mum & dad. There is nothing like making up this drug at 4am – she needs 0.05ml – not the easiest thing to do when severely sleep-deprived! 

We shall soldier on – this all seems relatively minor in comparison to her scan next week which will give us an idea of the ‘bigger picture’. With everything Megan has been through so far she is entitled to ‘not follow the rules’ and make those doctors of hers well and truly earn their money!

Monday 21st May 2001

It is wonderful to have Megan at home and she appears much happier here - lots of smiles and little coos for everyone (especially big sister Casey who loves to sit with "baby").  Home life still has quite a clinical feel about it as Megan is on very strict fluid intake vs output supervision.  She is on 3 hourly feeds and urine output needs to be checked every hour.  Somewhere in between, mummy and daddy sleep.......... we think?  Megan has appeared to improve in every way since being home and this makes it all worth it.  Sleep is over rated - or so our neurosurgeons tell us.

Day 4 at home and unfortunately it didn't go without it's dramas.  Although Megan's wee output seemed to be under control, we needed to visit the hospital for urgent blood tests to be taken.  Her sodium level came back high, once again stumping her doctors as to why.  Pleading by her parents to allow Megan to return home and not be admitted into hospital was successful today.  Megan's fluid balance regime was modified by her doctors and now includes daily blood tests.  Although we won today's battle the possibility of being re-admitted into hospital is now much higher if Megan does not control both her urine output and sodium levels.  The reason we are keen to stay at home as opposed to going into hospital is that they would only "monitor" her wee/sodium behaviour and would do nothing different to what we are doing at home.  Her doctors agree that the benefits to Megan being at home are greater than the need for her to be admitted at this stage.

I'm sure you would all agree that there is nothing like your own bed.

Friday 18th May 2001

We are home!!!  I think this statement speaks for itself.......

Although we are at home we have an appointment next week and a MRI scan scheduled for Tuesday 29th May.  This scan should prove more conclusive and we will have a better idea of what is going on inside Megan's little head.

Megan had a hearing test today and we were told she was normal.  It is a long time since we have heard this statement.  It's nice to be normal occasionally.

We cannot thank the staff at 6 West enough for their care and support, but most importantly their friendship.  Megan now has several new "Aunties" and "Uncles".

This teddy is a present from the nursing staff on 6 West to their "little angel".

Thursday 17th May 2001

Megan had her first proper bath today for a very long time.  She loved it!

Tuesday 15th May 2001

During Megan's MRI scan, whilst under general anaesthetic, her broviac line was removed.  We had to wait until 13:00 to find out that the results of the scan were inconclusive.  We have not seen the scans as yet but have been told that there is a small section on the scan that is taking up contrast, and this is a characteristic of both blood and tumour.  Our neurosurgeon did mention that after this type of surgery, it is not uncommon for blood to be visible on the scan, but due to a tumour being involved they are unable to give a definitive diagnosis.

There will be another scan in 2 weeks time which we hope will give us an answer to the blood vs tumour question.

Monday 14th May 2001 19:00

Megan's MRI scan has been bumped up the list due to a cancellation and is re-scheduled for 9:15 tomorrow morning.  An update will be posted once the results are back.

Megan was disconnected today from IV fluids and can be freely moved around without worrying about cords, lines and machines.  Megan and the endocrine doctors are still battling with the sodium level and trying to get the fluid balance under control.

Megan visiting the local celebrity Captain Matty Dean, good friend of Steve Waugh.

Friday 11th May 2001

The balancing act is continuing with Megan's sodium level versus her wee output.  Slowly but surely we will get there.  On a positive note, the physiotherapist visited today and Megan is allowed to sit up - a task she does in an incredibly cute way.

At this stage it looks like Megan's next MRI scan will be on Thursday 17th May.

Wednesday 9th May 2001

We made it back to the ward at 16:00 today however Megan has continued to wee huge amounts, her sodium level is still high and we might just be heading back to ICU if she doesn't control it soon.   

Tuesday 8th May 2001

Megan decided to get the doctors thinking again.  Overnight she decided to change direction with her sodium level.  It is was too high at about 2:00 am but she managed to get it into the "normal range" by 8:00am.  Throughout the day she has managed to remain at a constant level and we will be eagerly awaiting what she decides to do overnight.  Fingers crossed that we will get back to the ward tomorrow morning.  

We also found out today that her broviac line has punctured and will need to be replaced.  Surgery to have this fixed will happen in the next few days.  Is there such a thing as 4th time lucky?

Monday 7th May 2001

Megan is still in ICU but her outlook is positive.  Her sodium level is in the "normal range" and if this remains constant overnight she will be back on the ward tomorrow.  She has looked alert today and has smiled at her mummy.

Sunday 6th May 2001

Sodium levels have continued to be an issue and the staff in Intensive Care are monitoring and adjusting Megan's fluid levels in an attempt to keep it under control.  She has had a seizure free day and is looking much better than yesterday.

Saturday 5th May 2001

Megan's seizures continued throughout the day.  The seizures have been a result of fluctuating sodium levels in her blood.  At 23:00 she was transferred to Intensive Care as her levels could be monitored .  It was decided that closer monitoring of her levels would best be achieved in ICU.

Friday 4th May 2001

Everyone got to have a cuddle today.  Over the past 2 days Megan has been having some seizures - medications are being adjusted to control these.  It appears to be working and despite this minor setback, Megan continues to get better each day.

Wednesday 2nd May 2001

Megan is progressing well each day.  She is moving her arms and legs and is getting stronger each day.

Tuesday 1st May 2001 13:00

Megan has left ICU and is now back in the ward.  Her neurosurgeon believes after reviewing Megan's MRI scan that there is no residual tumour remaining.  She will have another scan in 2-3 weeks to confirm this.  There is also talk about her shunts being removed.  We are still in shock after receiving all this great news.

We cannot give enough thanks and praise to Megan's team of neurosurgeons at the Royal Children's Hospital, Melbourne for their incredible skill and talent in achieving what was believed to be the unachievable.

We would also like to thank the many staff who have looked after Megan's treatment particularly our extended family on 6 West.

We are still not out of the woods but the picture is looking brighter.

Today has been a very good day.