Friday, 10 June 2016

Bob The Blob - Maisie's Tumour.

Maisie is a beautiful young girl with a passion for dancing and gymnastics.

Over a short period of time things began to change; a squint in her eye, headaches, a weakness in her arm and difficulty in walking.

The result was heartbreaking when Maisie was finally diagnosed with a brain tumour.

After some time in hospital and surgery, it was confirmed the tumour was benign.

Maisie is slowly recovery and taking one step at a time.

Watch this space!
In time Maisie will be back on stage again..

Maisie's mother kindly agreed to an interview with me in order to raise awareness of her daughter's condition.


The Interview:

What us your daughter's name and age?
Maisie, 10 almost 11.

When did you first notice there was a problem with Maisie's eyes?
At the end of November we noticed a turn in her right eye.

What did your optician diagnose it to be?
The optician said that he believed it was a squint - my husband mentioned that he had a lazy eye but his effects his eyelid not his actual eye. 
We have since been advised that Maisie has adult eyes and adult eyes do NOT develop a squint and especially this quickly

How was this dealt with?
He prescribed glasses and referred her to our local hospital for an Opthomology appointment - not as an urgent referral!!

Maisie's gym teacher noticed a weakness in Maisie's left arm, please explain in detail the exercises you taught Maisie and why?
It was Maisie's gym teacher that noticed the weakness - we bought her a gymnastics bar to practice chin ups and also started doing the plank every night to try and build up her arm strength

After a doctor's appointment Maisie was put on a waiting list to see an orthopaedic consultant, why did you pay privately instead of waiting?
When we were referred to the orthopaedic consultant I called to see how long we would have to wait and they said the referral had been received but we would have to wait. 
When the weakness then presented in her leg I called again and was told again that we had to wait - we were not prepared to wait as she could hardly walk so we contacted Spire (bupa) and basically saw the same consultant we would've seen if we had waited but we jumped the queue by probably about 6 weeks

What tests did the consultant do?
The consultant did a full body check testing her strength then sent her for blood tests and obviously the MRI

What result did the MRI show?
The MRI showed the brainstem with the tumour surrounding it

What was the process of the 2 hour full brain and upper body scan?
It was done as a full body scan as at the time we were ruling out everything.
She was conscious throughout the two hours.
It was only meant to be an hour or so but they then needed to put through the contrast dye which at the time we did not know where or why.

When was Maisie diagnosed with a brain tumour?
The MRI was done on 14 January and we were then told on 15 January.

Maisie named her tumour, Bob the Blob, why?
No reason behind the name, we were just having a conversation and I happened to mention that some people name their tumours so she did just that

What was the process of the 7 hour surgery?
The surgery was to retrieve a biopsy of the tumour and also to debulk as much of the tumour as was safely possible to remove

What was the cause of Maisie's lung collapsing?
We do not know why her lung collapsed, we think it was just because her body had had enough and I suppose being face down on the operating table for 7 hours didn't help

How was this treated?
It was treated by ventilation which is why she was put into a coma so that she could be ventilated and to allow her body to recover without having to work to hard. Basically all her body had to do was use her heart.

How long was Maisie in a coma for?
She was in the coma for about a week but it took two weeks for her to come round completely

The tumour turned out to be benign, a low grade known as; Pilocytic Astrocytoma, what was your initial reaction?
One less thing to worry about and we could focus on her recovery

Why did Maisie have a tracheotomy tube?
The tracheostomy was put in to replace the ventilation tube in her mouth as at the time, Maisie's only way to communicate was for her to mouth words to us and with a tube in the way this was not possible

What did That's Life magazine do for Maisie and why?
They will be sending £500 for Maisie to buy an iPad to help with her recovery

Are there any complications to Maisie's health due to the tumour and/or surgery?
Maisie was paralysed after surgery but she is slowly regaining use of her body which will take time. 

What is Maisie's prognosis for the future?
The prognosis is take each day as it comes and whatever use she regains is more than we and anyone expected

What advice would you give other parents/guardians in a similar situation?
Don't ignore anything with your child.
Had Maisie's optician have told us to go and see someone about the eye rather than leaving us in the system for an appointment, Maisie would not have become so weak and things could have been different. 
When it comes to a child there is no price tag on getting a quicker diagnosis.


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