Monday, 16 May 2016

Bladder & Prostate Cancer

What is your child's name and age?
Sebastian Stevens
2 years old

When was he diagnosed with cancer?
18 months ago during October 2015

What type of cancer does he have?
Rhabdomyosarcoma of the bladder and prostate

How was a diagnosis made?
An ultra sound showed the tumour and the MRI, biopsies, camera into his bladder

What symptoms did he have?
Blood in urine, prolapse bowel and 6 weeks of intense pain

What treatment has he received?
chemo x9 cycles, surgery to remove 1 third of his bladder and brachytherapy, catheters, NG tube, port line

What is Brachytherapy?
When they insert rods into the effect area and use radioactive drugs to blast the cancerous cells in an attempt to preserve the other organs.
Seb had to lay still for 3 days whilst he underwent 6 cycles

What is the Lily Pad?
The lily pad lays in the bottom of the UV pole and allows the children to sit on it instead of lugging the pole around after them.
It helps prevent them pulling out their lines.

Who is the founder of the Lily Pad?
Nick Konkler

At what cost is it to purchase and from where?
At present America and Ireland are producing them for us in the UK but I would like to get them started over here and we have worked out each one would cost about £6-£10

Please explain in detail about Nick's Lily Pad Fund on GoFundMe?
You would need to speak to Christina Konkler about this as it is her fund but basically as all the lily pads are made by them it helps to pay for the production and shipping costs

Please explain in detail about the JustGiving page called SuperHeroSon?
This is to raise funds for the Royal Marsden who took away sebs pain and spent time with him to manage him anxieties and pain.
Seb wouldn't of been able to have his treatment without this charity  and we want to raise as much money and awareness for them to say thank you for saving our baby boy's life

What advice would you give to other parents/guardians of children in similar situations?
Every situation is different.
We did not look up anything on google as it is all doom and gloom and everyone's experience is different.
Take any offer of help.
There are so many people and charities that are set up to help you.
It does get easier even though your whole world has crumbled unfortunately you and your child will get used to the hospital life and it just becomes the norm.
You don't have to be strong, I cried for the first month and still do whenever I think about things!




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