Our Pal - Tayen G

Story written 2017

Tayen was diagnosed at 22 months old after a prolonged seizure at home. She has bilateral optic pathway gliomas (tumours) that have spread through her brain to the back. She started chemo straight away and although it saved her life she lost all her vision just six weeks into treatment. First line chemo lasted 18 months and we then enjoyed 18 months off, however it was plagued with lots of seizure activity and the discovery of hydrocephalus last September. Tayen rapidly went downhill and had bilateral shunts inserted in October. Tayen also had new tumour growth which meant she needed to have more chemo.

Update 3rd February 2024

Tayen likes art supplies to make pictures, especially foam sticky shapes, but NO glitter or confetti please. Clothes (woman’s medium) and pyjamas! Tayen likes chocolate (not sweets please). Loves her Yoto audio player and listening to music. Tayen loves baking, swimming and water play. Anything pink, and jokes! No cuddly toys also please.

Tayen continues to slowly decline. Her memory is very poor since her last seizure. We are looking forward to a trip to Disneyland this year as a whole family.

Update 31st March 2022

Tayen has had a tricky start to the year suffering numerous infections, Covid and further decline caused by her brain tumours.

Update 29th October 2021

New tumour found in June 2021, biopsy in July and major surgery in September. Unfortunately they couldn’t get it all out so it’ll likely regrow. The original extensive tumour remains stable for now. 

She’s declined but holding steady at the moment. She’s still unstable on her feet and unable to read Braille anymore. 

Update 30th June 2021

The MRI results are in and have been discussed at Bristol Children’s Hospital in their MDT meeting. Tayen has a brand new tumour. It’s already been a very long week and we have many, many questions that need answering but Tayen needs some tests done first before we can formulate a plan and move forward. The new invader wasn’t seen on Tayen’s last scan in April but it’s already around 1cm in size and very clearly visible now. This may not seem large but with Boris ( the original tumour ) already being extensive throughout her brain, this is not good news. Her team have requested an urgent biopsy so they can determine what it is and how it can be treated. An urgent referral has also gone out to get a sleep induced EEG done as there’s a chance Tayen may be having silent seizures when she sleeps. As I’ve said, we have many questions and having to take a step back to get the results necessary to move forward is very difficult. It’s going to be a tough few weeks for our family and given Tayen’s already existing complexities, we are going to have to pull out all of the stops to make this manageable for her. One step at a time. 

Update 14th June 2021

Tayen seems to be declining again with no answers as to why. 

Update 12th February 2021

Tay’s health has declined. We are waiting for her next MRI to determine next steps. She’s awaiting assessments for Autism.

Update 20th August 2020

Tayen is currently on a chemo break but she will need more. Life is difficult as Tayen struggles to cope with severe pain and routine changes. It can be very difficult to occupy her. At the moment we’re uncertain if she’ll be returning to school. She currently has lots of appointments due to her varying, complex needs.

Update 9th February 2019

Tayen spent a week in hospital undergoing lots of tests. She has damage from all the chemo she’s had. Things are tough. 

Update 1st November 2018

Tayen is currently finding things really difficult.

Update 19th July 2018

Tayen is now receiving hormone injections. She has Hypothalamic Damage which is also causing a lot of problems

Update 26th February 2018

Tayen is as complicated as ever. She suffered very severe bouts of body pain that require Oramorph and also her seizures aren’t great. Her mobility is also poor now and she spends a lot of time in her wheelchairs buggy when we are out and about.