Tayen G

02 May 2017

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 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.

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Blakely A

02 May 2017

Story written 2017

Blakely failed to thrive as a baby and was enterally fed from a few weeks old.  He failed to meet his key milestones and then enterally feeding caused him excruciating pain. At nine months old Blakely was started on TPN on which he has thrived and has caught up on all his milestones. Unfortunately, TPN comes with great risks and none greater than sepsis; Blakely has had sepsis approximately 80 times in his life and is now on his 11th Hickman line. He is rapidly running out of access and each hospital admission is becoming harder with Blakely being more aware of what is coming next.

Update 2nd September 2017

Blakely’s health has been a struggle the past month but is slowly improving and with the start of school coming we are hoping for a good spell of health over the next couple of months. Blakely loves swimming and loves being in the water. Thank you to everyone at Post Pals for brightening Blakely’s smile when he is having a bad day.

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