Wednesday, 23 November 2016

Cancer Sucks

Cancer Sucks www.bellybuttonpanda.co.uk


Peritonitis


Wednesday 23 November 2016 saw Ryan's first check up with the GP nurse since being discharged after his emergency surgery, which is a whole other story that I will tell in a separate post titled Peritonitis


On the way to the surgery in the car Ryan begins a conversation and it goes something like this:

Tuesday, 22 November 2016

I Am...Autism

I Am... a look into an autistic mind. www.bellybuttonanda.co.uk

I Am...

I asked Ryan to complete the following sentences.  I gave him the two words in bold and he completed the rest. It gives an insight into his Autistic mind. When you ask, say the two word prompt and try to take the first thing that they reply.

I am...alive.

I wonder...what's in space.

I hear...sounds.

I see...things.

I want...eternal life.


I pretend...that I am happy.


I feel...nothing.

I worry...that people will find out.

I cry...every night.

I understand...that humans shouldn't exist.

I say...offensive things.

I dream...of a time gone by.

I try...to smile.

I hope...it will all be over soon.


I am...

Monday, 21 November 2016

Head and Neck Cancer

Head and Neck Cancer, NK/T-cell Lymphoma www.bellybuttonpanda.co.uk

Epstein Barr Virus

EBV positive extranodal NK/T cell non-Hodgkin lymphoma nasal type, Stage 1E.

It's a bit of a mouth full but this is Ryan's official diagnosis. It is a rare lymphoma, but extremely rare in children. It is extranodal in his tonsillar area at the back of his mouth in the oropharynx or Waldeyer's ring. Caused by the Epstein Barr Virus that usually creates Glandular Fever. 

Thursday, 3 November 2016

All guns blazing

After speaking to Dr Ed, and believing I had been paranoid and neurotic all along, I tried for a few days accepting what we were first told, that Ryan's prolonged illness was a result of his poor diet and dental hygiene. I was still wrestling with how I convince my autistic teen to change his eating habits while we were up against his severe sensory processing issues when things suddenly changed again for us. 
It was decided that a 2nd biopsy operation was not needed as the new Pathology Department (PD) had enough sample from the first op to work with. The 2nd PD disagreed with the first Pathologist who's initial findings were dysplastic cells. The reason for delay in reaching a diagnosis has been that 2nd PD have sent samples to Germany and to London, because they believe he has a rare form of Lymphoma. ENT have only seen 1 other case in 17 years and it was in a 22 year old male. Carmarthen and Swansea decided we needed to be referred to a Paediatric Haematologist in Cardiff so more waiting for that appointment.
Another week on and we went to University Hospital of Wales, Cardiff on Friday 26 August as a day patient to meet the team at the Teenage Cancer Trust unit that will be conducting his treatment. 
A full day of talking, tests and examining ensued with arrangements made for a bone marrow biopsy, PET-CT scan and to have his central line fitted ready for chemo to start on possibly Monday 5th September, so after months of waiting and uncertainty it is now all guns blazing. Ryan received a welcome gift of a confirmed diagnosis of Tcell Lymphoma but we wont know the sub type will after the scans and biopsy. 
Dr C, haematologist said that Ry has a rare form of lymphoma to be found in a person so young, they have only ever seen it in older men generally and I don't know if that is good news or not, that he can fight it better being younger or if it will be harder to treat because they aren't used to seeing it in youngsters so won't have a standard treatment plan.