There's a Panda in my Bellybutton

SMILE Chemotherapy We were originally given a tentative date of Monday 21 November to begin his first of six SMILE chemotherapy cycles, but the delay to Radiotherapy due to the peritonitis episode pushed that date back once again. One thing you have to accept with cancer is nothing going to plan, or to date. Not easy if you are a control freak like me. Each Chemo cycle will last 28 days. Day 1-4 will be in the Teenage Cancer Trust Unit (TCT), Cardiff. Days 5-28 will be either at home recovering or in Glangwili Hospital, Carmarthen for blood monitoring and chemo injections. I will put a full breakdown of the 5 drugs that SMILE stands for, how they are given and on which days onto a separate post here for anyone who is interested in that much detail.  Before chemotherapy could commence Ryan needed to have a Hickman Line fitted which meant operation number 7 on 1st December 2016. Most teenage and adult patients have a PICC line, but due to Ryan's malnutrition, the veins in his arms a

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h

Epstein Barr Virus EBV positive extra-nodal 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 extra-nodal in his tonsillar area at the back of his mouth in the oropharynx or Waldeyer's ring. Caused by the Epstein Barr Virus that is usually responsible for Glandular Fever.  I have shared my full story on several chat forums in the hope that there is someone with the same that I can connect with for support. Of course, I do not wish this on anyone, however, if there is someone else going through, or has been through the same I would like to connect with them. Thank you to everyone that has shared messages with me so far. I really appreciate the help and advice you have given me. I wish each and every one of you all the best with your own battles. Sepsis   Ryan had a percutaneous endoscopic gastrostomy ( PEG ) tube fitted on Monday 3rd October 201