There's a Panda in my Bellybutton

While Ryan was going through his radiotherapy treatment he asked about having some fish again. When I say again we used to have a fish tank back in 2010, but when House met Van the fish , unfortunately, did not survive the ordeal. Ry sold the idea to me as a therapy to help him relax while recovering at home and the tank light would act as a night light for him also. Corydora catfish His birthday is in November, so the timing of his suggestion made perfect sense and solved the annual ‘what to get’ dilemma. Once his radiotherapy finished the week after his 15th birthday we took Ryan shopping to purchase a new tank to set up and cycle before adding any fish as we chose to go for a basic tropical fish set up with the plan to house some tetra and corydoras catfish. Neon tetra Ryan’s tank is doing really well. The fish seem happy enough and we now have guppies that breed often, so we must be doing something right. Ryan feeds them every day, and I initially did all the cl...

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...

A very surreal day was had on Thursday 22 September 2016, when Ryan spent a day at Velindre Cancer Centre, Cardiff in their Mould Room where he had his personal mask made for his impending 5-week course of radiotherapy (RT). Ryan then had to endure another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. One session every day Monday to Friday for 5 weeks on lymph tissue in his tonsil and throat areas.  Side effects will be his ability to swallow. Loss of taste buds. Salivary glands dry up, sickness and extreme fatigue, all of which will begin around 2 weeks into the treatment and last for 3-6 weeks after treatment has finished.  He is also having RT first and then Chemotherapy which I understand is usually the other way around so not clear on why the change is happening. I believe it is because he is not well enough to begin IV chemo and has been on steroid chemo up to now in an attempt to build him up a bit, but I do not...

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...

Lymphoma Diagnosis August 2016 we received the gut-wrenching news that haematology consultants at Children's Hospital of Wales, Cardiff believed Ryan aged 14 had a rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50. Up to this point Ryan had been ill for much of the preceding 2 years battling glandular fever that never improved and I battled with GPs to try and discover what was wrong.  Sometimes The Battle Chooses You There were still further tests that were needed, as the experts were baffled to see this cancer in a 14-year-old Western European Caucasian boy. We were given the confirmation diagnosis of EBV positive extra nodal NK/T-cell non-Hodgkin Lymphoma Stage 1, in September 2016. It is a bit of a mouthful literally as the lymphoma caused a soft tissue tumour to form in his throat. Steroid Chemotherapy commenced while planning began ready for 5 weeks of intense Radiotherapy before embarking on a six-month regime of SMI...