There's a Panda in my Bellybutton

Adrenal Insufficiency Ryan's lymphoma is being driven by the Epstein-Barr Virus (EBV) which causes glandular fever. The EBV invaded his T-cells whilst he had Glandular Fever and turned them cancerous causing dysplastic lymph cells to grow in his throat resulting in a soft tissue tumour forming. The good news at the start of chemotherapy cycle 4 was that his EBV plasma readings had come back as zero for the second month, which tells us that no more cancerous cells are being made in his bone marrow.  There are still EBV cells in his blood so hopefully, this cycle and next 2 cycles will finish killing off the cancer cells that are still in his blood. Ry will be given remission status when the EBV plasma has been zero for 6 months and still faces at least two years of maintenance ahead after the six chemo cycles have finished.  The week of SMILE chemotherapy went well although he had some impressive fluid retention on day 4. This can be a sign that the kidneys are not working as well 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

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 see that

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