Lymphoma Road

  • Malnutrition

    FormerMember
    FormerMember

    To coincide with national Nutrition and Hydration week, I thought it would good to share with you Ryan’s experience of malnutrition as a result of his lymphoma diagnosis.

    Malnutrition is a common problem among patients with cancer, affecting up to 85% of patients with certain cancers. In severe cases, malnutrition can progress to cachexia, a specific form of malnutrition characterised by loss of lean body mass…
  • Head and Neck Cancer

    FormerMember
    FormerMember
    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 extranodal in his tonsillar area at the back of his mouth in the oropharynx or Waldeyer's ring.

    I have shared my full story on several chat forms in the hope that there is someone…
  • Biopsy #1

    FormerMember
    FormerMember
    Monday 18 July 2016 saw another full day at the Hospital children's ward. My gorgeous boy had an ENT appointment on the Monday morning to have an endoscopy. The image was amazingly clear and showed a large mass, covering the base of tongue, left tonsil area and soft pallete area. By 2pm that afternoon he had an MRI scan done and was booked in for an emergency 2 hour Biopsy operation the following morning of Tuesday 19th…
  • Paediatrican appointment

    FormerMember
    FormerMember

    We went back to see the Paediatrican on 13 July 2016 to discuss the blood tests that were done the previous month. Ryan's hemoglobin was low. ESR 33 and CRP had come down slightly to 25. Unfortunately he had lost more weight so the decision was made to admit him to the children's ward straight away. 

    The plan was to carry out an MRI scan and ultrasound as well as more blood tests. A 24 hour urine screen and temperature…
  • Diagnosis

    FormerMember
    FormerMember

    26 August 2016, we received the gut-wrenching news that haematology consultants at University Hospital of Wales, Cardiff believed Ryan had a very rare form of Lymphoma, known only to Asian and Latin American populations of men over the age of 50. 

    There were still further tests needed as a few experts were baffled to see this cancer in a 14 year old Western European Caucasian boy. We were given the confirmation diagnosis…