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NK/T-cell Lymphoma

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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 SMILE chemotherapy protocol.

Glandular Fever

Ryan was first diagnosed with Glandular Fever in February 2015 aged 13 years old. He missed a large chunk of the Spring term as a result but went back to school after the Easter break. Unfortunately the illness hadn't completely cleared and hit with a vengeance once again during June of that year, resulting in Ryan only attending school for a total of 5 days during the rest of the school year, summer term. He was so incredibly poorly, he certainly never does things by half. I don't know if his appallingly weak immune system has any link to the fact that he is Autistic. Maybe that could be a discussion topic, as I would be very interested in hearing other people's experiences and views on the matter.  

Considering the amount of time Ryan has missed from school this academic year he managed to achieve an excellent set of exam results and report. I think he just about managed to hold himself together to get through his exams as it was the following week that he then became ill again. Coincidence? He achieved 2 As, 5 Bs, and 4 Cs. This is outstanding for a boy that missed nearly three years of primary education, was expelled and then needed to attend part time as a result of moving to a new school. 

I know that the effort has come from Ryan maturing and settling in well at secondary school, but I also know that he has received phenomenal support from the school, especially his TA and HLTA (Teaching assistant and Higher level teaching assistant). They have both been rocks of support to Ryan and myself. 

Ryan's medical team consists of haematologists, pathologists, histologists, immunologists and endocrinologists, who all agree that Ryan's episode of Glandular Fever in 2015 set off a chain reaction of the Epstein-Barr virus invading his T-cells ultimately causing cancer. The children's hospital in Wales have never used the SMILE Chemotherapy protocol before.

Only one other adult is known to have had NK/T-cell in Wales approximately ten years ago and I have found only one other adult male in England that battled the same diagnosis in 2013/14. I have searched the world to try and find another child that had gone through this same treatment, but have yet to find another. As much as I do not want any other child to have suffered this, I cannot believe that Ryan really is that unique.

Lymphoma Road

Over the next few posts, I will tell you the story of how we came to this fretful day and diagnosis. Join us on our very bumpy trip down Lymphoma Road. I hope you stay with us, share our story and hopefully help others on their own cancer journey.




Photograblog Lymphoma Road

Comments

  1. Goodness, what a scary time for you and your family. I hope that the medical team can support you all on this journey and that the future gets brighter. Thoughts are with you all and prayers/good vibes (take your pick) towards a recovery.

    ReplyDelete
    Replies
    1. So sorry for not responding sooner TM, you comment ended in my spam folder for some reason. It certainly has been a tough year, but thank you for your lovely message. Things are definitely looking a lot brighter. MS x

      Delete
  2. Best analysis of the medicals behind Ryan's problem that I've seen. I've several times been asked what precisely are the problem and prognosis. I now appreciate all the research reading you have done.

    ReplyDelete
    Replies
    1. Thank you for your kind words. There is a saying a worried mother does better investigation than the FBI.

      Delete
  3. This is such bad news. I'm sorry to hear it! x

    ReplyDelete
    Replies
    1. Thank you John. He is making steady progress. He is a stubborn fighter.

      Delete

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