Friday, 21 October 2016

Lymphoma Road

Lymphoma, Cancer diagnosis www.bellybuttonpanda.co.uk

Lymphoma Diagnosis

We received the gut-wrenching news that haematology consultants at Children's 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.

Up to this point Ryan had been ill for the preceding 2 years battling glandular fever that never improved and I battled with GPs to try and discover what was wrong. 

Sometimes you Choose the Battle quote, www.bellybuttonpanda.co.uk

The Battle Chooses You

There were still further tests that were needed, as a few of 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 NK/T-cell non-Hodgkin Lymphoma in September 2016. It is a bit of a mouthful literally as the lymphoma caused a soft tissue tumor to form in his throat.

Steroid Chemotherapy commenced while planning began ready for 5 weeks of intense Radiotherapy before embarking on six months of SMILE chemotherapy protocol.


Changing four seasons road trip

Glandular Fever

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 the 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 two years ago. 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 journeys.

Photograblog Lymphoma Road

6 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.

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    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

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  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.

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

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

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

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