Skip to main content

Sepsis and Cancer


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 2016, with Radiotherapy (RT) due to start on Tuesday 4th. On Tuesday morning I spoke with the doctors as I was concerned that Ryan wasn't well enough after the op to start RT, but everyone assured me he was medically fit enough and the emotions he was displaying were nerves for the RT starting. It took 4 nurses and his youth worker two and a half hours to coax him through the first fraction as he was in so much distress. 

On Tuesday night he began vomiting and I rang the nurse at Velindre Cancer Centre on Wednesday morning concerned again that he wasn't well enough for RT. She said she would assess him when we arrived for our second session. By the time we got to her on Wednesday afternoon Ryan's temp had reached 40.2C and she red-flagged sepsis. All hell broke loose and Ryan had 12 medical professionals around his bedside at Velindre while they stabilised him and got an ambulance to transfer him to the Teenage Cancer Trust (TCT) unit in Cardiff. I cannot ever thank Velindre enough for acting so quickly and saving his life. 

We then spent 10 days in the TCT unit as Ry improved slowly. His CRP reached an impressive 332 on Thursday 6th October. His BP and Temp have finally stabilised although his Hb, Potassium and Creatinine are a little low. His Lymphocytes are almost non-existent but everything else bloods wise is all ok.

So in all, he only had 1 fraction of RT on Tuesday 4th October, with a ten-day break and he was then taken by ambulance over to Velindre and then brought back to TCT for his initial week of RT sessions while he continued to recover from the sepsis.

PEG Feeding

Another unplanned diversion as we just ride this latest bump through the ever-winding Lymphoma road and little did we know the complications and ultimately life-threatening situation the blasted PEG would place Ryan in, within a month of having it fitted.



Comments

  1. Anonymous21 November 2016 at 14:12

    Ryan has been through so much Sarah at such a young age. Life is unfair. Stay strong together and I am thinking of you all as he awaits the next round of treatment. Xx Paula

    ReplyDelete
  2. Anon22 November 2016 at 10:43

    I didn't know about the 2 1/2 hour struggle for RT(1). What an epic. It was great to have you explain the mnemonics - made it must more understandable. Clearly you have been reading - AND taking notes! Where do you find the time? It is just as well that being a parent comes without an instruction book - it would really put you off if you knew it beforehand. Love and support xxxxx.

    ReplyDelete
  3. Chris Curtis11 January 2017 at 11:23

    Great to see your Post and I will highlight it on our website www.theswallows.org.uk if you don't mind.

    Thank you for sharing x
    Chris Curtis, H&N Cancer Survivor 2017

    ReplyDelete
    Replies
    1. @SarahLou24 February 2017 at 21:00

      Thank you Chris. That will be an honour. I look forward to meeting wit you soon.

      Delete
  4. Aoife Brown24 February 2017 at 20:57

    Bless you all.. what a challenging journey for your family. I wish you all the best.

    ReplyDelete
    Replies
    1. @SarahLou24 February 2017 at 21:01

      Thank you Aoife. Ryan is making great progress, there are several newer posts sharing his progress. x

      Delete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the
11 comments
Read more

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c
5 comments
Read more

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t
6 comments
Read more

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We
Post a Comment
Read more

Cancer Survivor Story

Cancer Doesn’t End When Chemo Does Ryan finished his chemotherapy treatment on his brother's 18th birthday in May 2017. The last two years and eight months were a blur of stress. Yet coming to the end of treatment coincided perfectly with Cancer Survivors Day on the first Sunday in June, each year, so what better way to mark this day than with our own survivor story. Ryan's weight at diagnosis was a staggeringly poor 42kg. He had lost so much weight not being physically able to eat due to the tumour in his throat, but with thanks to his own determination and the feeding tube that he had. Ryan's weight as we start his final chemo cycle....drum roll....prepare yourselves.... was an amazing 57kg. A year on in 2018 and despite going through treatment for the second time after relapse. Ryan weighs an impressive 65kg. Chemotherapy Cycle six Started on Monday, 1 May 2017 for hydration and the week went well without any drama. His final chemo took place on Friday, 5 May wh
8 comments
Read more