Skip to main content

Chemotherapy Cycle 4



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 as they should be, so he has had some extra tests to make sure everything is working as it should be. 

We had only been home for 2 days when Ryan went routinely to the toilet and I heard him swear from downstairs. I ran up to him and he asked me if it was ok that his pee was dark green. 

Please do not judge me when my first response was to giggle before I then reached for my phone to text his oncology nurse. It is another sign of kidneys being a bit tired and we were advised to ensure he drinks plenty to wake them up a bit. 

Things took a bit of a turn though a week after getting home, when Ry developed an infection which unfortunately hospitalised him as he didn't have enough immunity to fight it without a bit of help. 

What we expected to be the usual standard 48 hours of IV antibiotics turned into an ambulance transfer to Teenage Cancer Trust unit at Cardiff hospital for a 10-day course of IV antibiotics and an unfunny time with non-diabetic hypoglycaemia that no one was initially able to work out why. 

After numerous tests and several days on a glucose drip Ryan was diagnosed with steroid-induced Adrenal Insufficiency, I was given training on how to treat the new addition to Ryan's health list and we were finally allowed to go home after a 13 day stay, for a weekend break before chemotherapy cycle 5 and the onslaught begins all over again. 





Comments

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

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

3 Years in Remission

  3 Years in Remission In May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here . In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done to confirm he is once again in remission. This is, of course, outstanding news but we were muted in any celebrations as it was such early days and we had been here once before. Ryan has been having regular check-ups every 3 months and in May 2021 we were able to confirm he has reached the 9-month milestone which was phenomenal news. Massive Scare - Relapse #3, ALMOST. Tuesday 4 October 2022. Ryan mentioned to me about an Ulcer on the roof of his mouth. I took photos and monitored for a couple of weeks before we start to panic too much.😳 Thursday 27 October 2022. Sadly Ryan has had to have yet a

Swansea Community Farm

Swansea Community Farm In April 2021 Ryan began volunteering at Swansea Community Farm (Welsh - Fferm Gymunedol Abertawe). For now, he attends one day a week on a Tuesday from 10 am to 4 pm but there is a possibility that he could also volunteer on Thursdays as well also 10 am to 4 pm. About the Farm Swansea Community Farm is the only city farm in Wales set in 3.5 acres of land with a variety of animals, an allotment, wildlife habitats, beehives and a café. The animals include donkeys, goats, sheep, ducks, geese and chickens. The farm aims to improve wellbeing, build skills and create a sense of community engagement by caring for the animals, producing local food and caring for the local environment. Duties Ryan has enjoyed a variety of different duties so far. He has walked the Donkeys, Sheep and Geese from their barns out to their fields and pond. Collected eggs from the Chickens, and has mucked out the donkey sheds. He has also cleaned out the chicken coops, cleaned and refilled all

Photograblog

By Ryan I like photos. Well the detail and how realistic you can get them. Instead of going out and looking at them yourself you can easily just find them, but doing photography you do that yourself. In a good picture I look for detail and how good it looks, which comes under detail actually, lighting, depth, what’s in the background, what’s the main focus of the picture that type of stuff. Possibly my autism has helped me to see the detail in making a good photograph. I looked at it a bit more. I can see deeper into the picture. I get the meaning of it. I can see why somebody took it either for the beauty of it or just for fun maybe. With my photography I am not having to interact with people or do the social thing that I find difficult. It’s a project I can do by myself in my own time.  My photos don’t involve people. I prefer wildlife and landscape photography instead. I don’t take photos of animals even though I like them because well fi