Inspiring Stories Of 2016: We Didn't See It Coming...

20/12/2016 08:04 | Updated 20 December 2016

Sam was diagnosed with stage IVb Hodgkin Lymphoma in November 2015. We didn't see it coming.

For the month prior to his diagnosis Sam had complained of intermittent stomach ache (usually coinciding with something he didn't want to do) and tiredness which was easily explained by dark nights and early mornings. The real worry came on Halloween when a short while after Sam had gone to bed he developed a high temperature and when we checked on him ten minutes later we found him very cold and drenched in sweat. It was then that we started to really worry and the following day we took him to the out of hours GP who referred him straight to Pediatrics at our local hospital. He had an enlarged spleen and was anemic. The doctors told us that they were considering Leukaemia as a cause to his symptoms but would need more investigation.

jo priston

Over the next few days and many discussions with the Children's Oncology and Hematology doctors at Leeds it was decided that Sam would be transferred for further investigation. Within a few days we got Sam's cancer diagnosis and a plan for his treatment. We were given a 90% chance of good prognosis. He had his Portacath inserted (his wiggle) and then we were finally allowed to go home. The plan was for six cycles of chemotherapy, each cycle lasting a month and then for radiotherapy.

The chemo was a struggle as it was difficult getting Sam to understand the importance of taking certain medications but he soon learned that the anti-sickness was really important after he refused it and was very sick. The main side effect of the chemo was the toll it took on his immune system meaning that within a few days of completing his first chemo cycle he was admitted to hospital with neutropenic sepsis and was given intravenous antibiotics and a blood transfusion.

One of our main worries was how Sam would cope with hair loss but he proved to be a lot braver than we imagined and would give us handfuls of hair and say that he always wondered what it would be like to have no hair.

jo priston

Fortunately with the way the chemotherapy cycles worked Sam had a break over Christmas where we could just enjoy some family time together. Unfortunately, our much looked forward to Christmas dinner ended up in the bin as the oven decided to break down half way through cooking. We did have a lovely takeaway pizza instead! I don't think either of us could help wondering if this was to be our last Christmas together with Sam. Sam began to feel unwell on New Year's Eve and we saw 2016 in all together at Leeds General Infirmary- again needing antibiotics and a blood transfusion.

After the first 2 cycles of chemotherapy the plan was to have another PET scan to see his response to the treatment so far. It seemed a long wait for those results but we were thrilled to find out that he had had an excellent response with the PET scan being normal and would no longer need radiotherapy after the chemotherapy had finished It was a real turning point as the next 4 cycles of chemo went past with no further hospital admissions and Sam being relatively well.

Sam finally started to get introduced back into school- he initially found it difficult due to the changes to his appearance due to the weight he had put on from all the steroids. Children kept telling him he didn't look like himself anymore which really upset him. He quickly lost this weight when he finished the steroids but has had so many episodes of tonsillitis and urine infections as his immune system is trying to return to normal.

jo priston

Now he is much more back to his normal cheeky self and is on the countdown to Christmas. He is the first up in the morning for his advent calendar whereas last year he would sleep a lot and couldn't face eating chocolate. We are looking forward to a day together without having to worry about the battle of getting him to take his medications, having to cool boil all of his water, constant hand washing and smelling of alcohol hand gels, checking his temperature every time he says he doesn't feel too well and making sure the food he is eating doesn't appear in the list of foods he isn't allowed. We do think about the other families we have met along the way who are still having treatment. We feel incredibly lucky.


Jo and Sam are supporting Cancer Research UK's Right Now campaign to beat cancer sooner. Cancer is happening right now, and you can do something to help right now. Visit cruk.org

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