COVID-19 pushed back several of Thomas' treatments

Months of worrying symptoms

I had been taking Thomas to the GP for months prior to his diagnosis as he had been struggling to breathe, particularly at night, and was complaining of pain in his knees and other joints. He was also tired all the time, barely eating, saying he felt sick constantly and he was always covered in bruises.

I kept taking him to the GP, but they put his symptoms down to other causes such as asthma, or they accused me of making up his issues and even causing the bruises myself. This was incredibly upsetting to deal with.

Thomas had been off school for a week in February 2019 as he had sickness and diarrhoea. One night I found that his body was covered in a rash that appeared from nowhere. I went to grab a glass and put it over the rash. It didn’t disappear. I instantly thought it was meningitis, panicked, called 111 and rushed to A&E.

Thomas with bunny

I told the doctor he was wrong. My child didn’t have cancer.

The hospital ran tests and we were moved on to the CAT unit overnight to wait for the results. The blood tests came back with an extremely high white blood count and very low platelets. They did an X-ray and he had a huge mass in his chest cavity that filled over 85% of it. This is why he couldn’t breathe at night.

Finally I had some answers. Certainly not the ones I expected or wanted to hear though. I broke down when the doctor came to tell me. I told him he was wrong. My child didn’t have cancer. He didn’t know what he was doing. I still feel guilty about that now, but I know he understood.

The treatment began immediately with more scans and high dose steroids. They couldn’t put his central line in under anaesthetic because of the mass, so they had to treat the mass first with extremely high dose steroids to clear it. Then the chemotherapy started. It made him feel very unwell very fast. He was isolated and in hospital for nearly two months.

Thomas sleeping in hospital

Thomas’ reaction to treatment

We have had a lot of ups and downs during treatment. The chemotherapy has destroyed Thomas’ fine motor skills and he’s in a wheelchair sometimes. He can’t write properly anymore or use a normal knife and fork. The chemo has also caused some disfiguration of his toes and he has extremely tight leg muscles which makes him walk on his toes.

He’s ended up in hospital with pneumonia and a few other times with other illnesses or complications. He’s found it very difficult, particularly having his port accessed, but he’s a little fighter. He’s currently got over 14 meters of beads from the Beads of Courage programme. He’s had countless blood and platelet transfusions and loads of tests and treatments.

Thomas has just over two years of treatment left to go.
September 2020

Delays in treatment due to COVID-19

Thomas is getting treatment but there has been delays most certainly in the past due to COVID-19. It pushed back his lumbar puncture and has stopped his two weekly visits and they are now monthly. He also had a huge problem when he was unwell and due to COVID-19, he was taken to the CAT unit instead of the oncology ward and they discharged him prematurely and he became seriously unwell with pneumonia and ended back in hospital. This was a little while ago but was during and because of COVID-19. He used to be seen fortnightly but is now monthly due to COVID-19.
January 2021

Thomas with beads 3

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