I’m not good at public feelings. I’m not good at publicly expressing them. I’m not good at letting people know how I feel. For these reasons, as much as I may have wanted to contribute to this blog, I’ve held back. I’m posting this now as somebody may read this and they may relate to aspects of it and ultimately it might help. I hope it does even if only in a small way.
Monday January 4th 2016
New Year. First day back at work, Seth’s first day back at school. I get a text from Emma after school with a picture of Seth with a lump on his neck. A lump that wasn’t there the day before. CANCER is my immediate thought. Well that’s what lumps are right? That’s what you always hear? I’m reassured as after he has seen the nurse at the surgery we’re told he has tonsillitis. His tonsil is inflamed. The lump is likely his lymph gland doing its job. He is prescribed antibiotics.
I joke. I name him “Lumpy”. That’s what I do when faced with situations like this. Situations I can’t control. Frightening situations. I joke. I make light of the situation.
Thursday January 7th 2016
We ask Grandad to take Seth to the doctors as the lump is still there and his tonsil has not gone down. If anything it looks worse. The decision is made to give the antibiotic a few more days to work.
Seth is snoring really badly at night. He is beginning to struggle to breathe at night. I name him “Snore-y”
Sunday 10th January 2016
Seth’s throat and tonsil look awful. The lump is still there. I take him to the Gosport War Memorial Minor Injuries Unit. The doctor looks in his throat and immediately says that he needs to go to QA Hospital to the Child Assessment Unit. He says he thinks he might have an abscess on his tonsil and that it may need to be drained.
I believe that this doctor, whilst his diagnosis was wrong, probably saved Seth’s life. He could see that it was something serious and referred him.
He was admitted straight away. He had the first of many blood tests and cannulas fitted. He was put on IV antibiotics.
All things considered Seth was in remarkably good spirits, though clearly getting a little scared.
Seth spend the next four days in hospital. Once it was clear the IV antibiotics were making no difference, the decision was made to refer him to Southampton and the Children’s Oncology Ward, Piam Brown for a biopsy.
Thursday 14th January
Seth has a biopsy. I name him “Scar-ey”. “Lumpy, Snore-y, Scar-ey”. It doesn’t seem funny anymore
As Emma has already blogged, then began the wait.
Thursday 21st January
We were told on Wednesday 20th that his results would be delayed until the following week. We still had a poorly boy who was not getting any better. I took him back to the Child Assessment Unit as we needed to do something and he needed to be treated. This was the first time that I met the oncology doctors and nurse (Wilf) at QA. On our behalf they contacted Southampton and pushed to get some kind of answer. We were told to go back to Piam Brown on the Friday for the results, but it was clear at this point that the biopsy showed cancer and that we needed to prepare for it. For me this was confirmation of what I had already thought. What I had feared. I had to get Em to come to the hospital under false pretences as I couldn’t tell her on the phone.
I cried. We cried. Though not in front of Seth. I called him “My brave boy”. I didn’t joke.
Friday 22nd January
Diagnosis – Lymphoma. Burkitt’s Lymphoma. An aggressive form of cancer. With an aggressive treatment. BUT – with a good prognosis.
Saturday 23rd January
I have to take Seth to Piam Brown two days early. Yesterday his airway was 50% compromised. Today it is over 75%. He is started on his treatment immediately and Steroids to reduce the size of the lump.
On the way in I have a very frank conversation with Seth about what is wrong, what it means and what Chemotherapy is, what it will do to him and why it needs to happen. He takes it all in. He understands. He asks questions. He gets it. He’s only 7. He shouldn’t understand. He shouldn’t get it. He shouldn’t need to know.
Sunday 24th January
The only plus in all of this is that I’ve got to spend a lot more time with Seth. He has amazed me with how much he has already been through and given how unsettling and upsetting this must be for him he is copying amazingly. He is taking everything in his stride (except for having plasters removed!). My heart bursts with pride and love for him.