This has been an incredibly long journey for Seth and also for us. It’s not over yet but hopefully the worst is well behind us. We really could not have made it through this ordeal without the vast network of family, friends and colleagues who helped us along the way.
The list is too long and varied to thank everybody individually, and the names probably won’t mean anything to those who might read this blog in the future and are going through a similar situation. What will hopefully resonate are the acts of kindness and offers of help without which I have no idea how we would have made it through. So, to all of the below, from Seth and from us THANK YOU. (You know who you are).
We are so grateful and thankful to those who:
Looked after our children
Walked and fed the dog
Stayed overnight to help with early mornings
Ferried children to swimming lessons and other clubs
Visited Seth in hospital
Visited us in hospital
Created this blog site
Covered at work for us
Brought us many homemade meals
Understood and made allowances for what we as a family were going through
Texted/phoned and emailed support
Showed flexibility in arrangements and working hours
Bought Seth presents
Bought the other children presents
Offered their help even though we didn’t take you up on it (the offer is still appreciated)
Organised money making events
Prayed for us
Were there for us all
Seth is doing amazingly. He’s put all of this behind him and is getting on with life, the way he should.
I heard the following words, they were written by Stephen King. I think this sums up our journey:
We did not ask for this room or this music; we were invited in. Therefore, because the dark surrounds us, Let us turn our faces toward the light. Let us endure hardship to be grateful for plenty. We have been given pain to be astounded by joy. We have been given life to deny death. We did not ask for this room or this music. But because we are here, let us dance.
Portofelice Camping Village, Eraclea Mare, nr Venice, Italy (yes, we made it on holiday!!!)
So, it’s been 10 days now since we had the fantastic news that not only is Seth in remission but that he also doesn’t require any more Chemo (something that that has always been up in the air since his first MRI).
It really is fantastic news. So why do I feel so flat? I get why I felt flat once the initial elation wore off. We had both being preparing for the worst and had tried to build ourselves up to be strong enough to cope – so much so that we were just exhausted afterwards. Not quite the celebration we might have expected or hoped. Moving forwards just feels surreal.
Today we have the date for Seth’s central line to be removed. Yet more good news. It will be removed well in advance of going on holiday. Which really is brilliant news. Yet still I’m not feeling this is over. I’m still not feeling relief. Perhaps when it is actually out I might feel that?
I’m not so sure.
Tonight whilst watching the eldest swim, I’ve been mulling this over. It’s bothered me. I’ve come to the conclusion that the feelings I am hoping for won’t come. At least not from results, not from a line being removed. The reality is that this won’t ever really be over. In 5 years time, if still clear, Seth will be a ‘survivor’ but the tests will continue.
I think I understand now.
I’m looking in the wrong place. I need to look at Seth. I need to look at the 7 year old boy who is getting his life back. I need to look at his love of life. I need to appreciate him. I need to take joy in the fact that he has got through this and coped with more than any 7 year old should have to.
If he can do this, if he can live his life to the fullest like he always has, if he’s ok, if he’s happy, if he is well. Then what else can I ask for?
Seth is the celebration. Seth is the Happy that I’ve been looking for.
Tuesday January 26th 2016 Today Seth has the central line fitted. I rush home from work to come in and see him. I know he was late going in for the operation. I know that he has been a while. I know his was out later than expected. When I get to his room, a friend who was visiting Em meets me. She looks shaken. There is also a nurse. The nurse explains to me that there were complications due to Seth’s airway being compromised. I’m taken down to PICU (Paediatric Intensive Care Unit) where Em is. What happened has already been covered in a previous blog so I won’t repeat it.
Seth is a mess. I see hair, tubes, wires, bruises, machines, and lights. I take myself to a calm place. It’s too much to take in. Damned if that stupid Athlete song doesn’t enter my head and stay there for a week…
You got wires, going in’
You got wires, comin’ out of your skin
There’s dry blood on your wrist
Your dry blood on my fingertip
I have to be strong. I need to be strong.
February 2nd 2016
He’s back in the room. Thank goodness the endless of hours sat watching a sedated (though rarely still) Seth are over. He’s been extubated and is no longer sedated. He has lost two front teeth. One was wobbly but the other wasn’t. Guess it wasn’t all that easy taking the tube out.
I call him ‘gap-y’, which replaced the very brief ‘Throat Pack’ – a name which has now been adopted by the toy elephant he was given in PICU.
February 4th 2016
Something is not right. Seth is no longer in the room. There is somebody here but it’s not Seth.
February 5th 2016
An MRI and EEG show that he has slow responding brain patterns. We don’t know if this is just temporary or more permanent.
February 6th 2016
There are moments when Seth is here. I’ve worked out that it’s related to the oral morphine he is taking for pain. (He had so much sedation to keep him under whilst intubated that there are withdrawal concerns and he is being weaned off it.) Within half an hour of taking it he is stoned. Helter Skelter – off his face. Fortunately a doctor sees him before and after.
February 9th 2016
Seth is finally back. We’re not sure exactly what caused the temporary brain damage but he’s back!
I haven’t been jokey or called Seth any names recently.
February 14th 2016
Yesterday afternoon for no apparent reason Seth’s hair started to fall out. Suddenly there was loads of it on his pillow. It’s the weirdest thing. There was nothing in the morning. It just started in the afternoon. It’s coming out in clumps. I talk to him about perhaps shaving his head – or at least trimming his hair. He is not keen. This morning it’s just falling into his face. After about the 3rd mouthful of hair he asked me to do it.
It’s odd. Throughout all of this treatment, although I’ve known it’s cancer and although he has had two rounds of Chemo and in spite of all he problems he has had…taking the clippers to his hair is the one thing that really brings home to me that he really, really, really has cancer.
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.
We were invited by Piam Brown to a day out sponsored by Wessex Cancer Trust and the Fire Service Preservation Group along with a number of other PB families. Seth had only finished his Chemo two days before and was still feeling the effects. We debated not attending but he was very keen – almost as keen as Evie who surprised us all by proclaiming that a ride on a fire engine would be SO cool (not what we expected from an 11 year old!). Take a look at the awe on her face in the video!
Meeting at a very cold and windy St. Marys Stadium we were taken by vintage fire engine – Seth selected the oldest one there – to Paulton’s Park to spend a few hours. We all set off together in a convoy of engines. Southampton’s wonderful traffic light system systematically destroyed the convoy whenever it could but once out of the city centre we all paused to allow the convey to regroup.
Seth, not at his best, was really feeling the cold. Which if you know Seth at all you will know is unheard of. This is the boy who wears shorts all year round – even to school! He struggled to get warm and despite loving the trip in the fire engine wasn’t really up for a cold and windy Paulton’s Park. It’s times like this when I realise just how much the Chemo takes out of him and just how weak this whole process has made him. He spent most of the time wearing my hoody on top of his clothes and cuddling into me for warmth – even when inside.
We returned to the fire engines after a few hours and were taken to Romsey Fire Station for a tea party with entertainment.
Although Seth didn’t enjoy the day out as much as he could have, it was an amazing event to be a part of and seeing his face light up whilst in the engine made it worthwhile.
Thanks to Piam Brown Charity Coordinator Rachel Funnel, Wessex Cancer Trust and the Fire Service Preservation Group for a brilliant experience!