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.
So today is the day I feel I can finally say we have won the battle. Seth is in remission and it has been confirmed that he does not need any further chemo. I am excited to hear this news, Seth is excited, the rest of the family are excited. I will raise a glass of bubbles to my son tonight (once I get back from taking the girls swimming – bloody swimming!). He has made me so proud throughout this whole process. He is a very different boy to the one that was diagnosed, but he has shown himself to be resilient, courageous and above all one of the happiest people I know – nobody is ever going to keep him down for long!
But, I have to remember, it is only the battle that we have won. The war will go on. It won’t be until 5 years has passed that Seth is considered a survivor of Burkitt’s Lymphoma. The chance of relapse is highest in the first two years and for this reason we will have three monthly scans and check ups for 24 months. Relapse is a very awful prospect, the treatment is harsher, longer and the survival rates much more scary to consider. After 2 years he will be checked every 6 months and then after 5 years it will go to a yearly check which will continue until he is an adult. Maybe when he turns 18 I will consider the war won? I’ll let you know.
So, because there might be another battle for us, and because there will most certainly be battles for other families, some that might not be won, I want to make sure we keep on fundraising and raising awareness for all the charities that are doing so much amazing work for our children. Watch this space…
So, yesterday was ‘Results’ day. After over 3 weeks of waiting we had a meeting with Seth’s consultants to get the results of his PET scan and find out what next for Seth. I have gone through every emotion possible during the wait and I know Seth has too, so we were both looking forward to having some answers whether positive or not.
So, starting with the good news, Seth is officially in REMISSION! That means there is currently no cancer anywhere in his body. The slightly less good news is that there is not agreement amongst the specialists as to whether he needs more chemo. This is due to the very unusual way that Seth’s Lymphoma presented. So, we are still waiting. Seth’s consultant does not want to take any risks with him (and obviously neither do we), but they also do not want to administer chemo that is not required because of all the side effects now and in the future (to put this into perspective, he is unlikely to be infertile after the number of rounds he has had but his chances significantly increase with more rounds – a big decision to make about a 7 year olds future). So over the next few days they will be talking to a Dr that is heading up a European trial into the treatment for Burkitt’s to get a definitive answer. Best case is that he is finished. The worse case has now been reduced to a further two rounds of chemo.
Seth was initially upset that he wasn’t going to get the answer he wanted, but as ever he bounced back within minutes – he really does amaze me. He is pleased that it will only be two more rounds and he grilled his consultant on the drugs and also the stay in hospital and was very pleased it would only be four days for each round! So, we can all see an end now, but as of yet we don’t know if it will be May or July.
Tomorrow is a milestone day. Firstly I turn 42 and secondly and more importantly it will be 4 months since Seth was diagnosed. In some ways it has seemed like the longest 4 months ever – every 24 hours that he was in Intensive Care seemed to span a month at least – and yet it also seems to have flown by as we have lurched from one round of chemo to another, from one hospital test to the next. Birthdays always make me reflective and I have spent a lot of this week looking back on the last 4 months. Then today I was on Piam Brown ward for the morning with Seth and there was a new family there with a little girl just a bit older then Seth, they looked just like we did on our first visit in January – unable to believe their child could have Cancer and scared of how they would deal with it if that was the case. I wanted to talk to the Mum and reassure her, but I also didn’t want to intrude on such a difficult family time. They were watching Seth joke with the nurses and sit and do some school work with the teachers and be his normal pickly self and I hoped it gave them some comfort that life goes on even after this awful diagnosis. A very wise lady said to me on my first few days on the Piam Brown Ward that Piam Brown is a club you never want to join but once you are in it is full of lovely people all fighting the same battle. So, incase anyone reading this is ever in the position of having that awful diagnosis, here is my advice for Mum who has just been told their child has Cancer.
1. Believe in your own strength. There is a lot of truth in the words ‘what doesn’t kill you makes you stronger’. Believe that you will be able to cope with whatever life throws at you, because you will. When you feel that your heart has been ripped out and the pain is unbearable you will find strength that you did not know you had. And, in the end, you will come out of this experience a stronger person. Just keep believing in yourself.
2. Understand that everyone deals with hard situations in their own way and that is okay. I have had to learn to let my family deal with this in their own ways and accept that however they are dealing with it is right for them and does not lessen their pain. I spent the first few weeks resenting Ivan’s coping mechanisms, his calmness in the face of awful situations, but I know now that was what he needed to do to make it through this journey and I did what I needed to do. Neither of us felt any less pain or worried any less but we had to deal with it in our own way.
3. Take up every offer of help you get. Let people help in any practical way they can. Let them cook you meals to put in the freezer. Let them look after your other children. Take them up on offers to walk the dog. Don’t worry that you will never be able to repay them, they don’t want you to, they feel helpless and they just want to feel useful.
4. Remember that how you deal with stressful situations will dictate how your child deals with them too. Try to stay positive and brave even when you don’t feel it, it will help them do the same and ultimately will make their time in hospital easier for them to deal with
5. Don’t create a monster. It is very easy to let a child that has been diagnosed with Cancer get away with murder. But, when the time in hospital finishes they have to slot back into your family and into normal routines, therefore continuing to treat them as normally as possible is really important.
6. Look after yourself too. Eating toast and drinking coffee will only get you so far. Try to remember to eat well and get some fresh air each day. Take up your friends offers to come and sit with your child so you can get outside even if it is only for 10 minutes, you will always feel stronger for it (see point 4!).
And lastly 7. This will change you forever. You will not be the same person after diagnosis, halfway through treatment or when chemo is over. In some ways, it will be for the better but in other ways you will miss the old you.
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.
One day I will count how many times I have used the word ‘waiting’ on this blog. I know it is a lot.
As of today we are still waiting on PET Scan results, we are still in limbo, the weekend stretches out in front of me without answers. To quote a wise 7 year old boy – ‘I need to know the results Mum, I can’t move on until I know the result so I am just stuck’.
Today Seth was invited to judge at Charity Bake Off at Old Mutual in Southampton. A team of my lovely ex colleagues had set out to raise money for Piam Brown by organizing a Bake Off that spanned over a number of weeks, and today was the grand final. Seth had decided the theme for the final should be Lego and was very much looking forward to what everyone had come up with. He was not disappointed, all the entries were very creative, there was even one styled on the double decker sofa from the Lego Movie! Seth had to taste them all and rate them on look, taste and texture. His appetite is still not huge so after cake number five I had take over on the judging, but I think I did an ok job. Tess, unsurprisingly, managed to taste all of the cakes! Most importantly it was a hugely successful fund raiser, at the last count they have raised over £2500 for a very good cause.
This weekend was a Cancer free weekend, for me at least, and selfishly it felt really good. I was marooned (well not quite) on Brownsea Island with 19 Brownies and 4 other Leaders for our pack holiday. Forty-eight hours away from home and away from the worries of having a child with cancer. If I had been doing anything else then I would have spent the whole weekend worrying about Seth and phoning Ivan to see how he was, but the great thing about Brownie holidays is how all consuming they are. From the moment you take charge of 18 girls (1 of them was already mine!) and are trusted to look after them to the moment you hand them back you don’t have time to think of anything else. We walked, climbed tress, spotted red squirrels, played on the beach, played in the sea, skimmed stones, orienteered, built dens and sang songs constantly. They didn’t sleep much, so I didn’t sleep much, but it was still a great break. Tonight I feel exhausted, happy and of course very pleased to be back home to catch up on cuddles and tales of the weekends activities with the four that remained at home.
So, today was the day of the PET scan. I think Seth is working on getting a full set of scans completed during his treatment. He has had an ultrasound, several x-rays, 2 CTs, 3 MRIs, 2 Bone Scans, so today’s PET scan must complete the set?! Anyway, the reason for the scan is to hopefully tell us once and for all what is going on in the bones in his back and whether he needs further Chemo. Initially we were going to have to go to London for the scan as, although it is being done of the NHS, PET scans are actually outsourced (?!) to a private company and their policy is that anyone under eight has to be scanned under General Anaesthetic and therefore has to go to London for the procedure! Luckily Seth’s consultant was very persuasive and when she pointed out the long list of scans that he has had previously, whilst being wide awake, they relented.
First stop of the day was the Childrens Assessment Unit for a cannula to be put in. A tricky start, as it took 4 attempts to get one in and Seth was grumpy and feeling like a pin cushion by the time we left. He had cheered up though by the time we arrived in Nuclear Medicine and was very chatty with the lovely nurse that was looking after him. She explained to him what was going to happen before and during the scan and then they injected the radioactive dye into him. We had to wait an hour for the dye to take effect so we caught up on some Harry Potter (we are now on the final book – not sure what we are going to do when we finish!).
The scan was fairly straight forward, only 18 minutes compared to over an hour for an MRI, and he was beautifully still for the whole scan. As we left they spoke to us about the fact he was radioactive and would be for the next 8 hours so he needed to avoid close contact with other people. The walk out the hospital was interesting, every time someone came near him he ran away. When we got home he put himself into isolation in our room (his thinking being that he had a TV and toilet and didn’t need anything else!) and told no one to come in.
Now we are waiting again, results should be about a week….
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.
I have become very accustomed to bad news over the last few months, especially arounds Seth’s diagnosis and treatment, so, it is especially nice to get unexpected good news. Today I was awaiting the results from blood tests he had yesterday. I was expecting him to be neutropenic (he was at this stage on his last cycle) and in need of a blood transfusion. I had convinced myself that if he was neutropenic we would be spending all weekend in QA fighting another infection rather than at home with the family having fun.
So, when the phone call came from QA I braced myself, and as the lovely nurse on the other end read out the results I was sure I misheard her. I asked her to repeat them, they still sounded good. “Can I just double check these are yesterdays results?” I asked. She confirmed they were. I put the phone down and let out a massive whoop, Ivan thought I had gone mad. His bloods are good. Neutropenia can do one. We are going to have a good weekend…..now I am touching lots of wood and hoping I have not spoken too soon!
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!
It guess it is an obvious statement, but when one member of your family is diagnosed with Cancer it is like the whole family has been diagnosed with Cancer. The challenges are different for each family member but they are very real. Living with cancer becomes the new normal for everyone and you forget what normal actually looks like. You don’t even realise it is happening. Then something really simple happens and it brings home to you how ‘not normal’ life has become. This morning it was Tess. She was playing Doctors and she simply walked up to Seth with a plastic syringe and said to him ‘time to take your bloods Seth, we have to see if you are well enough to go out’. In those few seconds it made me think about what Tess has had to deal with over the last four months. Weeks and weeks with me barely at home, weekends spent in the hospital, endless hospital appointments to attend and blood tests to witness. For her this is normal, I hope for her sake (and for the other three) we can get some real normality back soon.