Guest Blog: A Year to Remember

I have been asked to write this blog as a guest blogger for the latest guest blog series. I have only known Emily and her family via twitter where I can be found as @curlyman66. I usually tweet about education, politics (I believe there is such a thing as society) and random stuff that amuses me. Emily’s story is important to me as it is so very similar to that of my son Adam as can be seen below. In my normal life I teach science in a Liverpool Girls’ school and I can honestly say I have never come across two such outstanding young people as Emily and Adam, and without twitter we wouldn’t have heard of anyone with the same diagnosis to Adam.

 

2014 a year to remember or forget?

Last day of the Christmas term 2013 we finish early at midday. For once I could get home before my children. I decide against Christmas shopping and go straight home. Almost as I walk through the door my phone rings, “Dad.. can you pick me up from school? I’m not well, I’ve had to come out of assembly with back ache”. Thus began the chain of events that led to the single most generous act my family have ever received.

After a New Year’s Eve operation for appendicitis that straddled the years and a speculative diagnosis for a disease that would have been terminal we received a firm diagnosis on 6th January…. Burkitt’s lymphoma, a rare form of blood cancer. In some ways this was a relief, Burkitt’s is a very treatable cancer that responds well to drugs (chemotherapy). After a quick trip home, to play on the PS3 with his brothers, we transferred hospitals to Alder Hey where we met our Oncologist, James. A very reassuring man indeed. He told us that after a standard treatment plan he expected the cancer to be gone in four months.

Four months later (lots went on in that time!) a PET scan revealed that the cancer was clear!! Normal life could resume, Adam attended school again part time, sat his GCSE’s (4A*, 2A, 2B, 1C) and we planned a holiday to Scotland. Early July, after a bit of discomfort, we attended a routine appointment with James… It’s back.

Totally devastated we all face up to the reality that this is now seriously life threatening. The treatment is to send the cancer into remission again with chemotherapy. After some more rounds of chemotherapy we are told that once again Adam’s cancer is in remission, or rather partial remission, the PET scan still shows a very small amount of activity in one area. We are reassured to hear that the conditioning treatment for the stem cell donation will almost certainly finish off that last bit of disease.

We now need a donor stem cell transplant. If not from one of the immediate family, we are reliant upon somebody, somewhere, who has agreed to be a stem cell donor, being a match for Adam. The family members are each tested, and none of us is a match. We are now reliant on a total stranger.

Lots of thoughts go on, why isn’t everyone on the donor register, why wasn’t I? The initial search draws a blank in the UK, but fantastically we hear that there are three potential donors in the USA and the best match has agreed to be a donor for Adam. Let’s get this straight, a total stranger has agreed to save my son’s life… I am overwhelmed by this.

Stem cell transplant involves killing off Adam’s ability to produce his own blood cells and then giving him someone else’s that will graft into his body and do the job instead. The killing off process involves very high dose chemotherapy and also total body irradiation…..heavy stuff but necessary. The best analogy is if your computer is riddled with viruses you might wipe the hard drive clean and reinstall the operating system. In this case the analogue for the hard drive is Adam’s bone marrow which produces his blood cells.

November 13th The day of the transplant, it’s my turn to stay over with Adam this evening so I will be escorting him on his hospital transfer (we’re on hospitals; 3 and 4 now!). He’s been irradiated in one but the stem cell transplant unit is in The Royal Liverpool. I take the dog for a walk in the morning and I’m thinking through the process knowing that as I walk the donor cells are being flown across the Atlantic to save my son’s life having been harvested the day before. The whole process of how important my son’s life is both to the donor and all the doctors, staff of the NHS and indeed tax payers who are funding, this overwhelms me and I burst into tears… I got a very funny look from the dog who clearly thought he’d done something wrong (again!).

At tea time I drive to the hospital where Adam is in the Teenage cancer trust unit, by now in isolation as his entire immune system has been killed by the radiotherapy. I swap over duties with his Mum and await our transfer. We are being taken by ambulance to the Royal Liverpool. Everyone is in good spirits; the stem cells will be infused this evening. During the day they have landed at Heathrow, been checked at The Royal Free Hospital in London transferred by courier to Liverpool and then all checked again at The Royal Liverpool Hospital.

The ambulance arrives, a cheery team, and we are driven a journey that normally takes me 30min in 15min flat! Blue lights and sirens all the way, traffic getting out of our way at every junction and an escort through the Mersey tunnel! We begin to feel very special as if everyone in the city is on our side and willing Adam on to get better almost like it’s a shared project. Adam didn’t realise that the sirens he could hear were all for him.

The actual stem cell infusion is just like receiving a blood transfusion and last about 4 hours, it was in many ways the most uneventful of the many, many procedures he has undergone in the last year.

We are full of hope post-transplant, it has gone well so far with one or two minor mishaps on the way. Adam is extremely tired a lot of the time which will be the case for a while. He hopes to return to school in September back in year 12 so will have dropped a year. He’s hoping some of his friends fail exams so they have to drop back too!! We don’t yet know the final effectiveness of this treatment but are very hopeful that it will be a good result and his cancer will have gone for good.

After 100 days Adam receives another PET scan to assess the effectiveness of the treatment on the tumour. A nerve wracking 10 day wait for results during which he is hospitalised for a week with an infection. We meet the consultant in clinic and know immediately that the news is not good (oncologists should never play poker). To our immense sadness and stress the area that hadn’t completely gone is now active and growing. The stem cells have grafted but the cancer has not gone.

Update:

Adam is now in a fight for his life, we don’t know for certain of any treatments left. We hope he will be given some experimental monoclonal antibodies but there is no extensive research about their effectiveness. Our days are now taken up with appointments, infusions and radiotherapy to keep the cancer in check. Sometime soon we will know what further treatments he may have. We have taken as our inspiration two quotes from The Lord of the Rings Trilogy, one of Adam’s favourite books.

I wish it need not have happened in my time,” said Frodo. “So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

“ I see in your eyes the same fear that would take the heart of me,

A day may come when the courage of men fails….. but it is not this day”

One thing though we do know for certain, without that anonymous American woman agreeing to give a cheek swab and sign on the register, Adam’s chances of life would have been very slim indeed. We will never be able to thank her enough. If all goes well one day we hope to do so in person but we will have to wait two years before contact can be made.

In the meanwhile I applaud Emily Clark and all her family and friends for the outstanding work they are doing on raising awareness of blood cancers, and stem cell transplant. The battle against this vile disease is not over and much needs to be done. So please continue to provide financial and practical support to all of the various charities in particular

Leukaemia and Lymphoma Research

The Anthony Nolan Trust

Delete Blood Cancer

(I hope you enjoyed this, and if you did, let Richard (@curlyman66) know!)

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Posted on March 24, 2015, in Em's Blogging.. Bookmark the permalink. 3 Comments.

  1. I don’t wish a cancer diagnosis on anyone. But knowing we are not alone in our ‘bugger Burkitts’ makes life a little less lonely.

    Thank you for sharing.

    Take care

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  2. Ok Richard, I can’t say I “enjoyed” it – I prefer the “and then we all lived happily ever after” type of story. However I did “appreciate” it.
    Thank you for sharing your story – so beautifully written – sadly too close to my own heart.
    My 16 year old daughter Leah died from complications of her bone marrow transplant last year.
    I blog at victoriawhyte.wordpress.com

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  3. Rich I can’t read this without snivelling because Adam’s been through so much and so have his fellowship of the ring. I hope you all know there isn’t just one but many Samwise Gangee’s wanting to help him on his quest. In the mean time, we’ll get busy promoting the bone marrow register & raising awareness of The Anthony Nolan Trust etc

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