The beginning

My name is Sam and I am currently a second year student at Bournemouth University, studying Operating Department Practice. I am a Christian and a family man and it goes without say that without prayer and the support of my family you would not be reading this today.  Of course, medicine plays a key role in my story too!

My story begins on the May bank holiday weekend in 2014. I was feeling pretty tired but I had put that down to having a family and a busy work life as an office manager.  I was to spend the whole weekend at our local recreation area refereeing football matches, some of which, two of my sons were playing in. Apart from a bit of sunburn and biting my gum during one of the games it was an enjoyable weekend. By the next morning my gum had swollen so much it had covered my teeth on the one side of my mouth. 

I made an emergency appointment with my GP on the Tuesday morning and picked up some antibiotics. A week went by and I was back at the GP’s picking up another course of antibiotics. Another week later , whilst the infection was under control and the swelling had subsided the hole in my gum hadn’t healed. This time I was sent away for a blood test. The following Tuesday I get phone-call that can’t tell me anything, just that I need to get to the Royal Bournemouth Hospital straight away.

It’s not long before I’m being ushered through the ward by a nurse to the waiting room. The consultant was kind and professional but straight to the point.  It wasn’t long into the conversation when leukaemia was given as the most likely diagnosis taking into consideration the rash, bruises and all my very low blood counts. However, the only way of finding out for sure was by taking a bone marrow biopsy. Four and a half hours later with two bags of blood and a bag of platelets inside me I’m allowed to go home, just until tomorrow though.  I walk out of the hospital towards my car, alone and dazed.  I get in my car and as I shut the door the floodgates open, I cry like a baby for about ten minutes before going anywhere.  On the way home I call Human Resources to let them know I won’t be in tomorrow, or the next day, in fact I might never be coming back.

The bone marrow biopsy revealed that I had bone marrow failure, Very Severe Aplastic Anaemia. 

Well, that didn’t sound too bad, can’t you just give me some iron supplements and I’ll promise to eat more spinach? Like most people I had never even heard of Aplastic Anaemia before, it didn’t sound particularly serious anyway.  How wrong I was.

The treatment 

For the next 11 months, Ward 10 and 11 became my second home.  The nurses became my friends and besides my family were the only people I had contact with for that year. 

I went through horse ATG treatment which for me, was a truly painful experience, however the nurses worked very hard to help me. Ten days of treatment eventually passed and I could go home.  It would be 4-6 months before we knew if the ATG had worked and with a 60% chance of success I was hopeful.  Throughout my journey thus far my neutrophils (a measure of the white blood cell count that help fight infection) were consistently between 0.1 and 0.2 at every blood test.

Over the next few months I continued with my three days a week at hospital receiving transfusions in addition to the immunosuppressive drugs, anti-fungal medication and a cocktail of prophylactic drugs. 

All the while, my family and friends were busy raising awareness and money for The Aplastic Anaemia Trust, the kids and their friends were making and selling loom bands to people passing our house, my cousin set up a fundraising page to pay for a holiday for us...After careful planning, a triple blood and double platelet transfusions we went to Yorkshire for a family break.

A few weeks later the consultant had reached the conclusion that the ATG hadn’t worked. The next step and the only real cure for this disease was a bone marrow transplant. Luckily, it wasn’t long before a 10/10 donor had been found and I was booked in for a transplant mid-January. 

The transplant

Thanks mainly to generous gifts from members of our church the kids had the best Christmas ever.  All the while I was still having transfusions every week to keep me topped up. I managed to get one in on Christmas Eve with the aim of giving me a slight energy boost over the festive period. Not long afterwards, I received news that my donor had pulled out. I was left feeling deflated and wondering what the future would hold.  Thankfully it was only a matter of weeks and a 9/10 matched donor had been identified.  The doctors were happy with the numbers and I was booked in again for the third week of March in 2015.

The day was finally set, the 2nd of April. Prior to that came a cocktail of chemotherapies to prepare my bone marrow to allow the new cells to take up their position. The first couple of weeks were hard...

The transplant day came and went, and was fairly uneventful, thank goodness.  It was just like having a blood transfusion, except it wasn’t just liquid - this was life-saving stem cells. My donor was a very generous, selfless German man, a little older than me and that’s all I know of him. 

Needless to say I was still disappointed to wake up the next morning unable to speak German.

The lows and the highs

The last few weeks became all about the result of the blood test that was performed every morning.  I recorded all my results (yes, on excel!) and was always asking for print-outs of my counts. 26 long days had passed since the transplant day and it was the morning of my wedding anniversary (our most favourite day), the highest neutrophil reading I had had by this point was 0.1.  I was really looking forward to Em coming in later. Before she arrived though I had my morning visit which usually consisted of juniors and registrars checking all the usual things. This morning the consultant was also in the room. None of them looked particularly positive or excited about what was to follow. The consultant says:

Unfortunately we don’t think your transplant has worked; you’ll need a second transplant.

Em arrived in the evening - the highlight of my day. Our most favourite day of the year and yet this time it was most certainly the saddest and darkest day we faced together.  Our time quickly passed and before I knew it, I was ready for bed.  That night I prayed.

Overnight, nothing short of a miracle was occurring in my body, as within 3 hours of that blood test, my nurse came back with a big smile on her face holding a piece of paper with my results.  She passed it to me and I couldn’t control the feeling of excitement and I just couldn’t stop smiling.  My neutrophils had jumped straight to 0.5! I was discharged the following day and had my last transfusion just a week later. 

I’d like to say that everything was smooth-going after that point and that I was back to normal life within 6-12 months. In reality, my recovery took 3 and a half years before eventually I was signed fit for work and was able to come back into society.

I remember the day I received the phone call from the hospital telling me that my immune system had finally recovered sufficiently enough to start doing ‘normal’ things again. It had been 1,504 days since being diagnosed with Very Severe Aplastic Anaemia and I was finally better. In that time period, my family had suffered from cancer, people sadly passed away.

It is because of the immense suffering that we have gone through that I've decided to support two causes close to my heart. I will be climbing Ben Nevis in June 2020 in support of the AAT and Mount Kilimanjaro in August 2020 in aid of Cancer Research UK - please support me and help eradicate these awful illnesses.

If those 1,504 days have taught me anything, it’s to be thankful for today and live it to the full, don’t wait for tomorrow to go and do something you’ve always wanted to do, you don’t know what tomorrow will bring.Make the time to appreciate those around you, your family and your friends.Love each other and don’t argue about those things that really don’t matter.Whatever happens, stay positive.

Sam in 2014.                         Sam in 2019.


Blog by Sam, Aplastic Anaemia survivor