Victoria B
Posted by

Matthew's Journey through ALL

Victoria B
Posted by
29 Aug 2014

The 23rd February 2010 is a very noteworthy date in our house. Possibly, because it was the day before my youngest sons 4th birthday, but in truth that was the day my oldest son Matthew was diagnosed with acute lymphoblastic leukaemia. I'd like to tell you that it was a complete shock, but in my heart of hearts, I already knew.

Pre-diagnosis

Matthew hadn't been right for a while. Nothing you could put your finger on and tell the doctor, just not right. I'd mentioned my concerns to my sister more than once. The weekend before diagnosis we'd gone away to stay with her, to have a little break at the end of half term. Matthew had been having low grade fevers all week, but wasn't really ill, he was bright -  I put it down to a virus. However, over the weekend the fever continued and hit 42c and he appeared to have developed a meningitis type rash and was as white as a ghost. I took him to the local hospital, who told me he was fine but to pop into my local hospital when I got home for a blood test. 

We had an hour and a half drive home, my parents had arrived to look after my other two children, whilst I drove a further hour to the hospital for this quick blood test. We were seen by a Junior Doctor fairly quickly, who said he needed to speak to his registrar. Matthew was quite perky and I wasn't in the least bit concerned, but alarm bells should have rung when the registrar arrived so quickly and at the end of his examination said "Its ok, we've got him now". At the time I though it was an odd thing to say. I know now, that they knew he was very ill and had felt that his liver and spleen were enlarged, but they were not sure why.

Diagnosis

Matthew's blood counts indicated his body was really struggling with something, but it wasn't until lunchtime the following day I was told he had leukaemia. Well, there's nothing like THAT diagnosis to send you into a flat spin, thinking it is one thing, being told your child has it, is something entirely different. After the initial shock and panic was over, I was in practical mode for a while. I told all the people that I needed to tell face to face where possible and over the phone, if distance was too great. Absolutely awful conversations, and telling your family that they were not to cry, when either myself or the children were around, was hard, I was determined this was going to be a positive journey, no-one was going to be scared.  We could do this.

Matthew was transferred to Bristol Royal Hospital for Sick Children the following day, the most exciting part for him - he went under blue lights. His little brother was pretty jealous of that. It seemed incredibly strange, our world seemed to have stopped spinning whilst everyone else was going about theirs. I kept waiting to be told it was wrong, but that didn't happen. At Bristol, the diagnosis of acute lymphoblastic leukaemia was confirmed and clearly explained but initially the treatment plan was not clear, as it was dependent on a few factors.

Treatment

Matthew was going to be on the UKALL 2003 trial. Depending on the results of one of the tests, if we agreed to the trial, he would be randomised to receive a specific regime of treatment dependent upon risk factors. It was explained to me that they were working on giving the least amount of treatment for the best results. There are side effects to many of the drugs, but I felt it was a necessary part of treatment. As it happened Matthew wasn't able to be randomised, as his bone marrow results at 28 days were indeterminate, they couldn't tell whether his leukaemia was low or high risk. This meant that Matthew would receive the standard treatment, no randomisation, this was in 2010 and trials have moved forward from this.  

Eight weeks of consolidation followed of which one of the treatments was high dose steroids. Many people didn't recognise him during this period, for me that was one of the worst parts of treatment. This followed with 8 weeks of interim maintenance, he had daily chemotherapy at home, then what is called a delayed intensification. This was about 6 weeks of blasting pretty much everything. Matthew had the interim maintenance and delayed intensification blocks twice. After this he had maintenance proper. The whole treatment lasted 3 years and two months. As boys have to have an extra year of treatment.

The treatment itself is harsh, even on maintenance chemotherapy was at least a daily occurrence. One week out of four you're administering so much oral medication it's unreal, two types of chemotherapy on one day, daily chemotherapy for the other six. Twice daily steroids for 5 of those days and antibiotics at the weekend. That is as long as he was well, if he was ill it could be a lot more, or he could have been hospitalised for IV treatment. He would have blood tests at least every other week to see what his blood was doing.

During treatment there were highs and lows, probably not the kind you would think either. Highs for us meant no neutropenia (neutropenia means having no white cells to fight infection, loosely speaking) which meant being able to socialise with family and friends and try and be normal for as much as possible. Highs also meant being neutropenic, no chemo, and being able to enjoy cheeky hot chocolate and milk in the evening. This chemo can't go down with milk, it can make it less effective.

Side-effects during treatment

Lows deserve a whole paragraph of its own, the intensive blocks are just that. I watched the colour slowly drain from him over these weeks, Matthews hair fell out each and every time. For him, the treatment did cause pain, it stopped him eating and was really unpleasant. He needed two further blood transfusions. In the early days he had a line infection in his port-a-cath ( a central line used for delivering chemo, antibiotics and taking blood). Then, there's the whole low or no immunity due to treatment. We've had to be collected by cave rescue and transferred to a road ambulance with fire escort to get to hospital, when it snowed a week before Christmas when Matthew spiked a 40c fever and I couldn't get the car out. We've had many incidences involving ambulances, one blue light episode as he got hotter and hotter - "Can you put the lights on through these road works so we don't get a ticket" and they stay on and suddenly you're going through town on the wrong side of the road. Hand on heart, that was the first on treatment meltdown I truly had, when he was seeing all sorts, including sausages in his bed. In hindsight it was funny, just not at the time.

The second real meltdown I had, was when he was in renal failure. He had received a fairly large liver insult from a drug given to combat the shingles he'd developed. Shingles and chicken pox amongst other illnesses, to our special children, with their reduced or non existent immunity, can be very dangerous. He went on into renal failure and it was some of the scariest moments of my life. Thankfully it was completely reversible, but we discovered Matthew is prone to having reactions to drugs that you only find in the smallest small print!

Psychological impact

Matthew missed pretty much a whole year of school. In that time he had some home tuition. It was very hard for him when he did go back to school or saw his friends as his appearance had changed so much and he was still limited to what he could do.  Tiredness and pain factored in it, but we also had to bear in mind his limited immunity. Some children and even some adults thought it was ok to make comments or make him remove his hat, just for the fun of it. His best friend Morgan and his mum Sarah took it all in their stride, Matthew was never uncomfortable around them and when things were not great, they were round in a jiffy to try and cheer him up, or stuff him full of naughty goodies when he wasn't eating. It made the journey that much more bearable for him and the rest of us.  

Matthew's older sister and younger brother found treatment very difficult, they both have their own health needs. As I was a single parent, they never really knew who would be looking after them, or picking them up from school when Matthew was ill.  We had to employ a nanny so they had some form of stability and someone who could stay with them if I was in hospital with Matthew over night, although there were many times that's he stayed over night alone as I needed to be at home for his siblings. We have two really good friends who went out of their way on more than one occasion to get children from A to B in emergencies, family stepped into help too. Without them it would have been much more difficult.

Positives

So where are the highs? We had plenty, from great laughs with the ward staff, some we became extremely close to. Knowing the treatment was working, lots of special family time, holidays away with extended family. More importantly we met some fantastic people, some on the same journey as us who have become lifelong friends and we have been able to offer support to other families going through treatment. It would be fair to say its also been rather character building!

Matthew finished treatment and has been in remission from ALL since April 2013, although he still needs to have regular follow ups. He has made it his mission to fundraise and consequently mine. The money raised will be split between the hospital that cared for him and Leukaemia and Lymphoma Research. Matthew won't tell you much about life with cancer, he finds it very hard to talk about it, but this is what he will tell you - he does not want even one more person to go through what he has.

Donate towards Matthew's fundraising efforts here. You can also follow the campaign by liking his page on Facebook.

Comments

Anonymous
07.09.2014

brilliant, thank you.

Anonymous
17.09.2014

Such a familiar story to ours, we are two years through our journey, Dan diagnosed the day before he started school, his 5th birthday soon after. Nice to see Matthew smiling. Best wishes and hugs x

25.09.2014

Victoria,

Thank you so much for sharing Matthew's story with us. So, so glad to hear that he's doing so well after everything he's been through and absolutely love how he's made helping beat blood cancer part of his life. You must be so proud of him!

Your experiences go to show that whilst we've come a long way we've still got a long way to go as the drugs that Matthew and others are being exposed too are to severe and it's not right that they should have to suffer so much at such a young age.

Together we will be able to fund the research that will continue to improve and tailor treatments that are less harmful and damaging of young lives. Good on you for helping to raise awareness!