I’ve hesitated for hours and days before finally deciding to write … and this message has sat in my outbox for a long time too.
I follow your blog, and from what I gather our stories are quite similar, and I suppose I just wanted to share mine with you – so here goes …
It was my sister who told me about you. She lives in Bournemouth and had heard about you and Felix’s Facebook page.
My son Theo was diagnosed with ALL in January 2017. Out of the blue – a thunderbolt that shocked us to the core. He was 12 yrs old at the time and we were in the UK to celebrate my 40th birthday with family when he really began to get sick (we have lived in Switzerland ever since Theo was a baby). His symptoms were mainly chest pain, so this sent the doctors off on a wild goose chase, with ECGs, chest x-rays, MRI scans, IV antibiotics. First of all, we were told it was just down to a growth spurt. Then it was inflammation of the cartiledge between his ribs and chest bone. Then it was suspected pleurisy. He was kept at hospital for 5 days while they tried to keep his temperature under control. He was in incredible pain. He screamed and begged to end his life – delirious and scared in the middle of the night. I watched various doctors scratch their heads – trying desperately to confirm a diagnosis. The chest pain eventually disappeared, but his hips hurt. Then his shoulders. Then his legs. He started creeping around like an old man – crying in pain when his knees gave way under him. After 7 days of antibiotics, we were finally able to return to Switzerland, and the doctors handed me the results of his last blood tests, vaguely explaining that there were some anomalies (presence of blast cells) that we should follow up with Theo’s paediatrician once back home. They even said we should possibly consider a bone marrow test, which seemed bizarre and totally random but I was told there was nothing to worry about.
We managed the journey home, although I’m not sure how. Airport assistance provided me with a wheelchair to push Theo through the terminal building as he could barely walk. He cried in agony for the duration of the flight, and I just knew looking at him that something was very wrong – he was grey and his eyes hollow. I forwarded all the reports from the hospital to his Dr, and we were there first thing the next morning. Theo was already fed up of being poked and prodded and just wanted to be left alone. I told him I was not stopping until I knew exactly what was wrong. The evening before my family (who had researched some of the terms from the hospital report) tried to warn me that things didn’t look good, but I wouldn’t listen. I was in total denial.
The paediatrician examined him, felt his liver and spleen which were enlarged due to the white blood cells and sent us later that day to the University Hospital in Lausanne. We arrived, I explained the whole story again, they took bloods from Theo, and within a few hours, we were being told the news that even today seems impossible. Theo had Acute Lymphoblastic Leukaemia. He was being kept in hospital in isolation. They would take a bone marrow sample the following day to confirm which type of Leukaemia and to administer the first dose of chemo into the spinal fluid. I was calm – totally and utterly calm, listening, trying to take in everything they were saying. Then frantically making phone calls. I didn’t cry. Not one single tear. Like I was on autopilot. The next 10 days are a bit of a blur. Theo was taken to the operating theatre early in the morning and they inserted a tube into his neck. I have never seen anything so horrendous. It bled and it hurt him like hell. He started on the steroids that made him wake in the middle of the night craving cheese. Days and nights merged into each other. I informed my work colleagues of what was happening, and Theo’s school. The grapevine started to spread the news.
Then after 10 days were allowed home. The tube in his neck was removed awaiting the portacath to be inserted a couple of weeks later. We came home with a file of information, medication, and the awful realisation that the Leukaemia was still there. I was overwhelmed by the responsibility of caring for such a sick child. Theo was scared. It was different being ill in hospital – that’s what hospitals are there for. But being at home felt different. Things had changed definitively.
We ploughed through the next weeks, waiting impatiently for the results of the second bone marrow test. The doctors were pleased – there was no residual disease; Theo was reacting well to the treatment. Ironically it appeared that the sicker he was, the better his body was reacting to the chemo, which was good for beating the Leukaemia. Difficult to explain to your child when they’ve just been sick for the 5th time on an empty stomach. The reality sank in. Relentless sickness, headaches, tears, despair, hospital visits, questions. Theo hit some very dark times at his worse – one time he headed to the kitchen and tried to grab a knife telling me he would rather be dead than have to go through the treatment. I held him forcibly on the kitchen floor. My partner held us both. Everyone was sobbing. I told him that there was no option to give up. He would fight the cancer every step of the way, and I would be by his side.
He missed the rest of the academic year, which in this school system is an important one as the kids are then streamed for either higher education or a less academic route for later on. Luckily the school let Theo continue in the group on which he had set his sights. But this year is already proving tricky – we are a few weeks into the new term and he’s just reached the end of Delayed Intensification, and has already missed lots of lessons. The big difference is that we know that soon, he will hopefully be much more in school – so anything he misses now, will only have to be caught up on later. He’s putting the bar high, and I find myself worrying that if he doesn’t do as well as he wants, he will become demotivated and will give up. I spend a lot of time wondering how much I need to make him work, given the fact he is still having frequent chemo and suffering from all the side effects. The boundaries are less clear than before … how to maintain rules when the circumstances are so different. A very grey area which I have struggled with on numerous occasions. His games console has been at times his new best friend and a great source of consolation when he was isolated from almost everyone, but like every teen – the temptation of the screen is strong and I don’t want him glued to gaming just to fill the void his illness has created. But as one of the nurses pointed out, he needs time to relax and free his mind. It’s all about balance. And there are no rights or wrongs, just everyone trying to do the best they can.
Unlike most cancer patients, Theo only lost his hair very recently. It was just a few days before school (perfect timing !) and he called me panicking from the shower. Hair in his hands, in the sink, falling off onto his towel and t-shirt. It became progressively thinner and thinner over a few days before we shaved the rest off. Not an easy thing, especially at an age where looks are becoming so much more important (he turned 13 in July). I now realise that his hair was quite an important topic – almost the first question Theo asked me after the diagnosis – would he lose his hair?. At that point, and in all likelihood, the answer was yes. He was scared and so was I, but as the weeks and months went past, miraculously his hair stayed put. It became thin, and we cut it to mask this, but for anyone who didn’t know him, he had what appeared to be a full head of hair. He looked normal. It was a blessing but also a curse. It meant he was able to walk around without people staring – the cancer was invisible, and that helped him. On the other hand – and it might sound strange to say it, he didn’t look ill and people thought he wasn’t sick. I was regularly asked if the treatment was over as Theo look really well (!). I found that hard – like he was some kind of imposter, and I was fabricating his poor state of health. And then it happened – so many months later. It was really upsetting for me, as I realised that finally, he looked like a cancer patient. My fit and healthy strong boy. Now a bald, chubby shadow of his former self. Still plagued with a strange appetite for salty and super spicy food. I know it’s only temporary, but it hurts to see him that way.
I also have an older daughter who despite the horrendous year has managed to do us proud. It was her GCSE year (Swiss equivalent), and she did exceptionally well – even coming top of her class. Study became her coping mechanism. Throughout all the illness, I think she has found comfort in her books and school work. She’s been through many highs and lows over the last few months, thoroughly shell-shocked by the surreal world that she was also plunged into. Hours of hearing the cries and sickness of her brother through the bedroom wall. Silently wondering why all of this was happening.
I don’t cry often, and especially not around Theo. I think it’s the only way I can cope with everything. He knows how hard it is for me, and we have shared tears on more than one occasion. When people ask, I tell them that in my experience living with Leukaemia is like being catapulted onto a very fast extreme fairground ride. You didn’t ask to get on, and you won’t be let off either. You are thrown all over the place at full speed, with absolutely no warning of which direction you are heading and no visibility. It’s full on. With no preparation. And it goes on for 3 years.
Other days I think that it’s just as well no-one can prepare you for the marathon that lies ahead because quite simply it’s inhuman. The duration is insane, and tiredness cumulated is over and above anything I’ve ever known. The illness alone is like a full-time job, and somehow life also has to continue – the family, house, work etc. Nothing else has stopped. Business as usual, except it just isn’t the same. I remember reading your blog about wandering aimlessly around the supermarket – and I can so clearly relate the feeling of being in a bubble. I find myself thinking the most ridiculous things – wondering if people can tell that I have a son with cancer. Wanting to tell random people to make the most of their children as you never know when something as precious as their health could be taken away. Trying desperately somehow to make sense of the chaos.
I know there are many days when every waking minute is spent thinking about Theo, and it is my only topic of conversation. I don’t like it, but feel unable to behave any differently. The months and months of treatment take such a toll – I am beyond tired and seem to feel almost more fragile now that in the early days. Just recently, a family from Theo’s basketball team saw me and asked after him. They obviously have no idea about Leukaemia nor the treatment, so I told them some bits and bobs, but then suddenly couldn’t contain my emotion, and cried at them – in the middle of the shop. They apologised for upsetting me – and I said it was absolutely not their fault. I just don’t recognise myself or my reactions. Life is like a dazed blur.
And like Felix – throughout all of this, Theo has still managed to keep his sense of humour. Even last week, in the midst of yet another dose of chemo he made a new nurse laugh telling her he gave everyone a mark out of 10 according to their skill administering the medication. He calls himself kiwi-head as the few fine hairs on his head make it look like the fruit. Children have hidden strength that never ceases to amaze me.
Anyway, I had better stop before this gets any longer. I just wanted to thank you for managing to write down in such an accessible way what you are experiencing. It’s really good to know that we are not alone. Theo is not really into Facebook – but I do sometimes talk to him about Felix. I have shown him a couple of photos (they have had the similar puffy steroid face and now bald head), and I tell him that being 1 year further forward in the treatment, that Felix is managing to get back to a much more “normal” life. Theo’s other great passion (apart from basketball) is photography, a hobby passed on to him from my partner, and actually one of the few things that have helped him enormously since January. If you are ever on Instagram, his page is: t.ed.h
I know he would be thrilled to have more followers!
Sorry for taking up so much of your time – I know September is a busy month. I’ve loved your blogs so far 😊
All the best to you and your family – sending big hugs all the way from Switzerland.