I started to write this blog post a few weeks ago. I was full of excitement and enthusiasm for the start of the new year. We'd been waiting a long time for this, for our first cancer free calendar year since 2014.
Celebrating the New Year
I wrote with positivity on how the start of this year felt like a breath of fresh air. How the year and our future was full of possibilities, of freedom and discovery. A year of finding ourselves, both as a family and as individuals. A time of figuring out who we are now and what we want without cancer hanging over us. It would be about picking ourselves up and marching forward into our nice new normal.
As I read back on my draft I can feel the strength and happiness I felt when I wrote it. It's infectious and makes me smile. I felt good, so good.
Then a few days later I received some sad news, more than one lot of sad news actually. Heartbreaking news from others who walk the same path as us. Feelings of unfairness, anger, guilt, worry and most of all incredible sadness overwhelmed me. It served as a sharp reminder of how fragile and deeply tragic childhood cancer can be. How random and unpredictable it is. That it can throw up cruel situations for which there are just no words. It broke me a little.
We have been, and will forever remain, part of a world so often full of sadness and heartbreak. We can't, and nor would we want to, ignore or fail to be moved by stories of those less fortunate, or not be aware that it could still so easily be us. But it is also a world full of strength, courage and inspiration. We have learnt so much and despite everything there are positives to be taken from our darkest days.
Maybe we need to weed out these positives, carry them forward and try to leave the rest behind. Perhaps this year is about learning to navigate the new highs, while accepting that there will still be lows. I need to hang on to the enthusiasm I felt, the happiness that is still there under the surface.
So this year might not be about marching forward with the force of a tornado, full of boundless energy, trying to create something brand new. More about finding a balance between the old and the new.
In the months since Hugo has finished treatment, we have all felt lighter. The weight of the fear and worry has slowly lifted and I have faith that it will continue to do so. That the black cloud of cancer will not darken the days of our future as it has our past. I refuse to let it. We deserve those lighter, happier days and we owe it to those less fortunate than us to live them as fully as possible.
Like the physical effects on Hugo, this is a process of recovery. Of not expecting too much of ourselves too soon. Continuing to take it one day at a time, to learn and to grow. To feel thankful for where we now find ourselves, while still acknowledging where we have been. We can allow this experience to shape us, but never to define us.
I intended this post to be a positive one and despite the sadness within in it, I hope it still is.
We are once again heading into the unknown, but this time in a good way. 2019, I think we are ready for you.
It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like?
In many ways it doesn't look very different to life on treatment. There has been medication every day, (although not the yucky chemotherapy or steroid type), the nurse has been twice and the physio has visited Hugo at school. We have all had colds and the worry that Hugo's will develop into something more serious has been there, just like it has been for over 3 years.
But somehow everything is different. I feel lighter. I'm still exhausted, but somehow I feel energised too and excited about the future. The fog in my head that arrived when Hugo was diagnosed, at last, seems to be lifting. Things just seem a little clearer, a little brighter.
The mix of emotions is still there, but the intensity has eased. During the days and weeks leading up to the end of treatment, I felt anxious and tearful, along with the expected excitement. My adrenaline was pumping and the emotions were almost overwhelming. The hugeness of what was about to happen after so long was almost too much to comprehend. Then it happened. The big, light at the end of the tunnel moment. Bringing with it a huge wave of relief.
I have thrown myself into celebrating. There has been a dinner out, a bucks fizz breakfast (for me, not Hugo!), a hastily arranged gathering that turned into a bit of a party and a stay at Thomasland. I have been looking at trips away and days out, keen to make the most of our newfound freedom.
We are sitting in an end of treatment bubble, fully enjoying and relishing all the good, all the happy. There are moments when the fear and worry threaten to creep in. The reality of what we have been through is slowly easing its way in, trying to invade our bubble of happiness. But for the most part, these feelings are held at bay, pushed away outside the bubble. I refuse to let them in and am holding on as hard as I can to this lighter, brighter feeling of relief and joy.
I am fully aware that this bubble will one day pop, that this isn't really the end of our experience. I know it could come back, that there is every chance Hugo will be living with the effects of the harsh treatment for many years to come. But whatever the future holds, this achievement and this wonderful feeling is worth celebrating and enjoying to its full extent. We deserve this time in our little bubble. I'm so tired of feeling sad and exhausted, of living in fear. I refuse to let this cancer disrupt our lives any further than it already has.
I want us to live again, to live a life free and unburdened. To bring laughter back, laughter that makes cheeks hurt and tears fall. I want us to be all that we are capable of being, with nothing holding us back, including ourselves with the fear of what might be. We have learnt how important it is to make every day count and how lucky we are to be able to do so. I want us to get out there and seize the day.
Hugo seems to have a newfound energy. I don't know if this is because of stopping chemotherapy, or if he is just picking up on the mood, but he too seems lighter and brighter. His walking continues to improve, his confidence seems to be growing. He seems fully ready and willing to grab hold of this next chapter of his life with both hands.
I still don't think he understands the significance of finishing treatment, but it doesn't matter. He is happy and it is beautiful. I am so excited for all that is to come for him, for the new world he is slowly discovering.
Most of all I am unbelievably proud of him. His smile and strength have often hidden the true extent of the battle he fought. But I know. I know all that he endured. How cruel and brutal this experience has really been. I have watched him every step of the way, and he has been incredible, in every way possible. I want to shout from the rooftops 'he did it, he bloody did it!'. Because he did, my amazing little mad did it. Watch out world because here he comes.
After three years of treatment, I suspect many people are a bit lost with Hugo's illness and treatment. Here are some of the questions I have been asked and a few others that I thought people might want answers to.
Do you mind talking about it?
Probably a good one to start with! No, not at all. He's my son, this is our life, I'm always grateful if people take the time to ask after him or try to understand his condition and our life a little better. So ask away!
Does he still have leukaemia?
Strictly speaking, no. Most patients with Hugo's type of leukaemia (Acute Lymphoblastic Leukaemia - ALL) will reach a level of remission after just 4 weeks of treatment. However, if treatment were to stop at that point, the leukaemia would definitely come back. Treatment continues beyond that point to make sure every single leukaemic cell has gone (even the really sneaky ones!) and to teach the bone marrow how to function properly again. He is still considered to be in 'active treatment'. We will count his 'days in remission' from his end of treatment date.
Why is treatment longer for boys than girls?
Boys risk the leukaemia retuning in their testes so their treatment plan is 12 months longer than girls.
Can it come back after treatment has finished?
Yes, up to a quarter of children with ALL will relapse. The likelihood of relapse decreases the further out of treatment a patient is. Relapsed ALL is more resistant to treatment, but is treatable. Patients are also more at risk of developing other types of cancer. The fear of relapse has been very real and I know it will continue to be so. Sometimes I am convinced it will come back, that it's just a matter of time. Other times I am able to be more optimistic. I am hoping that as time goes by the fear will lessen.
What is Leukaemia?
Leukaemia is a cancer of the white blood cells. Acute lymphoblastic leukaemia is an overproduction of immature lymphoid cells (one of the types of white blood cells). Normally these cells, which are produced in the bone marrow, repair and reproduce themselves in an orderly and controlled way. In leukaemia, however, the process gets out of control and the cells continue to divided but do not mature. Immature cells fill up the bone marrow and stop it making healthy blood cells.
Will his walking and other side effects improve when treatment ends?
That is the hope, yes. Hopefully once the medication stops it will allow his body to recover and catch up to where it should be. Unfortunately many patients suffer with long term side effects after their treatment ends, so it is definitely a watch and wait (and cross fingers) situation.
Will all medication stop at the end of treatment?
All chemotherapy and steroids will stop on his last day of treatment. Some of his other medications will continue for a while afterwards, but hopefully not for too long.
How did you know he had leukaemia?
I get asked this one a lot (and no, I don't mind).
Hugo's first symptom was a refusal to bear weight on one of his legs. Over the next few weeks he developed viral like symptoms that gradually got worse and didn't disappear. He was tired, pale, he lost his appetite and his glands were swollen. He had a hip x-ray and was diagnosed firstly with irritable hip syndrome, then a virus, before a blood test (as part of a paediatric referral) showed he had leukaemia. From his first symptom to diagnosis was about 5 weeks. He was diagnosed on 13 July 2015 aged 2 years and 4 months. When does treatment end? When will he ring the bell?
18 September 2018. He will ring the bell when his port-a-cath (bumpy) is removed, which is due to be on 7 November.
I don't know how you cope
More a statement than a question, but people say it a fair bit.
You just do. One day at a time. Sometimes I fall apart. I cry, I shout. I get angry and sad and everything in-between. Some days I feel completely overwhelmed just trying to get through the day. Then I carry on, because he's my son and I don't have a choice. I'm not brave, or inspirational, I'm just a mum. I know anyone would do the same. Maybe we don't realise how strong we are until being strong is the only option we have.
In just a few days Hugo will finish his treatment. A thousand thoughts and feelings have been racing around in my head over the last few weeks. Many of them positive, but some feel negative and selfish. It's difficult to make sense of them all, hard to put them into any kind of order. It feels a little overwhelming, this strange mix of emotions. I am excited, I am so very excited, but I am so many other things too.
I'm scared. Terrified it will come back. All this time we have been fighting and now we just stop and hope. Hope that it has all been enough, that it's all been worth it. But what if these last 3 years have only been the beginning of our journey, what if the worst is yet to come? Or I continue to be consumed by worry, the what ifs and am unable to move beyond the fear?
I'm worried the side effects he has suffered won't improve and that he will experience life long problems from the treatment. I fear people won't understand these worries, that they won't get that this isn't really the end, physically or emotionally.
I feel happy. So happy to be starting this next chapter of our lives that we have so longed for. I'm thrilled for Hugo, for all that awaits him. I can't wait to watch as he grows and changes and slowly adjusts to life without medication and its side effects. I smile just thinking about it, about him and all the wonders that are ahead of him. I long to see all that he is capable of being, to see him embrace his new found freedom. I know he will continue to make me proud every single day of his life and that wonderful spark of his will grow ever brighter.
I'm a little lost. I am so grateful that I have been able to be there for Hugo during his treatment, but I have also thrown myself into everything blood and childhood cancer related. It has given me a positive focus that I have been both thankful for and have enjoyed, but what happens next? Will I feel as passionately about raising awareness and funds? What about the relationships I have developed with the charities, the volunteer work and the teams I am so proud to be part of? Will it be the same? Or will I want to step away from a world that is so often full of sadness and heartbreak?
What about the blog that I have so enjoyed writing? Writing this blog has probably been one of the bravest 'putting myself out there' things I have ever done. I didn't realise how much I would love it and I know I would miss it, but what do I have to write about now? I don't know how to write anything that isn't about Hugo and cancer, and would people want to read it anyway?
I'm excited to look forward, to make plans and get stuck into the things we haven't been able to do, the parts of our lives that have had to go on hold. Like our house extension, holidays abroad and granting Hugo's wish of seeing the sparkly lights in Paris. There is a whole world of possibilities out there, so many wonderful adventures for us to go on and I am ready to embrace and enjoy every single moment. To seize the day with enthusiasm and an appreciation that I didn't have before.
I feel tired, so very tired. I have often said that this experience hasn't dimmed Hugo's spark, but I fear it may have dimmed mine. My confidence has been knocked in so many ways. I have blamed cancer for so much - for the mess of my house, my lack of enthusiasm, for permanently feeling like my head is somewhere else. I haven't been the mum, wife, daughter, sister or friend I want to be. But what if that's just how I am now, if the emotional scars have caused permanent damage? What if I can't undue all that it has done? This experience has aged me and I feel I look tired and dull. How do I get my spark back?
I am incredibly thankful, that we have made it to this point, that Hugo is well and happy, that he is still here. We are among the lucky ones and there isn't a day that passes that I am not acutely aware and extremely grateful for this.
I feel reflective and thoughtful. I have learnt so much about myself and others. People have been so wonderfully kind and supportive, it has made me question what I would be like if the shoe were on the other foot. It has forced me to reflect on who I am and who I want to be. An experience like this gives you a different view of the world and the people in it. We have felt such sadness and heartbreak. These have been the most difficult of days, but there have also been moments of pure joy, unexpected happiness in amongst the worry. It is impossible not to be changed by this experience in a million different ways that can't quite be understood or articulated. I hope I am a better person because of it. I just know I am different now, but what I am going to do with that knowledge, what positive purpose it can fill, I just don't know.
There are times I feel hopeful and brave. That we will take what we have been through, the strength we have discovered, and use it to create a positive and wonderfully normally family life. We will continue to look for the joy in the ordinary and to relish all that we have been thankful for. Hopeful that we can look forward rather than back. To find ways to celebrate as we tick off the weeks, months and years of our after treatment life, as the memory of cancer dims and fades.
Much of the time I feel overwhelmed by the enormity of the situation. Of what we have been through, at how huge this end of treatment moment is, the difference it will make to our lives. I feel tearful at the thought but I don't know if they are happy or fearful tears, I suspect they are a mixture of both.
I am lacking direction. For so long I have put Hugo first, putting thoughts of myself to the back of my mind. That is exactly how it should be and what I needed and wanted to do. But now I am starting to think a little about me again. What does the future hold for me, what do I want? I no longer work, no longer have the focus or direction that my job gave me. I feel very fortunate, but also a little without purpose. I have always admired people who have ideas and go for it, unhindered by a fear of failure. I have never been one of those people. I have wished for the courage to take the ideas in my head and make them happen. Maybe now is the time, but I don't know what and I don't know how.
I know I will be ok really. That I will continue to put one foot in front of the other, just like I have been doing. If I can get through the last 3 years, then the future should be a breeze. I know the thoughts in my head will slowly untangle and start to make sense, that the answers to all these questions will come or cease to matter. The fears and worries will ease as time goes by and we get used to this new normal, this nice new normal. It's a good problem to have and I know I will do my best to embrace it. The only person putting the pressure on is me, and I should probably be a bit easier on myself. I should just do what I've always done and take it one day at a time.
For the moment I will try my best to let the happy thoughts shine through. To look to Hugo to guide me, just as he has been doing, with his boundless enthusiasm and joy. I will approach this next chapter with love in my heart and a smile on my face and let the rest take care of itself.
A couple of months ago, on the way back from a hospital appointment, Hugo asked me what it felt like when I had my bumpy taken out. Bumpy is our name for Hugo's port-a-cath/central line. The little device that sits just under the skin to the side of his chest. It will be removed a few weeks after treatment finishes. I explained that I'd never had one and we chatted for a while about why he does. He seemed content with this, but a couple of days later he asked big brother Henry what it felt like when his bumpy came out. It made me wonder how much Hugo understands of his illness and what 'end of treatment' actually means to him.
Hugo was 2 years and 4 months old when he was diagnosed. We didn't have to have a difficult and emotional conversation with him explaining that he had cancer and what that would mean for the next 3 years. He was just too young. We've tried to explain things as we've gone along, our language changing as his understanding has grown over the years, but it's impossible to know just how much he comprehends.
So much of the treatment is just part of his life. The hospital visits, the weekly blood tests, the medication he takes everyday. He never asks why, he never protests. Sometimes this saddens me, but there is no doubt it makes this experience easier to deal with. But what will he make of it when these aspects of his life are no longer there? Will he miss them? Will he feel a little lost without them? All this time we have been excitedly counting down to the end, looking forward to the day when our lives will improve, when we get some normality back. But for Hugo, these last 3 years are his normality. The only life he has ever really known is about to change, he is about to leave his normality.
He has never longed for his pre-cancer life in the same way an adult or older child might, because he just doesn't remember. He doesn't understand the many ways in which cancer has affected our lives, he doesn't miss what might have been or feel deprived at things missed out on. He's happy, he's content, this is just his life. I know he won't miss taking medicine and I know he will enjoy the treats we have lined up to celebrate, but beyond that, I just don't know what he will make of it all.
We have started to try and explain a bit more about the things that will change, to prepare him for the differences. It's not as simple as 'no more medicine' or 'no more hospitals', it's not as black and white as that. I hope we're speaking in a language he understands. I hope he can feel some excitement and pride as we tick off the 'lasts'. He has shown himself time and time again to be resilient and strong and I know he will continue to be so. That he will adapt to his new normal, his new life, with joy and enthusiasm.
I want him to understand what it means for his treatment to be ending. To celebrate and feel proud of all he has endured. But of course he doesn't see himself as brave, he doesn't understand the enormity of the battle he has fought and I don't want to scare him. I don't want to take away the innocence he has by overloading him with information that he's just not ready to hear. I suppose one day he will be. One day he will have questions and at various stages of his life he will have waves of understanding and I will be there then. I will answer his questions and tell him how amazing he was. How he showed so many people what courage really was, that he fought his battle with love in his heart and a smile on his face. How his spark never once dimmed despite all that was thrown at him. We will celebrate again and again at the battle he will continue to win and I will watch as he sets the world alight with the strength, determination and courage that this experience has given him, even if he doesn't know it yet.
During the early phases of treatment Hugo suffered with many of the side effects synonymous with cancer. His hair fell out, he was sick, tired and pale. He lost weight, his light dimmed and he looked ill. Now, in this final maintenance phase, the side effects are often less obvious, but very much still there.
Loss of appetite - chemotherapy, it seems, results in a strange relationship with food. It's hard for Hugo to describe because he no longer knows any different, but I think food tastes strange to him, maybe it makes him feel a little sick. What I do know is that he doesn't eat very much. When he does eat he tends to stick to very plain foods, such as pasta (no sauce), bread and butter, or cheese. He often eats in phases - he finds a food he likes and then eats it for breakfast, lunch and dinner. There are plenty of times when he barely eats at all and wakes up in the morning feeling ill and weak. Days when even Haribo or biscuits can't tempt him. His diet is far from varied, he never hits his 5 a day and he drinks more milk than he should. I've heard stories of children that take a fancy to hot or spicy foods, because it's the only thing that gives them some flavour. Other children refuse to eat at all and need a feeding tube. We have been told on many occasions by his team to just go with it. As long as he is eating something, then let him have what he fancies (within reason!).
This means it's rare for us to sit at the table as a family and all eat the same thing and it's a guessing game as to whether Hugo will eat what he has asked for. We waste a lot of food and at times it's hard not to feel frustrated when he refuses to eat the meal he has asked for. We still go out to restaurants (usually Pizza Express because Hugo likes dough balls....sometimes). Hugo may eat a little, sometimes we take a packed lunch for him, other times it's just a glass of milk. It often becomes a game in distraction because Hugo has finished or rejected his food while the rest of us have barely started.
I have lots of photos on my phone of Hugo eating, because it's so unusual and always gives me such pleasure to see him tucking into something, especially something new.
On holiday eating pancakes!
A chocolate brownie at his favourite cafe (nearly) always goes down well
During the Coco Pops phase!
I feel sad for him that he is missing out. He rarely gets any pleasure from food - no cold ice-cream on a hot day, takeaway pizza on a Saturday night or a warming roast on a Sunday. Sometimes I question whether we should push it more, is he playing us or just being fussy. Then I remember the times he rejects even sweets or the chemo breaks when his appetite improved and I know we need to just keep keeping on. That when he finishes treatment things will improve and a whole new wold of food will open up to him.
Weak muscles - one of the more noticeable side effects for Hugo has been muscle weakness because it has resulted in the need for a wheelchair. His legs and hips are weak, making it harder for him to walk any distance without tiring. Combined with a broken leg last March, it saw Hugo unable to walk at all for 10 months. The weakness extends to his ankles resulting in his feet turning in so he needs in-soles to support his foot arches.
Being fitted for new in-soles
He also suffers from peripheral neuropathy (damage to the nerves) in his feet. All of this means it takes a lot more effort for him to walk and he is simply not able to keep up with his peers. He struggles to climb, run, hop or jump and even getting up from the floor can be tricky. It hard to see him unable to keep up, or struggle, but most of the time he gives it a go anyway and I'm so proud of his determination. Like most other side effects, this should improve once he has finished treatment, but it is impossible to say how long that might take.
After the wheelchair came the walking frame
Increased risk of infection - The chemotherapy Hugo takes means that he is constantly immunocompromised. He is at an increased risk of infections and should he get one, it would most likely be harder and take longer for him to fight it off. If he gets a temperature, his team act as if it's an infection and he is given antibiotics (either orally or intravenously depending on how low his neutrophils are). Neutrophils are a type of white blood cell. They are the bodies first line of defence against infections. If they are too low (below 0.5) you are considered neutropenic and that risk of infection is greatly increased. Any time Hugo seems a little poorly, even just with a cold, I start to feel nervous at what might be coming. We end up watching him and his temperature very carefully with fingers firmly crossed. Hugo has been relatively lucky in comparison to other leukaemia patients and his infections have been few, but there have been enough of them for me to worry what the next cold will bring.
We have to be more aware of childhood illnesses such as chicken pox, as these can be incredibly serious for those with reduced immunity. His school notify us of any illnesses doing the rounds so we can keep him away from school if necessary and be on the lookout for any symptoms. It's also much easier for his team to treat him if they know what they are dealing with.
We avoid softplay and other places where germs are more likely to be lurking. We wash hands, a lot, and I always carry antibacterial gel in an attempt to reduce the risk.
Anaemia - the chemotherapy also effects the red blood cells. If they are too low Hugo becomes anaemic, which he has been. A lot. A normal range is around 110-130. Hugo's generally sit in the 90s or low 100s, even with an iron supplement, but have been as low as 80 (the cutoff for a transfusion being low 70s). Low levels of red blood cells result in tiredness and lack of energy, pallor, breathlessness, feeling cold and lack of appetite.
Tiredness - probably a more obvious side effect of chemotherapy. Not one that Hugo suffers greatly with, but he definitely doesn't have the stamina his big brother had at his age. He likes his bed and if he's particularly tired, will ask to go to bed early. If we are out, he will ask to get back into the wheelchair or sit quietly with me, even if there is fun to be had. He will often, determinedly, push through (because no child likes to miss out!) and then flake out within minutes of getting into the car.
Night sweats - these were actually one of Hugo's symptoms at diagnosis, we just didn't recognise it as such. More often that not, Hugo will sweat excessively at some point during the night. His hair, body and sheets will be soaking wet, often resulting in him waking up and a change of bedding. He sweats more during the day than other children too. A largely unknown, but very common side effect, usually worse when he's also taking steroids.
Sensitivity Physically - Hugo's skin is more sensitive to the sun, he often breaks out in a 'chemo rash'. His skin can be dry and low platelets means he can bruise more easily. At one point during his treatment he became hyper sensitive to touch. Getting his shoes on was painful, he couldn't manage to have his hair brushed and the slightest knock, drying him after a bath, or even a cuddle could result in tears.
Emotionally - Hugo can be shy and wary. Whether this is down to the leukaemia or just his personality we will never know, but I can't deny that Hugo has been wrapped up in cottonwool to some extent, that I have been over protective at times, despite my best efforts not to be. Sickness, a broken leg and a period of being unable to walk means he is used to being looked after, both at home and at hospitals and this has undoubtedly had an impact on his behaviour.
It will be interesting to see the changes in Hugo once he finishes treatment. After 3 years of treatment it's hard to remember Hugo before these side effects hit, and of course he would have changed so much during that time anyway. It's hard to distinguish what is caused by the drugs and what is the leukaemia itself. Maybe there are side effects we won't even be aware of until they fade away. These side effects are tough, but he hasn't lost his spark, he's still Hugo. My hope is that once he finishes treatment, that once he is free from the restraints of these side effects, his spark will continue to grow, that he will flourish and feel a glorious sense of freedom.
During our last appointment at GOSH, our oncology nurse specialist answered the all important question - 'what happens when treatment ends?' I've asked many questions relating to this along the way. Always hesitantly, not wanting to look too far ahead, not wanting to assume we will make it that far. One day at a time, that was always the way to deal with this, but sometimes the practical side of me would come out and I needed to know, I needed a glimpse into the next stage of our lives. Now we are here, now it was time to get the full story.
So, on Tuesday 18 September Hugo will take his last ever dose of chemotherapy. In the couple of weeks leading up to this date he will have his last IV chemo, his last course of steroids and his last dose of methotrexate (another chemo drug). He will continue to take two non-chemo medications for a few weeks after this, but the 18 September will be the date all chemo stops, his official End of Treatment date. The date we will count from, the date remission starts. The big, bright, light at the end of the tunnel date.
All being well he will have his port-a-cath (bumpy) removed at GOSH on 7 November, which is when he will ring the end of treatment bell.
For the first 6 months he will be seen at the hospital every 4 weeks, as he is now. We will remain under the shared care of our local hospital and GOSH. Many patients get signed over to their local hospital at this point, but given the issues Hugo has had with his walking, GOSH would like to continue to see him (apparently they are quite fascinated by him and curious to see how he gets on!). We will continue attending GOSH every 12 weeks and our local hospital at 4 weekly intervals in-between. This means that to begin with we will be at hospital as regularly as we are now, but after the first 6 months the appointments will reduce to every 8 weeks and then they will gradually decrease over the years, depending on any long term side effects he may or may not be dealing with.
He will no longer have weekly bloods, but the community nurse will visit once a month while bumpy is still in to flush it, which will reduce the risk of infection and clots. During this time we will have to go to hospital if Hugo gets a temperature as bumpy increases the risk of infection, so I will be keeping that bag packed and ready to go for a while longer.
It was explained that he may suffer from chemo withdrawal and get dry or sore skin as the huge amounts of chemotherapy he has received gradually leaves his little body. It will take around 6 months for his immune system to build up again and the first winter may be tough in terms of catching bugs and illnesses. We will need to remain cautious of Chicken Pox and he will need the flu jab (not the nasal spray) again this year. After 6 months he will need to have all his childhood immunisations again as the chemotherapy is likely to have wiped them out along with the leukaemia.
We then spoke about relapse. The ways in which it can come back (bone marrow as before, central nervous system or testicles) and the symptoms we should be concerned about. What is normal and what isn't, and what we should do if we are worried. They hope the treatment Hugo has received is enough, even with the breaks he's had (for illness and to try and improve the walking) but no one really knows, there are no guarantees. It seems so unfair that after all he has been through, all he has endured, that it's not fully over. That this worry will hang over us, probably forever. The fear of relapse has been very real during his treatment and I know it will continue to be the thing that keeps me awake at night.
So that's the medical bit, what about the rest? For the last 3 years we've had a plan of attack, we've had an enemy to fight. We have been pumping Hugo full of poison to keep him alive. Now, we just stop. We have to trust that it was all enough, to hope that it doesn't come back, that there is no lasting damage. That feels scary. Our much longed for freedom suddenly seems huge and overwhelming.
This is the moment we have been waiting for, the moment we have been counting down to for so long, but what do we do now? There's no going 'back to normal'. After 3 years, there's no going back full stop. It's exciting, but so many other things too.
It was an emotional conversation with a wonderful nurse who understands, who told me it's normal to feel this mix of emotions. That it's ok.
I feel guilty for feeling this way, for feeling anything other than happy. We are the lucky ones, there are hundreds of families who would do anything to swap places with us. Apparently this feeling is normal too. It's all normal, I know it is, but it's frustrating all the same.
This next chapter is scary and full of yet more unknowns, but it is also exciting and full of possibilities and that's what I have to remember, that's what I have to focus on. There is a new normal to discover, one that isn't clouded by leukaemia. Hugo has been amazing, he has shown us how it is done with his strength and ability to smile through whatever is thrown at him. I know he will continue to be just as amazing and if he can, then so can the rest of us.
One day at a time has worked pretty well for us so far, so we will continue to do just that. We will write the next chapter, the rest of Hugo's life, one day at a time.
I often get asked if Hugo is still on chemotherapy. Has he finished, or is he due another cycle? Treatment for blood cancers can differ from other cancer treatment plans. It is often long, in some cases life long, and I think this can be difficult to comprehend - I know it was for us when we were told his treatment would last for over 3 years. Hopefully this explains a little more about the medication, chemo and otherwise, that Hugo takes for his type of leukaemia (acute lymphoblastic leukaemia).
During the first 6 months of Hugo's treatment each phase was different. The drugs, the way they were administered, the length of the phase and the side effects all varied. We didn't know what to expect when we started each phase. What effect the drugs might have or what challenges Hugo might face. It was intense, scary and incredibly difficult.
Life in the final maintenance phase is a little different. Every cycle is the same, or at least they should be. The medication is less intensive. It's not easy, but it is easier. It's more predictable and we can plan a little more. We have slowly got used to the regular side effects and Hugo's medication is now a very familiar part of our family life.
As you would expect, Hugo is on a wide range of medication. What is possibly unexpected is that it's not all chemotherapy. There are a number of other medicines. Some deal with the side effects of the chemotherapy, others are supportive, while some are proven to improve the chances of riding his body of cancer. Some are introduced as and when needed, while others are constant. Every child who is being treated for leukaemia will have a slightly different list of medication, depending on the side effects they experience, whether they are on a trial, their age etc.
All of the medication Hugo takes at home is given orally through a syringe. An average day of drug taking for Hugo, during the maintenance phase, looks a little like this
Septrin - this is taken just on Mondays and Tuesdays. It's an antibiotic which helps to prevent and treat pneumonia, which Hugo is more at risk of contracting because of his weakened immune system. It smells and tastes of banana, which sounds nice, but Hugo doesn't particularly like this one.
Gabapentin - this one helps with neuropathic pain - the nerve pain and muscle weakness that is caused by the other medication he takes. Apparently this one doesn't really taste of anything so Hugo doesn't mind this one.
Sytron - this is an iron supplement. Every few months Hugo's iron levels drop and he has to take a supplement. It's bright red and doesn't taste very nice. Hugo tends to take this one first to get it out of the way.
Dexamethasone - once every 4 weeks Hugo takes a 5 day course of steroids. So if it's steroid week, this one is added to the list. It smells and tastes of mint and is probably his favourite one taste wise - not so much side effect wise!
Weetabix with a side of medicine
Gabapentin and Sytron again.
Septrin, Gabapentin, Sytron and Dexamethosone (if it's steroid week) again.
Methotrexate - this is a chemotherapy drug taken once a week, in our case on a Friday evening. It's bright yellow and apparently tastes horrible. It is the one that Hugo struggles the most with and it can take him a little while to build up to taking it. He usually gets a little treat to 'help take the taste away'.
The dreaded methotrexate
Mercaptopurine - this is the only chemotherapy drug that Hugo takes daily. It has to be taken on an empty stomach, so no food an hour before or an hour after, including milk. We give this one to Hugo about an hour after he has gone to bed because of the food limitations - Hugo is too much of a milk monster to manage 2 hours without it during the day. He now takes it while half asleep and doesn't really know he has it. It is pink and raspberry flavoured. I suspect it doesn't taste very nice. This is also the drug that caused his liver problem, which is a pain, given that it's his main chemotherapy drug. When Hugo comes to the end of treatment, this will be the last chemotherapy drug he, hopefully, ever takes.
Methotrexate and Mercaptopurine come under the family of cytotoxic drugs which means we need to wear protective gloves to administer them because of their level of toxicity.
Once every 4 weeks, alongside the steroids, Hugo has Vincristine - an IV chemotherapy given at the hospital. This is the only drug Hugo has regularly that is not taken orally. It goes in through his wiggly and takes all of about 5 minutes.
Vincristine going in via wiggly
At any given time, Hugo may also be on additional medication. He's had numerous courses of antibiotics, both intravenously and orally, for suspected infections. He's also had courses of vitamin D, medication to help repair his liver, eye drops, creams for various sore bits, and various other drugs to help with the complications of his condition or the side effects of the chemotherapy.
All this means that on a Monday, during steroid week, he will take around 11 doses of medication during the day. On another day, on a non-steroid week, it's 'only' 7 doses. We get through a lot of medication, syringes and blue gloves.
Our medical shelf in the garage!
Luckily Hugo has always taken his medication fairly happily. I find it a little sad that he doesn't question it, that it is just an acceptable part of his life, but I am also thankful that it is not a harder process, as I know it is for many others.
So, he's not hooked up to IV lines for hours. The medication doses are no longer at a high enough level that they cause his hair to fall out, or for him to be sick, or any of the other side effects that are so synonymous with cancer treatment. However we are, on a daily basis, giving him medications that are toxic with nasty side effects.
But they are also saving his life, teaching his bone marrow how to produce white blood cells properly and reducing the risk of the leukaemia coming back. There's not a question over whether to take them or not. It's frustrating that the very drugs that are saving his life are also doing him harm, but his life is our priority. Getting him through the leukaemia is our focus.
One day there won't be a box of medication in one of our kitchen cupboards and a stash of medical supplies in the garage. His breakfast won't be accompanied by a pile of syringes full of medicine and the side effects that come with them. We won't have to remember to pack bottles of medicines when we go out for the day or on holiday. But for now this is how it is.
Once a week a community nurse comes to our house to take some blood from Hugo via his bumpy. This blood is then sent to the lab and later that day, or the following day, we get a phone call with the results, which I write in our blue folder.
Our weekly record of Hugo's blood results
It is these results that determine the dosage of his chemo for the following week. The idea is to keep his bloods within a certain range so that his bone marrow learns how to work properly again. The results would also alert his team to any potential problems, from possible relapse to low iron levels. As well as the standard full blood count, Hugo's liver function, ferritin levels, vitamin D levels and chemotherapy absorption are also regularly tested.
The first step in the weekly bloods is putting the numbing cream on with a clear sticker over the top.
cream on and ready to go
This has to go on an hour before the nurse is due to arrive. This allows pain free access to bumpy. Bumpy is actually a port-a-cath or central line, which sits just under Hugo's skin and was inserted shortly after he was diagnosed. It links up to a large vein near his heart allowing for direct access and easier blood taking.
When the nurse arrives she prepares her tray full of syringes, flushes, antiseptic, blood bottles etc. Then Hugo strips off his top layer, we remove the cream and the nurse gets to work. Hugo likes to sit on my or his dad's lap for this part and over time we have developed the best position for giving the nurse good access and also for good blood flow. She cleans the area, inserts wiggly, flushes the line to clean it, gets the blood, flushes again to clean and prevent blood clots, then takes wiggly out.
Wiggly is a small needle with a tube attached to it. Once in place it can be used to take blood, as in this case, and also to give blood, platelets and chemotherapy. Sometimes wiggly gets left in, if we have a hospital appointment for chemotherapy the next day for example, but most of the time it gets removed after blood has been taken.
Hugo is generally very good and doesn't make a fuss. Sometimes I think he's just not in the mood for it and gets a bit fidgety or uncooperative, but who can blame him really. The worst bit for him is the antiseptic wipe because it's cold on his skin. Of course sometimes wiggly doesn't work and Hugo has to flap his arms or change position while we say 'come on the good stuff'. On occasions the nurse has had to take it out and start again, or we've ended up at our local hospital for some wiggly unblocker. If all is straight forward, the visits take about 30 minutes.
Every so often visits are more frequent than once a week. Sometimes the blood can clot between our house and the lab so the nurse needs to come back and do them again. There have been times when Hugo has been poorly, or one or other of the results seems strange, and they need to be done again a day or two later. In-between visits we are kept busy completing repeat prescription forms and trips to the doctors and chemist to keep our box of supplies full.
Weekly bloods have become part of our routine now, another part of his treatment that Hugo just accepts. The team of nurses have become familiar and friendly faces on this journey with their kind understanding for me and stickers for Hugo. It's another aspect of our life we have learnt to work around, to squeeze in and give importance to. We have to remember them when it comes to holidays or after school activities. It's not a huge inconvenience, but it is every single week and I'm pretty sure there are other things we would all rather be doing!
It will be nice when they are no longer part of our life, but the thought is also scary. These bloods and his general well being are all we have to go on to know if the chemotherapy is working, that nothing is wrong, that it's not coming back. It's difficult not too obsess slightly over them. I spend far too much time looking through the results in our blue folder, trying to see patterns, to be on the look out for anything strange, to be prepared for an infection, or worse. Generally there is no pattern, other than the week after steroids, when his counts always go up (which is perfectly normal). The thought of not having that safety net is a little concerning, but that's my worry to live with, I know Hugo will just be pleased not to be jabbed with a needle every week!
Hugo started the maintenance phase of his treatment plan in January 2016. It's the final phase of treatment and is made up of 12 cycles, each of which are 12 weeks long. However, each 4 week block is the same so we tend to count in months rather than cycles.
Celebrating the start of the maintenance phase
At the start of every 12 weeks we go to GOSH. 4 weeks and 8 weeks later we go to our local hospital instead. These are actually our only scheduled hospital appointments, but of course we've ended up with far more than that.
Outside GOSH with bunny
Our local hospital with some company!
Each appointment starts with obs - temperature, blood pressure, heart rate, height and weight. At the beginning of treatment Hugo would cry everytime his blood pressure was taken. Now, after nearly 3 years he doesn't cry, but he still likes to hold my hand, which is just fine with me. He knows exactly where everything goes, he helps the nurses and generally just lets them get on with it. Another part of treatment that has become second nature to him.
When having your blood pressure taken gets in the way of playing!
Getting very tall!
A bit of company and a different hand to hold
The main reason for these appointments is to administer a chemotherapy called Vincristine which has to be done intravenously. They also check Hugo over and it's our opportunity to ask questions and go over any concerns we or his team have - I usually have a list! Sometimes he needs to be reviewed by the physio, or it's decided he needs an extra test or scan. We also pick up a big bag of medication for the next cycle of treatment.
Vincristine going in
In addition to these 4 weekly appointments, we have had lots of extra ones for additional tests. There have been bone density scans, a nerve conduction test, x-rays, a heart scan, moulds for in-soles and an MRI scan. We have also had sessions with the physio, the psychology team and at the hydrotherapy pool.
The nerve conduction test - before it got painful
Bone density scan
There have been plenty of unscheduled trips and stays too. Anytime Hugo gets a temperature we have to dash off to hospital so he can be assessed for further signs of infection and have bloods taken. We then cross our fingers that we escape with oral antibiotics, rather than IV ones which need a 48 hour stay. We've needed wiggly unblocker and strange blood results investigated. There have been rashes, limps and gunky eyes that have needed to be looked at and there's been a broken leg. Any sign of illness has to be checked out because he is immunocompromised so the simplest of things can develop and become serious very quickly. We have also had week long stays for pneumonia and liver failure.
There are probably many others too that have faded in my memory or blurred with others. We always have a bag packed ready to go, just in case. Every cough, cold, rash, or strange symptom has me on alert expecting a possible trip to hospital.
Hugo has spent a great deal of his childhood at hospital. Visits are an inconvenient necessity, they are time consuming and there is always a lot of waiting around, despite the best efforts of the staff. We have to make arrangements for Henry and make sure he doesn't feel left out - because when you are 9 it seems unfair that your brother gets a day off school, even if it is for chemotherapy!
Luckily Hugo treats each trip to hospital as a fun day out, especially now he gets to miss school, and it's a credit to our hospitals and wonderful NHS that he feels this way. There are play rooms and wonderful play specialists making these visits easier and the time go by a little quicker. The nurses are kind and patient and have gotten to know our little man and how he likes things done.
Thank goodness for the TV!
Sometimes we're not allowed in the playroom because of risk of infection so the toys have to come to us
Although sometimes understandably wary, he is generally comfortable around doctors and nurses and within a hospital environment. He plays at being a doctor with his cuddly toys and has developed a very caring and considerate bedside manner.
Taking Bunny's obs
I sometimes wonder if his shy and sensitive nature has developed because of all the prodding and poking by strangers, because of all the times people had to hurt him, even with the best of intentions. He's spent a great deal of time in a world that most people visit only briefly. At the end of treatment our visits will be fewer, but they will continue for quite some time. I hope there are positives to be taken from this world. That he has learnt sensitivity and empathy, rather than fear and distrust and that it will continue to be a fun day out for him in the years to come.