What Hugo Did Next

On the 18 September 2018, after 3 years, 2 months and 5 days, Hugo finished his treatment for Acute Lymphoblastic Leukaemia.

6 weeks later he had his port-a-cath (bumpy) removed and rang the End of Treatment Bell at Great Ormond Street Hospital.

This signalled the end of chemotherapy, steroids, weekly blood tests and all related medication.

So what has Hugo done since?

He has celebrated! There was a celebratory dinner, we partied with friends, spent a weekend at Thomas Land and took a family trip to Center Parcs during the first available school holiday. We were granted a wish trip to Paris and went all out on a big holiday to Disney World in Florida.

We have celebrated all the ‘firsts’ since the end of treatment. Christmases and birthdays feeling that little bit more special without cancer hanging over us.

We have relished the things we were unable to do, or were more difficult to do, while on treatment. Hugo has been on an aeroplane and abroad for the first time and we are now the proud owners of a puppy. We have found joy again in things we had taken for granted in our pre-cancer lives, things we had missed.

We have rested. As much as there has been celebration, there has also been recovery. The 3 years of treatment left all of us exhausted, both mentally and physically. We had to give ourselves permission to just be and ignore the pressure we were placing on ourselves to seize and enjoy every moment. To accept that it was ok to just spend a day at home relaxing.

Hugo’s walking has improved. His movements are more fluid and his legs have become stronger. He has more energy and as of September last year, he was able to walk to and from school without his wheelchair. His appetite has increased, although he is still very fussy about what he eats. He has lost the weight the steroids caused him to gain, especially around his middle and his face.

There have been wonderfully normal moments, like the loss of babyteeth, starting Beaver Cubs, school assemblies and sports days. All his immunisations have been re-done and it is hoped his immune system is now back to full strength again.

He looks well. He looks healthy. He looks happy.

We are happy. Life feels lighter and brighter. It feels good.

Of course, not all of it is good. The cancer experience doesn’t end the minute the last chemotherapy dose is given or the bell is rung.

We still have hospital appointments, firstly every 4 weeks, then every 8 and now every 12 weeks. It’s a more pleasant experience than before and offers the reassurance we need, but it is also a reminder of all Hugo has been through and what so many other children are still going through.

Although there has been much improvement, Hugo still isn’t where he should be physically and he is becoming more aware of the differences between him and his friends. It appears he is also suffering with processing issues, which can be caused by certain types of chemotherapy. He is behind at school and is undergoing psychological review to see what can be done to help.

While I am aware these problems are small in comparison to what might have been, how we are still so incredibly lucky, I also feel sad that his life will continue to be difficult. That new side effects may emerge and so much about his future remains uncertain.

There are days when we seem to have found a balance in our new normal lives. Moments when I can almost forget. I have been pleasantly surprised that the the fear and worry has not been as all consuming as I’d feared. However, there are days when I am convinced the cancer is going to come back. Where every bruise, hurty tummy or tiredness has me fearing the worst.

It’s difficult not to look back, to not feel the weight of all that has been. I don’t want to forget, we have overcome so much and the experience has shaped us all, but I also want us to be able to look forward with freedom, to hold onto that lightness. We deserve to be able to relish every bit of our nice new normal.

Hugo continues to amaze and inspire me every single day. His confidence continues to grow. He is funny, caring and still full of the spark I feared he would lose. I am still so completely and utterly proud of him, for all that he has endured and for all the love in his heart that continues to shine out. I can’t wait to see what he is going to do next.