What happens next?

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.