Sometimes it's hard to see the bigger picture when you feel like you're drowning in hospital appointments, Chemotherapy, health scares and the day to day caring for a sick child. Sometimes information changes, appointments change, treatment dates change and the light at the end of the tunnel seems to get further away rather than closer..
I've always been a very grateful person, even before all of this, and I try my utmost to appreciate life and all it's ups and downs. I've always felt that somebody, somewhere is always worse off and wishing they had what you may take for granted. But we are all only human and sometimes we all have moments where we just feel overwhelmed and fed up.
We've had a good few months since Dylan was discharged in May.. in fact it won't be long before it's been a year since his little Easter 'miracle'. Aside from one major infection, some snotty noses and antibiotics for chicken pox exposure, we've been fairly lucky. I just wonder how much longer our luck will last sometimes.
Dylan had another CT scan last week and we finally got the results today and yet again they are amazing, lots of cysts gone and mostly just the larger ones remaining. The plan now is to continue with the Chemotherapy the same as it is and review it in August again potentially with another scan.
We still don't know when Chemotherapy will be finishing officially but we do now have a vague idea when his end of treatment review might be. Unlike with other Cancer's there is no set timeline or protocol to follow. No standard tests and no statistics to show that 'this amount of Chemo will get rid of the disease.'
They had talked about running a few additional tests to see if they can tell whether the LCH has now gone but short of doing another biopsy (which is too risky) there is no way to really know. You see the leftover cysts aren't actually the disease, they are just the damage it has left behind and no amount of Chemo in the world will fix them.. that is his body's job to try and do that.
It can all feel never ending sometimes.. another blood test, another chemo, another scan. The main thing to focus on when you feel like you're drowning is living every single day to it's fullest and fill your life with happiness whenever possible to keep yourself afloat.. <3
