Despite the fact Dylan has now finished treatment, things feel uneasy in our house. It feels a little like one door has closed but another one has opened and we are now looking more at the long term side effects and complications the disease has caused..
The recent CT scan showed very little improvement which was disheartening. In truth the reason we have previously seen such drastic improvement on scans is because the cysts were bursting. We can clearly see where large cysts once were by the scarring left behind. The cysts that are remaining are obviously not high risk of popping which is good in the sense that it takes away the risk of lung collapses, but it does mean they won't just 'go away'.
There is little known about Pulmonary LCH in children so there is nothing to really base a prognosis for Dylan on. In the few studies out there, some surviving patients have cysts remaining all their life, others they gradually resolve over the course of 20 or so years but it obviously would differ based on severity. For this reason he will be reviewed regularly of course but it worries us daily. He also has scar tissue where cysts once were which will have implications on how well his lungs work. He may continue to live a happy and normal life or these issues may impact on his breathing more as he grows and he may require a transplant still to buy him some extra time or improve his quality of life. People ask us his life expectancy and to be truthful we do not know and it is not a question we like to answer as it is still likely we may outlive our child, and that is a something no parent wants to ever face.
It may come back... relapse rates in LCH are unclear. There are lots of statistics out there but Dylan doesn't really fit into any of those as he has what is considered 'adult type' PLCH but to give an idea, the relapse rate for high risk organ LCH is approximately 54% with most relapses occurring within the first 12-15 months. Infact some people relapse within weeks of treatment finishing. Also unlike some other types of childhood Cancer.. LCH isn't limited to one system, just because Dylan had it damage his lungs doesn't mean it would happen again. It could quite literally come back anywhere and without doing regular full body MRI scans which are not practical there is no way of knowing until symptoms show. So every ache and pain could be a sign of it coming back in a bone, any rash could be it effecting his skin, any sickness or bug could be it effecting his GI tract, liver etc. LCH is a tricky little buggar.. described by a fellow 'Histio mom' as the honey badger of diseases as it does whatever the hell it likes and now our 'safety blanket' of Chemo has been taken away!
At one point before diagnosis was made, I was told Dylan likely only had 'months' rather than years left, so any improvement on that is a win for us and we will take every second we have with him as a blessing. It is impossible not to worry about the future, but you cannot let it impact on living life in the now.
But then sometimes even living in the moment brings worries to face daily and bridges to cross in the journey... For example, Dylan hasn't gained weight in the last six weeks which has me a little concerned. He has been constantly unwell lately, and fighting off illness can burn more calories so I am going to keep a close eye on him the next few weeks now his body should be recovering from Chemo and be able to fight off viruses easier. I am hopefully this is just a minor blip and not a signal of any underlying problems.
People will be expecting us to slowly go back to 'normal' I suppose now, but I don't think our life will ever be normal again. Every single day for us will be lived in the fear it is our last.. for we never know what is around the corner for any of us...
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