The Christmas That Shouldn't Be..

T-minus one week to Christmas, in fact this time next week it will all be over.. but I am just waiting for something to go wrong.

My husband is on almost constant late shifts because of his job and the busy time of year. I've taken to going to bed at 8/9pm ish in my clothes (just incase) and attempting some form of broken sleep until I know he is on his way home and then I relax a little..

I've gone from checking his sats 3/4 times a day to double that or more if I'm having a particularly bad day. Checking his temp more than usual and now checking his line clamps, that are VERY securely taped, over and over again. I think the closer we get to Christmas Day, the day this journey really began for us, the harder it becomes to put the past behind us. Hopefully this will fade away in the new year, but that also brings it's own milestone dates.

Somebody once wisely said, this will always be the case in some way. There will always be another milestone, another important date. Even after treatment may finish it'll become.. 'six months post treatment' then 'one year, 'two years', etc. There will always be the fear of relapse. Some relapse almost instantly, others take years. The highest rate is usually within the first three years but Histio is the Honey Badger of all diseases and does whatever the hell it likes! It may come back in the same spot, it may pick a whole other organ to attack. It may never return.. nobody knows.

Those are the things you cannot worry about. You could be hit by a car crossing the road just as easily. If you spend your whole life worrying about the future it ruins the moments. The past also has a nasty habit of telling you, 'you should have done this' or 'what if you'd done that?' and those voices are a little harder to ignore. We constantly question whether there were any signs of symptoms leading up to Christmas Day and that is what I am doing a lot right now and making sure we aren't missing any new ones that signal any issues. I do not want an ambulance ride for Christmas this year please Santa.

Bloods tomorrow morning, these are being done at nursery again. I will be checking his clamps are taped properly the second he walks through the front door!! Then nursery again on Tuesday but then they break up so straight off to the hospital for Chemo at lunchtime and we will be taking treats with us to give out all being well. After it is done we will bring home his last three doses for 2016 which the community team will give the rest of the week.

We are hoping for no infections, good counts, no reactions to chemo or heaven forbid a collapsed lung (it'll be 8 months without a drain if we make it to 5pm on Tuesday).

I know lots of parents are spending this Christmas at the hospital this year, we did last year and I would like to avoid it if possible. BUT I also know a lot of parents are spending this Christmas with a child in heaven and my heart goes out to them. I feel a deep pain for them that this time last year I wouldn't have understood. Everybody feels sad when they hear of a child gaining their angel wings but as a mother whom has stared into that abyss from the edge I feel so much in my heart for their parents that it brings me to tears and I cannot even comprehend their strength. My heart goes out to all of you!

All I want for Christmas this year is a relatively happy and relaxed day with my beautiful family. Preferably all happy, healthy (ish) and in good spirits. If we end up in the hospital it's fine, it wouldn't be ideal but it's fine in the grand scheme of things because let's face it... it could be worse and it so very nearly was.