Mind games

Luke has had a good first day back at home.  I haven't seen him unfortunately, except for briefly in the middle of the night when he woke up, as he was asleep when I went to work, and was asleep when I came home!  I will try to get a day or two working at home next week so at least I can spend a bit of time with him, even if it is just really at the beginning and end of the day.  If I work from home I save two hours in the car, and those two hours spent with Luke would be much better.

We did the first lot of drugs and top up feed without nurses supervising last night.  It's pretty scary stuff - I feel like we are dealing with a new born baby for the first time again! Everything is so tentative, and triple checking things, worrying that we are doing them wrong - is the morphine and anti-sickness dose exactly right, have we got the top up feed going at the right speed - not too fast into his little tummy to make him uncomfortable, but not too slow so that arms begin to ache holding this little tube of milk up in the air!  Everything is fine, it is just like treading on eggshells we feel we have to be so careful.  I am sure it will become more second nature soon enough, and believe me, it is worth it to have Luke home. Letitia has done two more doses throughout the day, and is managing tremendously well - she is amazing.

I have just read the formal letter from our consultant setting out Luke's case to date.  The consultant has told us several times that he had to write formally to us, and would try to set everything out in plain English as much as possible, and be as comprehensive as he can in the detail.  And he has - the letter is several pages long, and is very clear to read.  But even though it tells us nothing we didn't already know, seeing it written down in black and white is really hard.

Through writing this blog and looking for other people going through similar experiences to us, I have found two very special boys of Twitter who you may already be following yourselves (@harry_moseley and @Jack_Marsall_).  They are both suffering with brain tumours, and unfortunately Harry is in a coma right now.  I know it is a different type of cancer, and these boys are older than Luke, but my heart really goes out to Harry's family - they are honestly living through the nightmare that we fear.  Having been in a place for 24 hours where we thought Luke's cancer was untreatable, I can only begin to comprehend what both Harry and Jack and their families are contending with - and the bravery with which they seem to have faced this is a lesson to us all.  If you haven't already, look them up when you have a spare minute.