Now before Billy was diagnosed he and I loved getting away, wether it was somewhere sunny, somewhere cold or just somewhere fun we were there! I had travelled abroad a lot before I had Billy so I was confident about taking him away on his own just the two of us. He was quite a seasoned traveller, he loves planes, always did and usually is asleep within 5 minutes of getting on!
After he was diagnosed this all changed. Straight away we had to cancel the holiday that we had booked and it was in the middle of an intensive phase of treatment so the hospital wouldn't allow us to travel, looking back this was a good thing as he was in no state to travel when he was that poorly. To be honest i also became a bit scared to travel with him.
Its very daunting when you have a poorly child when you are away from home, for the first few months i wouldn't even stay at my families. I live a 5 minute walk from the hospital and this made me feel safe and secure, if anything happened I could be there within minutes.
Billy had a lot of hospital admissions within the first few months with infections and temperatures and he was constantly neutropenic. The hospital again aren't happy with you going away if they are the slightest bit under the weather, I can totally understand why if they are taken ill which can happen quite suddenly then its best for everyone if they are near a hospital that they know and that know him.
We booked to go to a local festival for 2 nights and that was touch and go right up till 3pm on the afternoon it started. We did go and we had a great time, the combination on new surroundings and fresh air and sunshine did him the world of good! It was so scary though, i must have checked his temperature 10 times a day! It was like a chemist in our Teepee too. The amount of meds we had were quite amusing! When they asked at check in if we had any glass bottles they had a shock!!
It also gave me a bit of confidence in being somewhere that wasn't 5 minutes from the hospital as well. I realised that we could go away, obviously providing Billy was well enough. We then felt brave enough to go to a Centre Parcs a month or so later and a couple months later than that we went abroad.
Although we can only go abroad for a few days at a time it is great, just what we both need and Billy always comes back recharged and looking so much better. We still look like a mobile chemist when we travel but we have it down to a fine art now. We try and get away a lot as it really helps both of us. Obviously we can't go abroad lots but we manage it a couple times a year. We do a lot of UK trips though.
Its a huge deal when we go away, the hospital need to know and need to speak to a nearby hospital. Billy needs to have good blood results and needs to look and be feeling well. We need extra insurance when we go abroad and its still a bit scary!
The end result is worth it. To have seen some of the places that we have been and the look on Billy's face when he see's some of the sights and people make it all worthwhile. To us getting away helps us a lot, its given us a lot of amazing memories. It also seems to help Billy when he is on the steroids, maybe the distractions and other activities stimulate his mind and stop the tantrums and mood swings.
Maybe its not the right idea for every child with Leukaemia but fpr us it works...
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