One Day At A Time

It’s been an interesting week.

Although it is more likely that a sibling will be a match, it’s not always that likely.  There was a one in four chance that one of the girls could help Ben, but we found out on Wednesday last week, that unfortunately, neither the girls or James or I were a match for him.

James and I sat in contemplation for a short while, after explaining this to the children.  Ben found the whole thing rather amusing and has remained buoyant and we decided to start a mini campaign to find a bone marrow donor and raise awareness, which has so far received more support than we could ever imagine, which has been amazing!  Keep signing up, folks, you are wonderful, thank you.

Ben has managed this week to play with some Lego, even if that meant laying down to do it.  He’s managed a little food and some drink while on a break from the feeding tube, although not quite enough fluid on some days.  It’s been a bit of a balancing act trying to increase his calories, while ensuring he can still have enough time to eat normal food in between the feeds, as too much or too little can make him feel a tad under the weather and it’s baby steps.  This morning (Sunday) he has enjoyed five chicken nuggets and a piece of apple for breakfast and as far as we are concerned, that’s a great start to the day.

On Friday evening, he managed a movie (Cars 3) and a little pizza with his sisters and some of the children on the ward, which was quite a step forward for Ben and as his blood counts slowly come up again between treatments, this will happen more and more, we hope.

In all honesty, it’s very hard to describe the true reality of what actually happens day to day on this ward and the emotional rollercoaster you find yourself on; laughing one minute and making a cup of tea in the kitchen the next, just to shed a few quiet tears.  Seeing the children so strong, is humbling.  These children are so special, so amazing, so courageous and it makes us, as parents, the strongest we could ever be.  You make fast friends in these situations and we become the supporters and cheerleaders for our little champions here.

Situations can change in a matter of moments and you have to be poised to deal with them and in those times, be strong, too; like picking up the hair from the pillow as it falls out.  That’s a stark reminder of the journey you’re on and why you stay strong.  Ben is strong and thankfully has the best sense of humour and he is in control of his hair at the moment and is leaving it as it is and taking things day by day.

After five weeks, the routine, (which is no routine really – just managing day by day in this new ‘normal’ we find ourselves in) is slowly becoming easier.  We all take things day by day, hour by hour, minute by minute.

Yesterday afternoon, we were told that Ben’s neutrophils are moving up very slowly, which is good news, though keeping him infection-free is still crucial.

The bed is needed here, so on Monday, we will move to Portsmouth QA, then come back on Tuesday briefly for a bone marrow aspirate.  This will tell us how Ben’s cells are doing after the first round of magic medicine.  We will then be settled in Portsmouth for a few days, before starting the second round of chemo again back in Southampton hopefully fairly soon after.

A bit of a juggle this week, but we’ll manage inevitably, as we do and will keep our fingers crossed for a match and for the counts to continue moving up and his weight to do the same in the coming days.

www.anthonynolan.org – under 30 and www.dkms.org.uk/en for over 30.

Thank you as ever, your support means the world to our family xxx