Thankfully I really haven’t had much to blog about recently which is a good thing! However I wanted to make sure that this part of the post transplant journey is still documented!
Herbie continues to attend school most mornings from 8.50-10.30am. He still LOVES it! He’s reunited with friends, teachers & his beloved Sully dressing up costume!
We had hoped that by now he would be doing mornings only but there have been a few, albeit minor, spanners in the works. We were sent an email on January 19th containing blood results and a note saying that immunology numbers were low so we should remain vigilant and not up the school hours until further notice. This came as a blow because we really thought his numbers would be back up. He was sad that the promise of longer days in school had been retracted and it was hard on him. That said, he is clever enough to understand how important it is that we adhere to Waseem’s wishes, however frustrating, as they are all with his best interests at heart. We’ve come too far to start taking silly chances.
School is , as you can imagine, a double edged sword. After all of those months (over 13) of not attending it is an absolute joy to see that beaming face each morning and to watch as he does the normal things. He is often dressed and ready for school before I’m out of bed! He is keen to read every night and to do his homework. School brings him such joy.
As parents though it’s so much harder. My ‘illness’ & ‘germ’ sensors are heightened. Every cough sounds like a deafening gun shot in my ears and I find that children with green strings descending from their nose send me into a mild panic that I’ve never known before! I’m a primary school teacher for goodness sake, I’m used to the Winter terms being full of classes of children exhibiting symptoms like this but now the goal posts have changed. Now I’m a crusader, I’m always watching for signs of something that, mild and trivial to most children, could be potentially dangerous to mine.
School sent out a polite notice to parents asking for consideration, I was so grateful and happier still to hear that parents were ringing up to report their child’s absence through illness & citing Herbie as a reason for being overly cautious. Still my nerves are on edge. I look at children wondering, have they had chicken pox or been exposed to it? Did their parents vaccinate them? I never considered this before! When he’s not at school I try to break up the boredom of the day with trips to quiet child free places. These really don’t exist! Home schoolers, Pre schoolers and babies, again with barking coughs and snotty noses are in every nook and cranny.
“Keep him home then!” I hear you shout. Part of me wants to but this is a stage, like every other stage before it, that we need to face sensibly and with as much knowledge as we can. It too shall soon pass!
The medicines are still pretty much the same although we are weaning the steroid. As I type this he takes 5mg in the morning and 3mg in the evening. We hope to wean off the evening dose very soon and then he will stay on 5mg daily as a holding dose whilst we wean ciclosporin . This is much later than most of the other children that went through transplant at the same time but Herbie’s immune deficiency is rare and as his particular version of it has never before been documented it means they must proceed with caution.
On a positive note, and to prove I don’t wrap him in cotton wool completely, we went to watch the local village panto, Ali Baba. The girls were in it again and Herbie was so keen to go. Thanks to Bryony & Caz Woodruff for ensuring us front row seats so that Herbie could come and see (and not be surrounded by germs!). Also a touching moment during the evening was when Jaimie Bunting, who played Ali’s mum ,(and he looked fab in a dress although the girls did wonder how they would keep a straight face in Geography the following week as he’s their teacher!) called Rufus & Herbie up to the stage for a ‘shout out’.
Herbie loved every minute of the evening and couldn’t wait to get on the stage himself!
Other highlights have been learning that our fundraising for GOSH continues to grow, putting us in the top 1% of fundraisers
Herbie continues to hear from the wonderful Hope , who sent a fab birthday card and gift of Moshi gloves and hat etc just in time for the cold snap. Thank you Hope!
We hope to update again with more positive news soon. In the mean time I wish you a happy and healthy February…