Its been 38 days since my last update and during that time we have had a wonderful christmas and welcomed in 2016!
I hope you all enjoyed the festive season. I know some of my readers will have spent it in hospital nursing their own children through bone marrow transplants, but I hope that everything is going smoothly for you all. I remember spending Seth’s first christmas in Great Ormond Street. We were lucky enough that he had his transplant 8 weeks earlier so we were given permission to return home for the day. It was a 2 hour drive so it was a busy day but it was lovely to be home all together. A very quiet Christmas Day but it was everything we wanted at the time. As you can see from the photo’s at the time Seth was on a very high dose of steroid as he had already got GVHD.
Last Christmas, i will be honest, I spoiled Seth. I couldn’t admit why, but I wasn’t convinced he would get another Christmas. Although a few weeks before I had asked Seth’s consultant if I was watching him die, and was assured I wasn’t; I still was not convinced. My dad had come over for Christmas as he lived abroad, it was a good happy Christmas, but there was a dull ache or worry inside me.
Then fast forward to Christmas 2015!! The best one yet! A child’s first Christmas is considered memorable, as should be every single one after…… we always thought we had great Christmas’ with Seth, but this one proves that the rest he did not have the energy to enjoy fully. Don’t get me wrong, I know that there are children in the world who’s Christmas and life do are far from as privileged as Seth. But as a parent you want to do what you can to make everything memorable. When he was feeling so rubbish, that ability was taken away from us.
December was a flurry of excitement for Seth. This is the first year he has really got excited about the build up, he talked about Santa and his Elves a lot and made up stories about what they would be doing. He loved counting down to ‘the big day’! On Christmas Eve I thought he might actually explode!!! He put a carrot and some food out for Rudolph and the rest of the reindeers, and a bottle of beer and mince pie for Santa. I was surprised at how easily he went to sleep and that he did not wake us up too early in the morning! When we went downstairs he entered the living room and whispered to himself “he’s been” with a big smile! It was amazing to see!
We then said goodbye to 2015. As we all do I reflected on the year, and I have to say…… what an amazing year! Starting the year with devastating news, we did not think Seth would see 2016, and yet I am sat her typing this with him asleep upstairs after he has spent the day at school! We never thought we could have got this far! Also 2015 was the year we saw amazing support for #wearyellowforseth from around the world. It helped us through some very hard times. We have recently seen another increase in interest as Seth’s video has been posted on Ellen Nation. You can vote by pressing on the green up arrow above the video (if you like) for it to be on the Ellen Show.
Seth is back in school full time now, mixing with the class like an ordinary healthy child. He loves it. He started the year just going a few hours a day, but then when he spent the whole day there for a dinosaur visitor he did really well and he has done full days since. He got a certificate in the assembly at the end of the first full week for trying hard at everything and for bringing his smile to school.
I have returned to work full time as well, so it’s strange not being home all day with the boys, but it is nice to get a bit of normality – although there are never enough hours in the day!!!! So apologies if I don’t get updates all that regularly.
Energy wise Seth is improving all the time. His hyper mobility is still there and he does still struggle to jump and run, but he is doing more and more each week.
His skin is still very good, we haven’t seen any signs of GVHD (touch wood).
His hair had started to fall out again and the white patches were once again growing. This was making me feel really anxious, this happened on the build up to his last transplant finally failing. However, it turns out his scalp has overgrown skin, almost like cradle cap (but not) which is common for people who have had a compromised immune system for a long period of time. At present we are trying to treat it with a special shampoo, it seems to be improving slowly. If it doesn’t work though we will have to try a sort of acid that we would need to put on his head for an hour a day.
Immunology wise things are great! We had a visit to Newcastle today to see Andy and he is very pleased with him, he says that its now time to concentrate more on the secondary concerns like his growth and weight. Seth has been growing in the last 6 months, but his weight has been pretty static, he is currently 12.8kg, only 2kg heavier that he was a year ago and three months ago he was 13.6kg. He is still on an overnight milk feed of 500ml (a high calorie milk feed) and his relationship with food has improved significantly. He is now eating 3 meals a day, however, he won’t eat anything with sauce so getting high calorie food into him is a NIGHTMARE! His favourite foods are Carrots, ham sandwich (no butter), Popadoms, Popcorn, sliced ham and cous cous…..its really difficult to get anything else in him. So we keep persevering and encouraging to try new things.
I no longer take it day by day, i am still on edge if something happens, but now its more about giving Seth the opportunity to live, rather than fighting for his life.