The twinkle in Chiane’s eye is back!
Good morning to you all,
The big question that everyone want to know…how is Chiane?
To be honest she is doing VERY VERY WELL!
It was a rough 2 weeks and Saturday was day 10 after her chemo. Day 10 is usually the worst day and we are through the worst part. Chiane is improving by the day. This chemo is high dose chemo and is different to all the rest of the chemo’s she previously had. This chemo will be in her blood for 28 days which means, although she is improving now, we can’t stop bathing her thoroughly, we can’t stop with the cream and we have to continue with the intense mouth care. Should we slow down with any of the care she ya getting, she will slide backwards again. So it’s pedal on the medal and we continue with a tight regime. We cream her so much she looks like a snowman! Covered white in a thick layer of cream. If we stop her skin will break down again….10 more days to go with a tight scedule then we can slow down a bit re the cream and bathing… And we can start her homeopath medicines again to build her up!
So where are we and what is the latest news? Her mouth is very good. Mucositis is much better and much less. Her throat is not hurting anymore. We were deeply concerned about her skin but the skin specialists said its the best they have seen in a long time. The only way to describe it is to say its almost like a sun burn. Once the skin goes dark it peal off and break down. This is a sign that we use enough cream as a new “skin” has already been formed under the old skin coming off. It would have been a different story if didn’t do the skin care properly. Then her skin would have pealed off without a layer below it. Luckily this is not the case. This is typical what Thiotepa does. The skin changes to a dark colour and peal off. It was worse a few days ago but it looks better.
Chiane asked for water 2 days ago and we gave her water to drink – first time in 2 weeks. We held our breath and she kept it in, she didn’t vomit. Since then she had a few glasses of water. That’s a very good sign.
Latest scans have shown that her appendix is getting better. However, there has been no change to her typhlitis and her gut is still inflamed. We have to be patient and wait another week or so. She is still on morphine but the pain is much better!! She doesn’t vomit blood anymore but there is still a lot of blood in her poo.
As for school… Chiane did a few tests and she flew through her year 1 course. She started with year 2 curriculum. She is getting pampered every day now with a massage and she loves it.
Yesterday Chiane got out of her room for a short while and she had a word with doctor Matie. They have met last year for the first time in June just after her first brain operation. Since then he has been her doctor and visit her regularly to check up on her.
The twinkle is back in her eyes and she is her old self again. You can see in her eyes she was laughing at doctor Matie. She has much more energy. It was a rough ride but she is MUCH better and we can see Chiane recovering every day a bit more!
What comes next?
Now we wait for the blood to recover and for her gut to recover. It will now be a waiting game until she is all better, eat by herself again and has an immune system. Then we will decide what next. Chiane still can’t get any visitors but we will keep you all informed as time goes by.