Chiane starting to recover after Thiotepa
Good evening to you all.
Chiane came off chemo on Wednesday and Friday early evening was her worst day… I would say it was her lowest point yet. She was in pain, her lips were swollen and broken, she had severe mucositis, stomach pains, sore skin. She couldn’t talk at all or swallow. She was very sick.
I had a look at her schedule and spoke to the hospital staff. She is placed under a “tent” 3 times a day for 2 hours at a time just laying there. 2 hours in the morning, 2 hours in the afternoon and 2 hours in the evening. Why under a tent? She receives a special air to breath in to get rid of the infections she has picked up in her nose. We all know, the more you lay down the sicker you feel. I changed her schedule to a one off 6 hour shift during night time. We install the tent at 11 pm when she is asleep and remove it at 5 am in the morning. By the time she wakes up she is not even aware she was under the tent receiving treatment. This was a major psychological plus as she had the whole day free which I wanted for her. We had to get her up and about so that she could feel better. We bathed her and still continue to bath her 5 times a day and we use 3 different creams on her every time after each bath.
We use a homeopathic balm on her lips and within 2 days, her lips are sealed and healed. We use a 2nd cream on her bum and she has no redness whatsoever. The 3rd cream we use all over her body and we cover her in so much of it that she is as white as a polar bear.
We were asked to use a special mouth gel supplied by the hospital. The gel protects the mouth by “sealing” its walls, gums and tongue. We were asked to use this product 4 times a day. Did we? No!
My common sense is telling me that if I don’t brush my teeth and clean my mouth for 4 weeks… I will collect some nasty stuff in my mouth… And then to use a sealer everytime. So, not only is my mouth collecting dirt, the dirt is also building up and being sealed in my mouth. This sounds pretty nasty. No wonder so many kids struggle for weeks with sore mouths and mucositis. Instead, once she was on the morphine Friday night, we started flossing her teeth, brushing her mouth and using a homeopathic product called traumal S. How many times a day? – 5 times a day! It helps for mucositis.
Within 2 days, she has no more sore mouth. She can swallow and she can talk. The swelling has gone down a lot and her mouth is not hurting at all anymore. She came off the morphine this morning and she is not in pain anymore.
We submitted a list of homeopathic medicines we are using to the pharma department at Great Ormond street prior to the high dose Thiotepa, and they did an in depth research on our products we are using. To our shock they had no problems for us to use the traumal S. Her mucositis is more or less all gone.
We also submitted a nutrition feed that we believe is better than what she would have received at the hospital. After a pharmacist at Great Ormond street did his research, we got the green light to use our Nutrition feed instead of theirs. We started Friday night, 5 ml an hour over 12 hours and increased it last night to 10 ml an hour over 12 hours – not IV…but to the gut directly to kick start her digestive system. This was a huge gamble but it paid off! Today, Chiane did 2 poo’s for the first time in a week as she had not eaten anything for a week! You might think what am I going on about, but we were extremely relieved to know her gut is fine and tonight, she ate for the first time, 4 days after coming off Thiotepa! This was caused by the nutrition feed we used going to her gut and not using IV alone.
Her skin….she only has to red strips on her chest which was caused by sleeping on her wigglies (Hickman lines) one night. We are a little concerned about the 2 red stripes and cream it well for the skin not to break. To prevent this from happening again, we are now wrapping her lines with cotton wool so that if she sleeps on her chest, the lines don’t push against her causing brushes on her chest. Other than that, she has no broken skin whatsoever.
We have worked our nuts off since Wednesday to get her up and going again. By this afternoon, she was her old self again. She was playing, eating and had much more energy. She is talkative and we keep her busy as much as we can instead of laying in bed all day. She is in a very good place again and her old self.
What comes next? She will stay in hospital for at least 3-4 weeks for her bloods to recover and she will stay in isolation. However, we are now starting to repair her organs again and boosting her immune system again for the 2nd round of Thiotepa. We will continue to use these 4 weeks to as much as possible to get her in top form to handle Thiotepa again.
She has recovered remarkably fast compare to others. She went down hill on Thursday, hit rock bottom on Friday, and she is out of the dip by today.
4 days after high dose Thiotepa, and she is eating, her lips are healed, her mouth sores gone and we are keeping her mouth very very clean, mucositits is almost gone and she is up and about walking, laughing and playing.
The only down point at this time, is her balance. She is very off balance but it is the only defect so far.
Thank you to everyone that has been praying so hard for us!!!!!!!!!!!!!!!!!!!!!!
We had very little sleep, it was an extremely intense fully packed routine that we followed strictly and she pulled through. How amazing is it that she started eating tonight???