MILAN treatment plan
Good evening everyone
Chiane will start with co-trimoxazole (Septrin) soon. It is an antibiotic and is used to prevent and/or treat a particular chest infection called “pneumocystis carinii pneumonia” or Known as “PCP”. All of us have an organism (bug) in our lungs called PCP. Children receiving long term drugs, which interfere with the body’s ability to cope with infections, may be more at risk from this type of pneumonia. They get raised temperature, rapid breathing and a dry cough. Septrin is given to prevent her from getting sick due to this bug in her lungs. The most common side effect of the antibiotics is bone marrow suppression that might lead to her being anaemic for a period of time. She will also become sensitive to sunlight and we have to use a SPF50 factor sunblock and a sun hat!
How is Chiane doing? Remarkably well. She has no side effects. She is eating, drinking, running around and playing. Everyone says she is a “little character”, always laughing, always making people laugh and she is an extremely positive person. They are now “flushing” the first 2 chemos out of her body with LOADS of Sodium bicarbonate and she does wee a lot! Lol
We are fortunate – that’s all we can say! A lot of you emailed us asking what we have chosen regarding yesterday’s email.
These choices had to be made BEFORE therapy started of course and we have chosen quality. No one explained to us the “challenging choices”… We had to figure it out for ourselves and you have to think on your feet! The MILAN treatment plan is strong but not as strong as other treatment plans that we have found. These stronger plans have a higher success rate, but a much lower quality of life. MILAN is the best for a quality of life, even though the success rate is lower. Of course, the goal of the MILAN treatment plan is “a complete recovery” but the success rate is lower. It is important for us that Chiane has a quality of life once the treatment is done…will she relapse? Will she live 12 months? 24 months? 60 months? Have a long life and become a grandmother one day? Who knows! Time will tell. BUT it was important for us that, whatever time she will have, it has to be “as normal, quality life as possible”. We believe, we hope and we pray she will be cured completely. We are optimistic and we believe she will fight this and have a long life! So, quality is important!
This is why it was sooo important for us to do our research and to scrutinise everything and know EVERYTHING BEFORE we signed the consent forms. So we know all the defects and side effects of her treatment plan once she is done;
like the hormones that I described yesterday. There are few more, which I will go into before she starts her radiotherapy. BUT we had a CLEAR picture of all the treatment plans and defects they cause, and we have chosen the MILAN as the defects still give a child a “fairly quality life” for those few that make it!
Thank you all for ALL the wonderful emails. Someone sent us an email yesterday that gave me goosebumps! She said and I quote: “Keep looking up and just remember there are hundreds of prayers going up to the throne of heaven. Imagine Chiane’s name is continuously being heard in heaven. Amazing.”
It is people like yourselves that are praying for us and we can feel the power of your prayers.
Thank you all for your support. You have no idea how much it means to us and you all carry us in one way or another…..