Good morning to you all
Today is day 10 after high dose Thiotepa and like for like, day for day, Chiane is coping better than the first round of Thiotepa.
Feeding to the gut has now stop completely and all feeding is IV. Chiane had an ultra sound and it is showing inflammation is starting in her gut. Her bowl movements have also stop now. If we continue feeding through the gut it will be the wrong move, because her stomach won’t be able to cope with it. Since her bowl doesn’t move, any feeding will just blow up her stomach, and infections will kick in much much sooner.
Chiane’s skin is holding much better so far. We are working extra hard to protect her skin and it is also less sensitive to date.
We expected this round to be harder and rougher, but so far it has been good. The only thing that is slightly worse is her mouth. Chiane has one mouth soar under her tongue but we are working around the clock to fix this. We increased her homeopath medicines that is protecting her mouth, and her lips are looking very good.
Pain has kicked in and she is on morphine. The pain is mainly in her gut. She has not complained once about treatment, however she has cried a few times saying she is in a lot of pain. It’s not nice watching your child going through it and all you want to do is keep them safe from any pain and harm. The morphine is not getting rid of the pain. The morphine is just taking the edge of the pain to make her more comfortable.
Chiane is also starting to get a lot of pain in her bones. This is caused by the Thiotepa that wiped out her bone marrow and the CD34 cell (stem cell) transfusion repairing her bone marrow. It’s very pain full… The only way to describe it is that it feels like growing pains, just much much worse.
Chiane is coping mentally very well. Her spirit is high, although in pain, she is still laughing most of the time and putting up a brave face.
Chiane stop with chemo last week and Wednesday which means, today is day 10. With normal chemo’s, day 10 is the marker that it’s the lowest point before they start improving. With high dose Thiotepa, it is slightly different, day 10 is the marker that the rough ride is about to start. the next 2 weeks will be a very tough journey before Chiane will start improving.
We expect her gut to break down very quickly, and mucusitis will kick in.
We keep a close eye on Chiane’s plotassium levels, platelets and red blood cells. Chiane is getting every other day platelet transfusions and we are keeping her platelet levels between 20-60 to help stop any possible bleeding in her gut (which hasn’t started as yet). Chiane has received 2 red blood cell transfusions as well during the last few days. Obviously, her Neotrophils and white blood cells are zero and we expect it to be zero for at least 2 weeks.