The heart of a fighter!
Good evening to you all,
I really do not know where to start. There is so much going on. Chiane is on so much medication, anything with an “anti” connected to it. Anti viral, anti bacterial, anti sickness, anti seizure, anti fungal the list is endless. Here is a few and this is only one round of meds…she has a few rounds every day.
Then there are transfusions… Almost daily.. Platelets platelets and more platelets with the odd red blood cells in between.
Chiane’s skin started to break behind her knees on both legs and it looks so painful I decided not to send a pic as it looks really bad and sore. Luckily, a new skin has formed underneath the old skin and it’s not “open flesh” but she is in a lot of pain.
Chiane does not vomit blood anymore which is good news. However, for the last 3 days she has been poo’ing blood…it looks like the bleeding is coming from the upper part of her gut. To complicate things further, Chiane has been treated for typhlitis the last 9 days and it’s still the same. Her appendix too is still the same…the doctors now believe Chiane might have both typhlitis and appendicitis. To say she is in pain is an under statement. They monitor Chiane closely. Since the Thiotepa stripped her gut lining wall, all the “good bacteria” in her gut are not not so good anymore. If she continues to bleed and a hole tear in her gut which is a big possibility we are in serious trouble. If a hole tears, and these bacteria and blood leeks out we are in very very deep trouble… So far it does not look too good but we are still hopeful.
It feels like we are taking one step forward and two steps back at the moment. Her mouth is still holding and she has no mouth sores but her throat is on fire. We are constantly treating her lips and as soon as it gets better they start to crack and burst again because of constant fevers..
On the plus side… Her bloods are “waking up”… With the odd low number reflecting in her bloods. Her white blood cells are 0.26, her neutrophils are 0.2 etc… It’s slowly slowly starting to show some form of life.
The next few days will be intense and the rough ride will get even rougher. Thank you for your constant prayers and support!
How is Chiane Mentally? Surprising very well. She stays optimistic and she is so brave. She had her moments when she cried of pain, which is understandable having both typhlitis and appendicitis on top of everything else. The pain drains her a lot, but when she is up and about the twinkle is still in her eyes. Today… Seeing her brother did her a lot of good…if you look at her diary and look at the pictures… Seeing her so strong and still smiling… Despite all this pain she is in… She has the heart of a fighter.