What is next for Chiane
Good evening to you all.
Chiane is home and it is a much needed break away from hospital.
Chiane is doing very good in herself. She and her brother are up to no good again but it’s a good feeling to watch them play. Her bloods are drawn daily at home and tested. Her blood counts are slowly recovering and we had some good news and bad news today re her blood count. The bad news was that her platelets were 30 today and that’s dangerous for brain cancer children. We had to go our local hospital for a platelet transfusion today. She is home again, it was only for a few hours.
The good news is that Chiane’s neutrophils are 1. That is a very good sign that her immune system is slowly but surely recovering. If her neutrophil count is 1 or higher tomorrow (2 days in a row) she can get visitors. We will confirm by tomorrow.
We have a strict and tight routine at home because there is just so many meds that Chiane needs to get and we can’t afford to miss out any on the hour. If we do it has a knock on effect for the rest of the day. All is going well but eating. Eating is still something we motivate her to do but we don’t force it. It is going slow. Chiane is on a feeding pump through the night. Every day we calculate what she manage to ate and drank on top of the booster nutrition feeding we gave every 2 hours. We deduct it from the total nutrition intake she should get per day and give the deficit during night time when she sleeps. During the day she has a lot of freedom and are only on a machine for 30 min to get her GCSF through IV. All her meds but the GCSF go through her PEG and and doesn’t require a machine.
Every morning we start early with meds to protect her gut and gut lining, then anti sickness meds follow 30 min later. After a short 20 min break, her anti seizure meds follow with 150 ml nutrition… Then she has a 2 hour break before we start a tight meds schedule but at least she is free to run around freely the whole day.
What comes next?
Monday, Wednesday and Friday she will need to go to our local for an hour each day to get anti fungal IV.
We are on the cancellation MRI list and waiting for a slot this week to become available. Chiane will get an MRI before Thursday at Great Ormond street and on Thursday we will sit down with the consultants to discuss the second round of Thiotepa.
Although Chiane is home, it’s still a crazy busy week running from here to there. At least, she sleeps at home and her brother is with her.
When will the next Thiotepa starts?
We don’t know; However, we do know that there can’t be a too long window period between the 2 thiotepa’s otherwise it defines the purpose to administrate this chemo in the first place. 4 weeks is too quick between the 2 chemos and 8 weeks too long, which means Chiane will need to get the 2nd round of Thiotepa within the next 2 weeks. We will be home this week and if all tests are going the way we hope it to go, then changes are she might start the week after with round 2 Thiotepa back at great Ormond street.
This last chemo… The whole experience of it was so far the toughest thing we had to face since the start of her treatment. To say it was a rough ride is an understatement and we have a lot to think about before we start the next chemo pending on the MRI results this week to come.
Will we continue with the 2nd round of Thiotepa?
It all depends on her MRI results and how Chiane recovers. If the cancer has grown then we will pull the plug. If the cancer shrank, then we will continue pending on Chiane’s over all recovery because her body took a hard knock.
We have been swamped with emails and we kindly ask people to be patient. We reply when we can but our time is very limited and Chiane takes priority above anything else. However, we do read every email and we thank everyone for their support!