Sunday 6th July

OK – be prepared. What follows is technical stuff. I won’t bore you with this sort of detail every day – we’ll try to keep more light-hearted …

Today is Day 10 of Cecile’s protocol. Let me explain. Once Cecile had been admitted to hospital and her leukemia (ALL – Acute Lymphoblastic Leukemia) had been diagnosed, she started on the Fralle 2000 BT protocol which is followed here in France.

Day 1 she had an operation to fit the catheter through which chemo will be passed. She also had a lumbar puncture with a first injection of chemo. This led to nausea and vomiting for two days, during which period Cecile didn’t eat. After the second day she was given a sufficiently strong medicine to stop the vomiting. 

Her appetite resurfaced with a vengeance.

From Day 1 to Day 42 Cecile will be on corticosteroids. To avoid side effects, she has a salt-free, sugar-free diet as mentioned before.

There are about 7 different phases to her treatment lasting up to two and a half years.

Phase I was from Day 1 to Day 7 when she had corticosteroids. On Day 7, she needed to have less than 1000 white blood cells, which means that she reacts well to the corticosteroids (cortico-sensitive) which is a good omen.

Since Friday 4th July, Day 8, she has been on the follow-on from the initial phase. During this phase she has regular bouts of chemotherapy. Apart from the lumbar punctures when the chemo is to protect the meninges (the membranes which protect the brain and the spinal cord), she will be having three different types of chemo. They all have potential side effects which are monitored by measuring her heart beat, the level of oxygen in her blood and her blood pressure (along with the daily blood tests which test all other levels of the different components of the blood).  This phase, which I shall call phase 2, lasts from Day 8 to Day 21. She will continue with corticosteroids every day and on days 8, 15 and 21 she has three chemo treatments. In between she has extra doses of chemo and on Day 9 and Day 16 she has a lumbar puncture with the preventative dose of chemo to protect the meninges.

On Day 21, she is given a myelogram. This is where they take bone marrow from Cecile’s hip. This will tell us whether or not she is reacting well to the chemotherapy. If she is, she will continue with the same protocol. If not, she will have to follow a different protocol with slightly stronger doses of chemotherapy. 

The end goal is the same.

Because she is cortico-sensitive, we have every hope that she will also react well to the chemo. We have explained all of this to Cecile and she is very positive. She believes in us – we are telling her the truth – and needs us to help her get through this.

She is getting tired – at the moment she has reached the state of aplasia which means that she has no immune defenses. When we go to see her we have to wear masks and gowns. A small price to pay to spend time in her company. She is illuminating with optimism and really a lesson to us all.