9. Jul, 2016

Technical Side of Things

Amelia and Tracyann are home after 4 nights at the QEQM and 2 nights at The Royal Marsden. This was due to the infection in the PICC line, which I'm glad to say is now under control and being treated, this is what happens when you have to put a tube down a vein.

So Thursday is .......

Lumbar day, The Royal Marsden didn't want to miss this so Amelia was transferred from QEQM to RM, this was all scheduled for an 0600 leave and to arrive at The Royal Marsden for the procedure at 0830, this ment that Amelia had to be nil by mouth from 0230. This is where we experienced the third party control or lack of it!

The hospital transport didn't arrive until 1000 to take the girls, this now ment that the whole plan was put back by 4 hours, which also ment Amelia's nil by mouth was extened by 4 hours, not good, a 6 year old hungry in good health is bad enough but one on meds is another story. I have to say at this point that the Rainbow Ward at The QEQM and The Royal Marsden are not to blame in anyway, shape or form. It was a basic lack of communication within the hospital transport department, contracted to G4S!

Thursday afternoon got better, as the wonderful teams at The Marsden all stayed on (no theatre on Thursday PM) to get the lumbar done, they also managed to administer all the meds for the infection and some of the missed chemo while Amelia was asleep, so good news. Although Amelia did wake up half way through the injection into the leg as not enough anesthesia was put in, so more needed!! 🙃

So we are all at home with a little break from hospitals, we are due at The Royal Marsden on Thursday, but we do have enough medicine at home to start a branch of Boots!


I'm trying to use this blog mainly to update people on Amelia's progress and I hope I've been doing ok. However, as I start to use it more, I have found myself referencing it for bits of information.

So I wanted to include a bit more of the technical side of things.

Amelia's white blood cells are now at 0 - as I've said before she is very prone to infection. The chemo is working well and doing what it should, there are some side effects now starting to kick in. Amelia has responded very well to the meds, we are in "Induction" stage, so block 2 week 4.

Amelia will be treated in 5 stages -

1. Remission Induction - This is to destory all the naughty blood cells - 5 weeks

2. Consolidation Therapy - Once there is no sign of the leukaemia, you will need treatment to stop it coming back - 10 weeks (due to genetic disorder), there is a MRD test (big day) towards the end of this stage to understand where we go next. 

3. Interim Maintenance Therapy - Less intense programme - 2 months

4. Delayed Intensification - Exactly what it says really, hard hitting when the body has low naughty blood cells - 7/8 weeks

5. Maintenance - Longest yet gentle phase, to stop relaspe - 2 years


So far to date Amelia has had -

Bone Marrow Aspirate - 1

Chemo Sessions - 10

Blood Transfusions - 6

Steriods - 14 day plan

PICC/Port - 1

General Anesthetic - 5

Ambulance Rides - 2

Blood Draws - 9 days since 16 June (taking approx 4 tubes at a time)

Nights Spent in a Hospital - 15 (8 in isolation)

Sorry if this has bored you a little but want to keep track in a way.

Dan x