After a day of starvation before having her operation cancelled at 5pm she went to bed exhausted and another day behind in starting her chemo. Charlotte could not eat again whilst waiting for a spot on the emergency operation list again today. Finally, at lunch they started preparing her for surgery. Rod and I were so excited. The thought of another day of starvation was more than we could get our heads around before a year of debilitating chemo. I left her this evening sleeping peacefully after her port was implanted. Rod said that she ate all her dinner and was playing with her favourite red car in the new toy room at C2 West. What a trooper!

 

 

CHEMO TOMORROW….. We are quite anxious about tomorrow, yet happy to start what is another step on Charlotte’s road to ridding her body of this cancer. C2 West staff are generous, efficient (so far) and approachable. It is a somewhat calmer environment than C1 North. The specialist staff, play therapist and doctors all visited Charlotte this morning to check how she was settling into her new home away from home. We have been blessed with amazing doctors who genuinely care about her medically and love to visit her just to say hello.

 

 

I thought I would include a few medical details about Charlie’s chemotherapy protocol:

 

 

She is on a 14 day/ one year protocol

Based on a UK and European clinical study published in 2007. It is following the latest information regarding anaplastic ependymomas in children younger than 3 years old, stage III (aggressive)

In the clinical study the protocol avoided or delayed radiation in a substantial proportion of children without compromising their survival.

Cycle = 1 day/night in hospital, 13 days out, 3 days in hospital, 11 days out, 1 day/night in hospital, 13 days out, repeated for approx. one year.

Each day = a different combination of drugs which is part of the protocol will be administered through her portacath.

We were given four A4 pages of side-effects for each specific drug. Here are just a few:

- nausea, vomiting, low red blood cells, low white blood cells and platelets, loss of appetite, damage to hearing, impact on kidneys, hair loss, rashes, slow healing wounds, infections, jaw pain, headaches, dizziness, fever, sensitivity to light, infertility, etc, etc……..

We have been told to expect regular blood transfusions, the use of a nasal gastric tube for feeding, regular visits to hospital when she is febrile and much more.

Rod and I have questioned such a protocol especially when she looks so well and is doing wonderfully. If it wasn’t for the massive scar you wouldn’t even know what she had been through. But with such a large and aggressive tumour as an AE’s relapse is inevitable without chemotherapy, until further decisions about radiotherapy can be made.

So, here’s to a tough year for our Charlotte. Let’s hope that some how she can weather the hideous drugs and she is spared some of the horrific side-effects. We are all nervous and I am certainly petrified for her. We will need regular prayers and positive thoughts to get her through this next stage.

Love,

Beck and Rod xo

PS Happy Birthday to Scott, Happy anniversary to my parents for yesterday and best wishes to those who are celebrating special days.

PPS We are glad that Dave and Vanessa are on the road to recovery after experiencing the dreaded gastro bug!