Yep, as if the mouth ulcers and mucositis weren’t enough the poor little guy now has herpes in his mouth which adds another medication into the mix. The good news is that his Pancreatitis has subsided and his pain levels appear to be slightly better managed with a combination of the Fentanyl and Ketamin. He also seems a little more alert and was actually very distressed when I left this evening, which although absolutely heart breaking a reasonable sign that he has a bit more fight and energy in him. I even tried to cut him a deal that if shared his Morhphine and Special K I would try and take his pain away……….ooh if only I could. I honestly think that watching him in so much pain and feeling so helpless other than a push on the button of his NCA ( Nurse Controlled Analgesic) is pretty tough going for all to watch.
It’s just a waiting game at the moment for his bloods to improve which will give his body to fight all the infections. His Neutraphils were back to zero today although his overall White Blood Cell count was higher today indicating that tomorrow his Neutraphils should be back bigger and stronger than they were yesterday. Fingers Crossed!!
I had another good chat with his Oncologist today, Dr Santosh Valvi who actually apologised to the little guy for making him so sick. He acknowledged that Edward definitely sits at the severe end of the spectrum with regards to the side effects of the drugs. He reminded me that 20 years ago the cure rate for children with ALL was around 5% , and is now around 80%. He also pointed out that the current research into childhood cancer is about tailoring the treatment protocols to the individual based on the enzymes in their body, genetics and a whole lot of other tests. This would indicate that in years to come children will be given appropriate doses of medication to kill their cancer rather than a uniform, blanket zap that kills and destroys all and sundry. I guess it was a reminder the importance of supporting cancer research to better improve treatments and minimise what’s happening to kids like Ed.
Hoping tomorrows post brings an increase in Neutraphils to the little guy and an overall improvement to his health.