Monday, 13 May 2013

Update 17/4

Yesterday Wotsit successfully had his portocath inserted (a line that goes directly into his side). It sounds terrible but is actually amazing and means no canulas required in his hands. This stays in for the 3 years of the treatment to enable his drugs to be administered easily. However, the line (that dangles on the outside) is removable and the 'hole' is effectively under the skin so when we're not in hospital, Wotsit doesn't have to have any dangly bits so can still run around and wreak havoc when he feels up to it.

When asked he says that nothing hurts so don't think it's too painful. However, once he's had some painkillers, he seems a bit happier so guess he must be a bit sore.

Following yesterdays bone marrow sample, Wotsit's diagnosis was confirmed today as ALL which is good news. It's the most common and most treatable form of leukaemia. His age and his white blood cell count (whilst high, it's not in the really high category) also go in his favour meaning the survival rate for this type of leukaemia is in excess of 90%.

His treatment starts tomorrow. This is the induction phase and lasts for 4 weeks.  It comprises one steroid med, taken orally for 28 days, and two chemo drugs (one given intravenously five times during this period and one injected twice).  He'll probably end up on other meds to help combat the side effects - anti nausea drugs etc.

On day 8 of his treatment (next Thursday) another bone marrow test will be done. If this is okay, we may be allowed home on Friday or Saturday. We are already very excited about this!  

We're still awaiting the results of the lumbar puncture which ascertains whether the leukaemia has gone into the central nervous system but there are no early indications that would lead the docs to think this is the case.

Other things we learned today -

It's probably a couple of months before he's back to school. It's mainly down to how he feels post chemo. He may be able to do more a bit sooner, we'll see.

There are 5 treatment phases in all. The first four seem to last about 7mths, if everything goes swimmingly. Then the final maintenance phase continues for c3 years.

Infection control is crucial.

Oh, and Wotsit's scared of the hospital clowns...

Think that's about it. Hope that's not too much detail. Pickle is good, v happy to visit his brother today. We are also doing okay, just tired (combination of snoring parent opposite, creaky nhs bed and Wotsit weeing every 2 hours because of the amount of fluid he's being given to flush his kidneys).

Finally, just wanted to say a big thank you for all your good wishes. If good wishes could fix our boy, we'd be home by now.

No comments:

Post a Comment