Hi,

so sorry to hear of your news - it's heartwrenching and the waiting is so hard. 
It took quite a long time from removal to diagnosis as it turned out his was very rare and newly entered into the guidelines so there was a lot of extra tests put in - around 4 weeks

best of luck

Thank you so much for replying! How is your son now? Has he started treatment?

I think the scan will be today. Think it's a case of getting the call and going straight there. But hopefully will get some answers soon

xx

Hi,

he's ok, he's started treatment and three cycles in now - a bit of a bump becoming badly neutropenic and required a week in hospital, but keeps bouncing back and dealing with it well 

I feel for you, the waiting before is definitely the worse bit - once you have clarity it's so much easier to cope with

x 

My son had his scan today. They said they all just look like swollen nodes but not sure why. They are going to repeat it in 3 months and then possibly  remove. The biggest one under the chin is a couple knitted together x