News

Niamh is so happy and well it is hard to believe that the tumour has started growing again. Niamh has had a fun day, lots of playing and giggling. She enjoyed the company of Emilie and Caitlin this afternoon. Lots of cuddles and kisses too. We obviously made the most of them.

The consultant oncologist came to see us around 5 this afternoon. They all agree that surgery is the next step. This may happen tomorrow, Friday or early next week.

Another child is due to have surgery tomorrow but they may have to wait due to bedding reasons. If it is postponed, Niamh will have her surgery tomorrow. So basically we will find out in the morning.

Niamh will be starved for 9am just in case. If they go ahead with her surgery, she will need to go through another MRI first as some images were not done and they are crucial for the navigation for the surgery. There are expecting the surgery to be quite long and complicated. The tumour is in the original area which is close to very very important veins. The consultant surgeon seems confident he can take a bit chunk out, but unfortunately not all. He is also planning to make a hole in the membrane that separates both ventricles so they are connected again and so that the vp shunt can work for both ventricles.

The risks are the same as for the two first surgeries back in Oct/Nov. There are however more risks of scars not healing properly (as it will be the third time they open the skin in that area), csf leaks (if scar doesn't heal well) and shunt blockage.

As always we are confident that Niamh will impress us with her recovery. She is a strong and brave little girl with a fantastic determination!

The oncologists will meet to discuss the plan for after the surgery. There has been talks of further chemotherapy, radiotherapy including proton therapy. Proton therapy may be an option as the tumour has stayed localized. The centres for proton therapy are in the US and also in France. UK patients are usually sent to the US for language reasons. In our case they would consider getting in touch with the the centre near Paris.

Yesterday was a major blow but we are still very positive that with all the wonderful support we are getting from friends and family Niamh will get through this whatever it takes.
Sent using BlackBerry® from Orange