"My wigglies get taken out"

Today Millie's wigglies (access line) were taken out. If we weren't so tired we would be celebrating. It signifies the end of treatment and the beginning of the next phase - recovery and monitoring. We have been waiting for this day for a few weeks and feels like a major milestone. It is also a reminder that without proton treatment she would be at the beginning of a long course of chemotherapy followed by normal radiotherapy. Both would have been a very heavy toll on a small child and have major side effects. Thanks to the 'Power of Proton' we are not doing that. However we still have a long way to go.

She did well today. I have been counting down the days with her and yesterday she knew what was happening today. She was very relaxed about it but also obviously happy that it was going to be done. I was quite surprised that she had the concept of time and something happening in the future. We needed to be in the Day Care Unit of our local hospital for 8'o clock this morning which meant leaving the house at 7:15am which meant getting up at half 6! Millie started to stir at the normal time shortly before 7am and I was dressed and brushing my teeth when she and her sister emerged from the bedroom. Quite a surprise for both of them we are normally fast asleep! I managed to bundle Millie into some clothes within a few minutes and was heading out of the house, without breakfast of course, within 20 minutes. It normally takes that long to get her dressed but I kept reminding her where we were going and she kept up with me. She had a brief wobble when she realised that Daddy wasn't with us but recovered fairly well.

She did really well until the first nurse came to see us and wanted to put some numbing cream on her hand so they could put in a canular. I did query the need seeing as she was here to have her line out and the whole point of the line was to administer drugs and anaesthetic. But it still had to go on one hand and Millie just erupted and didn't stop crying. We saw the surgeon shortly afterwards and whilst talking to him a nurse came in and wiped off the cream as it wouldn't be needed! Millie calmed down, briefly. She had another scream when the surgeon tried to have a look at where the line went in. He withdrew pretty quickly when she reacted. We then met the anaesthetist who sat right back and didn't go anywhere near Millie but somehow manged to gain her trust. A man used to dealing with unhappy children. We then talked to another nurse and answered lots of questions about Millie's medical history. No one had even heard of proton radiotherapy so there were a lot of questions. I'm happy to anwer all questions, we have nothing to hide and if it helps someone else ...

Millie was first on the operating list so we didn't have long before we were taken into the little room used to administer the anaesthetic. I sat on a stool by the bed and held Millie to me. The anaesthetist handed us an iPad(!) and we found some Dora the Explorer to distract Millie with. It was then time to find the wigglies for the last time. It took some encouragement but Millie did get one of the lines out by herself and watched as the anaesthetist cleaned it and administered the 'penguin milk' (a new one to me but it worked well for Millie). She fell asleep quietly and happily. Thank you Gina, Kendra and Kim without your efforts we would not have been able to do today so easily. However, we still missed you!!! The procedure was only due to take 40 minutes so I quickly got myself some breakfast and a coffee before heading back.

I was called to her bedside before she woke fully. I warned the nurses that she would not like the sats monitor and asked if they could put her top back on before she woke up. Bless them, they had done so however, I forgot to warn them about the sock!!! As soon as Millie registered I was there she wanted a cuddle and food! We were shown a seat and Millie started on the first of 3 yogurts. It wasn't quite plain sailing - she had a canular in her left hand that caused her discomfort when trying to use the spoon. It was supposed to stay in for half an hour after she wakes up just in case they have problems. However, because she was looking well and we had done so many anaethetics and she was screaming the place down, they did take it out about 5 minutes later! She then complained about the plaster that was put on the back of her hand so that came off as well. She finally relaxed and started eating again. One of the nurses gave her a large slice of carrot cake that his wife had baked. It was very nice and Millie ate most of it! Being the first in we had the chance to talk to some of the nurses. We will be getting to know them well over the next few months as that is where we will be going for the MRI scans. We were allowed to leave as soon as Millie had finished eating and showed no signs of complications. We were leaving the car park by 11am! It was all very quick. And it is now done. She needs to keep her plaster over it for a couple of days, no bathing yet but it should have healed in about 5 or 6 days and she can then have a bath or go in the pool or on the beach etc etc. Normal life!!!! There are no stiches so we don't need to worry about them.

She somehow looks different without the clear plaster showing around her neckline and her neck looks really long without the strings of the wiggly bag. But best of all is hugging her and not feeling them through her t-shirt. I got used to them but they were ALWAYS there and a constant reminder. And tonight she lay down in bed and didn't have to worry about moving the wigglies so she wasn't lying on them. She can now play with other children and I don't need to worry about one of them accidentally pulling a wiggly. We will have to decide whether Duckie and Ella also have their wigglies taken out. That's a tough decision but we won't rush it. She loves playing doctor with them and it should be part of the memory for her.

We have many more steps to take and at each one will be an underlying worry that the tumour has started to regrow. Proton was the best but it is still no gaurantee. There are various treatment side effects to be monitored for as well which we will always be watching for. However, she has a damn good chance at leading a normal life and we will do everything we can to ensure it happens. Her hair is starting to grow back in places already. She is a strong and determined cookie.

One step at a time. The next one is next wednesday when we have another appointment with our peadiatric oncology team to discuss the next steps. Oh, and physical therapy tomorrow!

I shall continue to blog when something happens. I suspect I'll be doing this for a long while yet.