After a few quiet days at home where we tried to get back into the rhythm of normal life we had to travel back up to Bristol for Millie's lumbar puncture and Hickman catheter. They wanted us at the Children's Hospital for half 7 in the morning on the Tuesday after the royal wedding bank holiday weekend. It is a 2 hour journey at the best of times so we had to travel up on the Monday afternoon. Because of the bank holiday traffic, all going the same direction as us, it took over 5 hours to get there. We decided to leave our eldest behind again so she could do school. My parents found a nearby place to rent for a couple of weeks so they could do the school run. We are so grateful. It was hard leaving her behind but the hardest bit was separating the 2 girls who had got close again over the weekend. Millie was especially upset at leaving her sister.
We eventually got to the hospital and settled in for the night. Millie took a little while to settle down to sleep, not just because it was new but because she had slept a lot in the car. I slept next to her on a fold out bed that came out of a wardrobe. My husband had a room in the nearby CLIC house (thank you CLIC) but it was a bit too far for him to go back and forth during the day. I did hope that Millie would be allowed to sleep late so that we didn't have too long to wait for the operation, not being allowed anything to eat of course. But she was woken around 7 by a nurse taking obs. That was it, she was up and awake and hungry. My husband was still at the CLIC house so it was down to me to distract her, fortunately there was a play room! We have spent many hours in hospital play rooms.
Eventually she was taken for her operation and we were able to get some breakfast from the very nice greek cafe across the road. She was in recovery within about 2 hours and as grumpy and hungry as she has been after every aneasthetic so far. She had her wigglies in and they had done the lumbar puncture - the test results won't be back for a few days. I seem to remember carrying her back from recovery to the ward! She then wanted food and then wanted to play!
Although she was initially booked as a day patient we were asked to hang around for a couple of days so that more tests could be done. We weren't told anymore than that so it was pretty annoying when nothing else happened for that day. Millie did suddenly become aware that she had tubes hanging from her chest and she became quiet worried and wouldn't let anyone near them. Thanks to the play therapist and a teddy bear she quickly accepted them but still wouldn't let anyone near them. She was allowed to choose a wiggly bag to put her wigglies in. This is a little cotton bag with strings on that ties around the neck and hangs down the chest so the ends of the wigglies can sit in it and not get pulled or caught on anything. She chose a bag with Winnie the Pooh on it!
The next morning Millie was woken again by obs being taken and, for the first time, bloods from her wigglies. That really didn't go down well. We were supposed to have some training to be able to look after her wigglies but that took till the end of the day. We were given the info to read and the safety pack but nothing else was done till much later. The main problem was that it is easier to sit through such important info when Millie is asleep but there is rarely a nurse free at the same time. By the afternoon no other tests had been done and none of the nurses knew why we were still there. I started asking and pushing. We finally got to see one of the senior doctors, Rachael, who contacted our oncology consultant to find out what else was needed. An eye test was the answer. On a 2 year old? Yes! To give a baseline before her proton therapy. That was arranged for the following day. Looks like another night here then.
Millie was woken again! It'll be good to get home and let her sleep in peace. Nothing in the morning other than the promise of an eye test there which was changed to an eye test in the Eye Hospital over the road at 3pm. Another day gone. We did the eye test. It took 2 hours in total most of that was waiting. But once the consultant made it to us she got us through it as quickly and painlessly as possible, including making sure we jumped the queue to see another doctor briefly. The test involved showing Millie various sized pictures at a distance and asking her what it was. Not a great test for a child still learning words for objects, particularly some badly drawn ones. The next stage was to identify any blind spots in her peripheral vision this involved teh consultant standing behind and moving objects into her field of vision. We suspect that she has a bit of a blind spot on her right side - this is nothing to do with the eyes but to do with the connections to her brain. However, it is damn hard to know for sure - how many 2 year olds do you know that just don't see things because something over there is more interesting! The consultant agreed with us in all respects about her possible blind spot.
We didn't get back to the Childrens Hospital till after 5 and Millie was so tired, having missed her nap, that she fell asleep on the bed without tea or changing. She woke up at 9pm (when her obs were taken!!!) and didn't go back to sleep again till gone 1am. I was shattered and at the end of my tether. It really didn't help that as she was falling asleep at some point the nurse came in to do more obs! Aarrgghhhh! I nearly shouted at her to get out.
The next day finally dawned and Millie was woken yet again. We thought that all we needed to do now before going home was have Millie's dressing changed and then sign that we had done the safety line training and knew what to do should it break or leak. But, no not to be. We needed to see a neuro consultant from Frenchay to discuss Millie's medicines. To be honest this was fine by me. She gets twitches in her right hand when she is falling to sleep. There is something about the change in brain activity that seems to put her at a greater risk of seizure at that time. I have always been concerned about it and had to sit and watch her as she goes to sleep just to make sure it doesn't develop into something else. Last night she was so tired that when she fell asleep (without eating) she twitched more than she had done since the days after her main op. So, I was pleased to be getting her anti-seizure meds reviewed. It just took most of the day for the consultant to get to us. It also took a lot of effort to get Millie's line dressing changed - she really doesn't like anyone going anywhere near her wigglies. I had to hold her still whilst the nurse dived in. Play therapy didn't work this time. At some point early in the day we were told by Rachael that Millie's spinal fluid had come back clear. The best news ever, it means the cancer was localized and that she is a suitable candidate for proton therapy.
Finally, we were allowed to go. It was gone lunchtime on Friday and we were no longer going to make it home in time to pick our eldest up from school - just, by minutes. But we were there when she came home with my parents. She had a ballet class to go to so my mother took her in the car and I followed with Millie in the pram stopping to get some basic supplies in. I spent all ballet class talking to everyone about what had been going on - most people weren't aware because it all started at the beginning of the Easter hols, about 5 weeks ago. We are home for at least a couple of weeks now whilst we await the verdict from the proton panel. However, we have so much to organise before we go to Florida it is going to take a lot of time and energy. I have no idea where to start. Umm, yes I do. Millie needs a passport!
Little Feet - Long Walk
Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.