A year so today we arrived in Jacksonville, Florida after a very, very long and arduous flight. I thought now would be a good time for an update on Millie's progress. And to apologize for not writing over the last few months.
For a long time after we got home from Florida we were in and out of various local hospitals for check ups and testing and physio and MRIs and, you name it I think we did it. We averaged 3 appointments a week for a number of months and it was only in February that things started to calm down. I still remember that first week, in mid January, when we had no appointments except physio. We have just had a spate of appointments and I have 4 Millie related appointments next week. Fortunately, Millie only has to be there for 2 of them.
About 5 weeks ago Millie had her third post treatment MRI. It was also a year after diagnosis so quite an important occasion. We always have to wait for the results and I think this is harder than the lead up to a scan. Fortunately our wonderful oncology team managed to get them to us within a few days, despite a bank holiday. The fantastic news is that the scans are clear!!! There are still enhancements/radiation changes but they are possibly getting smaller. Such things are relatively normal post radiotherapy and is a sign that the cells are reacting to the treatment. No one has been able to say how long the enhancements will last, it could be for months. They caused some slight concern after the first MRI as no one was 100% sure what the areas of high contrast meant. But everyone is happier this time round, which means we get to relax for a few weeks. Millie will have an MRI every 3-4 months for the next 2 years. It will then be every 6 months, then every year, and so on for an indefinite period of time.
A couple of weeks ago we met our oncology consultant. She was very positive about Millie's progress and latest scan. We are slowly getting to know our local kids oncology team despite only meeting them once before treatment. Not the normal way round. Most patients spend many hours in and out of hospital for various cancer treatments and get to now their local team and fellow patients very well. We have done things the other way round and it feels a bit weird. We have only been in for oncology check ups about 6 times in the last year. After getting back from Florida we went in every couple of weeks but it was quickly decided, particularly once Millie's wiggly was removed, that as Millie was doing so well we only really needed to go in after each MRI. It has taken a bit of time to get used to being so doctor-free after the intensiveness of the previous few months. Don't get me wrong, we haven't been abandoned. Far from it, they are their when we need them and I regularly send them a quick email query about something that is concerning me. And I get very quick responses from them as well. I guess it is just another sign that Millie is doing so amazingly well.
And she is doing well. It is hard to remember that 14 months ago when she was diagnosed we were told to expect the worst. It has been a long, long journey and it isn't over yet, by a long way. But it is a lot more positive than anyone ever predicted. We aren't out of the cancer woods yet and won't be for many years - the possibility of tumour regrowth will continue for a long time. I have heard of a child with the same type of cancer who had a reoccurrence 7 years later. Every cancer is different, and that child did not have proton, but we can never be complacent and we have to try to be positive. It is no longer the all encompassing concern that it was but it is still there, in the background, and it rears its ugly head whenever Millie is ill, or more wobbly than usual or even when she removes her hat and I see her still mostly bald head. But our day to day lives are filled with many more challenges. The challenges that come from having a disabled child.
The tumour has had a lasting impact on her. She is missing a large chunk of brain from the top, left back. We have been told that if an adult had a stroke in this area he would probably never be able to walk again, would probably lose the use of his right hand side and may not be able to talk. Millie talks and walks and uses both hands.
She talks non stop as any normal 3 year old does! She is still slightly slurry but no one is concerned yet. One of the difficulties we face is that no one can tell us if her development will continue or whether it will just stop at some point. Her brain is rewiring but how much has she lost and how much rewiring can it do? At the moment we know that she has very good verbal skills. A recent neuro-cognitive test showed that she is well above average. Which is fantastic news as research shows that disabled children who can communicate their needs get on much better in life. However, the same neuro-cog test showed that she is only average in the physical logic problem solving area, a statistically significant difference. Most kids are better in this area than at the verbal skills. The discrepancy can be explained and isn't really a big surprise. I believe the main reason is because we have spent an awful lot of time over the last year reading books and talking because that was all that Millie could do for a long time. On the plus side, she is still average despite everything and she is a damn quick learner! Who knows what we will find in a year when she is retested in time for school. The idea then is to identify whether she will need any extra help at school and to get it sorted before she starts. We have a very good team around us who are very good at thinking of such things.
Millie also walks. But she has problems with her balance which makes her unstable at times. Her physical confidence is also low. One physio told us early on that Millie would probably relearn everything that she had already learnt but that learning anything new would be a struggle and take longer. When she first started to lose her balance and ability to walk she was just over 2 years old. She did quickly relearn how to walk, to the amazement of all who met her, but she still toddles like a 2 year old. She can't really run, she can't jump. She likes to hold my hand whenever we are out for additional support and she still needs a pram as she can tire fairly easily. She is gaining in confidence and she is starting to climb and scramble like a toddler finding out what she can do but there is something very ungainly about it. I don't think things are helped by the fact that she is so tall for her age. It is a long way to fall and her centre of balance is a long way up! And we have recently discovered that a growth spurt can disrupt her ability to balance. That was a scary few weeks, not knowing why she was more wobbly than normal. Fortunately, it was around the same time as her latest MRI so we could rule out tumour regrowth. She started Ballet classes at the beginning of the year, following in her big sister's footsteps. And they have been really good for her. She has learnt to stand on one leg, point her toes, side step, reach up on her toes, bend down and get up again quickly, etc etc, the list goes on. Many thanks to our teacher and the ballet school for letting her join in. Stairs are hard work and we have recently been visited by an occupational therapist from the local authority to assess our home with regards to improving accessibility. For example, we will be getting a rail at her height on the stairs and a couple of grab rails at doorways that have small steps. The issue I would love to resolve is giving her access to the garden, she loves being outside. Unfortunately, to get a grant for such work we would need to abide by their regulations and that would involve building a 4 metre ramp of concrete down one side of the garden. Our garden is not that big and it would completely destroy any useable play space that we have. Our therapist is aware of this and we are all looking at ways to improve access without resorting to a big ugly ramp. The difficulty we have is that no one can say how Millie will be in 6 months, a year, 3 years. Will she still need a ramp? She can do small steps if she holds on to something but will that improve over time and as she gets bigger? She is a very independent young lady and I would love to give her the freedom to go outside whenever she wanted.
The coordination on her right hand side is another issue. A year ago she could hardly pick up chunky beads with either hand. These days she has very good fine control with her left hand but the right is still a long way behind. She seems to forget that she has a right arm and sometimes has to be reminded to use both hands. We have a wonderful physio who comes to visit us every other week and work with Millie on such things. She used to come every week but Millie was doing so well that we don't need to see her every week now. Millie looks forward to her visits as she also has something new to play with. Apparently Millie is a challenge! Millie is so good at doing what is asked of her and does it so well that our physio always has to come up with something new. Things are complicated by Millie's visual impairments. It is believed that she has no vision out of the right hand side of either eye. She can see it, the eyes are fine but the information is not being processed in the brain. She is too young to be tested officially but one of the telling signs is that she draws only on the left hand side of the paper. Having said that I have become convinced that she is now drawing over most of it. I say drawing, it is normally just scribbles but she is starting to do circles and lines and dots and faces and she is desperate to learn how to write so she is learning some letters at nursery. The vision problems means that she has no 3D vision in her right eye, and I believe this has quite an impact on her. From affecting her balance, to seeing stairs and even to using her right arm. If she can't "see" it then why should she remember it exists?
Whew, brief update - not! This is one reason why I have been putting off writing. I just haven't known where to start or end. There is so much more I could write but it is late and I need to get to bed. I will try and update more often. Our life has changed and we are still learning how to deal with those changes. We have an amazing team around us - from all the medical professionals to family to the local community and our neighbors. Thank you to everyone for all of your help and support over the last 14 months. We would not be here without you.
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.