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.

Tuesday, 18 June 2013

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Hello! It has been such a long time since I last wrote anything. This time 2 years ago we were in Florida. I can't believe it is so long ago. Millie is doing really well. We have the next MRI in a few days and I don't like to say too much before an MRI just in case ... However, she does still astound me at how well she is doing and how determined she is to live life to the full. We try to live a normal life as much as possible but we do have a variety of appointments at times. Sometimes it is busy and sometimes we can go weeks without seeing anyone.

Our main concern at the moment, apart from the obvious, is starting school in September and making sure she gets the extra help she needs. We are trying to get Millie a statement for special educational needs which means that the school gets funding to provide millie with the help she needs. Our nursery started the whole process off last autumn and we were supposed to have the first meeting with the educational psychologist in January. That was then delayed to April. However, that was then cancelled due to illness (not us) and it has taken 2 months to get any information and progress. Thanks to our school Special Educational Needs Coordinator and our nursery we finally have a date for next week. Millie will need help in communal areas because she still has problems with her balance and coordination. If she is knocked she will topple. She will also probably need help with tasks that require fine motor control, like writing. Everyone concerned with her care believes that she needs this extra help from the moment she sets foot in that classroom. We just need to convince the officials.

Millie had a physio assessment the other day which was very positive, in an odd way. I was warned hat Millie was likely to plateau about a year after treatment with regards to her physical improvement. That was a year ago and she is still improving every day. With the continued improvement and her getting old enough to start to understand we are looking at changing her physio programme to be more goal orientated. Our physio has decided that Millie has weak core stability which explains lot of things. It can affect her ability to walk and run but also her ability to write as she spends all her time adjusting herself to stay upright. Millie was doing an exercise that involved picking things up with tongs using her right hand, which is the weakest side. She was doing well, her right is now about as good as her left was a year or so ago. But when our physio held her hips still there was a marked improvement. So, we may be getting a special chain for her for school and she may be getting a special pair of Lycra shorts(!) and we have a couple of exercises to do as often as possible. She already does swimming and ballet, both of which are very good for core stability.

One more bit of good news. A few months ago we decided to try and get Millie a trike so tha she could joing her sister riding up and down our quiet road. We found the perfect trike and then we found a charity called Cyclists Fighting Cancer who are utterly amazing and agreed to fund the trike. It is a custom built trike made by Tom Cat and it is amazing and expensive! It is not just any old trike. It is being built to fit her with extra bits so that she can ride it, like a supoorting seat and calipers. It will have a removable parent handle so that we can steer her and brake. It also comes apart and a new front end can be attached which turns it into a tag along. As is said, it is amazing. And they are hoping to deliver it next week!

Anyway, I am finding it difficult to find the time to keep this blog updated. As I said we have lots of little things going on these days, so when I do eventually get the chance I have so much to say I get bogged down. There a still people visiting this page and I feel guilty about not updating it. So, I have decided to start a facebook page where I can put those little updates. You can find it at
Please feel free to like, share and comment.

Thank you for continuing to be interested and concerned about Millie, it means a lot to us.

Thursday, 7 June 2012

A Year Ago Today ....

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.

Friday, 10 February 2012

Love bomb

Thank you love bombers!
Your messages of love and support have arrived at an amazingly appropriate time. Living with cancer, the side effects of cancer and the after effects of cancer is proving pretty tough. We have our good times but we also have our bad times and the last few days have definitely been a low. It helps to know that people we don't know are kind enough to think of us and offer their love. It has also reminded me that we are not alone and that all I have to do is reach out and ask.

I must say a huge thank you to our dear friend, Dith, who nominated us for a love bomb. For those who do not know what a love bomb is then check out this amazing place:

Blogging was a kind of therapy for me whilst we were in America, as well as a way to keep family, friends and concerned strangers informed of Millie's progress. I know there are many people out there wandering how we are getting on and it is a long time since I last blogged. And I think I would benefit from some regular blogging therapy. Therefore, I am making a late new year's resolution - I will blog more often. So much has happened in the last 6 months I'm just not quite sure where to start.

Millie is doing amazingly well but we are still taking it one step at a time.
Thank you.

Sunday, 11 September 2011

Irregular posting

I will continue to post updates as often as I can but they may be quite irregular, like the last couple have been. If you wish to be informed of when I have added a new post then you can take advantage of the 'follow' options on the right hand side of this page. Probably the easiest way to stay informed is to follow by email. Simply type your email in the box and follow the instructions. You will then be sent an email from Feedburner asking you to verify your email address. Once verified you will be sent an email every time I add a post. Hope this helps.

Is this our life now?

It has been a busy couple of weeks. We had a fantastic family holiday in South Wales with a few days in a caravan by the beach and then a few days seeing old friends in Swansea. Thank you to everyone for your hugs and support. It was wonderful to see you all again and just what we needed.

The girls loved being in a caravan. So much so that they were both in tears when we left. Millie even had a tantrum and went and lay down on her bed and refused to leave! It lasted about 20 minutes! We did have a good time and I was sad to leave as well. We needed a holiday, not just for the rest but for the opportunity to spend time together as a family without any interruptions. Time away from the pressures of life. Time to renew family bonds. Time to relax. Time to have fun and laugh. Time to love. No wonder the girls cried.

We got home on the Friday which gave us the weekend to get ready for Monday when we hit normality/reality with a bang. We didn't manage it, I have been so focused on Millie and her treatment that it has been really hard work to think about anything else. My husband went back to work. Our eldest went back to school, now in Year 1 and growing every day. Millie started settling back at her nursery. She had an hour long session and did pretty well. I stayed with her but let the staff work with her as much as possible. Millie kept wanting me to play with her or hug her, which is understandable after all we have been through. She and I have not been apart for about 6 months. No one else has cared for her for any real length of time - not even my husband. They will do an hour or so together but she always wants me eventually. I thought it was going to be hard work settling her back in but she seems to be more than ready for it.

We went in again on the Tuesday and Wednesday morning. On Tuesday she went off with her carer and left me standing talking to one of the other staff. As Millie didn't seem to be worried that I wasn't there I went and hid for an hour! She had a good time and when I asked if she wanted to come back tomorrow she said "Pleeease!!!". So we did and we stayed for almost 2 hours. I sat with her during the music session but then disappeared again and she was absolutely fine. I am not sure how she will react when she knows that I have left the premises but we shall tackle that one next week. In the meantime she has renewed some friendships and is really enjoying the choice and variety of activities. She really needs the stimulation. The nursery can provide so much more then I can. And they are SO supportive - thank you everyone.

As well as settling into nursery Millie had 4 appointments. Two of them were for physiotherapy. On Tuesday we went to the hospital for hydro therapy for the first time. Millie was quite keen to get in the water and was doing well, unfortunately she was splashed in the face which upset her and we spent most of the rest of the session sitting on the side. I did manage to get her pushing a ball in the water with me carrying her towards it but she got splashed a second time and that was it. When I asked her afterwards if she had enjoyed herself she said no because she had been splashed! Our second PT appointment was for an evaluation by her new physical therapist. Claire was very positive and has had a lot of experience with children with a similar condition, which is really nice to know. I think we will get on with Claire. We will be seeing her occasionally in the Child Development Centre. However, our main therapist will be Jenny. We haven't met her yet (next week) but she will be visiting us at home weekly and will be doing both the physical and occupational stuff. It all sounds quite positive. And they are talking about fitting in with my work hours (when I get back) which would be really good.

Our third appointment for the week was with our CLIC social worker, Kim, on Thursday morning. She came to visit and she asked me all sorts of questions so she could complete the forms for Disability Living Allowance. I am so grateful to her for doing this for us. She knows the ins and outs of the form and said she would get it in next week. She will spend 4-5 hours completing it which is just astounding. Something I would never have the time to do. And this is before the government makes it harder to apply!

Friday was our worst day. Millie needed to be in the hospital by half 8 so that she could have the first of many endocrine tests. We had to leave the house before 8am i.e. an hour before our eldest starts school. My husband felt he had to be in work so my parents stepped in and took her to school for us. My mother then came to the hospital to give me much needed support. The purpose of the test was to ensure that Millie's hypothalamus is functioning as it should be. The results will be used as a baseline to compare against future tests. Her hypothalamus was irradiated which means that the production of hormones could be a problem in the future. From what I understand (and I could be wrong - if I am I will post corrections when I find out) testing for changes in growth hormone is very difficult so a test for stress hormones was done instead. This involves taking a blood sample, injecting a drug that has some sort effect on the production of stress hormones and then taking 3 more blood samples at 30 minute intervals. To do this Millie needed a cannula in her hand and that is what turned a simple procedure into a nightmare.

I knew that Millie would need a cannula so I had started preparing her for it by using Duckie and talking about having a wiggly in her hand. I even modified Duckie and put some velcro on his hand so that his wiggly could be moved there. It all seemed to work well and Millie was very happy to put medicine into Duckie's hand wiggly. I also talked to her about having magic cream on her hand to help take the pain away (it is a local anaesthetic). I don't know what it is about the cream but she really did not like it. From the moment she saw the tubes she started screaming. It was a struggle just to get it on and cover it with bandages. They put cream on both hands. We then had to wait for half an hour before they could cannulate. We went to play in the waiting area and she alternated between happy and screaming "take it off". The nurse decided that a registrar was needed to do the cannulation as quickly and calmly as possible, instead of doing it themselves. Looking back I think they worked out that Millie would kick up such a fuss that they would need extra people to hold her still. I sat her on my lap facing me and held her tight, our nurse held her arm still, a play therapist tried to distract but also held a leg. The registrar did the cannulation whilst holding her hand and another nurse handed him everything. We must have been in that room for half an hour. The cream is good but one of its side effects is that the veins tend to disappear, which is what had happened. The registrar decided to use a vein in the underside of Millie's wrist but that had not been numbed so they had to use the numbing spray. Millie definately felt it go in, I was barely able to hold her still and the screams were heart wrenching. She struggled and screamed so much that she used up all her energy and literally fell asleep in my arms during the procedure. She was tired before we got there but it took about half an hour for the heavy breathing and sobs to stop. It isn't the first time she has fallen asleep during cannulation. It is very hard to see her so stressed but once asleep she is relaxed which makes it all a bit easier. We were given a room so that she wasn't disturbed and I cuddled her in my arms. She slept through the first blood sample but they had problems getting blood for the second sample and the process of whatever they do woke her up. Fortunately, they were able to finish quickly and the cannula was removed. I'm not sure she was aware that it had gone in which is a small blessing. She recovered fairly quickly - chocolate buttons and Nanny are a great distraction and reviver! We then went to get her a prawn sandwich and donut as a treat before heading home. Reminiscences of america!

We got through this one but she needs this test, or similar, every 6-12 months. And in 2 weeks she has her first MRI. She will need to be aneasthetised and will also need to be cannulated. Our nurse suggested that we request they use gas and then cannulate her when she is asleep. But we still have to go through the tests and I have absolutely no idea how we are going to manage. We need someone like Kim to help us out. There has to be a better way and I will not rest until we have found it.

The MRI is another cause for concern and not just because of the anxiety about the results. We have been given a time of half 2 in the afternoon and been told she can't have anything to eat after half 7 in the morning. This is 7 hours, the normal is 6 hours. The other day she missed her snack and by half 12 she was sat on the sofa crying at me because she was so hungry. I can't believe that they do not scan young children first thing in the morning so that the hours of starvation are during sleep. By the time she has been scanned and is awake she will not have eaten for over 8 hours - and that is assuming they are not running late. She is 2 and recovering from a serious illness she needs to eat regularly to keep her strength up. It is going to be so stressful for her and me. I have already queried why this is the case and have been told that it is to do with the availability of the anaesthetist and MRI machine. Our ward nurse is going to find out more and see what she can do but the time won't be changed. I have warned them that I will be fighting this 'policy'.

Come on NHS - I know you are strapped for cash and working with limited resources but you can and must do better than this for our children.

Sunday, 4 September 2011

Donations page update

A number of you have let me know that the donate button is not working.
I have just created a new button which should now work. If you have further problems let me know.
Thank you for your generosity.

I will post properly soon. We have just had a much-needed real family holiday and normality/reality will hit in full force on Monday. We have a busy week coming up and the first of many monitoring tests on Friday. In the meantime, we are all recovering.