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.

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.