The Box I keep In my Head

Take a look at today's Blipfoto picture. It's great isn't it and when you look at it you would be hard placed to think that the picture wasn't depicating anything more than two people, a Mum and her daughter, who didn't have a care in the world, however this picture is one where the picture most certainly doesn't paint a 1000 words.

Meet 3 year old Isla Simpson and her mum Sam. Isla looks exactly like a 3 year old should in such a picture and that's gorgeous in her party dress and a twinkle in her eye, or is it embarrassment at having to sit like this with her Mum, who can tell.

What I can tell you is that Isla is currently in remission from Neuroblastoma which was diagnosed when she was five months old.

I was fortunate enough to come across Sam and Isla when Sam posted on Twitter and tweeted a very simple one line which said "have a read at my blog and find out why I'm doing The Kiltwalk", so naturally, I did.

What I expected was a blog which told of the trauma and harrowing experience of Isla and in the middle of her battle, however Sam's blog is a "Take 2" blog i.e. her original blog which started at the beginning of Isla's story, is no more, so this second clog was started at the beginning of last year.
I can't provide links via Blipfoto as they don't allow, however I would urge you to pay a visit and you can find it by simpy typing "Sam's Challenge for Isla" into Google and you will find it.

Sam's blog covers a lot of where Isla is now and it highlights that although in remission, the worry never ceases and the problems don't go away as the slightest health issue can cause panic all around the family as they worry if Isla is slipping into familiar territory. The blog also has touches of humour, however it's also a very honest and sobering blog, which has warts and all. Sam for instance had to quit her job as a Supply Teacher, which she did without question, however it was a job she not only loved, it was a valuable second income for their family of five. Sam also talks about some of the struggles involved in keeping a family of five together mentally and financially with only one wage coming in and also opens her heart and discusses how she would sometimes like some "adult conversation" during the day, but then feels guilty at the thought of having some personal time.

I'll leave you to hopefully have a read through, however here are a few extracts which I've taken from Sam's blog and have adapted for the purpose of our Blipfoto Journal.

I've changed my challenge

I've changed my challenge. Or more specifically, delayed the cycle challenge and taking part in a different challenge in the meantime.

It was more of a last minute decision a couple of weeks ago to take part in the Speyside Kiltwalk. As much as I want to create a fund for Isla should she need treatment or donate to Neuroblastoma research if she doesn't need any, I also like to give to other charities, especially ones that have helped us or will help other children who have a serious illness. I wanted to take the opportunity to be part of the first Speyside Kiltwalk, and my husband is joining me too.

The Kiltwalk raises money that benefits four different children's charities; Clic Sargent, CHAS, Aberlour and TACC. Obviously Clic Sargent is close to our heart as it provides support to families of children with cancer. Clic gave us a couple of cheques to help with travel expenses during Isla's treatment. Isla was treated at two hospitals, one 67 miles away and the other about 150 miles away, so we spent a lot of money on fuel during 20 months of treatment. We spent a holiday at Malcolm Sargent House in Prestwick in May last year. A wonderful holiday where we were looked after and made good friends with other lovely families in the same situation. Spending time with other families who understand what you've been/going through is important.

I do still feel that a lot more could be done by the charity in our area by providing a Clic Sargent nurse and social worker, perhaps with more funding that could happen? Clic Sargent is the only charity that has helped us out of the four that the Kiltwalk supports, but as much as we like 'giving something back' to those we've had help from, we also like to support other charities. Having had a child who was once very ill and who has needed a lot of care for a long time I can empathise with parents who face the same kind of demanding struggles.

I'm looking forward to taking part in the walk, around 500 people are taking part, which I believe is way beyond what they expected. I think with such a large group of people there will be a great atmosphere.
Hopefully the weather dries up this weekend so I can get out for a long walk, I'm afraid I haven't had the chance to get out this week with the miserable weather. If the rain keeps up, I'll be on the treadmill at the gym to get some walking done. I'm hoping the river paths dry up and there's no flooding at the time the Kiltwalk takes place.

The Box I keep In my Head

As Isla has been off treatment and getting older I try to focus on the rest of our life. Many people that we meet have no idea of what she's been through, including most of the children she knows, and with Isla being so young (3 years old) that seems easiest. I've put Isla's journey away into a little box inside my head, as a way of coping. The lid of that box is not firmly shut, infact one flap won't stick down. I don't want it to stick down. It's my daily reminder to cherish every moment with her as we never know what's around the corner and to keep doing my bit for awareness, for charity, for children and for cancer. I don't know if that's the best way to deal with life. Sometimes I think it might be easier to carry on as if it never happened, but I couldn't. The lesson I took away from her journey was to make the most of life and not to worry about the small things.

I know the box is large and even with it closed, it takes up a lot of head room. When Isla has any medical tests or scans are approaching is a time when the box is open and I get anxious worrying if I need to unpack that box and start to live that life again. We're currently waiting on dates for her 6 month scans that are due at the end of May so the anxiety is creeping up.

Many of the children who achieve remission, regressive or stable disease are often left with some complications from the side-effects of treatment. A child may recover from cancer but be left with many other complications that they have to deal with for the rest of their life. Some children who have had neuroblastoma can be left paralysed from the tumour and spend the rest of their life in a wheelchair. Their journey doesn't end with remission, just changes course. There's not much information out there on the late effects of the treatment, so it's a case of waiting to see what happens to each child. Isla has been left with a large nodulated liver and enlarge spleen. We have been told that she has 'liver disease with varisces', and there could be complications in the future. Currently Isla is well and her liver functions normally, and we're extremely grateful for that. A future of constant hospital appointments is a sobering reality, and a reminder to make the most of life.

Exactly three years ago, Isla was fighting an abcess, septicemia, chylous ascites, infections and close to organ failure, while badly needing chemotherapy to kill the cancer that was all over her body, chemotherapy that could kill her in that current state. It was definately the worst thing we went through. Isla did not sleep much, she was uncomfortable, she didn't make a sound or smile like she had done just a month previously. That period of time sits at the top of the box, as a reminder that we were very close to losing her. A large team of doctors creating a specific plan in a great hospital is what helped Isla to be well enough to continue with chemotherapy. Isla was seriously ill for about six weeks. The night she smiled and made a sound was a moment I'll never forget, sounds of recovery. Just a nasty cancer to fight! The fear of living through that again will always be there. Keeping it in a box allows us to carry on. Enjoying life with Isla, having hope for her future are always at the forefront of my mind. Witnessing the amount of sick children in hospital, spending time in intensive care, high dependency, oncology wards, waiting rooms is not something you can seal away in a box. The memory of that time is what will keep me going this Sunday when I walk with 500 other people along the Speyside Way for Scotlands sick children. If children can endure repeated visits to hospitals with procedures, treatments, the least I can do is have a little walk and raise some money to make life for them more bearable.

Please consider donating to the kiltwalk. 20% of the money goes to Clic Sargent, a charity close to our hearts.

To donate via text enter SPEY50 followed by a space and the amount between £1 and £10 to 70070. PLEASE consider donating. Thanks