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A little bug and a birthday…

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Eleanor decided, a day before her routine MRI scan and two days before her birthday, to show us exactly how quickly children having chemotherapy can get sick and go downhill. On the Saturday she was her usual happy bouncy self and even when she woke on Sunday morning she appeared fine, but as the day went on she became tired, tearful and clingy. Her temperature was up and down peaking at around 38 every now and again. By the time the evening came we were getting worried so we called the hospital and were told to take her in for them to check her over…

We arrived at the hospital and a nurse took us straight into an isolation room to wait for the paediatrician to come and see us. Eleanor lay on the bed and barely moved the whole time, so we sat, worrying and waiting. When he arrived we saw that it was the same paediatrician we’d met on our visit to A&E back in early January – how far we had come since that day!

After an examination we were told that Eleanor had probably picked up an infection, so some blood was taken, she was put on intravenous antibiotics immediately to start tackling it and we were told we would probably be staying in for a few days so to make ourselves comfortable. Thank goodness for my emergency pre-packed hospital bag… this time I had something other than jeans to sleep in!

handsSeeing how quickly Eleanor went downhill from appearing absolutely fine was a huge wake up call. Chemotherapy really does horrible things to your body and makes you completely unable to fight the tiniest bugs that any normal functioning body would just remove without you knowing anything about it. Chemo is designed to attack rapidly growing cells but it doesn’t know the difference between cancer cells and the normal cells that keep our bodies working day to day, especially white blood cells including neutropils, our infection fighters! Even normal bacteria which live happily in our mouths and digestive tract can cause illness in a person with a low neutrophil count. Keeping Eleanor away from every single infection out there is impossible but we do our best to make sure we give her a fighting chance by following her around like OCD parents with anti-bac wipes and alcohol gel, whilst constantly reminding her to keep her hands away from her mouth!

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The following day the antibiotics continued and Eleanor was also given a blood transfusion due to her HB (haemoglobin) levels being low (another vital cell that the chemotherapy attacks). After a few hours playing and listening to music in her room, Eleanor was plugged in to the machine which would be giving her blood via a drip infusion. Initially I sat and stared at that bag of blood feeling a little uneasy about the whole thing. Someone else’s blood from someone else’s body. I sat wondering what kind of person the donor might be until I remembered what a selfless act giving blood is. It made me smile that a person gave their time (and their blood) to help keep my daughter alive and healthy enough to carry on with her treatment. If only I could thank them personally… if you give blood and are blood type O+ it could have been you, so thank you!

The rest of the day went by in a blur although we were lucky enough to meet Bianca, the co-founder of an incredible charity called Momentum. Momentum are an amazing charity which supports the families of children with cancer or life limiting conditions, based local to us in Kingston.

Bianca gave Eleanor a talking Minion as an early birthday present which provided hours of fun for us all and helped the afternoon fly by.

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Eleanor’s routine MRI scan that was due that day at the Royal Marsden was cancelled. I went to sleep that night beside her, excited but sad that we would be waking up in hospital on Eleanor’s 4th birthday.

It turns out that waking up in hospital on your 4th birthday is not actually as bad as you might think… cards, presents, cake and a beautiful rendition of ‘Happy birthday’ from the nurses on the ward made the morning a happy and smiley one. We were also given the great news that we would be able to go home that day to enjoy the rest of Eleanor’s birthday (although laden with 7 days worth of oral antibiotics).

Happy 4th Birthday Eleanor!

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Time flies when you’re having… chemo…

The remainder of January, February and the start of March went by in a blur of appointments. We saw community nurses, health visitors, an endocrinologist, an audiologist, and ophthalmologist, a psychologist, a vision impairment specialist plus Eleanor’s oncologist and many many nurses in both the Royal Marsden and our local shared care hospital.

I went back to work after a few weeks off but due to Eleanor no longer being able to attend nursery I reduced my days to only 1 day a week. My employers are an incredible support and continue to be which I am extremely thankful for. My Dad also flew over from Australia and stayed with us for a few weeks! #bonus

 

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By the start of February Eleanor’s eyesight had rapidly deteriorated and we noticed that she was struggling to see almost everything around her. She was relying more on sound and touch than sight and on the 26th February, at an appointment with a consultant ophthalmologist, our little girl was certified severely sight impaired  (the new, more politically correct way of saying ‘blind’ because apparently we shouldn’t say that any more!) Following that appointment people I bumped into would say how sorry they were and would ask how we felt, like it was some out of the blue news, in actual fact to me it felt like a relief. We were not just being over protective parents who analyse the crap out of everything, we were right, our daughter really couldn’t see and now someone official had agreed with us, it was all confirmed and we now have an actual certificate to prove it!

Eleanor tooIMG_6088k everything in her stride, each Friday we packed up the car and set off for the chemo appointment at either the Royal Marsden or Kingston depending on which drug she needed that day. On the weeks where she would just be having the Vincristine push, we were able to use Kingston, our local hospital. It took a lot of trial and error, not forgetting large amounts of screaming, but we started getting into a bit of a routine and learned what would keep Eleanor as calm as possible when they accessed her port, as well as things to help us cope with the whole ordeal (removing her shoes is now number one on the list after a few shoe in the face related incidents!)

As the weeks went by, Eleanor was becoming more used to hospitals and the nurses who treat her. She learned the names of the drugs she takes AND how to take tablets which is pretty impressive for any 3 year old! It all started to become a bit normal, which, as horrendous as it sounds, was what I had been hoping for from day one.
The future surrounding Eleanor’s sight is unclear. It is impossible to know that ‘if’ the tumour shrinks with chemotherapy, that she will regain any of her vision. All we can do is hope… and hope, and hope some more.Screen Shot 2015-05-28 at 15.55.19