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Our lives fell apart on the 21st October 2013

Date: January 25, 2014 Author: OWNER Categories: Donal's Mom's Blog 0

Our lives fell apart on the 21st October 2013.

Donal had been tired and pale for a few weeks and had been complaining of a sore tummy. We had taken him to the GP several times, initially we were told that it was a virus then when we went back were given antibiotics. The side of Donals face began to swell and he had brusing around his eye. We persisted with the GP until we were sent to hospital on the 21st. When the paediatric doctors examined him it quickly became apparent that they thought it was more serious than a virus. It wasn’t until the next day that told us that they suspected Cancer.

It is hard to explain how you feel when you are told that your beautiful bright 6 year old could have cancer, on one hand there is complete disbelief and shock and on the other hand your instinct is to scream it’s all a terrible mistake, bundle him up and take him home. We just kept saying it couldn’t be true, he was at school the week before and climbed Knocknarea mountain the week before that.

Within a few hours we were in an ambulance going to Our Lady’s Children’s Hospital, Dublin.

It’s difficult to describe the next few days. Donal declined rapidly, within a few days he couldn’t get out of bed and walking was becoming extremely difficult. He stopped eating and was very sick and had a high temperature. We were told that the cat scan showed that Donal had a large tumour (the size of a small melon) in his abdomen, he had cancer spots on his lungs and had tumours above each eye.

They did a biopsy that confirmed that Donal had stage 4 Neuroblastoma, later bone scans revealed that the cancer had also spread to his bones. Within 4 days of walking into hospital with a little boy with a sore tummy we were then faced with asking the difficult question “can he be treated, is there any possibility of saving his life?”.

We were told that the cancer was extensive but that he could be treated, the treatment was going to aggressive and include every type if cancer treatment they could do. We were told that the chances of getting Donal to remission depended how he reacted to the initial chemotherapy but even if he did get to remission that the chances of relapse were extremely high and once there is a relapse there is no current treatment to cure the cancer. We were given a prognosis of 40%.

It was important to start the induction chemotherapy as soon as possible, so the day after Donals biopsy he started chemo. The next week was a blur, Donal was very ill, recovering from surgery and his first round of chemo. His induction chemo would be every 10 days for 80 days. He would need blood transfusions almost each week and injections each day.

At the end of the first week, Donal started to improve slowly. We were getting ready to go to sleep one night and Donal said to me “by the way mum, one of my eyes has gone black”. We had thought things could not get any worse and they did. The next days were filled with MRI scans, Neurologists, Optomoligists but there was no obvious reason for the sight loss, the tumours around his eyes were not touching his optic nerve.

As there was no obvious cause, there was also no guarantee that he would not lose sight in both eyes. It was decided to bring his second chemo a day early to try and save the sight in his left eye. Then it was just a matter of wait and see, every minute of each day we watch him to see for signs of changes to his sight. Each day we give him new sets of Lego (he is a complete lego nut!) so that we could see him build the set, following the instructions and finding the tiny parts, when he was doing this we were reassured that he still had the sight on his left eye. His eyesight is being checked now on a regular basis, he has not regained any sight in his right eye but also his left eye has not declined so we remain hopeful.

Donal slowly improved, after a month we got to take him home for a few days. We were planning to have six days at home but due to a temperature spike, we ended up back in hospital after 3 days, we soon realised that this was how it was going to be.

Donal has now completed his 80 day induction chemotherapy. We are delighted that as each week has gone by he has got stronger and we are beginning to see the old Donal coming back to us.

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