Updated: Jun 26
Our world turned upside down on 12th November 2011. Harry had been poorly for several weeks and we'd been to and fro to the GP and our local hospital, consistently being told that Harry had a virus. However, on 11th November at 11am in 2011, I was sat in the doctors waiting room with a very lethargic Harry, when we were seen, the doctor fast tracked us to A&E at Leeds General Infirmary. Following 2 ultrasounds on 12th November the consultant came to see me early evening. I was alone as my husband had gone home to be with our 2 year old Callum. I was told that a large tumour had been found in Harry's abdomen, that his symptoms of aching legs, lethargy, loss of appetite were all symptoms of Neuroblastoma Cancer. I'd never heard of this type of cancer before. We were catapulted into a medical world and overnight our lives changed forever. I had to give up work as Harry's treatment was so intense, it revolved around frequent stays in hospital, planned and unplanned. This went on for 18 months and then there was a light that normality would resume, however we were devastated to learn at end of treatment tests that Harry had 3 new tumours in his bones. He was then labelled as being palliative care and we were told he'd have 4-6 months. He was now age 5 1/2. His body had been ravaged by treatment, his blood counts were low and having done a lot of reading around treatment plans that could kill him and most likely not cure him, we set about planning to have as many adventures as possible. We found out about The Thomas Ball Children’s Cancer Fund and learnt they had a holiday home in Dorset. We approached them and were offered a week in the summer holidays, which we aimed for, not knowing if Harry would make the summer. In June Harry's tumour in his femur was causing him a lot of pain and he commenced on Morphine. The side effects of morphine is hard to watch and manage as he'd get itchy and irritable, he'd sleep for a day and then we would have a really good day. Harry was given radiotherapy to shrink this tumour for pain management purposes. The side effects were awful and he was very sick afterwards. He was so sick we were told not to expect him to live much longer and our hopes of making our Thomas Ball holiday seemed slim. However, Harry came through. He was changed to a different type of morphine that had less side effects and we were able to plan for our week away. I hadn't worked for 18 months and not knowing how Harry's health would be we appreciated knowing we weren't paying for our holiday and knowing if we couldn't go it would be offered to another family. We managed to get to Dorset and were blown away with the perfect beach location. Harry was on buprenorphine patches and could get tired, so having a beach on our doorstep was perfect as well as having the swimming pool.
We were also linked into Southampton hospital for support, which we utilised when I learnt I'd forgotten some of Harry's buprenorphine patches. I'd remembered all his emergency medicine and forgotten the routine ones!
This was soon rectified and I was reassured as the nurse I liaised with was the sister of our ward manager in LGI!! Communication was seamless and the nurse even dropped off the patches on her way home. We had such a blast of a week, fitting as many adventures in as we could. Making up for lost time spent in hospital. Even when home, activities were limited as when you have a child with a suppressed immune system from treatment, catching infections from his own bacteria on his skin can cause an infection let alone going to crowded places, swimming and seeing animals. We had an amazing day trip to the Isle of Wight, the sun shone all day and we packed so much in, including the cable car ride to see the Needles, a boat trip round The Needles and a visit to Black Gang Chine, before watching the sun set on the ferry back to the mainland. A day that makes me still
smile and happy. Having a child with cancer effects the whole family and I was so conscious that Callum's life had been turned upside down too. He was never sure who would pick him up from nursery, or who would put him to bed as at the drop of a hat we could be in hospital with Harry. The holiday meant we could regroup as a family in time of turmoil and uncertainty. There were days which would be a late start as Harry slept in, but having the beach so near meant I could take Callum to have some fun whilst dad and Harry stayed at the Lodge. Being located not far from Paulton Park we were able to fulfil Callum's wish of going to Peppa Pig world. Harry needed some break through liquid morphine to help with pain management, which left him lethargic, but not being too far away meant we didn't have to set off early to get there. We were able to explore Peppa pig world and even managed a few rides in the rest of the Park. Seeing the boys smile and have fun was the greatest gift of all.