Though witnessing my Harry so lifeless and in pain was the hardest thing ever. I felt helpless. The calpol and intermittent ibuprofen was not hitting the spot. Virus or no virus I felt Harry had been left to suffer, no one really caring except myself as I was off work, managing him 24/7.
As the week progressed this time 4 years I started investigating how to get a private ultrasound as I needed more clarity on what was wrong with Harry and needed to know we had ruled everything out.
On 11.11.11 Harry was more lifeless than the previous days so I took him in my arms to see the G.P. and she was shocked to see Harry in the state he was. Finally we were taken seriously and went home to pack for a stay in LGI. On the 12.11.11 Harry had 2 ultrasounds at LGI and the massive tumour was identified in his abdomen. Cancer was discussed as the most probable diagnosis.
I have been asked how I felt when I heard those words. Well initially I was relieved at being taken seriously and I wasn't neurotic. However, I did not really know what it all meant and how it would affect our lives. The week that followed enlightened me as we were quickly transferred onto the oncology ward.
Harry had several tests that week that required anaesthetics, starvation, blood tests and a biopsy which left him with a 9 inch scar. He had his first blood transfusion, started chemo as he was slipping through our fingers and had his first nasal gastric tube fitted!
This was a taster as to how our lives would be for the next 2.5 years! As that first week unfolded I realised the enormity of what neuroblastoma cancer is and the effect it would have not only on Harry, but all of us.
The enormity did not hit me until Saturday 18 th November, when I ventured into Leeds to get a new mobile phone. I'd forgotten Christmas was on thd horizon and seeing the coca cola lorry with the fake snow, the shops with all their festivity and all the people frantically shopping for Christmas, I felt like I was stood still looking in on a world I did not belong to. My fear was that Harry would not make Christmas. I nearly fell in a crumpled heap in the entrance of marks and spencer, but managed to knock onthe window of a nearby police car and sat in the back for a few moments to gather myself back together! From that moment it was sink or swim and I chose swim.
Now we do not have Harry on this earth with us I still choose swim. Though do have some sinking days, particularly this time of year.
'Take a break' magazine are going to feature a story in their next edition of Harry's illness from Callum 's perspective. I have heard the story verbally and it is in 'take a break style' so a little twee in places, but overall I feel it highlights the plight of siblings and details Harry's treatment and relapse. In light of the story that is unfolding on Coronation street and the decision to play down the neuroblastoma story of Hope, since the cancer has not spread, which is not typical of those diagnosed with neuroblastoma, I hope our story is read by many and the true depiction of what can happen is understood further.
I also want to share a very useful arcticle another bereaved parent shared, as it depicts an accurate analysis of the life of a bereaved parent.
By Angela Millar