Sunday, 31 March 2013

Easter Day

Well Easter Day last year was on 8 th April and Harry was in LGI having chemotherapy to stimulate his stem cells production in readiness for harvesting his stem cells.
This year we should be celebrating having the rest of our lives ahead ofus, however as you know Harry's scan showed that he has 3 hotspots of cancer growing within him.
Despite frequently thinking and being aware of how high relapse is in Neuroblastoma cases, actually being faced with the knowledge that our child has relapsed is very different. The intensity of grief we felt last weekend is indescribable. We felt Harry had died already, yet he was still with us, smiling and able to have fun. So it felt like a parallel universe to be grieving for the anticipated loss of our son, but at the same time having our boys still laughing, fighting and happy!
We went to the Moscow State Circus last Sunday afternoon, this was an amazing performance, enjoyed by all 4 of us. To see Harry laugh and talk so much about it afterwards is priceless!
Callum was mesmerised and remained sat still between his seat and my lap, throughout, this does not often happen for Mr Rigglepants!
The circus gave us a boost and reminded us of the need to pack as many trips and fun times in as possible over the coming weeks/months.
Our mood has fluctuated incredibly and the evenings and the middle of the night thoughts can be the worst. Waking up in the morning is not fun either, as you open your eyes, feel good for a split second, but then remember, oh yes my son had been given a life sentence of cancer.
Harry has been to school this week and really enjoyed it. He is making his mark on the school community. He seems to frequently play games with year 2, pairing up with his new best bud Seth, whereby they seem to start games that encourage many year 2 boys to join in! Harry is a larger than life character and he has got his Mo Jo back after so much gruelling treatment. This is wonderful to witness, but at the same time tinged with sadness that his life expectancy will be so short. I feel he has the ability to be anything he wanted in life and would have made a great contribution to society.
Harry had his bloods taken on Wednesday to see what the scores on the doors were. Paul and I also went to visit Martin House hospice. We felt it is definately a resource that we will use. We can all stay there for respite care and the whole family is looked after, which we will need at some of the very stressful points as Harry will need his pain management controlled. He can also die there and it felt like the right place too for Harry to end his life as we will all be supported in the hours/ days following the biggest loss we will have had to endure yet. Yes, during Harry's treatment I did contemplate Harry dying. Every parent who has a child with cancer contemplates this st some point and mentally plans their funeral. Again I have mentally thought about Harry's funeral, this time acknowledging the reality of planning this.
With so many things to think about, we were actually relieved that Harry's bloods were too low thus week to have to make any decisions on whether we should be giving him any more chemotherapy to try and prevent the cancer spreading so quickly. Our brains hurt as it is. Though in all honesty Paul and I agree that Harry has been through enough toxic treatment and at present we agree enough is enough. We can't face the prospect of him having any more chemotherapy that will make him sick, lose his appetite, affect his bloods and lead to him needing more transfusions. The end result will be the same, there is no treatment as yet that will cure a relapsed Neuroblastoma cancer case.
This week Harry has had the odd cramp and twinge, but had remained well enough to fully participate in life.
Yesterday I took Harry and Callum swimming, then we went to Harlow Carr and met friends to complete their Easter trail. Harry was racing around with his friends, a joy to see. We ended the day by having tea at Gusto's Italian with our friend Janey. Harry was still full if it when we returned home at 7 pm and was keen to tell daddy who had been working all about our day.
Today we have been to church, had lunch with Granny and Grandad and then met Seth and Eli to fly planes on the field opposite my parents house. Whether its the chocolate or the fact Harry is high on life at the moment, well he remained giddy till he was in bed!
So long may the good times continue, we will treasure every moment.
You never know what tomorrow will bring, but you can make the most of today and make it count!
We have a starlight, make a wish granted and intend taking Harry to legoland. We will be organising this sooner rather than later to add to our bank of memories.

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