November 22 2011 continued

On 12.11.11 following the 2 ultrasounds I was in away relieved to know that I was no fussy mother, who was out of her mind with worry re: the fact that Harry was not getting better. People had told me that viruses can take a couple of months to get over, but I think in the back of my mind I knew something more was up. I remember discussing the extreme night sweats Harry was having with Paul (husband) and commenting that that was what a friend of ours had prior to being diagnosed with cancer. However, the consultants do not save you from any punches and on that Sat eve, by myself, was told that my son had a tumour on his tummy, which was almost certainly cancerous and very likley to have secondaries. hey went into detail how life changing this would all be for us and treatment wouold go on for some months blah blah. I felt numb and could not believe it. The idea of our family being split, pulled and sent through one of the most stressful periods of our lives was hard to get my head around. I thought moving house had been stressful, the agonsising months of are we moving are we not, the fact the first house sale fell through last Christmas, then in Jan resold, but it was not until May 26th the sale went through. well that would be nothing in comparison and that process nearly blew our minds, the co-ordinations, the packing etc.
However, I am very pleased to have moved as I feel the support just around the corner from us is going to be a godsend. plus my parents live at the bottom of the hill. Had our house move been successful, prior to last Christmas we would be living in Ilkley and my lovely support network of friends and family in Otley not so easily accessible. Therefore I do feel that processes happen for a reason, though would never in a million years have thought that cancer was so close on the horizon for my fit, healthy, happy, intelligent boy HARRY aged 4.
Harry was also devastated at not going to school in Sept. Being a September baby he just missed out on going to school and many of his friends from baby group and nursery have made that transition already. However, as things work out it has been the best thing that school is still several months away, thus he can nearly be at the end of his treatment when he begins school.

November 22 2011

Well my friend Claire has set up a blog for me to discuss with all, Harry's progress. This is to reduce texts, emails etc to everyone keeping you informed as I know there are many, many people who have been affected by Harry's diagnosis on 12.11.2011. We are very grateful to all those keeping Harry in their thoughts and praying for him. He has neuroblastoma cancer. He has a tumour in his tummy connected to his adrenal gland. He has almost certainly secondaries in his bones or lymph glands. Tests results are to confirm the secondaries, but his consultants are certain that this is the case and so have commenced him on chemo last Friday. He is on a high risk intensive plan of chemo which means he will have chemo every 10 days and have 7 courses, so a 70 day plan. Half way through he will be scanned to ensure the chemo is doing its job which is to shrink the tumour, then scanned again at day 80 to ensure again the tumour has shrunk. Providing it has shrunk he will have his tumour removed. Then he will have radiotherapy, then providing that is successful a 4 week blst of chemo, which will strip his immune system and he will be in an isolated room. He will require all vaccines to be redone. Then if this is successful he will undergo a 6 month plan of having vitamin A and a trial drug, which has nasty side affects, but has more chance of blsting the cancer for ever. We already know from his biopsy, which required an 8 inch incision that the make up of the tumour does not have the worst chromosone associated with this cancer, so increases his chances of responding to treatment.
However Neuroblastoma is a rare childhood cancer and there are only 80 - 100 cases in Britain a year. However, LGI is center of excellance so I believe and every effort will be made to provide the treatment and tests necessary to enable our Harry to return to the vibrant boy we all know and love. There is no post code lottery with regards treatment and drugs for children's cancer, so that is fantastic. LGi is linked to worldwide info on Neuroblastoma, so that means whatever recognised treatment or trial there are, we will have access to them.
Harry became poorly early October 2011 with aches in his legs, which then progressed to his tummy. We had 2 hospital admissions to Airedale Hospital and he was diagnosed as having a virus, which is a typical way of the beginings of this process. On 11.11.11 I was very concerned about the level of pain that Harry was in so took him back to our G.P. and with the fantastic support of Vicky McKeaver at Westgate surgery, we were sent to LGI. After 2 ultrasounds on 12.11.11 it was confirmed about the tumour.
In the week that followed 12.11.11 Harry has had 2 ultrasounds, a CT scan, biopsy - more like major surgery aws said with 8 inch incision, a port line inserted for chemo to be given, an echo, bone marrow test, NG tube fitted. In all 3 anaesthetics.
This week his tests are being rounded off by a MIBG scan, involving radioactive fluid from Germany being put into Harry and then 2 scans following to see where the Neuroblastoma has spread to. We hope to get all test results by the end of the week.
It has been a testing week and the enormity of the last week and the rollercoaster ahead is mind blowing.
My emotions have been up and down to the greatest degrees.

First Blog - Test!

This is a test!