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.