The main reason for me starting this blog was to capture my beautiful baby boy's awful ride to hell and back as he fights off the dreaded 'c' word. The story so far ....
Leading up to his 6-8 week review he'd been bugged with jaundice and going off to hospital to get bloods checked, but all the time I was wondering why his eyes seemed to roll around but put it down to him being a newborn. He went to the GP at 8wks for his check and she noticed he wouldnt follow the light, although he reacted to the light. She asked him to go back 2 wks later.
2 wks later he still wouldnt follow the light and she also picked up his rolling eyes and decided an eye specialist should look at him. One week later I took him to the hospital. They put some awful eye drops in, darkened the room and had a look, and found (in their words) some raised lesions on his eyes. Not being sure what they were, and having mentioned the new word to become fixed in our vocabulary, they decided a specialist team in Birmingham should look.
They rang the following tuesday and arranged for us to go down. He had a general anaesthetic on Friday morning and half an hour later we were sat down with the life changing awful news. Our baby boy has cancer in his beautiful big blue eyes. Bilateral Retinoblastoma its called. So rare only 30-40 cases are diagnosed each year and to put our minds at rest (as if they could) said its one of the most treatable cancers thst children face. He had one large tumour in his left eye, which had lifted his retina slightly and 3 tumours in his right. They weren't small enough for them to begin laser treatment, so Harry needed to start his chemotherapy first. They would arrange with Manchester to start that.
So we came home, had a lovely weekend in the sunshine as a family to await a phonecall from Manchester.
Monday afternoon, 4pm so not long to wait, Manchester rang. Could we be at the new Hospital for 12.30 the next day. So off we went, signed loads of consent forms and Wednesday morning my darling baby went under general anasthetic for 2 hours to have a Hickman Line, a lumbar puncture and a bone marrow biopsy done. He had his first dose of chemotherapy through the night and we were home later thursday evening.
One day at home and here we are Saturday 16th. I will go back and fill in the details of his op and chemo but this will now be his daily log