Tuesday, 24 May 2011


Super, smashing, great, unbelievable, fantastic, brilliant, omg omg omg the good news just keeps pouring in.
We went down to Birmingham on Sunday, kissed my 3 older angels goodbye and left them with their granparents and into the taxi we went. 2 boring hours later and many head nodding moments we arrived in Birmingham. Harry slept all the way. He must have then had some foreboding as he grizzled all night. We snuck a KFC into the hotel room as a Fish Finger sandwich was £13, yes £13 and it was very yummy indeed. The pearly white towels had a greasy finger wiped look.
We went over to the hospital for 8am and Harry was in theatre by 8:45. I am used to the goings on, but danny was a nervous wreck cos despite being a paramedic cannot bear to be in a hospital when his loved ones are involved, and usually backs out, and then in steps my sister to take his place. But all the way down in Birmingham, and without the sanctity of the hotel he could either stand outside for the whole day or bite the bullet and come in. So the bullet was bitten and to be honest he was very good. Didnt come into the anaesthetic room but was there waiting outside to give me a hug.
45mins later we were met by the consultant on the ward. Harry was in recovery and ok. Cue held breath. I was dreading what he was going to say, I had cemented a thought in my mind that the chemo hadn't worked and the tumors were the same if not worse. But NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO. The tumors had responded unbelievably well. He had 3 on his right eye. 2 had been almost obliterated and he managed to do laser therapy to these. The larger one had gone down to a third of its size, but as it was over the macula area (this part gives you your sharp frontal vision) he wanted the chemo to shrink it more before he did some laser treatment. The left eye had a total retiunal detachment and one large tumour right in the middle of the eye. The tumour was drastically reduced, but even better was that his retina was almost back in place. It showed up some seedlings which could become active tumors but once the retina is completely back in place these will be lasered off to stop them ever growing.
What we didnt realise was that the tumors would leave behind a scar in the form of calcified bony deposits which will never go away. Some are little dots and some are bunched together, so Harry will never have brilliant vision, but they don't know what level he will have, I suppose that will come to light further down the treatment path. I know he can see more as he looks at his hands. We have to try and stimulate his eyes as much as possible now and will be contcted by a therapist to help.
I don't care, my precious baby boy is responding to his treatment and that is good news. I never thought I would want to put him through it, but can't wait for his next chemno session as I know its working.
Now a small downside, his white blood count still hasnt recovered, gone up a smidge to 0.4 so he can't have chemo today, we have to wait til next week. They expected this and are not concerned so a week of keeping bugs at bay and his temperature down. He has lost a little weight, he was 6.2kg 3 weeks ago in Manchester but now down to 5.8kg. He has slipped down to the second centile in his red book, hope it gets back up a little by next week as I don't want a feeding tube putting in. He should be like the others were at this age, chubbly and cuddly not skinny and bony (i'm just jealous as I'm still a little too chubby ha ha)


  1. AWWW reading it all again, despite being still ecstatic after talking on the phone, is still a BRILLIANT feeling!!! Well done for having such a medically respondant child :) Everyone I told said YIPPEEE! May it continue :)

  2. It's your "even shorter nearer forty sister's" fault that I'm commenting here as she's kept up her reports upon little Harry. I'm so happy for you that the news is good for the little tyke - days like this make me look around and smile at everything and everyone (very unusual for this here grumpy ol' git. All the best to you and yours, especially little Harry.
    Best regards,