Saturday, 11 February 2012

Way to go Harry

Well the dreaded trip to Birmingham arrived, along with the ice again. Unfortunately there were no hilarious clips of macho men slipping on the ice, but some stupid farmers did help me over a patch of slippy road whilst driving back after dropping Matthew at school. One was using hand signals to guide me to the part which wasnt slippy, unfortunately his interpretation of the highway code leaves little to the imagination and he guided me directly onto the patch where Torvil and Dean would have found it difficult to stand up. Give the men their due, they were pretty strong and they pushed me uphill till I could get a grip and drive off. Unfortunately for one, the patch was close to the edge of the road and he got a face full of mud as my tyre slipped before gripping. Obviously I couldnt stop to apologise and check he was alright, but I LAUGHED all the way home har har har.

Anyway, due to the ice I didnt want to risk getting stuck so arranged I would collect Rachel after the taxi picked me up, slightly worried the taxi wouldnt make it up the hill. But he arrived half an hour early, good job I was ready and alas (he is a very nice man) it was the 60 a day drive at 60mph grandad. Out of the window went the early arrival. I'll take it stedy he said, just in case, now there's steady and there's steady but this was ludicrous. We had the obligatory 'coffee' stop whilst he topped up his nicotine levels. But he got us there safe.
We were allocated room 201. This is the biggest room in the hotel, with a huge amount of floor space and 2 double beds. Harry had a whale of a time, and enjoyed bouncing on Rachels bed.

Anyway, Friday morning Harry went across to the Oncology Day unit and amazingly enough decided to stay awake, despite being starved. He had a lovrly time with the play specialist Claire, and she found his new love of bouncing soon wore her arm muscles out.

The little horror known as Arnie from the last visit was replaced by a slightly better behaved Taylor. Actually it was his parents that needed a slapping, get off your lazy backsides and play with your child.
Harry was second on the list again, although the 6m old baby looked bigger than Harry.
At 10.30am I carried my now sleeping baby into theatre. It doesnt get any easier watching them put your baby to sleep. A quick coffee and we were back to wait for him to come out. This is the wait I hate the most, but eventually (after some tutting and I think they're gonna speak to us after the next one) Harry's consultant sneaked up behind us and led us to the room for our little chat. He is expert at giving nothing away so you have no idea if its good or bad until he speaks.
Well anyway, good news. His right eye remained free of new growth, this is 2 trips on the trot now. That is excellent news, and long may it continue.
His left eye, however had 3 small seeds again but this is a vast reduction in number as it was 8-10 a few visits ago. There was an area on his retina that they are a little concerned about. Round his optic nerve was an area of discoloration which is unusual and something they dont often see. Its usually where fluid or blood has leaked into/under the retina ie a stain but it can also be a sign that tumor tissue is going to grow. They think its the staining as the appearance has not changed over the last few visits, but I suppose some tumors can be so low grade they take ages to grow. If this is the case, and due to the fact its over the optic nerve, and the pathway out of the eye into the rest of his body, they need to keep an eye on this. But all in all they were pretty upbeat and we will be back again in 3-4 weeks.
I waited for Harry, who seemed to take ages to wake up and took him back to the waiting area to have lots of cuddles and to feed him.
Taylor went in next, and what happened next almost made me cry for him. His parents had obviously gone on the coffee run,and after half an hour hadnt returned. Taylor hadnt needed treatment and was out quite quickly. The doc came into the waiting are carrying a sobbing child to look for his mum or dad. No sign, Taylor was by now even more hysterical and upset his mum or dad wasnt there. He sobbed 'they've run away and left me' well the whole waiting room blinked back the tears for him. How could his parents do that, I am itching to get back, I would actually rather not go. They strolled up as we were actually getting into the taxi, some 20mins late.
We couldnt believe our luck, they had rung the taxi and it looked like we were going to get a quick getaway and an early arrival home. Fantastic.
You can imagine our disappointment when 60 a day 60mph man stuck his head round the door and beckoned us. GRR GRR GRR. Out of the window went our extremely early arrival home.
I shouldnt comnplain, I am lucky they pay for and provide transport.

I have to add though, to those who are jumping up and down and rejoicing, that Harry still has a long long way to go, and his right eye might not behave itself next time. You see, Harry has a defective gene and whenever his retinas grow, when they lay down a new cell there is a 50:50 chance it will be a cancer cell, and we can only hope that its only good cells that are put down each time. His retinas will stop growing when he's 5-7 years old, hence his long journey still to come. We are elated that he is where he is at the moment, but remain guarded so we will not be devastated (any more than we need be) should new things start to grow.
I am so so proud of my little fighter, he's giving cancer a run for its money.


  1. Harry has long way to go but he is a fighter and we are all here for him and his family xx

  2. What a lovely, brave little boy he is. Glad that the trip was a step in the right direction although I think you have the right attitude to be guarded.