Friday 23 February 2007

One step forward ------- a few back

We had what we thought would be a routine blood test on Monday of this week whilst we went in for a bone marrow aspirate…

Actually when I say we, I obviously mean Adam, (why do I do that?)

His blood results showed a slight increase in his white cells, a continuing drop in his platelets and a normal red cell count.

The consultant rang on Tuesday to advise that they had found leukaemic cells in his bone marrow and that we needed to go in on Wednesday to discuss the options.

We duly went in and discussed the options, there were 3 and two of them were unpalatable so, on the basis that the Glivec is clearly not doing it’s intended job of holding his leukaemia at bay, we went with option 2 which is to use a brand new (just licensed last week) sister drug of Glivec that is used where the Philadelphia Chromosome become resistant to Glivec. The new drug is called Dasatinib.

So, the boy is now one of only 3 people at UCH who are on this new drug, the docs are throwing in a month of chemotherapy and some steroids for good measure and, if we keep going back for more we get a set of free glasses or a digital watch!

It’s a moveable feast this Leukaemia type thing!

Love to all.


Friday 9 February 2007

blogger blags some wonga

For reasons best known to anyone but me, I have been talked into running both the Paris and London Marathons in April. They are just a week apart (given I took 10 days to recover from the Dublin marathon, it could be interesting!) I couldn't get aTCT place in the London so had to take a place for the Seafarers UK charity, check out the link at and if you have any money left this time of year, do make a donation, it'll be helping a worthy cause!

Thursday 8 February 2007

Thursday 8 February 2007

Adam had his first visit to Roehampton on Monday this week, he had a rough weekend and was feeling quite poorly, we forget that he does get ill in a normal way and not everything wrong with him is related to the illness, sometimes he can just get to be plain old ill I guess.

We eventually got to Roehampton a good few hours later than we had been booked in and met with the doctor there, Adam wasn’t impressed with him and it’s amazing how important to Adam it is that he gets on with the docs, anyway had what amounted to an introductory visit, they cant do much at the moment about a prosthetic or about his walking training as he cant weight bear on the right leg owing to the heel not being healed yet.

He is quite weak and has lost weight so the plan is that he be referred to the physio department at our local hospital and they will visit at home and or have him in the gym for exercise and training for his leg muscles in advance of his prosthetic fitting.

His weight is very low, he doesn’t like too many personal details being given out but suffice to say that he’d be boxing featherweight and most of the girlies reading this would be jealous of his weight!

We got back from Roehampton and he had a major down; he had been quite depressed over the weekend and he said that he was fed up with his life and with being ill and not being NORMAL

I told him that he should shape up and get real, there were many people with much bigger problems than him! Take that Jade Goody for instance, she’s gone bonkers and that poor old Shilpa Shetty, she has to put up with being treated like a deity!

Well actually we sat together for a long time and talked and cried, then Pauline took over and talked and cried with him too. Eventually he rallied and began to bounce back.

Later in the evening he said ‘dad, I’m sorry for upsetting you’ which upset me all over again of course… Having a kid with Adams issues does make a modern man of you, I can cry for England now on a whim, takes hardly anything to set it off! Good god, I’ll be knitting and doing the washing up soon!

He is much brighter now, he’s eaten a bit more over the past few days and looks better, he’s just been bashing me as I wanted to nick something of his.

We are back in UCH on Monday to meet with the Vascular team and his Haematology team as well, his leukaemia has been sidelined by the feet of late but we do have a constant awareness that he may be winning this battle but that in fact, winning this battle simple allows him the opportunity to fight a bigger war soon.

On a technical note, without the Glivec, his silver bullet drug, he would not have any legs by now, it is this drug that, (we hope) continues to hold his leukaemia at bay and buys him the time to let his heel repair itself, without the drug he would have had to have had a transplant by now and in order to have that then both legs would have been taken off. (Note to the guys who unlocked the human DNA sequence – Cheers Chaps, we owe you one!)

Love to all.


Friday 2 February 2007

Adam Won - Staples 22!

Friday 2nd Feb

Adam had the 22 metal staples removed from the ‘little leg’ yesterday, he described it as, not unbearable pain but more like someone tearing out a clump of hair for each one. He was very anxious beforehand and I think the reality was probably better than he expected but bad enough anyway!

We are hopeful that the long awaited Vac Pump will arrive today and can be connected to accelerate the healing to his right heel.

He has a number of visitors due today and we are due on Monday to go to Roehampton limb fitting centre for our first visit to the guys with the metal legs, not sure what the plan is yet but will update as soon as we know.

Love to all