My 3 year old has cancer, and what I'm going to do about it

[Panter]

That's quite a moving image, no little boy should have to go through anything like that.
Delighted all is going well so far, my thoughts are with you.

I have a real phobia of blood and needles, I'm getting better with it though and will definitely try and attend to a session to start blood doning.

 

[Big Jim]

That's quite a moving image, no little boy should have to go through anything like that.
Delighted all is going well so far, my thoughts are with you.

I have a real phobia of blood and needles, I'm getting better with it though and will definitely try and attend to a session to start blood doning.

I agree, it seems wrong that they go through it.

My sister won't give blood because of the needles. To be honest, I just don't look. I also think that the thought is worse than the doing. It really is a very easy thing to do. Good luck if you give it a try.

But, today is day 5 and all seems ok-ish still. He had a 38.7 temperature last night, but was fine throughout the night so seems to be coping ok. Just got to hope his counts pick up soon.

 

[Big Jim]

Day 7 and he's still ok. No fevers. though sneezing, coughing and being sick, but this should subside when his counts recover.

He did start to grow back his hair during his 2nd and 3rd chemos as those particular drugs don't affect hair loss. Unfortunately his conditioning drugs this time do affect hair. So it's starting to fall out again, but it will grow back again.

So far, so good.

Hopefully in 3 days his counts may start to recover.

 

[Big Jim]

Day 9 and still ok-ish. Consultants and Dr's are happy with the way things are going. Though he had two high fevers yesterday, Paracetamol did the trick in getting them down along with Morphine to make him feel better. Hopefully his blood counts will recover in a few days and he will improve over time.

 

[Big Jim]

[QUOTE 1864851, member: 45"]That boy is going to need some spoiling when he starts to recover. Has he got a bike?[/quote]
Bought him a Giant Trike for Xmas. Then on Xmas day he lost the ability to walk, i.e. first major sign of relapse. So there we were stuck with this new trike and a son exceptionally unwell - was one of the most upsetting things about it. Thankfully after his first Chemo we got him home for a few days and one of the first things we did was get him on the trike.

He's lost the ability to walk twice, and I think during this transplant he has again also (having lost a kg and been pretty much bed bound for 3 weeks so far). Hopefully will be ok in a while again.

today is having regular fevers. but calpol are getting them down at present.

maybe a trip to intensive care soon.

 

[Big Jim]

Day 10 and his counts have just started to recover. He's still having regular fevers, but they are slightly longer apart from what they were yesterday. So it's all a good start and nice to see.

 

[pubrunner]

Cheers for all the updates, Big Jim !

I'm certain that quite a few of us have our fingers crossed and are following your updates.

 

[Big Jim]

Cheers for all the updates, Big Jim !

I'm certain that quite a few of us have our fingers crossed and are following your updates.

Thanks

He's improved slightly from yesterday. His WBC is now up to 0.2, but I think normal range for his age is about 8, 9 or 10. So that sort of puts a perspective on things. Certainly he has no Neutrophils at the moment, and anything under 1 is classed as being Neutrophenic and at risk of infection. So I think the point is, though his body is showing signs of recovery, he isn't out of immediate danger of infection yet. His Fevers have started to get further apart in time. So, a few days ago he was spiking before his next paracetomal was due, where as now he's spiking every 7 or 8 hours. I think the longer he goes between spikes proves that he's improving. i.e. sooner or later he won't spike at all.

He had a CT and ultrasound scan today to check for a fungal infection, but that all came up ok.

So really it's just a case of waiting and hoping still. Though even once his counts are recovered, he still has many months of being super careful and avoiding virus's. Then the 30% possibility that the Cancer returns.

A truely horrible disease. I was looking at jobs at the institute of Cancer Research earlier as this whole situation just drives you mad and makes you want to physically help find a cure. oh well.

Thanks for the best wishes and also thanks again for the donations. Currently over £5K.

 

[skudupnorth]

As a father of four daughters i feel for you and cannot imagine what you and your family are going through,you want to protect your kids from everything, even this evil disease.Good luck with everything

 

[Big Jim]

As a father of four daughters i feel for you and cannot imagine what you and your family are going through,you want to protect your kids from everything, even this evil disease.Good luck with everything

I think you touch on an important point, that you want to protect your kids from everything. But all you can do is literally look after them in the hospital and have to leave the treatment to the Dr's and Nurses. I think this is basically what motivates me, the only thing I can do is to try and help the people researching to find a cure by financial support. Hopefully after this treatment William will be cured, but certainly after one and a haf years in hospital it's taken it's toll on all of us and I just hope in the future they can find a simple tablet to cure instead of the current treatments. But the Royal Marsden are doing a superb job of treating him.

 

[skudupnorth]

I think you touch on an important point, that you want to protect your kids from everything. But all you can do is literally look after them in the hospital and have to leave the treatment to the Dr's and Nurses. I think this is basically what motivates me, the only thing I can do is to try and help the people researching to find a cure by financial support. Hopefully after this treatment William will be cured, but certainly after one and a haf years in hospital it's taken it's toll on all of us and I just hope in the future they can find a simple tablet to cure instead of the current treatments. But the Royal Marsden are doing a superb job of treating him.

Thats the other side of cancer people forget is the toll on the rest of the family,it all looks hopefull and then you can all lead normal lives and enjoy everything.Good luck again

 

[Big Jim]

Thats the other side of cancer people forget is the toll on the rest of the family,it all looks hopefull and then you can all lead normal lives and enjoy everything.Good luck again

It's ripped our life apart for about a year and a half. When you have a 2 year old (last year) 3 year old this year, you can hardly leave in hospital on their own. One of the parents need to be with him 24/7, then there's the other children in the family need looking after also. My wife has had to give up her job, I started a new job part time (couldn't go full time with William's condition), but am struggling to keep the hours up even though they're allowing me to work for home (hospital).

I know there are plenty of other disease's and conditions other than cancer, but William's condition has certainly turned our lives upside down. Also a reminder about how quickly, at the toss of a coin, your life can be thrown into complete disarray. A message here is to enjoy and love your kids (and family) each and every day as if it's the last day you have with them (not that you should assume they'll get sick, but never not do something that's important and leave for another day).

Currently day 13, and still waiting for his counts to come up fully. The Fevers seem to be much improved.

 

[Big Jim]

His counts have risen a little bit,

But his eyes look really sore and his cough seems to be getting worse. But no fevers for 27 hours now.

Funny little red spots are appearing also, which the Dr's don't think are part of the GvH disease. A professor is coming up to take a look at some point hopefully.

 

[Big Jim]

His counts have risen a little bit,

But his eyes look really sore and his cough seems to be getting worse. But no fevers for 27 hours now.

Funny little red spots are appearing also, which the Dr's don't think are part of the GvH disease. A professor is coming up to take a look at some point hopefully.

Registrar came up instead, was very disapointed - never met a professor of medicine before, probably never will.

All seems ok still, no fevers for ages it seems.

 

[Big Jim]

White counts continue to rise. But lots of little red spots appearing on his body which is worrying. :S