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

[Big Jim]

William's still doing well, though it looks like he has chicken pox.
His counts are slowly coming up and engrafting. Thought I should post this video. It was tweeted by the Anthony Nolan Trust and I feel it's a very powerful message in its own right.
please watch it if you have a moment. I really hope in years to come that we (including WIlliam) can meet the donor also.

View: http://www.youtube.com/watch?v=g0dgaCQ1PFY

 

[rusky]

That's good news - not the chicken pox!

Max has just had it. It wasn't us either!

How long before his WBC is recovered?

 

[annedonnelly]

I bet you wish chicken pox was the worst you had to worry about!

Fingers crossed for William

 

[User169]

William's still doing well, though it looks like he has chicken pox.
His counts are slowly coming up and engrafting. Thought I should post this video. It was tweeted by the Anthony Nolan Trust and I feel it's a very powerful message in its own right.
please watch it if you have a moment. I really hope in years to come that we (including WIlliam) can meet the donor also.
View: http://www.youtube.com/watch?v=g0dgaCQ1PFY

Very nice! All the best to william.

 

[Big Jim]

That's good news - not the chicken pox!

Max has just had it. It wasn't us either!

How long before his WBC is recovered?

His counts are starting to recover (or rather the new stem cells are engrafting), but today he looks really rough covered in chicken pox and has a nasty rash. fevers are back also.

Just hope whatever it is, is containable as not so good today. Very up and down unfortunately.

 

[Big Jim]

We had a really worrying night. His rash vastly worse, lips swollen, hi respiration rate (liteally panting), sats dropping, fevers, etc.
Dr's were very worried at around 1.00 am and called on the "on call" consultant to come in, and the intensive care retrieval team were ready to come. They decided to try Steroids as it could be graft verses host, and that seemed to sort him out. His White blood count is now 4, with 3 neutrophils. So, they think that the rapid engraftment has caused this reaction and the steriods basically surpresses the immune response (and why he improved).
Here's a picture from this morning:

 

[Big Jim]

He's a bit better today. Though still having problems with his Oxygen Saturations.
I think Bone Marrow Transplants are really rough on the little bodies and the kids can go through a lot of pain with Mucositus from the Chemo. I think this is what drives me to want to help find a non intrusive cure so that the poor little kids won't need to go through this horrible pain.

 

[Big Jim]

We had a very dodgy day yesterday at the hospital. William was ok, though looked eye(y) when I arrived. But then suddenly became tied. Heart started racing to almost 180 bpm, respirations flying above 50, and he was puffing and panting and Oxygen saturations were low also and he needed an oxygen mask + a fever. In the past this sort of thing has been a step before intensive care admittance, but thankfully a dose of Paracetamol sorted things out. I think, as the Nurse mentioned, things are different now to in the past. Previously, this kind of illness was because of neutrophenic Febrile Sepsis, and treated with Anti-biotics, but he currently has Graft Verses Host Syndrome which is sort of an allergic reaction, so once you get it under control again he calms down.
Certainly I feel like the past weeks have aged me a great deal!!!

It sounds like they're going to start withdrawing the steroids today to try and ween him off them. So, I think apart from giving his parents a fright, everything is ok.

 

[Big Jim]

All better today and yesterday.
We're now thinking that there are three seperate rashes, one from the graft verses host syndrome (the speed of his new blood cells rising in his bone marrow has a chemical byproduct that causes a rash, leaky veins, and difficulty breathing). An allergic reaction to a drug called Cyclosporin (which has since been withdrawn), and perhaps a few chicken pox (which has come back whilst his counts were down). But anyway, he's looking much better than a few days ago and without fevers, so hopefully the Dr's will today reduce his steroids further (which are making him grumpy) and the large number of Anti-biotics and anti-fungals from today onwards.

 

[Danny91]

Hi Jim. My mother was diagnosed with AML and the past nine months have been a battle. Fortunately she put up a strong fight when the odds were against her and managed to get into remission - hopefully we can stay there. My thoughts are with you and your wife, little William sounds like a strong character and I can only imagine the worry this must be causing you.

You are giving a great deal towards one day beating this terrible illness and you are an inspiration.

 

[Big Jim]

Hi Jim. My mother was diagnosed with AML and the past nine months have been a battle. Fortunately she put up a strong fight when the odds were against her and managed to get into remission - hopefully we can stay there. My thoughts are with you and your wife, little William sounds like a strong character and I can only imagine the worry this must be causing you.

You are giving a great deal towards one day beating this terrible illness and you are an inspiration.

I'm really sorry to hear that Danny91. I know and have seen exactly how horrible AML is - I think the photo I put at the top of the thread sort of says everything. - THat was last year, this year William couldn't even straighten his legs for about 6 weeks after relapse (even with full dose Morphine)!!!
It's extremely aggressive, and hard to treat. It's great your mum's in remission. Will she be going for a BMT? or just the Chemo route?

Please send her my best wishes and I hope she can remain in remission. Also keep strong Danny.

My hope is that in time research will mean that a simple oral drug will be the cure for most Leukaemia's (well, I wish that for all cancers). I've heard of some amazing advances in treating prostate cancers, so if we keep at it - and funding research we'll get there in time.

Today William is slightly better again. Nothing dramatic, just looking a little better. Symptoms reducing. still has a rash, but adema (leaky veins) seems to have gone. To give an idea, yesterday he was 15.15 Kg's. Today, he dropped to 14.4 Kg's. So that's basically water retention.
It's looking like, if all goes well he'll be home in 10 to 14 days. I can't wait

 

[Danny91]

Glad to hear he is improving and the sooner he can get back home the better!

She was prepared to take the BMT however she opted to take part in the clinical trial of drugs in which she was given a double dose of the regular drug. She responded fantastically to this chemo and to be fair her improvement was pretty rapid. We had a few scares when she did get home and she picked up infections. Food hygiene was the cause of these infections two of the three times just as a heads up - we did get told it was likely that she would not recover from one of the infections. She has completely all three courses of her chemo and since being home her counts have risen enough for the hospital to reduce her visits to weekly - it just shows that no matter how bad the odds are there is always hope.

Such a cure would be ideal and on my mothers clinical trials she did take a new drug that she responded well to. It does show that the research is being put to good use and your charity ride will be helping make a difference.

 

[Big Jim]

Glad to hear he is improving and the sooner he can get back home the better!

She was prepared to take the BMT however she opted to take part in the clinical trial of drugs in which she was given a double dose of the regular drug. She responded fantastically to this chemo and to be fair her improvement was pretty rapid. We had a few scares when she did get home and she picked up infections. Food hygiene was the cause of these infections two of the three times just as a heads up - we did get told it was likely that she would not recover from one of the infections. She has completely all three courses of her chemo and since being home her counts have risen enough for the hospital to reduce her visits to weekly - it just shows that no matter how bad the odds are there is always hope.

Such a cure would be ideal and on my mothers clinical trials she did take a new drug that she responded well to. It does show that the research is being put to good use and your charity ride will be helping make a difference.

That's fantastic. A similar story, a 3 year old's parents were told that his Cancer was beyond treatment, and they would have to let it run it's course. The parents begged to try anything, so an adult trial drug was given a go and it worked! Ian Botham has done amazing things towards research in the past, but I certainly feel I need to do my small bit also.

Best of luck to your mum, I know all about infections, etc. As I joked with the Dr's, when a new patient is diagnosed perhaps we should be given a wall chart where we can tick off all the chemotheraphy, anti-biotics, other drugs, virus's, bacterial infections so we can see how we do. William's had so many of these it's truely unbelieveable. But, I think the skill of the Dr's to manage his conditions is again amazing.

 

[Danny91]

It just shows that sometimes you have to take a risk. Hahaha yes it is shocking - it's not just the illness itself but everything that comes with it. I did not realise myself all of the extras that come along with it.

Keep us updated on little William!

 

[Nigeyy]

Hey, sorry to hear about his recent stuff.... we're pulling for him from this side of the atlantic. Best wishes, and keep us updated.