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

Big Jim1

Hi, I have had a tip off that it's a good idea to post in this section also, so please excuse me if you've seen this already. Also I hope this is ok Mods.

Anyway, My 3 year old son William Lyne was first diagnosed with Acute Myeloid Leukaemia Type M7 in Feb 2011 (aged 2 at that time). He presented with a lot of pain early on and needed a constant morphine background to help through the days. “AML” is the Adult form of the disease (as opposed to the commonest form of “ALL” in children which thanks to research has a significantly better outlook).

He was treated as an inpatient at the Royal Marsden in Sutton, England until July 2011 when we were advised his chance of relapse was only 30%.

We were always advised that a relapse within a year would not be good as it would be hard to get William back into remission again, so were always on edge during this period.

Unfortunately William relapsed over Christmas (Christmas day was the first major and clear sign of a relapse). He has since had 3 courses of strong Chemotherapy again as an inpatient at the Royal Marsden in Sutton and is due a to start a bone marrow transplant (the only known cure following a relapse) in May again as an inpatient at the Marsden. His current chances of survival/ mortality are 50:50. The bone marrow transplant will take an average of 6 weeks as an inpatient, then many months of worry about virus/ infections which can (and have recently been seen to be) be fatal. Though clearly having a transplant in the summer is advantageous with respect to catching a Virus.

Though I wish I could cure this horrible disease, I know this is beyond me, though I can support the people who can make a difference with financial support.

With this my brother David and I + my friend/ colleague Paul Richardson have decided to cycle around the Island of Zealand in Denmark (around 260 miles) in September this year with the hope to raise money for Leukaemia and Lymphoma Research. We plan to do the ride over 5 days.


Our charity link is:

http://www.justgiving.com/williamlyne

Though you can equally donate by mobile phone text (SMS) i.e. Lyne55 £1/ £2/ £5/ £10 TO 70070 to donate. e.g. texting LYNE55 £2 - donates two pounds.

I hope you will support me in my quest to prevent other children getting this horrendous disease.



Regards.,

James

Wrath Rob

Hi James, I'm very sorry to hear about your son. A friend of mine has a 5 year old boy who was diagnosed with leukaemia 2 weeks before Christmas and is also being treated at the Royal Marsden. Having seen the effect on their family my heart truly goes out to your son, you and everyone else at home. His father and I plus 5 others are doing something very similar to raise money for the hospital too. Good luck with your ride.

In the mean time, there's a donation on its way.

bromyG

Although not leukaemia, as a dad with a son who had to have much hospital treatment in his early years, I'm aware of the heartache this must be causing you and your family. Good luck for the planned ride and I hope you are very successful in your fundraising. Donation made.
BromyG

Big Jim1

Wrath Rob wrote:

Hi James, I'm very sorry to hear about your son. A friend of mine has a 5 year old boy who was diagnosed with leukaemia 2 weeks before Christmas and is also being treated at the Royal Marsden. Having seen the effect on their family my heart truly goes out to your son, you and everyone else at home. His father and I plus 5 others are doing something very similar to raise money for the hospital too. Good luck with your ride.

In the mean time, there's a donation on its way.

Thanks Rob. We're in the Marsden Sutton, or will be back in there very soon. If your friends son is around in May, let them know WIlliam's name, or PM their name and I'll wish them the best of luck in person. We had this all last year, then the relapse so, sometimes it's good to talk to other people in the same position as you get a better idea of what to expect.

We did the Marsden March (7 of us) last month and raised somewhere between 3K and 4K (I personally raised about £500). It was a great day, but didn't push me as hard as I felt I should be. I mean this may sound strange, but I've seen my boy in a lot of pain, and just felt I should share some of that in a challenge. I also wanted to do something very specific to Leukaemia, though an amount of the Marsden Charity funds do go towards researching Leukaemia and also paid a lot of the funds for the childrens unit we're staying in.

Thanks for the donation, and best of luck with your challenge also. Please let me know the URL and I will of course sponsor you.

gtvlusso

Donated.

I am sat in the office, just going to go and sit by myself for a few minutes - a bit overwhelmed after reading the story.

Good luck and god bless.

Big Jim1

gtvlusso wrote:

Donated.

I am sat in the office, just going to go and sit by myself for a few minutes - a bit overwhelmed after reading the story.

Good luck and god bless.

Thanks for the donation gtvlusso, I very much appreciate your sentiments. The good thing is that William has a chance of cure still, and this is because (not only the skill of the Dr's and Nurses's at the Marsden & local teams) + Meds, but the main ingrediant is that one selfless person has given their time to be a bone marrow donor (and happens to be a match with my boy). Without that person WIlliam will relapse again and the cancer will become more resitant to the point it'll be untreatible and he will die.

Also, there are three elements to why he is alive today.
1, Chemotheraphy
2, Anti-Biotics
3, Blood.

1 and 2 can be bought. 3 is a gift from ordinary people on the street and is again a selfless act.

So apart from funding research the other thing that I feel strongly about is obviously donation of blood and stem cells. I've been a blood donor for 6 years, and for anyone who doesn't do this, but feels this is a good thing (and is well enough to do so) the link is http://www.blood.co.uk

It's possible that as a bone marrow donor (stem cell donor) we will never be called, but the more people on the database, the better the chance for people like William to find a match.

Currently a lot of people are matched with donors in Germany,I think because they have a very large database.

meanredspider

My thoughts and empathy are with you.

My 13 year old (now 15) had Ewing's Sarcoma (literally 1-in-a-million) - a "sizeable" tumour in his pelvis. Some 18 months later we're only just coming out the other side of this after a year of heavy chemo and a massive op in which they removed about 1/3 of his pelvis, nuked it, and put it back in. He still has monthly chest x-rays to ensure his lungs are clear (the usual "next stop" for Ewing's) but it's looking positive.

It's amazing the effect these things have on you. Having dealt with this (100 nights in hospital last year with him) I now feel invincible - if I can cope with this I can cope with anything - how hard can it be in comparison? I did the Puffer MTB race this year with almost no notice but knowing that I could do it. I'm busy raising money for cancer charities - within my family I guess we've raised £15k - and I'm doing as much as I can including donating platelets etc.

Stay positive and don't think about the odds - it gets you nowhere. Good luck and all the best. You can count on my support.

Richard

flimflam_machine

Hard to find the words right now. Best wishes for a full and speedy recovery to William and a safe and successful ride to you, David and Paul. Good on you for doing something positive out of such a tough situation. A donation's on its way.

Big Jim1

meanredspider wrote:

My thoughts and empathy are with you.

My 13 year old (now 15) had Ewing's Sarcoma (literally 1-in-a-million) - a "sizeable" tumour in his pelvis. Some 18 months later we're only just coming out the other side of this after a year of heavy chemo and a massive op in which they removed about 1/3 of his pelvis, nuked it, and put it back in. He still has monthly chest x-rays to ensure his lungs are clear (the usual "next stop" for Ewing's) but it's looking positive.

It's amazing the effect these things have on you. Having dealt with this (100 nights in hospital last year with him) I now feel invincible - if I can cope with this I can cope with anything - how hard can it be in comparison? I did the Puffer MTB race this year with almost no notice but knowing that I could do it. I'm busy raising money for cancer charities - within my family I guess we've raised £15k - and I'm doing as much as I can including donating platelets etc.

Stay positive and don't think about the odds - it gets you nowhere. Good luck and all the best. You can count on my support.

Richard

Thanks Richard.
It sounds like you've had a horrendous time of it too. It just doesn't seem right that a 13 year old should have to deal with things like that. My william had a chlorma (A myeloid sarcoma ) as part of his AML. A horrible tumour right on his bottom. Everytime we sat him down in his high chair (before diagnosis) he went mad in pain. Horrible to know that you can actually feel the lump also. Chemo alone sorted it out thankfully.

I know what you mean about getting stronger. I personally feel more determined than ever. I also agree with statistics meaning nothing. William had 30% chance of the disease returning, but it did!.

Best of luck for the future.

Big Jim1

flimflam_machine wrote:

Hard to find the words right now. Best wishes for a full and speedy recovery to William and a safe and successful ride to you, David and Paul. Good on you for doing something positive out of such a tough situation. A donation's on its way.

THanks for the support and donation flimflam_machine. All the support builds our determination ever more.

veronese68

I must admit I couldn't read this when I was at work earlier. I can't begin to imagine what you are going through, I can only wish you all well.
I had a lymphoma myself a few years back and I always said I thought it was much harder for my wife to deal with as she had to cope with the kids and run the house, whilst I was just ill and grumpy.
I can no longer give blood, although I used to, due to the treatment I had. But, as on the thread on CakeStop I would urge those that can to do so. Also if you feel you are able sign up to be a bone marrow donor.
Leukaemia and Lymphoma Research are obviously a charity I support. I would recommend anyone that may feel so inclined to have a go at the London Bikeathon ride they organise and raise some money for a worthy cause. Unfortunately I can't make it this year, but I thoroughly enjoyed it last year.
Donation has of course been done. Good luck Jim

Big Jim1

Veronese68 wrote:

I must admit I couldn't read this when I was at work earlier. I can't begin to imagine what you are going through, I can only wish you all well.
I had a lymphoma myself a few years back and I always said I thought it was much harder for my wife to deal with as she had to cope with the kids and run the house, whilst I was just ill and grumpy.
I can no longer give blood, although I used to, due to the treatment I had. But, as on the thread on CakeStop I would urge those that can to do so. Also if you feel you are able sign up to be a bone marrow donor.
Leukaemia and Lymphoma Research are obviously a charity I support. I would recommend anyone that may feel so inclined to have a go at the London Bikeathon ride they organise and raise some money for a worthy cause. Unfortunately I can't make it this year, but I thoroughly enjoyed it last year.
Donation has of course been done. Good luck Jim

Thanks Veronsese68. I'm sorry to hear that you had Lymphoma. My gran unfortuntaly had Lymphoma also but didn't get through, and it knocked me for 6 as I was living with her at the time.

Thanks for the sharing your story and also for the donation. Good shout with the blood donation and bone marrow donation also. This is something I feel very strong about also, and thus far has kept William alive and will hopefully cure him. I'm sure that in time a cure will be found, it's just a matter of time. Did you see the program on Horizon about the Marsden? It was inspiring for sure.

jedster

Jim,

all the best wishes to you all

J

Big Jim1

jedster wrote:

Jim,

all the best wishes to you all

J

Thanks for the very kind and generous donation jedster + the best wishes. Very much appreciated.

veronese68

Entry for the London Bikeathon is now open. Discount for early entrants. All in aid of Leukeamia and Lymphoma Research. They also have a 75 mile route taking in Box Hill and Leith Hill this year.

mitb

Oh god I am sat at work with tears in my eyes, what a wendy. I don't know how i'd cope if anything like this happened to my boys, but I guess you just do out of love. All my best wishes and donation go to you mate, incredible bravery from all of you but especially your little one, what a boy.

mitb

Oh god I am sat at work with tears in my eyes, what a wendy. I don't know how i'd cope if anything like this happened to my boys, but I guess you just do out of love. All my best wishes and donation go to you mate, incredible bravery from all of you but especially your little one, what a boy.

prawny

I've not read the whole OP as I've got a 4 y/o boy and 2 y/ girl and my dad has lymphoma.

What I have done is clicked the link and I'm waiting for the blood bank to call me back. Cheers for giving me the kick up the 'arris I needed.

When payday comes around I'll donate too, it wont be much, but's it's what I've got.

Good luck.

veronese68

prawny wrote:

I've not read the whole OP as I've got a 4 y/o boy and 2 y/ girl and my dad has lymphoma.

What I have done is clicked the link and I'm waiting for the blood bank to call me back. Cheers for giving me the kick up the 'arris I needed.

When payday comes around I'll donate too, it wont be much, but's it's what I've got.

Good luck.

Well done, I think clicking the link and getting on the register is worth far more than any monetary contribution we can make.

Big Jim1

mitb wrote:

Oh god I am sat at work with tears in my eyes, what a wendy. I don't know how i'd cope if anything like this happened to my boys, but I guess you just do out of love. All my best wishes and donation go to you mate, incredible bravery from all of you but especially your little one, what a boy.

Thanks mitb. I think last year when he was first ill (jan 2011), it was horrible as they didn't know what was wrong with him and he was getting more and more unwell in time. So in a strange way hearing he had Leukaemia was a strange relief as we actually knew finally what it was and they could start treating him. Not that I'm having a pop at the local hospital as they did every test possible and did everything to get him every obvious test in good time - William just had an unusual presenatation that even tested the Marsden.

The only thing is there are two types of Leukaemia and WIlliam managed to get AML which is more common in Adults and has less of a chance of cure.

Certainly in the pictures, I think William's expression says everything. You can see the pain he is in and how unwell he feels. I think the picture also shows how nasty Leukaemia can be and hence why we have to move heaven an earth to find a cure.

I think the feeling I get is not of sadness (though I've had that at times), but complete determination to beat this disease. I would love to personally find the cure, but I'm just too old to re-train (and not clever enough), so this is my chance of helping to do something. I know that LLR have helped to fund important descoveries into Leukaemia, so this really is a good way of doing my bit to find a cure.

Thanks for the sentiments and the donation. It's very appreciated.

Big Jim1

prawny wrote:

I've not read the whole OP as I've got a 4 y/o boy and 2 y/ girl and my dad has lymphoma.

What I have done is clicked the link and I'm waiting for the blood bank to call me back. Cheers for giving me the kick up the 'arris I needed.

When payday comes around I'll donate too, it wont be much, but's it's what I've got.

Good luck.

Thanks Prawny. People donating blood has kept my son (and others) alive - there are no two ways about this - it's a fact. When you've completed the donation sit down and enjoy your drink + treat and have a big pat on the back and feel the true warmth of gratitude from the person receiving it. It's the best present you can give someone.

Big Jim1

bromyG wrote:

Although not leukaemia, as a dad with a son who had to have much hospital treatment in his early years, I'm aware of the heartache this must be causing you and your family. Good luck for the planned ride and I hope you are very successful in your fundraising. Donation made.
BromyG

Thanks BromyG. Hospital treatment completely turns your life upside down. Sometimes when we're well we never know how lucky we are.

Big Jim1

Veronese68 wrote:

prawny wrote:

I've not read the whole OP as I've got a 4 y/o boy and 2 y/ girl and my dad has lymphoma.

What I have done is clicked the link and I'm waiting for the blood bank to call me back. Cheers for giving me the kick up the 'arris I needed.

When payday comes around I'll donate too, it wont be much, but's it's what I've got.

Good luck.

Well done, I think clicking the link and getting on the register is worth far more than any monetary contribution we can make.

Blood donation is a great thing and I think you're definately right that it's worth more than a monetary contribution . It's free to give and can save lives.

gbsahne001

Big Jim1 wrote:

Blood donation is a great thing and I think you're definitely right that it's worth more than a monetary contribution . It's free to give and can save lives.

+1 been a blood donor on & off for 26 years and it's something I strongly believe in; currently at 33 donations and have been on the Anthony Nolan database since I was 16.

cush123

Small donation made. Good luck to you and your family.

UndercoverElephant

What can you say about something like this? Nobody should have to go through what your family, or any of the others who've posted, is going through. I can't imagine it, or at least, as a father I try not to. Good luck to you and yours.

Big Jim1

gbsahne wrote:

Big Jim1 wrote:

Blood donation is a great thing and I think you're definitely right that it's worth more than a monetary contribution . It's free to give and can save lives.

+1 been a blood donor on & off for 26 years and it's something I strongly believe in; currently at 33 donations and have been on the Anthony Nolan database since I was 16.

I'm not sure if there's a thumbs up smiley. But it's people like you that make a difference to people like my son.

Keep up the good work and next time you give blood give yourself a pat on the back (if that's possible to do, otherwise get someone else to do it) and think of how useful what you are doing is to people like WIlliam.

EDIT: I hope I don't sound condescending in what I'm saying. I'm just really trying to show my appreciation to all the blood donors out there. I'm one also, but my blood alone won't repay the enormous debt and sincere grattitude that WIlliam and we owe to people like you.

Big Jim1

Cush123 wrote:

Small donation made. Good luck to you and your family.

Thanks Cush123. Very much appreciated

Big Jim1

UndercoverElephant wrote:

What can you say about something like this? Nobody should have to go through what your family, or any of the others who've posted, is going through. I can't imagine it, or at least, as a father I try not to. Good luck to you and yours.

Thanks UndercoverElephant. Hopefully with research this disease will be a thing of the past. I'm convinced from things that i've heard that we are making progress in this battle. Lets hope there's a simple non-intrusive pill that will do the job before too long.

Thanks again for the good luck and donation, much appreciated.

Big Jim1

Currently on day 9 of his Bone Marrow Transplant. All is going ok, though has plenty of fevers. Just waiting for his new stem cells to produce some new blood cells and fight off any infections.

meanredspider

Good luck with that. My son had stem cells harvested as part of his treatment in case he needed them later - fortunately he didn't. Sometimes the fevers are just a response to foreign matter in the blood rather than just infections