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

Big Jim1Big Jim1 Posts: 182
edited June 2014 in The cake stop
Hi,
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) today (15/4/12) 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.

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Regards.,

James Lyne
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Posts

  • ProssPross Posts: 24,252
    Good luck, I'll be sponsoring you. My own daughter had a brain tumour when she was 4 (everything currently OK touch wood!) and my wife's young cousin had leukaemia which he appeared to have beaten before relapsing after a couple of years but has now been clear for about 4 years after a bone marrow transplant.

    I suspect many on here are already on the bone marrow register but if not I would urge you to sign up. Having been fortunate enough to donate myself I can honestly say it is the most rewarding thing I have ever been able to do.

    I hope everything goes well for you all.
  • pinnopinno Posts: 39,371
    I was diagnosed with AML in 1992 as a young adult. I spent 11 years going in and out of hospital, but I am still cycling. I am even a Dad now - something they said would be impossible after the radiotherapy and Chemo, another due 14th Aug! I raised money for MacMillan cancer relief at the Caledonia Etape, 86 miles with a chest infection in 2009.

    I presume you have a match throught he Anthony Nolan Bone Marrow Trust or a relative?
    I was lucky to have an 87% match with my brother. I guess all you can do apart from hope that the transplant will work, is make his life as comfortable and as magical as possible when he is'nt asleep or under the cosh of chemo.

    Tell William he can talk to someone who has been through it all anytime - just drop me a PM, it will help him to be positive by knowing every step is another step towards a life without drip stands, syringe drivers, hickman lines and that many have done it. Humour is great medicine, make him laugh as much as you can.

    Children do 'bounce' though. I wish you all the luck in the world. One step at a time James - don't worry about immuno supression post BMT, you've probably been through a lot of that already: those hefty doses of Antibiotics - nothing William or you have not experienced before. Just get him safely to the point where he is in remission and ready for the BMT. I've heard great things about the Royal Marsden - I was at the Hammersmith.
    Rob
    seanoconn - gruagach craic!
  • roypsbroypsb Posts: 306
    My heart goes out to you James and your dear little boy. I will certainly sponsor you sir.

    Roy.
  • schlepcyclingschlepcycling Posts: 1,579
    Donation done, least I can do. Enjoy the ride.
    'Hello to Jason Isaacs'
  • shouldbeinbedshouldbeinbed Posts: 2,732
    My son is 5 years clear of his tumour now and give or take a couple of teeth is fine again. It was touch and go at times and a hard slog but I know I'm a very lucky man to be able to say that and wish you all every bit as much luck and strength and support to fight it as we had.

    donation will be done as soon as I grab my wallet
  • Big Jim1Big Jim1 Posts: 182
    Pross wrote:
    Good luck, I'll be sponsoring you. My own daughter had a brain tumour when she was 4 (everything currently OK touch wood!) and my wife's young cousin had leukaemia which he appeared to have beaten before relapsing after a couple of years but has now been clear for about 4 years after a bone marrow transplant.

    I suspect many on here are already on the bone marrow register but if not I would urge you to sign up. Having been fortunate enough to donate myself I can honestly say it is the most rewarding thing I have ever been able to do.

    I hope everything goes well for you all.

    Cancer in children is very sad. Personally I've seen many children with Brain Tumours at the Marsden, and I shudder thinking about it. I'm so glad your daughter is ok.

    I'm on the Bone Marrow registry and a blood donor. I always push it in my update emails to family. With being on the registry it's the number of people that are on it, give the diversity and that's why BMT is saving more lives. As far as I'm aware, other than giving blood, it's the only transplant you can give alive that'll save a life. Though I suppose Kidneys also? But anyway, it's worthwhile cause.
    All the best of luck with your daughter and thanks for sponsoring me. :)
  • Big Jim1Big Jim1 Posts: 182
    roypsb wrote:
    My heart goes out to you James and your dear little boy. I will certainly sponsor you sir.

    Roy.
    Thanks Roy. Your support is much appreciated.
  • Big Jim1Big Jim1 Posts: 182
    My son is 5 years clear of his tumour now and give or take a couple of teeth is fine again. It was touch and go at times and a hard slog but I know I'm a very lucky man to be able to say that and wish you all every bit as much luck and strength and support to fight it as we had.

    donation will be done as soon as I grab my wallet
    5 years is good. With regards to Leukaemia 5 years is classed as Cured.

    Cancer is a without doubt the biggest fight of my and my wifes life. So I just really want to do something to helkp find a cure. I feel so angry that this horrendous disease is able to cause us so much pain.

    Thanks for the donation. It's very much appreciated and will help me through my ride.
  • Big Jim1Big Jim1 Posts: 182
    Donation done, least I can do. Enjoy the ride.

    Thanks schlepcycling. IT's very much appreciated and will help us to complete the ride.
  • Big Jim1Big Jim1 Posts: 182
    I was diagnosed with AML in 1992 as a young adult. I spent 11 years going in and out of hospital, but I am still cycling. I am even a Dad now - something they said would be impossible after the radiotherapy and Chemo, another due 14th Aug! I raised money for MacMillan cancer relief at the Caledonia Etape, 86 miles with a chest infection in 2009.

    I presume you have a match throught he Anthony Nolan Bone Marrow Trust or a relative?
    I was lucky to have an 87% match with my brother. I guess all you can do apart from hope that the transplant will work, is make his life as comfortable and as magical as possible when he is'nt asleep or under the cosh of chemo.

    Tell William he can talk to someone who has been through it all anytime - just drop me a PM, it will help him to be positive by knowing every step is another step towards a life without drip stands, syringe drivers, hickman lines and that many have done it. Humour is great medicine, make him laugh as much as you can.

    Children do 'bounce' though. I wish you all the luck in the world. One step at a time James - don't worry about immuno supression post BMT, you've probably been through a lot of that already: those hefty doses of Antibiotics - nothing William or you have not experienced before. Just get him safely to the point where he is in remission and ready for the BMT. I've heard great things about the Royal Marsden - I was at the Hammersmith.
    Rob

    THanks Rob. Aml is horrendous, and I feel sad for every person who has had it. My Grandad had CML and seeing him as a child will haunt me for life.

    But hearing stories such as yours helps us through the hard times, because we can see light at the end of the tunnel.

    Thanks for the advice and I will certainly PM you for any advice we need.

    The ROyal Marsden Sutton is an incredible place and there's no doubt in my mind why it's got it's reputation.

    congrats on the kids, that's also a great thing to have achieved.

    William has a 10 out of 10 match, so I'm not sure if that's 100%, but I know they said it doesn't get any better. His sister wasn't a match though.

    All the best for the future Rob.
  • cornerblockcornerblock Posts: 3,228
    James, I hope that your lovely boy William goes on to make a full recovery, and that the love from your family helps to get you all through this tough time.

    Good luck for the ride, never heard of Zealand in Denmark, sounds like an interesting choice.
  • p9umap9uma Posts: 565
    Donation sent, good luck you and your family, I wish you well.
    Trek Madone 3.5
    Whyte Coniston
    1970 Dawes Kingpin
  • Big Jim1Big Jim1 Posts: 182
    James, I hope that your lovely boy William goes on to make a full recovery, and that the love from your family helps to get you all through this tough time.

    Good luck for the ride, never heard of Zealand in Denmark, sounds like an interesting choice.

    Thanks Cornerblock, and thanks for the donation.

    Denmark is made up of loads of islands + 1 bit that's connected to Germany. Zealand is the island that Copenhagen is on, and Roskilde. The reason for Denmark is that my brother lives there + there are loads of cycle paths that avoid going on the road. Though we all like cycling, we're normally up to 30 miles kinda people and as and when. So this is by far the biggest challenge we've ever been through on a bike.

    THanks again for the donation and best wishes. IT's very much appreciated. :)
  • Big Jim1Big Jim1 Posts: 182
    p9uma wrote:
    Donation sent, good luck you and your family, I wish you well.

    Thanks for the donation and best wishes P9uma. It's very much appreciated and will help us get through it. :)
  • beefcake2beefcake2 Posts: 157
    Just donated. Hope all goes well with the ride! I can't imagine what you are going through but I wish you and your family well and hope your son is on the road to recovery as soon as possible.
  • Big Jim1Big Jim1 Posts: 182
    beefcake2 wrote:
    Just donated. Hope all goes well with the ride! I can't imagine what you are going through but I wish you and your family well and hope your son is on the road to recovery as soon as possible.

    Thanks Beefcake2 (said in a cartman voice).

    It's very much appreciated and the more support we get really helps us with positive vibes. :)
  • Just sponsored you, thoughts are with you and your family. Good luck with the ride.
  • Big Jim1Big Jim1 Posts: 182
    geoffgomez wrote:
    Just sponsored you, thoughts are with you and your family. Good luck with the ride.

    Thanks very much Geoff. It's very much appreciated.

    Am really looking forward to the ride and the donations make me really feel like we're doing something to make a difference. So thanks again Geoff. :)
  • GizmodoGizmodo Posts: 1,928
    My wife has terminal breast cancer, I have testicular cancer and even the dog has Lymphoma. But all this pales into insignificance compared to the suffering of a child. Keep the faith (and keep pushing the doctors). Best wishes, donation made.
  • Big Jim1Big Jim1 Posts: 182
    Gizmodo wrote:
    My wife has terminal breast cancer, I have testicular cancer and even the dog has Lymphoma. But all this pales into insignificance compared to the suffering of a child. Keep the faith (and keep pushing the doctors). Best wishes, donation made.
    I'm really sorry to hear that. I've heard it affects 1 in 3 of us and is a very cruel disease.

    The thing is, and I've spoken to other parents about this, that you always think it affects someone else. Then suddenly it happens and you can't believe how it's possible. William was horrendously ill last year, but recovered in the summer and Autumn and even started pre-school. Then he relapsed pretty much on Xmas day - there were signs that he wasn't getting over a cold, but the first real sign of Leukaemia symptoms was on Xmas day. His health then detiorated from a little boy so full of energy, to a ricduculasly sick boy needing blood transfusions and high levels of Morphine in the space of a few weeks.

    I so much want to do something to try and find an oral or i.v. drug that just stops it in its tracks and kills the cells. It can't be that far away .

    Thanks for the donation, and again I'm so sorry to hear of your situation.
  • Big Jim1Big Jim1 Posts: 182
    Is it possible, and I hope I'm not pushing it, Would anyone consider forwarding my link on also to anywhere they think might help the cause? I mean like Facebook or Twitter, etc.
  • PadgiePadgie Posts: 20
    Hello Jim,

    Donation done but just to say good luck with the ride but especially to your son William! Hope all goes ok!
    Keep the faith!

    Padgie
  • Big Jim1Big Jim1 Posts: 182
    Padgie wrote:
    Hello Jim,

    Donation done but just to say good luck with the ride but especially to your son William! Hope all goes ok!
    Keep the faith!

    Padgie
    Thanks Padgie. I really appreciate your support and good luck wishes.

    Hopefully all will work out well in the end.

    thanks again :)
  • Mr DogMr Dog Posts: 643
    Donation sent. Love to you all from one dad to another.
    Why tidy the house when you can clean your bike?
  • Big Jim1Big Jim1 Posts: 182
    Mr Dog wrote:
    Donation sent. Love to you all from one dad to another.

    Thanks Mr Dog and also for the donation. It's much appreciated. :)
  • mudcow007mudcow007 Posts: 3,861
    Donation Done!

    good luck on your ride dude an best wishes to William
    Keeping it classy since '83
  • Big Jim1Big Jim1 Posts: 182
    mudcow007 wrote:
    Donation Done!

    good luck on your ride dude an best wishes to William

    Thanks mudcow007. It's very much appreciated. as are your best wishes.

    Hopefully the BMT will be a cure for my boy.
  • cruiser33cruiser33 Posts: 464
    Wow! I was really moved by your story; I have just made a donation. All the very best to you, your family, and especially The Little fella.
  • My love and thoughts to you and your family (especially the wee guy).

    Donation made and link shared via facebook. (I would share via Twitter but the only person that follows me is the wife and she's sitting next to me the couch so i just told her)

    I hope it helps

    Alistair
    You shall not pass! (Unless I'm knackered then I don't really care tbh)

    Specialized Hardrock Sport 06
    Specialized Sirrus Sport 11
  • Big Jim1Big Jim1 Posts: 182
    cruiser33 wrote:
    Wow! I was really moved by your story; I have just made a donation. All the very best to you, your family, and especially The Little fella.

    Thanks Cruiser33. Thanks for the best wishes. Hopefully the BMT will do the trick.

    Certainly your donation will help go towards finding a cure.

    You know what one of the most heartbreaking things for me was. Last year he lost the ability to walk in Jan, then slowely regained it , and by June/ July he was walking, though not as a usual 2 year old should be, but ok.

    Come September he started Pre-school, but again had to be careful around all the children as he'd just get knocked over. Anyway, we decided to buy him his first bike for Xmas. So, I got this lovely little Giant tricycle from Wiggle.

    It was all delivered in time, I made it up for him and on Xmas day (literally Xmas day) when we gave him the bike he again lost the ability to walk and was in pain from the Leukaemia. So we had this new bike that any young toddler would love and didn't know whether he'd ever get to use it. It was quite upsetting at the time. Thankfully within a month when he was allowed home from the Marsden we sat him on it whatever. Just so that he'd used it.

    Oh well/.

    thanks again for the support :)
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