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

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  • merkinmerkin Posts: 452
    :D:D:D:D
    Best news ever. Hopefully he will bounce back super quick.
    So, you will be dusting off that trike for him before you know it. 8)
  • engyengy Posts: 131
    Great News Jim.... Really pleased for you and the family
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    Great News Jim.... Really pleased for you and the family

    :)
    Just an update on William.

    He is still at home and hasn't spiked any fevers for ages now. He still cannot walk, but is able to eat more as time progresses + the fact he is still home is a good sign that things are going in the right direction.
  • Peddle Up!Peddle Up! Posts: 2,040
    Great news. Thanks for keeping us updated.
    Purveyor of "up" :)
  • Big Jim1Big Jim1 Posts: 182
    Just a picture from earlier. He's just started walking with a chair and I think he looks pretty well (all considered) in this photo. AwJ1F3SCQAEVjdz.jpg
  • NervexProfNervexProf Posts: 4,202
    Lovely to see that smile - I am sure he, like you is glad to be home among his family.
    Common sense in an uncommon degree is what the world calls wisdom
  • brettjmccbrettjmcc Posts: 1,361
    That's great news and a great update Jim!
    BMC GF01
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  • engyengy Posts: 131
    Great news Jim... always a reminder for me reading this about taking things for granted.
  • Big Jim1Big Jim1 Posts: 182
    Definately a reminder not to take things for granted. For me the speed in which it all happened was breathtaking. One day all is ok, the next BANG - your life's changed.

    Hopefully now he's home we can return to some for of normality.
  • Big Jim1Big Jim1 Posts: 182
    Just an update on William. He's still fever free and his rash is slightly improved, so not much has changed. However his Hickman line hasn;t bleed back for the past few days, so this is a worry as it's not possible to check his blood counts and various levels., We're hoping it'll be ok on monday as it looks like a problem with his positioning rather than a block, but I suppose worst case is he'll need it replaced. The Hickman line is the one you can't see and gains access to his blood via his chest.
    Training is going ok. managed 41 miles on Thursday which for me is good. Body felt ok, but a bit headachy after. Any hints on how to avoid dehydration? I mean obviously drink, but drink what and how ofter? What sort of foods I should eat?

    Here's a picture from earlier today.

    AxMBOwCCIAAsnq2.jpg
  • deswellerdesweller Posts: 5,271
    He's looking bright!

    The amount of fluid you need to take on obviously depends on conditions. I have a 60 mile route where on some days I've drank nothing due to it being too cold, and got through 4 bottles of fluid on other days where it's been really hot. It's worth making a note of places along your training routes where you might be able to refill (e.g. pubs and mini-marts).

    If you want to help your body take the fluid on faster you can add third-party electrolytes (e.g. Nuun or Dioralyte) to your bottles or make your own solution (it's harder to make home-made taste anything other than completely rank though). The other advantage of Nuun et al is you can easily carry it around, which is not as easy with a bag of salts.
    - - - - - - - - - -
    On Strava.{/url}
  • Big Jim1Big Jim1 Posts: 182
    DesWeller wrote:
    He's looking bright!

    The amount of fluid you need to take on obviously depends on conditions. I have a 60 mile route where on some days I've drank nothing due to it being too cold, and got through 4 bottles of fluid on other days where it's been really hot. It's worth making a note of places along your training routes where you might be able to refill (e.g. pubs and mini-marts).

    If you want to help your body take the fluid on faster you can add third-party electrolytes (e.g. Nuun or Dioralyte) to your bottles or make your own solution (it's harder to make home-made taste anything other than completely rank though). The other advantage of Nuun et al is you can easily carry it around, which is not as easy with a bag of salts.
    Great advice. thanks for letting me know that. I think it'll definately be an issue for me, as have had dehydration headaches even though my legs have felt fine.

    Will discuss with the other 2 doing the ride. Was wondering about a hydration pack on my back, but think that'll make me even more sweaty
  • engyengy Posts: 131
    Glad tosee the little man is doing well ? hope the progress continues.
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    Glad tosee the little man is doing well ? hope the progress continues.

    Thanks Engy. All still well. No change at the moment. I've just gotta get fitter for the ride :)
  • Big Jim1Big Jim1 Posts: 182
    All is still fine with William health wise. His Hickman line (in his chest) decided to stop bleeding back a few weeks back, which is a pain. So they (The Marsden) put him in for it to be removed last Tuesday and a "Port" to be inserted instead. Unfortunately he had a bit of a coldy type thing going on + had a spike of a fever on the Monday when he arrived, but improved over night and was ok on the day of the op. So, he was literally gowned up and at the point of going in when the consultant anaesthetist pulled the plug. So that was that. I think it was also because he still had some other virus’s showing up on the MPA swab which he’d been carrying for months and months, though funnily enough the MPA swab he had the day of the operation showed he was now clear of them (but the results take a few days to come through if that makes sense).

    Funnily he’s been better since last Tuesday, though obviously they still can’t get blood out of him. Currently they’re going to try Brighton I think to see if they can slot him in. Because we’re just west of the east Sussex border, we come under Worthing and they can’t really perform this kind of operation.

    So really in summary, his rash is better, though he picked up a new cold type thing from his sister, he seems to have coped ok. He’s still coldy, but not worryingly so. Really we’re just treading water and hoping that 1, he doesn’t pick up anything nasty which he can’t fight. 2, His Graft verses host disease starts to calm down and the rash starts to improve (which it seems to be). 3, Most importantly I think that the Leukaemia doesn’t come back.

    My Twitter is currently playing me up, so waiting for that to come up again and i’ll post a picture so you can see the difference in him.
    I managed 53 miles on my bike on Sunday, but had a bit of knee pain near the end which isn’t good.
    Just got to try and keep it up I suppose. drunk loads of isotonic drinks and the headaches weren't quite so bad. Just need to lose more of the belly now really
  • BigJimmyBBigJimmyB Posts: 1,302
    Keep up the good work, Jim and best wishes to the little fella.
  • Big Jim1Big Jim1 Posts: 182
    William's still doing ok.
    Here's a picture of him playing with a new toy.
    Ay9-X2MCMAA5Vms.jpg
    It's still a case of watch and wait and the longer he stays well, the better.
    Managed 120 miles on the bike this past week which I'm happy with.
  • Big Jim1Big Jim1 Posts: 182
    Just a quick update on William.
    He's now just over 12 weeks post transplant, and seems to be getting better as days progress. More energy, the rash is improving, more like a 3 year old really. So all is good.
    Here's a picture from a moment ago.
    A0AozvlCEAELlQ1.jpg
    The bike training is going ok. Have found that the Maxxis Detonator tyres that came with my Giant Seek 1 are puncture prone. So am just waiting for some new puncture proof tyres to arrive from amazon. I suppose training isn't just about fitness, it's also about logistics/ getting ready and solving any problems in advance. We've booked flights and the ride will start in Copenhagen on 13th September. Am hoping to upload photos on Twitter throughout.
    thanks again for all the donations. Am nearly at £8K now, which is 8 x what I originally wished for.
  • NervexProfNervexProf Posts: 4,202
    Thanks for the update Jim - young William certainly looks better; put on some weight and his hair is growing back.

    Good luck in your preparation for your ride. May the wind be at your back and the puncture fairy on holiday.
    Common sense in an uncommon degree is what the world calls wisdom
  • engyengy Posts: 131
    Jim, great news mate, im really happy for you and your family. Im sure others will benefit from the awareness from your story through here and twitter etc.
  • mingmongmingmong Posts: 613
    Jim, this is great news. I'm really happy to see that William is recovering. Best news ever.

    Good luck with the ride. Be sure to keep us informed.
  • Good news! I saw and responded to your thread over at Cycle Ch*t a while back. Keep going and send my regards to everyone!
  • Big Jim1Big Jim1 Posts: 182
    Just a quick update on William. He's still ok, though had a blood clot in his neck where his Hickman line was inserted. The Hickman line has since been removed and a port inserted which is a lot less intrusive I think as it doesn't have big dangly lines coming from his chest. Anyway the blood clot was treated with daily injections and has since reduced in size a great deal. He has also had a stomach sickness virus, which he seems to have shaken off after a week. He's obviously lost some weight, but otherwise he's pretty much back to normal. His graft verses host diease (his itchy rash) is also improving and his steroids are gradually being reduced. Hopefully soon he'll be off the steroids completely and will be able to return to pre-school.

    Here's a picture from a moment ago:

    A1pYTt5CMAA0UsW.jpg


    The fundraising is going well and currently sits at £8,319.00. Training has been ok, though I got really fed up with punctures on my Maxxis detonators, so I dumped them for some Schwalbe Marathon Plus which are superb. We're starting the ride on 13th September and I'm hoping my brothers phone will be able to tweet our progress. my twitter is @jameslyne1



    I just hope my dodgy left holds up!!



    thanks for the continuing support :)
  • Peddle Up!Peddle Up! Posts: 2,040
    Thumbs up, and fingers crossed.
    Purveyor of "up" :)
  • I'm flying off to Copenhagen tomorrow, and starting the ride on Thursday. Just wanted to thank all the people who have supported me and donated, etc. I'll post one last time once it's completed.

    William's ok ish still. His NG tube came out of his mouth when he was sick a few days ago, and we're trying things without.

    Here's a picture:
    A2Xk8yECAAARFma.jpg
  • LangerDanLangerDan Posts: 6,132
    Very best of luck with your trip, Jim.
    'This week I 'ave been mostly been climbing like Basso - Shirley Basso.'
  • Just a final message to say that we completed the 260 Miles ride on Monday 17th September, and I have just arrived back in England.

    A very cheesy picture of us in the charity T-Shirts:A3AndVdCEAAPsux.jpg

    There are more + GPS positioning of where they were taken on my Twitter page https://twitter.com/JamesLyne1
    The trip was pretty hard going especially on the Friday where we were cycling directly into very strong winds and rain (The winds were seen to be blowing trees down around Denmark). So it was hard work, but we managed to crack it ok.

    So, Thanks again for those of you that have sponsored me. We are around £250 off £10,000.

    I found the advice I received on this forum and cycle chat invaluable so thanks for that. Particularly the advice about the saddles, clothing and tyres.

    thanks again
  • Congratulations on the ride a worthy achievement and the very best wishes for your sons future.
  • Congratulations Big Jim.

    Onwards and upwards.
  • NervexProfNervexProf Posts: 4,202
    Well done Jim - a tremendous effort for a very worthwhile cause. Hope you hit the £10k mark.

    Trust the little fella progresses well?
    Common sense in an uncommon degree is what the world calls wisdom
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