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

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  • Big Jim1
    Big Jim1 Posts: 182
    All good today.

    No fevers, or problems with breathing, though still having nasty skin reactions. They're starting to ween him off the steroids and are starting to withdraw a few drugs.

    So things are going in the right direction.

    The Steroids are making him moody, so no photos today.
  • engy
    engy Posts: 131
    great news Jim. seems to be all in the right direction.
  • Big Jim1
    Big Jim1 Posts: 182
    For sure Engy.
    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 An allergic reaction to a drug called Cyclosporin (which has since been withdrawn), and perhaps a few chicken pox (which has come back whilst his counts were down).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.
  • Rigged
    Rigged Posts: 214
    Happy to hear they're getting to the bottom of a few things. That seems to be the trouble with these things, once you have more than a few things going on at once it becomes increasingly difficult to attribute the route cause of each problem. But progress seems to be moving on in the right direction!
  • Big Jim1
    Big Jim1 Posts: 182
    Rigged wrote:
    Happy to hear they're getting to the bottom of a few things. That seems to be the trouble with these things, once you have more than a few things going on at once it becomes increasingly difficult to attribute the route cause of each problem. But progress seems to be moving on in the right direction!
    For sure. When you have multiple things it's difficult to work out what's going on. Just as well William's under good Dr's who seem to be on the ball. :)

    Today he 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 :)
  • engy
    engy Posts: 131
    Great news Jim.. im really chuffed things are going in the right direction.
  • Big Jim1
    Big Jim1 Posts: 182
    engy wrote:
    Great news Jim.. im really chuffed things are going in the right direction.

    THanks for the support engy, it definately helps :)

    He was looking good on skype last night, and the smile had returned a little bit. Will see how he is later.
  • Big Jim1
    Big Jim1 Posts: 182
    A quick picture from today. He's looking better, but lost a lot of weight

    Au8qhNrCQAE8zef.jpg
  • Peddle Up!
    Peddle Up! Posts: 2,040
    He's looking miles better to my untutored eyes. Good luck young man.
    Purveyor of "up" :)
  • merkin
    merkin Posts: 452
    Wow, he's looking chirpier. :D:D
    Great to see him smiling like that!
  • Big Jim1
    Big Jim1 Posts: 182
    Peddle Up! wrote:
    He's looking miles better to my untutored eyes. Good luck young man.

    The thing I've learnt over the past year and a half, is that it's amazing how it's possible to see the health of a person from the way they look. I'm sure a GP assessed a patient the minute they walk through the door, because it just seems possible to tell. So I know exactly what you mean, in the same way I knew when he was seriously ill - you can just tell somehow.

    He's definately looking better as time moves on. Which is great to see. :)
  • Big Jim1
    Big Jim1 Posts: 182
    merkin wrote:
    Wow, he's looking chirpier. :D:D
    Great to see him smiling like that!

    It definately is. just hope they can come home soon. It's been a long time!
  • engy
    engy Posts: 131
    Jim,he looks grand mate.. Im well chuffed, just showed the picks to my wife. Onwards and upwards.... :D
  • Big Jim1
    Big Jim1 Posts: 182
    engy wrote:
    Jim,he looks grand mate.. Im well chuffed, just showed the picks to my wife. Onwards and upwards.... :D
    Thanks Engy. It's lovely to see a sick child improve :)

    Today he's better again. He still doesn't like me taking photos, so this is the best I could do :) Hopefully he'll be home soon.

    AvGvpNOCQAA3kGk.jpg
  • Big Jim1
    Big Jim1 Posts: 182
    engy wrote:
    Jim,he looks grand mate.. Im well chuffed, just showed the picks to my wife. Onwards and upwards.... :D
    Thanks Engy. It's lovely to see a sick child improve :)

    Today he's better again. He still doesn't like me taking photos, so this is the best I could do :) Hopefully he'll be home soon.

    AvGvpNOCQAA3kGk.jpg
  • mingmong
    mingmong Posts: 542
    Big Jim.

    Really pleased to hear this. Just brilliant.

    A speedy recovery awaits!
  • mgmidget1500
    mgmidget1500 Posts: 12
    Big Jim,

    Great pictures. I hope you manage to have him back home soon.
    "Enjoy yourself. These are the good old days you're going to miss in the years ahead."
  • Big Jim1
    Big Jim1 Posts: 182
    thanks :)

    Even better still today and dr's continuing to ween off drugs. There's talk of home leave this weekend - which is first step to being discharged. Fingers crossed the progress continues. :)
  • engy
    engy Posts: 131
    Great news. Home the weekend excellent
  • Big Jim1
    Big Jim1 Posts: 182
    engy wrote:
    Great news. Home the weekend excellent

    Certainly hope so. We never rely on things, until we're actually in the car going home. :)
  • Big Jim1
    Big Jim1 Posts: 182
    Currently the plan is, home leave this weekend. then if he's well on monday, he'll be discharged.

    All this can change at a moments notice with a fevers, but so far, very good.


    Today he's started eating again which is another bonus :)

    So, I can restart my training campaign again hopefully. :)
  • Peddle Up!
    Peddle Up! Posts: 2,040
    Fantastic. Good luck.
    Purveyor of "up" :)
  • Big Jim1
    Big Jim1 Posts: 182
    We managed to get home :)

    See the pic in the car
    AvcPENHCEAEXDid.jpg
  • DIESELDOG
    DIESELDOG Posts: 2,087
    Big Jim1 wrote:
    We managed to get home :)

    See the pic in the car
    AvcPENHCEAEXDid.jpg

    Awesome!! So glad to hear and see.

    Love n hugs

    DD
    Eagles may soar but weasels don't get sucked into jet engines.

    www.onemanandhisbike.co.uk
  • NervexProf
    NervexProf Posts: 4,202
    Lovely pic Jim, delighted to see him absorbed - so hoping this bodes well for him and your family.
    Common sense in an uncommon degree is what the world calls wisdom
  • engy
    engy Posts: 131
    Magnificent news Jim. Have a great weekend.
  • Big Jim1
    Big Jim1 Posts: 182
    Was formally discharged yesterday. We still have to be careful with him and he'll have regular check ups. But it's a major milepost for us. :)
  • mingmong
    mingmong Posts: 542
    Brilliant news Jim.
  • Peddle Up!
    Peddle Up! Posts: 2,040
    MingMong wrote:
    Brilliant news Jim.

    +1
    Purveyor of "up" :)
  • mgmidget1500
    mgmidget1500 Posts: 12
    Jim,

    Fantastic news, I hope you all had a brilliant weekend. I am hoping that this permanant for you all.
    "Enjoy yourself. These are the good old days you're going to miss in the years ahead."

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