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

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  • engyengy Posts: 131
    great news ! Keep up the good work little man
  • Peddle Up!Peddle Up! Posts: 2,040
    +1
    Purveyor of "up" :)
  • Big Jim1Big Jim1 Posts: 182
    thank :)
    Now on day 3 post transplant and all seems well still. He's got a bit of a cough, runny nose and sneezes, but doesn't look overly unwell and doesn't have a temperature.
  • engyengy Posts: 131
    great news... thanks for the updates !!!
  • mingmongmingmong Posts: 613
    Fingers and toes crossed.

    +1 on the positivity :-)
  • BigJimmyBBigJimmyB Posts: 1,302
    Best wishes and positive vibes to William and all of you.
  • MccariaMccaria Posts: 869
    Donation made. Hope all goes well for you and your family
  • Big Jim1Big Jim1 Posts: 182
    Mccaria wrote:
    Donation made. Hope all goes well for you and your family

    WOW. THat has really made my day and put a major smile on our faces.

    I can't thank you enough for doing that. :)
  • Big Jim1Big Jim1 Posts: 182
    Today is day 4 and he's ok-ish. Not so good as yesterday, but still able to sit up and play. Has had temperatures upto 38, but they are going down on their own accord so Dr's are happy with him.

    :)
  • engyengy Posts: 131
    good news Jim... keep it up little fella
  • Big Jim1Big Jim1 Posts: 182
    Thanks Engy :)

    He's currently on day 4 and doing very well. A low grade temperature, with cough, etc. But still considerably better than we'd have hoped at this stage
  • Big Jim1Big Jim1 Posts: 182
    Currently on day 5. Had a 38.7 temperature last night, but all seems to have calmed down now. He's certainly coping ok and the Dr's seem happy. Just have to hope it stays this way until his counts pick up.
  • merkinmerkin Posts: 452
    Have signed up to the Antony Nolan register after reading this. Tried to sign up a few years ago but never heard back and never quite got around to redoing it.
    All the best.
  • engyengy Posts: 131
    Well done merkin..... really has got me thinking i need to do more... especially for vital charities like the Anthony Nolan Trust and others....-> is thinking hard how i can make a real difference ?

    My wife and I lost a baby in 2004 but in very different circumstances(still born with a birth defect). We were supported well by some charities. Need to do more....
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    Well done merkin..... really has got me thinking i need to do more... especially for vital charities like the Anthony Nolan Trust and others....-> is thinking hard how i can make a real difference ?

    My wife and I lost a baby in 2004 but in very different circumstances(still born with a birth defect). We were supported well by some charities. Need to do more....

    Sorry to hear about the baby. :( Charities are very good when you need them.

    The problem is which ones should we support.
    I think there are the following main categories.

    1, Research to prevent disease and have better less aggressive treatments.
    2, Support to get through the treatment (CLic Sargent, Leucan, potentially Anthony Nolan)
    3, Support when things are terminal or help familes grieve).

    we've supported The Marsden charity earlier in the year, as they cover research and buying new equipment. so 1 + 2 above.
    For 2 above, We've had an awful lot of financial help from Leucan (local charity). Clic Sargent have helped with advice + a bit of financial help. Anthony Nolan Trust have found a donor and got the new stem cells - so without them William wouldn't stand a chance.

    But I think that 2 and 3 would be less required if 1 is supported. i.e. if the problem is solved in the first place, then less money is required to support the sick people. so you're helping all 3 causes by putting money into research. Does that make sense what I'm trying to say?

    I definately need to do something in the future for Anthony Nolan Trust, but hopefully there will be time for that.
  • Big Jim1Big Jim1 Posts: 182
    edited May 2012
    merkin wrote:
    Have signed up to the Antony Nolan register after reading this. Tried to sign up a few years ago but never heard back and never quite got around to redoing it.
    All the best.

    Brilliant stuff. You may never be asked to donate, but if you are asked - then you will be giving hope to people like us. You can also sign up via http://www.blood.co.uk . If you give blood, they just take a little extra for the bone marrow tests.
  • t4rmact4rmac Posts: 23
    Found this post browsing the forum. Your family are incredibly brave. Donation on it's way...
  • mr_eddymr_eddy Posts: 791
    Donation sent, Whilst I Cannot begin to imagine what you are going through i do no what its like have cancer strike your family. I wish you and your family the very brightest future.
  • Big Jim1Big Jim1 Posts: 182
    mr_eddy wrote:
    Donation sent, Whilst I Cannot begin to imagine what you are going through i do no what its like have cancer strike your family. I wish you and your family the very brightest future.
    Thanks for the donation.

    I've had Cancer hit our family 3 times. It just seems to come out of the blue and hits you hard like a freight train :(
  • Big Jim1Big Jim1 Posts: 182
    Day 7 and he's still ok. No fevers. Sneezing, coughing and being sick, but this should subside when his counts recover.

    He did start to grow back his hair during his 2nd and 3rd chemos as those particular drugs don't affect hair loss. Unfortunately his conditioning drugs this time do affect hair. So it's starting to fall out again, but it will grow back again.

    So far, so good. :)

    Hopefully in 3 days his counts may start to recover.
  • mingmongmingmong Posts: 613
    Thank you for the update Big Jim.

    Let's all keep positive :-)
  • Big Jim1Big Jim1 Posts: 182
    Had a bit of a rough spell after waking up. So he's definately not so good this afternoon/ early evening. Had a bit of morphine and that's done the world of good. Shame they don't give a bit to parents also.
    Pic is of his hair starting to fall out, going to have to shave it as it's going everywhere. Literally you can pull clumps out as easy as anything. Atq2WUcCAAIOBfj.jpg
  • Big Jim1Big Jim1 Posts: 182
    Spiked another fever this morning. But currently ok, and consultant think he's looking well all considering.

    Though I think he looks quite rough. AtvaqOpCIAAn3wu.jpg
    Day 8 today, so still hanging on in there.
  • engyengy Posts: 131
    one brave little man, keep us updated mate.
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    one brave little man, keep us updated mate.
    Thanks Engy.
    Day 9 and still ok-ish. Consultants and Dr's are happy with the way things are going. Though he had two high fevers yesterday, Paracetamol did the trick in getting them down along with Morphine to make him feel better. Hopefully his blood counts will recover in a few days and he will improve over time.

    Everyday we receive details on his blood counts. Obvious not detailed, but gives the parents an idea.
    THe following is one of the slips we receive:

    AtvaN0OCEAA_zQx.jpg

    Hb is red blood, Plt is platlets, WBC is white blood cells. Neut is neutophils. Neutrophils are part of the WBC, so if WBC = 0 then Neutrophils are also hence why they're left blank.

    We are waiting for WBC to be greater than 0 (also Neutrophils)

    His hair was really coming out yesterday which was really grim as it's everywhere and seemingly itchy. Decided to shave it shorter to hopefully make it less messy.
  • Big Jim1Big Jim1 Posts: 182
    Day 9. Thought we were off to Intensive Care this morning. Had a low Blood Pressure and groggy. They gave him some fluid bonus's into blood and that seems to have helped. Having regular fevers still, but still in the Royal Marsden which is good. Hopefully his white cells will start to rise soon - or before he ends up getting worse.
  • Big Jim1Big Jim1 Posts: 182
    Day 10 today, and though he has Fevers, he's still in the Royal Marsden (and not in intensive care) which is good.

    From now onwards it's possible for his blood counts to begin to rise. We just have to hope it happens (and happens soon).
  • engyengy Posts: 131
    fingers crossed Jim...
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    fingers crossed Jim...
    Thanks Engy, and I think it seems to have worked.

    Today, we have some new white blood cells and it looks like he's also been producing platelets and Hb.
    At6C3YfCAAEgvqF.jpg
    Unfortunately, there's still a long way to go. But obviously the first sign of new blood cells is an important milepost.
    He's still having fevers, but they aren't as regular as yesterday and he seems that bit better and less groggy. Here's a smile from earlier. At6DGTYCIAEq5ds.jpg
    Though he was also very groggy shortly before that picture At5oDsJCIAAvpAf.jpg


    So, it's all ok really. looked bad yesterday, but vastly improved today.
  • Big Jim1Big Jim1 Posts: 182
    I'm not sure if this picture will help matters, but it's the machine they use here at the Marsden to collect Stem Cells. Basically you are connected via a line (like giving blood) to this machine for a number of hours. Then that's it.

    At07-3DCEAEzljV.jpg

    If you're well enough to do it (and below 50) you can sign up when you give blood. http://www.blood.co.uk/

    if you're under 40, then you can do it by contacting the anthony nolan trust. I think they send you a salvia swab. You do the swab and return it, that's it.
    http://www.anthonynolan.org/
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