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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 !!! We are all rooting for you mate.
  • DF33DF33 Posts: 732
    Excellent he's starting to produce cells. Hope your managing to see a bit of the sunshine. Cheers Peter
    Peter
  • Big Jim1Big Jim1 Posts: 182
    DF33 wrote:
    Excellent he's starting to produce cells. Hope your managing to see a bit of the sunshine. Cheers Peter
    :)

    Hopefully they'll be even more today.
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    great news !!! We are all rooting for you mate.

    thanks :)
  • engyengy Posts: 131
    hoping for more good news today !!!!
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    hoping for more good news today !!!!
    Thanks Engy :)

    He's improved slightly from yesterday. His WBC is now up to 0.2, but I think normal range for his age is about 8, 9 or 10. So that sort of puts a perspective on things. Certainly he has no Neutrophils at the moment, and anything under 1 is classed as being Neutrophenic and at risk of infection. So I think the point is, though his body is showing signs of recovery, he isn't out of immediate danger of infection yet. His Fevers have started to get further apart in time. So, a few days ago he was spiking before his next paracetomal was due, where as now he's spiking every 7 or 8 hours. I think the longer he goes between spikes proves that he's improving. i.e. sooner or later he won't spike at all.

    He had a CT and ultrasound scan today to check for a fungal infection, but that all came up ok.

    So really it's just a case of waiting and hoping still. Though even once his counts are recovered, he still has many months of being super careful and avoiding virus's. Then the 30% possibility that the Cancer returns.

    So really it's just a case of waiting and hoping still. Though even once his counts are recovered, he still has many months of being super careful and avoiding virus's. Then the 30% possibility that the Cancer returns.

    A truely horrible disease. I was looking at jobs at the institute of Cancer Research earlier as this whole situation just drives you mad and makes you want to physically help find a cure. oh well.

    Thanks for the best wishes and also thanks again for the donations. Currently over £5K.
  • Big Jim1Big Jim1 Posts: 182
    Day 12 and he's doing slightly better today. Fevers are now 16 hours apart, though he has some odd spots popping up every now and then. A little boy who's a week ahead of William is being allowed to go home for a few days, then hopefully when he returns he'll only be in for a few days. So fingers crossed within a week and a bit, they may get home if his counts recover. fingers still crossed.
  • Big Jim1Big Jim1 Posts: 182
    Day 13, and all still ok. Fevers are getting less frequent. Still a waiting game for counts to fully rise.

    Here's a picture from yesterday:

    AuE2hlkCEAAm7WF.jpg

    He's lost a lot of strength, but as can be seen in the photo, he's not as bad as he could be (or we expected).

    touch wood....
  • Nick CodNick Cod Posts: 321
    Jim

    Glad your little lad is looking like he's on the mend. On the back or reading this I've applied to Anthony Nolan to be a potential donor.

    I'll be more than happy to sponsor you for your ride, just waiting for pay day to arrive.

    All the best to your son and family

    James (Nick Cod)
    2016 Cube Agree C:62 SLT DISC
    2013 Cayo Evo 3
    2013 Zesty 414
    2002 Avalanche 0.0
    2018 Vitus Substance v2 105 Gravel
  • Big Jim1Big Jim1 Posts: 182
    Nick Cod wrote:
    Jim

    Glad your little lad is looking like he's on the mend. On the back or reading this I've applied to Anthony Nolan to be a potential donor.

    I'll be more than happy to sponsor you for your ride, just waiting for pay day to arrive.

    All the best to your son and family

    James (Nick Cod)
    That's brilliant news.

    I think the point is, we may never be asked to donate, but the more of us on the register, the better the chance of a donor match. I mean, my wife and I weren't matches for William - but 2 people out of thousands on the register were matches. It's because there are so many people on the register, that the chances of a match are greater.

    Also, for new born children, you can donate the cord/ afterbirth to the cord bank. The stem cells in the cord are less likely to be rejected by the patient, so are very useful. To be honest, the leftovers usually go into clincal waste anyway, so might as well save a life with it maybe? So worth passing this on if anyone knows a couple expecting a child.
  • Big Jim1Big Jim1 Posts: 182
    White counts continue to rise. But lots of little red spots appearing on his body which is worrying. :S
    AuOhWbYCQAAGmOR.jpg

    No fevers for 50 something hours, but did get close this morning for an unknown reason.
  • Big Jim1Big Jim1 Posts: 182
    Bit better counts today :)

    At least the ward is Britishy
    AuOgSUECIAABlxX.jpg

    But lots more red spots which is worrying. No fevers though!!
  • merkinmerkin Posts: 452
    Fingers and toes crossed here. Thanks for the updates, I've never been so humbled. Makes me feel ashamed for whining about the sniffles.
  • DF33DF33 Posts: 732
    I think we're all not posting up because there's little to say, we're all waiting with baited breath for the upwards progress to be announced.
    Peter
  • RiggedRigged Posts: 214
    I keep checking back on this to see how the little man is doing. It seems good news so far :) I hope the progress continues for him. Your strength through this is incredibly inspiring, thanks for bringing a little perspective into my life.
  • engyengy Posts: 131
    Jim seems like some progress.... hope those bloody red spots buggar off.

    :D
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    Jim seems like some progress.... hope those bloody red spots buggar off.

    :D
    yeah his counts are coming up, but full of red spots now. Think it's chicken pox reactivated. This'll be the third time in his life + he's had shingles earlier this year. He's covered in them and itching. Just as well he;s in isolation really.

    But he's otherwise ok at the moment. Just have to see it through.

    We had an amaing experience earlier, I've been asking to see the original bone marrow slides of when he was diagnosed. Today, we went to see one of the consultant haemotologists and he went through it all under a microscope. An amazing experience. The problem with blood cancer, is that you can see the result but not the cause.
  • Big Jim1Big Jim1 Posts: 182
    Thanks for the other messages everyone. It certainly does put life into perspective. I don't think we should spend our lives worrying about ill health, but should always make the most of when we have full health. i.e. do those things you always wanted to do... There isn't always a do it tomorrow.
  • Peddle Up!Peddle Up! Posts: 2,040
    Big Jim1 wrote:
    Thanks for the other messages everyone. It certainly does put life into perspective. I don't think we should spend our lives worrying about ill health, but should always make the most of when we have full health. i.e. do those things you always wanted to do... There isn't always a do it tomorrow.

    Wise words. Keep up the fight.
    Purveyor of "up" :)
  • Big Jim1Big Jim1 Posts: 182
    Thought I should post this video. It was tweeted by the Anthony Nolan Trust and I feel it's a very powerful message in its own right.
    please watch it if you have a moment. I really hope in years to come that we (including WIlliam) can meet the donor also
    http://www.youtube.com/watch?v=g0dgaCQ1PFY
  • engyengy Posts: 131
    thanks for the update Jim and taking the time out, im sure you have a million other things to do. Wise words indeed !
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    thanks for the update Jim and taking the time out, im sure you have a million other things to do. Wise words indeed !
    No probs at all. I think the support on the forums has certainly helped us through-lots of positive vibes and thoughts, and feel also the donations to the page certainly deserve an update. in the hospital you're pretty much stuck in the room, so it's no problem giving updates when things are quiet.

    He's not so good today. Nasty rash, chicken pox and fevers. Just hoping he doesn;t go down hill from here (and hope the new cells kill off the nasty virus's).
  • Big Jim1Big Jim1 Posts: 182
    Just a quick thank you for the last donation. It makes me very happy when I see that someone has made the effort to go through and do the donation and support the cause. The amount is less important than the act. So I really appreciate you doing this and every amount helps for sure :)

    William's counts have flown up today, but he's really not very well. It looks like Graft Verses Host Disease, which is the new cells attacking his body. They have to manage this such that the affects of this aren't too bad on the body, but you don't want to iradicate it as it will reduce the graft verses leukaemia affect which is the thing that we hope will cure William. i.e. you want the new cells to attack his cells such that they also attack the Cancer. A very clever thing using white cells as a cure. This is obviously a bit worrying, but they know what they're doing at the Marsden, so it's keep fingers crossed time even more.
  • engyengy Posts: 131
    Jim, sounds sort of good and bad all in one. good news on the counts progress is progress....more of the progress :wink:
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    Jim, sounds sort of good and bad all in one. good news on the counts progress is progress....more of the progress :wink:
    Thanks Engy.

    We had a really worrying night. His rash vastly worse, lips swollen, hi respiration rate (liteally panting), sats dropping, fevers, etc.
    Dr's were very worried at around 1.00 am and called on the "on call" consultant to come in, and the intensive care retrieval team were ready to come. They decided to try Steroids as it could be graft verses host, and that seemed to sort him out. His White blood count is now 4, with 3 neutrophils. So, they think that the rapid engraftment has caused this reaction and the steriods basically surpresses the immune response (and why he improved).

    Here's a picture:
    AudchWqCEAEHk_9.jpg
  • Sith lardSith lard Posts: 43
    You are a fighter William ,wishing you strength to overcome this terrible disease. Our thoughts and prayers are with young man.big hugs nick and ness
  • engyengy Posts: 131
    Stay strong William - hopefully this is part of the cause. choked just seeing the picture Jim. You and your family stay strong too !!
  • Big Jim1Big Jim1 Posts: 182
    thanks for the messages :)
    He's a bit better today. Though still having problems with his Oxygen Saturations.

    I think Bone Marrow Transplants are really rough on the little bodies and the kids can go through a lot of pain with Mucositus from the Chemo. I think this is what drives me to want to help find a non intrusive cure so that the poor little kids won't need to go through this horrible pain.
  • engyengy Posts: 131
    waitinf for some good news Jim. Hope things are ok ?
  • Big Jim1Big Jim1 Posts: 182
    engy wrote:
    waitinf for some good news Jim. Hope things are ok ?

    Thanks Engy :)
    Didn't manage to get on the laptop earlier as all was a bit manic.

    We had a very dodgy day today at the hospital. William was ok, though looked eye(y) when I arrived. But then suddenly became tied. Heart started racing to almost 180 bpm, respirations flying above 50, and he was puffing and panting and Oxygen saturations were low also and he needed an oxygen mask + a fever. In the past this sort of thing has been a step before intensive care admittance, but thankfully a dose of Paracetamol sorted things out. I think, as the Nurse mentioned, things are different now to in the past. Previously, this kind of illness was because of neutrophenic Febrile Sepsis, and treated with Anti-biotics, but he currently has Graft Verses Host Syndrome which is sort of an allergic reaction, so once you get it under control again he calms down.
    Certainly I feel like the past weeks have aged me a great deal!!!

    It sounds like they're going to start withdrawing the steroids tomorrow to try and ween him off them. So, I think apart from giving his parents a fright, everything is ok. :)
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