Anyone had experience with childhood cancer?

DisenchanterDisenchanter Magnolia, DERegistered User regular
Not exactly the best topic, but my 8 year old daughter was just diagnosed with Stage 4 bone cancer, and will be starting treatments this week. I am just curious if anyone has had any experience with children battling cancer, and any ideas or suggestions on what I can do as far as comfort and ease for her?

I know it is going to be rough, especially since they have stated several times that once her treatment begins, it will be very aggressive, I just know I am in no way prepared for just how bad it is going to be, and as her primary care giver in top of my normal duties as dad, I would like to be as prepared as I can be.

I mean, it is my job as dad to keep it together and be strong for her..

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  • CelestialBadgerCelestialBadger Registered User regular
    What a nightmare. I am so sorry :(

    Perhaps the hospital can put you in touch with parents who have been through this, or a support group. If you happen to belong to a church, people there can really be there for you when it gets difficult. Social ties will help support you.

  • IrukaIruka Registered User, Moderator mod
    A general country/area may help people suggest more specific resources. You already sound like the best dad your daughter could ask for, I'm so sorry you have to go through this.

    Hopefully some forum folks will have some helpful suggestions.

    Elvenshaedispatch.o
  • dispatch.odispatch.o Registered User regular
    Not exactly the best topic, but my 8 year old daughter was just diagnosed with Stage 4 bone cancer, and will be starting treatments this week. I am just curious if anyone has had any experience with children battling cancer, and any ideas or suggestions on what I can do as far as comfort and ease for her?

    I know it is going to be rough, especially since they have stated several times that once her treatment begins, it will be very aggressive, I just know I am in no way prepared for just how bad it is going to be, and as her primary care giver in top of my normal duties as dad, I would like to be as prepared as I can be.

    I mean, it is my job as dad to keep it together and be strong for her..

    I'm not a dad. I can't realistically say I know what it will be like. In my experience in hospital work, kids are tough as shit. There will be dozens of people whos entire career involves caring for ill children when you have hospital stays, let them. You will need rest and help, lots of both to stay functional and helpful as a dad.

    Depending on where in the country you are state FMLA paperwork can be a lovely migraine. Start it now. Depending on your employer there may be things you can do to help you with your schedule and duties to make you more flexible.

    Talk to HR. Talk to the desk staff at the oncologist office. People who have been at this stuff for a while often know exactly who you should be talking to.

  • Sir LandsharkSir Landshark resting shark face Registered User regular
    I thought I would do some Googling for you because I'm sure you don't want to be reading some of this stuff, but I couldn't get through it all without crying at work. This website appears to have a lot of good info.

    http://www.ped-onc.org/cfissues/cfissues.html

    I'm so sorry for you and your daughter. I will talk to my wife tonight and see if she has any more specific advice for you that she's willing to come and talk about (her parents had two children born with terminal illness).

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  • tinwhiskerstinwhiskers Registered User regular
    dispatch.o wrote: »
    Not exactly the best topic, but my 8 year old daughter was just diagnosed with Stage 4 bone cancer, and will be starting treatments this week. I am just curious if anyone has had any experience with children battling cancer, and any ideas or suggestions on what I can do as far as comfort and ease for her?

    I know it is going to be rough, especially since they have stated several times that once her treatment begins, it will be very aggressive, I just know I am in no way prepared for just how bad it is going to be, and as her primary care giver in top of my normal duties as dad, I would like to be as prepared as I can be.

    I mean, it is my job as dad to keep it together and be strong for her..

    I'm not a dad. I can't realistically say I know what it will be like. In my experience in hospital work, kids are tough as shit. There will be dozens of people whos entire career involves caring for ill children when you have hospital stays, let them. You will need rest and help, lots of both to stay functional and helpful as a dad.

    Depending on where in the country you are state FMLA paperwork can be a lovely migraine. Start it now. Depending on your employer there may be things you can do to help you with your schedule and duties to make you more flexible.

    Talk to HR. Talk to the desk staff at the oncologist office. People who have been at this stuff for a while often know exactly who you should be talking to.

    DO NOT TALK TO HR or your bosses or anyone at work. At least not until all the FMLA stuff is filed.

    HR works for the company for the benefit of the company. Yeah, maybe he works somewhere decent, but maybe he works somewhere where "Employee who is going to miss work for large chunks of the next year and can't be fired" or "Employee who will rack up 100s of thousands in health insurance claims right as open enrollment is starting" is going to be "fired for tardiness, was at desk at 8:32 not 8:30 as required of all employees".

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  • EclecticGrooveEclecticGroove Registered User regular
    DO NOT TALK TO HR or your bosses or anyone at work. At least not until all the FMLA stuff is filed.

    HR works for the company for the benefit of the company. Yeah, maybe he works somewhere decent, but maybe he works somewhere where "Employee who is going to miss work for large chunks of the next year and can't be fired" or "Employee who will rack up 100s of thousands in health insurance claims right as open enrollment is starting" is going to be "fired for tardiness, was at desk at 8:32 not 8:30 as required of all employees".

    I find it incredibly depressing that this is good advice in a situation like this, but it is.

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  • dispatch.odispatch.o Registered User regular
    dispatch.o wrote: »
    Not exactly the best topic, but my 8 year old daughter was just diagnosed with Stage 4 bone cancer, and will be starting treatments this week. I am just curious if anyone has had any experience with children battling cancer, and any ideas or suggestions on what I can do as far as comfort and ease for her?

    I know it is going to be rough, especially since they have stated several times that once her treatment begins, it will be very aggressive, I just know I am in no way prepared for just how bad it is going to be, and as her primary care giver in top of my normal duties as dad, I would like to be as prepared as I can be.

    I mean, it is my job as dad to keep it together and be strong for her..

    I'm not a dad. I can't realistically say I know what it will be like. In my experience in hospital work, kids are tough as shit. There will be dozens of people whos entire career involves caring for ill children when you have hospital stays, let them. You will need rest and help, lots of both to stay functional and helpful as a dad.

    Depending on where in the country you are state FMLA paperwork can be a lovely migraine. Start it now. Depending on your employer there may be things you can do to help you with your schedule and duties to make you more flexible.

    Talk to HR. Talk to the desk staff at the oncologist office. People who have been at this stuff for a while often know exactly who you should be talking to.

    DO NOT TALK TO HR or your bosses or anyone at work. At least not until all the FMLA stuff is filed.

    HR works for the company for the benefit of the company. Yeah, maybe he works somewhere decent, but maybe he works somewhere where "Employee who is going to miss work for large chunks of the next year and can't be fired" or "Employee who will rack up 100s of thousands in health insurance claims right as open enrollment is starting" is going to be "fired for tardiness, was at desk at 8:32 not 8:30 as required of all employees".

    This is an important correction to my post. Talk to HR is post FMLA paperwork. Unfortunately they are involved in the filing and absence management in some capacity so you can't actually sneak it by them, but don't notify them until you are at the proper step in the process.

  • DisenchanterDisenchanter Magnolia, DERegistered User regular
    My bosses have already been involved and so has senior management. They are currently helping me with my paperwork, and my boss is lobbying to have me gifted with vacation days to help soften the blow, as FMLA does not mean getting paid, just not getting canned.

    I live in Delaware, my daughter is being seen and treated at AI DuPont Children's Hospital, which is where both of my kids see all of their specialists.

    My daughter has bad anxiety and Mild Cerebral Palsy
    My son has ASD, ADHD, and Mild Tourettes

    So I am very familiar with the hospital, and the resources that they have for patients and parents.

    I have been trying to setup little things, like asking friends and family to randomly send a letter during her treatment, as just little bits to brighten her day, which will be basically wallpapering her room as they come in. She asked for a party to see all of the family before she started treatment, which we did... I think 130 people turning out on a weeks notice is decent.

    I have looked up her prior diagnosis of a Stage M Neuroblastoma (which used to be called Stage 4), which after a Biopsy has been shown to be Ewing Sarcoma. I have looked at Wikipedia for both, as I know better than to look at sites for charities, as they tend to list the horror stories to make it more polarizing. Both my kids are premies, my son 9 weeks premature, March of Dimes was the absolute worst place we looked for information.

    I am not sure I am even looking for information as much as I guess it was helpful to just talk about it and get it out... but, I would take any small suggestions, if people know of them that just help with the stuff you don't think about.

  • bowenbowen How you doin'? Registered User regular
    Good luck Disenchanter, I hope this all works out. You're good people.

    Keep us updated.

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  • FiendishrabbitFiendishrabbit Registered User regular
    Has it metastasized or is the stage 4 limited to nearby tissue?

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  • Shark_MegaByteShark_MegaByte Registered User regular
    edited September 2016
    "Very aggressive" is polite code for saying they're going to pummel her body until they have to stop because any more would kill her. And then she gets a tiny break before they do it again.

    The doctors are working for you. They're experts, but you're the client (on your daughter's behalf). Ask questions. You need to be informed and updated. They make recommendations but you make the decisions. This is not revolutionary; this is the way it's supposed to be. Most people just are not proactive enough to speak up if they feel they aren't getting the info they need, or that the docs might be wrong about something. They are highly trained but they are human, and the gap in training creates big communication challenges. Don't just step aside and shut up - ever.

    (- stage 3 rhabdomyosarcoma at 3 years old)

    Shark_MegaByte on
    ElvenshaeFiendishrabbit
  • DisenchanterDisenchanter Magnolia, DERegistered User regular
    We got all of the pathology back last Thursday, they have no indication that is has metastasized, so it is stage 4 limited to the large mass behind left lung, the lymph nodes in close proximity to said mass, and the ribs and vertebrate within close proximity.

    During our visit Thursday, hey walked my ex-wife and I through the list of medications that she will be given during each stage of her treatment, and the larger bullet pointed side effects for each, as well as sending us home with the full list of side effects for each. Doctor gave his personal cell in the event that we have any questions regarding anything.

    They also gave us the "road map", detailing her inpatient stays, outpatient visits, and labs, for her treatment and made sure to tell us that this is written in pencil, not stone. Due to how this all works, her number of inpatient days are most likely going to increase, since any slight sign of her getting sick will result in being admitted for observation.

    She was supposed to start her treatments Friday, but due to her inability to have a specific kidney function test done, postponed it until Tuesday when the test can be performed, and afterward she will get her first treatment.

    Her doctor assured us that the treatment for what is now being called Ewings Sarcoma, is going to be fairly routine for now, nothing experimental, just what has worked historically. Which is a bit of good news compared to when it was being called a Neuroblastoma, which there is no routine treatment for at "Stage M" otherwise known at "Stage 4".


    I appreciate all the suggestions and support.

    Thank you very much

  • CelestialBadgerCelestialBadger Registered User regular
    I'll be thinking of you. I hope she will be OK.

  • mtsmts Dr. Robot King Registered User regular
    if you have any question on terminology/bio related questions feel free to shoot me an email. Ph.D. in molecular physiology here

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  • ShellbackShellback Registered User regular
    I've had experience with it. Be strong when she's looking, make everything fun, break down when she isn't looking. Do not hold it in. It will eat you alive. Lean on your friends, ignore the nay-sayers. Be realistic but never give up hope. Enjoy every single moment.

  • SLyMSLyM Registered User regular
    My sister had leukemia when I was around 4 (she was 6) and I can't give you any advice about treatment, but I can say that one thing that really helped was to give trips to the hospital a silver lining. Even staying somewhere with sugary cereals we didn't get at home and a Playstation helped make them trips to look forward to instead of trips to dread. Also don't forget your son is probably gonna feel a little abandoned when you're spending a lot of time with your daughter, so make sure you talk to him about the situation and take some time for him too.

    Siska
  • DisenchanterDisenchanter Magnolia, DERegistered User regular
    So, her first round of chemo went great until about 24 hours after her first does started (Tuesday afternoon), right around the time her second day of chemo was going to start. Her doctors were commenting how you would never know she was even getting chemo, she was so happy, lively, and chatty. Her only downside as that her appetite was not great. Then around 1pm (Weds afternoon), it hit her like a truck, chills/nausea/fever/heart rate spikes/crazy blood pressures) these all continued until Friday morning to some extent.

  • CelestialBadgerCelestialBadger Registered User regular
    Poor thing :(

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  • Shark_MegaByteShark_MegaByte Registered User regular
    There's something else I have to be reminded of myself.

    Don't let your focus, or hers, linger on the disease or her pain or her losses (hair/physical abilities/free time/etc). Your focus slants your reality. When you fixate on negative stuff, everything looks and feels worse. This isn't about just blowing sunshine. Driving courses teach you to look well ahead, not just at what's right in front of you. Fighter pilots are cautioned to avoid 'target fixation.' This is the same kind of thing.

    Focus on what you, and she, still have. Use that to help her have fun.

  • MichaelLCMichaelLC In what furnace was thy brain? ChicagoRegistered User regular
    I spent a lot of time in hospitals as I needed heart surgery as a newborn/infant and again when I was in kindergarten, so younger than your daughter which probably helped with not remembering a lot of it.
    But I mostly only remember the good stuff, like wanting the Mac n cheese at the hospital, playing with the other kids, and my mother being there a lot. I know she stayed at a Ronald McD
    House a few times and it was nice; for relative values of nice. A lot of it was just the small things like getting to pick my meals that made it less scary.
    So I guess just try to make the treatments and hospitals as 'fun' as they can be, and be strong but don't hide stuff from her. Hopefully the docs can explain what's going on without going into too much detail.

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  • DisenchanterDisenchanter Magnolia, DERegistered User regular
    There's something else I have to be reminded of myself.

    Don't let your focus, or hers, linger on the disease or her pain or her losses (hair/physical abilities/free time/etc). Your focus slants your reality. When you fixate on negative stuff, everything looks and feels worse. This isn't about just blowing sunshine. Driving courses teach you to look well ahead, not just at what's right in front of you. Fighter pilots are cautioned to avoid 'target fixation.' This is the same kind of thing.

    Focus on what you, and she, still have. Use that to help her have fun.

    Yeah we are trying to focus on the good things, talking more about what she can still do, as opposed to the stuff she can't do now. She flat out told me while she was in the hospital while feeling absolutely horrible that this sucks, but it is worth it, pretty adult words for an 8 year old.

    I have tried to make her Neupogen shots, which apparently burn pretty bad, and flushing her central line more of a fun thing instead of a chore, so she is not upset being reminded of why she is getting the shot and why she has the central line.

    We just had her first labs since she left the hospital last week, and her ANC is 500, so now time to decorate some masks, because she is going to be wearing one whenever we go out.

  • The Crowing OneThe Crowing One Registered User regular
    Move to Boston and find a specialist at MGH.

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