Intro

BryanK519
BryanK519 Member Posts: 20
in Caregivers #1
I posted this, originally, in the lymphona discussion board - I guess I should have posted it here:

Hello all. I'm new here. Just wanted to give you a brief introduction and am hoping to receive some support and information from those of you (patients and caregivers) who have also been battling with lymphoma.

My b13 year old son, Kiefer, was diagnosed with Burkitts NHL about a month ago. What we thought was tonsilitis or strep throat, turned out to be cancer, to everybody's shock. When the word cancer left the physician's mouth, it was like I just left my body. I couldn't breathe, I couldn't think, I couldn't speak... we thought we were going to have to have Kiefer go through a tonselectomy, but nobody in their wildest dreams thought that the doctor would be telling us our 13 year old son had cancer! For the first week I don't think I've ever felt fear like that - I've never cried so hard in my life. All I could think about is the worst case scenario - I could lose my boy!

Since then everything has moved pretty fast. He has had his PET scan, which turned out to be negative (Thank God!) his blood work came back negative. He goes into surgery tomorrow to have his portacath implanted and while he is asleep, they will conduct a bone marrow aspiration and a lumbar puncture. He begins chemo on Tuesday. I have been so busy taking him to appointments, picking up prescriptions, calling doctors, etc. I no longer have time to sit and dwell on all of the worst-case scenarios, but I really don't know what to expect. Oh - I know what the pamphletts, websites, and brochures tell me to expect - but have not been through this personally, and certainly my son has not been through this, so I'm just kind of holding my nose and hoping that I do the best I can for my son.

I will read through some of these posts, but I would certainly appreciate any feedback or suggestions you have to assist me in being as supportive and effective caregiver I can be for my son.

Thanks,
Bryan

Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    #2
    I am so sorry that your son
    I am so sorry that your son has cancer, but you have come to the right place for support. You are not alone. I would recommend that you get in touch with someone from the American Cancer Society at the hospital where he is receiving treatment. They should have a repersentative at the hospital who can tell you what services are available to you in your area. For example did you know that there are services that can help cleAn cancer patient's homes for free or call and check on them thru a buddy system or give rides to treatment? Check with your local representative. Feel free to come in and "vent" cry get angry at your family for not doing crap and get information based on other's experiences.

    May you be blessed!
  • BryanK519
    BryanK519 Member Posts: 20
    #3
    ketziah35 said:

    I am so sorry that your son
    I am so sorry that your son has cancer, but you have come to the right place for support. You are not alone. I would recommend that you get in touch with someone from the American Cancer Society at the hospital where he is receiving treatment. They should have a repersentative at the hospital who can tell you what services are available to you in your area. For example did you know that there are services that can help cleAn cancer patient's homes for free or call and check on them thru a buddy system or give rides to treatment? Check with your local representative. Feel free to come in and "vent" cry get angry at your family for not doing crap and get information based on other's experiences.

    May you be blessed!

    Thanks
    Thanks Ket. No - I didn't know about some of those services, thanks for the information. I will check that out.
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #4
    BryanK519 said:

    Thanks
    Thanks Ket. No - I didn't know about some of those services, thanks for the information. I will check that out.

    Bryan
    1st let me say how sorry I am to hear about your 13 yo. son.

    You have everything it will take to get thru this. You will be the best of the best of all caregivers. You have LOVE, and lots of it.
    Love will cause you to endure, persevere, and fight like never before. This will be a hard road you, and your family will travel, but KNOW this. YOU WILL WIN. Claim VICTORY, there can be NO other option.

    I wish you all the best. Keep us informed about Kiefer.
    Jennifer
  • Lelia
    Lelia Member Posts: 98
    #5
    Hi BryanK
    It's true what they say, you complain of having no shoes until you walk by the man with no feet. I am so sorry to hear about Kiefer and am glad you reached out here.

    On the caregiver board we come from everywhere, all kinds of cancers, my husband has head and neck cancer for which treatment has its own special challenges--lost salivary glands/tastebuds/ability to swallow--and the CSN H&N board has been a powerful tool for information and support.

    After I read your post I explored a little and it seems that in addition to the caregiver board, you might find helpful info on both the childhood cancer and the lymphoma boards. At first I was reluctant to post on the head and neck board because I'm the caregiver not the one who has cancer. But I found the boards very accepting & shared by all, and there's no need to limit myself to the CG board when I have specific comments/questions on H&N issues. These folks have helped me through some very rough spots, before I found CSN I was very lonely indeed.

    I know the feeling well, the one you described, of being so busy with tests, medical appointments and related caregiver chores and errands that I didn't have time to think about cancer and worst case scenarios. But try as we might there are those moments late at night when sleep won't come, and I hope you get through those with prayer and help from here and wherever you can find it.

    During treatment I sat with my husband a lot, before cancer we were very independent and have actually become closer in interesting ways. I got a book to read during those hours, The Emperor of All Maladies: A Biography of Cancer, highly recommend it especially in your case.

    You and your family will be in my prayers, please be in touch here and keep us posted.
  • BryanK519
    BryanK519 Member Posts: 20
    #6
    Lelia said:

    Hi BryanK
    It's true what they say, you complain of having no shoes until you walk by the man with no feet. I am so sorry to hear about Kiefer and am glad you reached out here.

    On the caregiver board we come from everywhere, all kinds of cancers, my husband has head and neck cancer for which treatment has its own special challenges--lost salivary glands/tastebuds/ability to swallow--and the CSN H&N board has been a powerful tool for information and support.

    After I read your post I explored a little and it seems that in addition to the caregiver board, you might find helpful info on both the childhood cancer and the lymphoma boards. At first I was reluctant to post on the head and neck board because I'm the caregiver not the one who has cancer. But I found the boards very accepting & shared by all, and there's no need to limit myself to the CG board when I have specific comments/questions on H&N issues. These folks have helped me through some very rough spots, before I found CSN I was very lonely indeed.

    I know the feeling well, the one you described, of being so busy with tests, medical appointments and related caregiver chores and errands that I didn't have time to think about cancer and worst case scenarios. But try as we might there are those moments late at night when sleep won't come, and I hope you get through those with prayer and help from here and wherever you can find it.

    During treatment I sat with my husband a lot, before cancer we were very independent and have actually become closer in interesting ways. I got a book to read during those hours, The Emperor of All Maladies: A Biography of Cancer, highly recommend it especially in your case.

    You and your family will be in my prayers, please be in touch here and keep us posted.

    Thanks
    Thanks all for the words of encouragement. I'm in the hospital with Kiefer now. He has been going through his first round of chemo. He's handling it well, though he's complained about a little nasusea. The worst part, according to him, are the spinal taps. He will be getting his third one in two weeks on Tuesday.

    Thanks again for the support.
  • BLSJEFF
    BLSJEFF Member Posts: 3
    #7
    Burkitts support group.
    Hi all Burkitts patients and care givers. We are a group of over 200 Burkitts patients, survivors and caregivers. Come find us on Facebook. We call ourselves "Burkitts Lymphoma Society private group" But just find the "Burkitts Lymphoma Society" on facebook and I will send you to the group...

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