My daughter is in remission after Burkitts L. Have some questions

Hello everyone, i am kinda new to this forum stuff. My daughter was diagnosed with Burkitts lymphoma in September 2017 and after 3 long intense months of chemo we got the great news that the cancer cells and tumor she had were dead/dying. She is now 6 and 2 years into remission. We go in for a routine checkup in 3 weeks but here for about the last couple weeks she has been complaining of her stomach hurting. It almost seems constant, like everyday or every other day she says it hurts. And im just worried about it possibly coming back and her relapsing. I am an extreme worrier, sometimes i over worry or unneccasarily worry especially when it comes to my children. So what im asking for is any advice or experiances that others have had. Doctors said that her chances are good and after the one year mark chance of relapse decreases but also say that every child/person and situation is different, understandably of course. 

 

Thanks to anyone and everyone who can respond and maybe, hopefully put this mommas heart and head at ease of all this worry and anxiety that this diagnosis brings even years after its delivered. God Bless!!

Comments

  • Piyush0702
    Piyush0702 Member Posts: 6
    edited January 2020 #2
    A couple of questions

    Where was the cancer located when your kid was diagnosed? Is her stomach is hurting regularly, MRI scans should help to know the situation better. What are the oncologists saying about the stomachache? 

  • simplegirl_89
    simplegirl_89 Member Posts: 2
    edited January 2020 #3

    A couple of questions

    Where was the cancer located when your kid was diagnosed? Is her stomach is hurting regularly, MRI scans should help to know the situation better. What are the oncologists saying about the stomachache? 

    Her abdomen, large part of my concern

    The tumor was across her abdomen, stretched over alot of vessels so surgery wasnt an optoin. Also had some cancer cells in her leg and upper abdomen. She just has ultrasounds and xrays now. Yes tit seems like her stomache is aching/hurting regularly. But since she is only 6 its hard to tell if it trully does and how bad it actually hurts. Ive told the doc but there has been alot of stomache bugs/flu and sickness that causes the normal tummy aches and they are booked for the next 2 weeks. So apart from calling again in the morning and explaining whats been goin on with her again maybe hoping they can possibly see her sooner. or give me something to look out for, idk what to do. Thats why i came here to maybe get some insight from others experiences.

  • yesyes2
    yesyes2 Member Posts: 591
    I'd push for appointment.

    If you are this concerned take her in to see her pediatric hemotologist.  If it were my child I would not wait until my regular appointment.  Doctors always hold open spaces for emergency appointments.  Burketts is so very aggressive it is unlikely that if she has been in remission 2 years it's a recurrance.  I would follow the better safe than sorry agenda.  How ofter are tests and ultra sounds done?  Protocols for little ones are different than for adults and this forum gets very few questions on childrens cancer so I don't think we can be all that helpful.  I hope all is well and you get the answers you are looking for.

     

  • Piyush0702
    Piyush0702 Member Posts: 6

    Her abdomen, large part of my concern

    The tumor was across her abdomen, stretched over alot of vessels so surgery wasnt an optoin. Also had some cancer cells in her leg and upper abdomen. She just has ultrasounds and xrays now. Yes tit seems like her stomache is aching/hurting regularly. But since she is only 6 its hard to tell if it trully does and how bad it actually hurts. Ive told the doc but there has been alot of stomache bugs/flu and sickness that causes the normal tummy aches and they are booked for the next 2 weeks. So apart from calling again in the morning and explaining whats been goin on with her again maybe hoping they can possibly see her sooner. or give me something to look out for, idk what to do. Thats why i came here to maybe get some insight from others experiences.

    You should go to the

    You should go to the oncologist/to a new one if the former is not available asap and tell them about the stomach pains. Burkitt's is very aggressive and can spread to other areas in a matter of days. Scans are necessary to grasp the severity of any kind of development in the abdominal area, if its just some microbe then well and good, antibiotics will do the work, but god forbid if its relapse then it should be treated at the earliest.