Another person diagnosed with NLPHL

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    Wonderful

    Delighted to hear it Skater....

  • Angie77
    Angie77 Member Posts: 1
    Explaining cancer to kids.

    My 8 year old (now 9) was diagnosed with stage 2 NLPHL in January and is now in remission after 4 total rounds of chemo - 2 of OEPA- 2 of COPDAC (plan changed mid-treatment despite clean PET due to unpublished research coming out of Germany which is finding 2 rounds not enough to effectively prevent relapse). He was a serious champ through treatment. Still not 100%. His immune system seems to have recovered but he still struggles with fatigue and some emotional stuff. 

    I have 3 other children so we have had to have many hard conversations about cancer, which sucks really and makes me sad. my four year old doesn’t quite understand that even though she had to take medicine for an ear infection, she didn’t have cancer. We have had to talk about curing cancer and living with cancer and that sometimes people die from cancer.  One thing we focused on throughout treatment was that we had to work together as a family. Of course it was hard for our patient, but it was hard for the other kids too.  we told them they were brave and strong for understanding that their brother needed us. our other kids spent a lot of time with our friends so we could care for their brother  and we made sure to talk about this with them. They certainly take in more than we know.  our four year old recently shared with her preschool class that her brother had cancer and that we all worked together so he would get better.  

    my point in sharing this is that you should talk with your daughter about how this is effecting her and especially use it as an opportunity to remind her how strong she is - for giving up time she would usually spend with you so you can rest - And how brave she is.  This is challenging stuff to deal with. The fatigue, the hair loss, the general ickyness and wait until the prednisone really kicks in. She will need that strength and bravery now and likely at some point in the future. 

    Stay positive. Show cancer who’s boss!

    Angie

  • illead
    illead Member Posts: 879 Member
    edited December 2017 #44
    Such good news

    That is wonderful news and know you are so happy, now you can get on with your life.  Hoping this will be long lasting if not permanent.  So get on wirth life and put the past behind.

    Many good wishes,

    Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    illead said:

    Such good news

    That is wonderful news and know you are so happy, now you can get on with your life.  Hoping this will be long lasting if not permanent.  So get on wirth life and put the past behind.

    Many good wishes,

    Becky

    Kids

    Angie,

    Luckily, kids are resiliant.  Stuff bounces off of them that would not bounce off of an adult.  I asked my pediatrician once why kids are less likely than adults to break bones in a fall or auto accident, and he said "They are still green wood."

    In a year, your kids will probably remember nothing of this; they will be engrossed in the latest kid thing.   But they sense what is going on with their parents. As Becky noted, move past it yourself and they will as well.

    max

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    skaterdad said:

    Complete Metabolic Response

    Just to update everyone I got some good news from my mid-chemo PET scan. All of the previously active lymph nodes are now *significantly* smaller and do not have any uptake on the PET scan. Also, my mild splenomegaly has significinatly reduced. According to my onc. this is considered a complete metabolic response to the chemo. Yay!

    It's nice to have some good news after almost a year of what seemed like a neverending sequence of bad.

    Awesome

    Sorry have been a little distracted lately and not kept up like I wanted on this site. 

    Congrats on the good news!