Any Parents whose kids or teens have cancer?

Hi I care for my 17 year old daughter who has optic pathway glioma which has now spread to the spine. Would be great to hear from other parents trying to cope with similar situation.
I check forum regularly and can often be found gassing in the online chat room!!
  • Hi classyrioja
    We are Craig & Alyson from Stoke-on-Trent. Our 19 year old son was diagnosed with a Brain Tumour in March last year - Pineal Germ Cell Teratoma. He had 4 cycles of chemo and Radio and responded well. In September a routine blood test revealed an elevated AFP tumour marker and some cell activity in his spine. We began chemo again and are still in treatment today. Recently been told that a full cure is now unlikely. Ring any bells? What is your position?

  • Hi Craig and Alyson, Sorry to hear about your son.
    Rachael's tumour was found during a routine eye exam. She had biopsy then radiotherapy 2004. There are now lesions in other parts of brain and several areas in spine.
    She's been on chemo since July 2007 and is due to finish March this year. They have already said this may not work or if it does it wil only keep it at bay for a while, how long??? but not a cure.
    No one has actually said the words "it can't be cured" just that she may need more radiotherapy/chemo if tumours start to grow again!
    How have you all been coping with this? As a family we have found it a challenge, to say the least, especially when everyone is coping and dealing with it in a different way.
    Feel free to contact me any time.
    Take care.

  • hi

    my daughter Amy has brain tumors. she is very unwell and age 19. she was diagnosed in oct 07.
  • Hi Anita, welcome to the site. Sorry to hear about you daughter, is she having any treatment at the moment?
    It's difficult when it's your child you just want to take it away from them.
    Feel free to contact me if you wish, or come on chat, everyone is very friendly and you'll get masses of support.

    Elaine xx
  • My daughter Jenna was first diagnosed in Mar 2006 when she was 15yrs old and has relapsed after going through 18 months of treatment.
    She has deteriorated so much in the last 3 weeks that the docs don't give her very long at all.
    We are trying to be positive but finding it so hard when all the medical professionals are so negative.
    It has been an awful 3 years, but she has been so brave and is a real fighter with lots of determination and strength, so we are desperately trying to get her through this latest battle.
    I would find it helpful to chat with other parents in a similar situation

  • Hi Lolly welcome to the site. Sorry to hear about Jenna, sounds as if you have all had a tough time.
    I'd be glad to chat if you want to get in touch. I have found this site invaluable since I joined in Oct, wish I'd found it much sooner. Everyone is so helpful and supportive and talking on chat at night when you are feeling low can give you a much needed boost.

    Take care.


  • Hi, my 5 year old son was diagnosed with an inoperable brain tumour in July 2008. He is too young for radiotherapy and he has just started chemotherapy as it has started to grow a little more rapidly. He has had one treatment so far and is already complaining of a sore mouth. We don't know what to expect and would like to know your experiences with chemo. Also would like to hear from other parents with a similar situation.
  • Hi talked to you on chat, my daughter having same chemo!
    Please feel free to get in touch any time, will help if I can!

    Elaine xx
  • Hi all, my daughter Mollie was diagnosed with wilms tumour on 4th March, she hadnt been ill, just lost a bit of weight and I noticed a lump to her right side. She is currently having chemo and has had some bad side effects, hopefully she will be having her surgery very soon and will begin to feel better, My heart goes out to all parents of children suffering from cancer, its so hard to watch your child suffer. Take care Mandi xxx
  • Hi Mandi, so sorry to hear about your daughter, welcome to the site I hope you find it helpful.
    It is difficult, you don't expect to have to watch your child go through this.

    Chat is great if you want to get things off your chest or have a bit of light heartedness if you need cheering up.
    There are many wonderful supportive people on this site and everyone does their best to give help if they can.

    Hope to chat with you sometime.

    Love to you, Mollie and the rest of your family.

    Classy x
  • Hi, Im not quite right for this forum, but fairly close... hope its ok!

    Im 23 and the big sister of 15 year old Sam who is just about to start her radiotherapy and Chemo for a grade 3 mixed glioma. She had surgery 1 month ago now - she dealt with that incredbly well. She's not quite so ok with the idea of hair loss as its her pride and joy - like most teenage girls I guess! She's not really talking about it yet, but slowly she is accepting the changes that are going to happen. She starts treatment next week. Her final radiotherapy mask fitting and simulation was done today, for the first time in the whole process she admitted to our mum that she was scared. I feel for her so so much. I don't live at home, so try to see her as often as I can.

    Would like to know how other teenages reacted to/coped with the idea of having brain cancer, and any advice... anything at all really.

    Love, Bryony (Bigsister)
  • wrote a long post then realised i was on the wrong forum, sorry but cant see how to delete it
  • I'm glad I stumbled upon this, for a while I thought there were only a handful of us. My son was diagnosed in February 2009 with Ewing's sarcoma. He had 3 courses of chemotherapy when new pathology report showed Wilm's tumor. After 2 more courses of chemo in May, his left kidney was removed with the tumour just this month. He is now undergoing 6 sessions of radiation therapy. Just last week I found out that he will have chemo again this Friday, right after he finishes radiotherapy. Sometimes it all feels never-ending and so,so tiring. It drains me emotionally to see him feeling weak and sick, losing weight and hardly eating at all.
  • Hi Sunmaid, welcome to the site, although not the place we would choose to be. I hope you find this site as helpful as I have. The support I have recieved has been a life saver.

    My daughter will be eighteen next week, she has now finished her chemo, but I totally understand what you mean about being emotionally drained and how tough it is to watch them go through this when really, they should be out living their lives.

    Chat is a great place to go and everyone is so lovely, there are lots of laughs which really lift your spirits when you get a bit down, and inevitably some tears too. It is so nice to talk to those who understand, you feel less alone.

    Maybe catch you in chat sometime, take care and hope your son's treatment goes well.

    Classy x
  • Hi Classy, yes, this site has been a life-line with the members so loving and supportive. Like you said, " how tough it is to watch them go through this when really, they should be out living their lives." Sometimes I couldn't help but think back to what I was doing at 18, living without a care in the world concerned only about fashion, friends, having fun,studies, and partying with death and illness the farthest thing from my mind. Yet here, now, my brave son faces this grave disease and goes through so much.

    I've tried chat a few times and it does help, very uplifting, and the others are welcoming even allowing for my slow responses as I am still getting used to the fast pace.

    How's your daughter now after chemo? I hope all is well with you both.

  • Hi Classyrioja .

    My 17 year old son was diagnosed with a brain stem tumour last Feb just before doing his GCSE. He has been having 3 monthly mri scans for the last 18 months with no change in size. He is having no other treatment . The tumour was found after long term back pain and the consultant decided to do a mri on his spine . What a shock when we were told of tumour unrelated to his back pain!
    I still feel that i am on the brink of tears all the time. My son will not talk about it . I want to find out as much as possible about this type of tumour and if maybe my son should be having some sort of treatment.