children with cancer

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pip57
pip57 Member Posts: 12,401
children with cancer

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  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    There are a couple of us here who have experienced children with cancer. Is there anyone else out there who can relate? I am interested in how this has affected your own journey with bc.

  • Marian61627
    Marian61627 Member Posts: 226
    edited May 2008

    Hi - I have a 12 year old cousin with osteo sarcoma and yes it does effect how I think and feel about my own dx (and life!).  I totally minimize my dx because she is going through so much and may ultimately lose her leg.  Sure I've lost my breasts and that is really difficult but I would change places with her in a minute because she is so very young and has her whole life before her!  I've had kids and lived a great deal of life!  Not that I want her or I to give up on one moment of it - but if I feel guilty at all (as some of the other threads have mentioned) it is about her.  She is handling the chemo very well and I feel incredibly sad for her...  That being said many people who have experienced such a difficult start to life choose more difficult paths in their adult lives.  I hope and pray she can get a good long live out of all this misery.. 

    Have you got a child in your life facing cancer?  Can you tell us how it affects your own treatment?

    Best

  • leaf
    leaf Member Posts: 8,188
    edited May 2008

    As a youngster, we had a neighbor who had a 2 year old with brain cancer. I was the last non-family person to babysit her. (I was in my early teens). She died about 8 months later. (This was decades ago.) It was completely heartbreaking.





    Most oncs don't classify my condition as bc (I have LCIS and nothing worse), but it did leave me with the message that cancer does not fight fair.





    My niece also had leukemia as a youngster. She's fine now, though. I think its one of the more curable cancers at that age.


    I agree with Marian-how have your experiences with children shaped your experience with cancer?

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    Cancer in children just plain sucks. It pains me that my child died knowing she would not experience things like love, parenthood, college, her first apartment, her first kiss, etc.



    I must say that I don't think my attitude toward my own fight with this beast would be the same without my experiences with my daughter. When I lay in bed after chemo I would think about all the nasty treatments she endured and vowed to do the same. Being able to breathe and continue to live after her death also made me realize that I could endure anything.



    Here is something weird. Cassie always told me that she would be with me no matter what. She would say this often. While I was waiting to get the tubes removed after my first mast, the mother of one of her public school friends called. She said that she had hesitated to call and was very uncomfortable but Cassie had been coming to her in dreams insisting that she do so. She wanted me to know that she was right beside me. This lady had moved from the area quite some time ago and was surprised when I told her what I was going through. And I have to say, she was always such a sweet, gentle person...one that you would almost expect to be spiritual by nature.



    There are other stories that give me hope and strength that I will share if you want.

  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited May 2008

    Prettyinpink ~

    My sincere deepest apologies for your tremendous loss.  If Cassie said she would always be with you, I am confident she is.  Not only in your heart, mind and soul but in spirit.  She would want you to be happy and live on...keep the faith.

    My niece was diagnosed w/ bone cancer at the age of ten, and is now 16 and doing well, however her mother has been just recently diagnosed with brain cancer.  I think how much can one family take !? 

    Who would have known that little girl would be our inspiration today ?

    Much LUV

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008

    Prettyinpink - my deepest condolences for the loss of your beautiful Cassie - and I'm so touched by the story that you shared with us - it renews my own faith that I will see my dad again in heaven (he died from brain cancer 5 months before my wedding.) If you don't mind talking about Cassie - could you tell us how old she was? You can pm me if you'd prefer - she sounds like an angel watching over you!

  • nash
    nash Member Posts: 2,600
    edited May 2008

    PIP, please accept my condolences as well. I can't imagine anything more wrenching than losing a child. I was also touched by the story you shared, and would love to hear more.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    If you are comfortable sharing stories of your beautiful Cassie, I'd love to hear them.  Hope and strength are wonderful gifts to share.

  • kimbly
    kimbly Member Posts: 398
    edited May 2008

    My daughter had a friend who at the age of 9 was diagnosed with Hodkins Lymphoma.  She is now 13 years old and doing wonderfully.  This was heart wrenching while it was happening.  Out of it though she and her family became closer and more strong. They did alot for the leuk. lymp society.  I think back to her strength and draw from it.  If a nine year old can endure what she did I certainly can.  I have known other kids myself with cancer..some are still with us, others are not. Cancer is so cruel and definatley does not fight fair.  NO child should suffer with this. 

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    Thank you for your responses. Although it was almost 11 years ago sometimes it sometimes seems like last month and other times it seems like 100 years ago. Cassie was 14 (1995) when she was diagnosed with rhabdomyosarcoma (muscle) and 16 (1997) when she died.



    Here is another little story that gives me hope. When we were at Sick Kids Hosp getting the results of her latest CT scan they told us that she only had 2-4 months. All the nurses were coming in crying, the doctor was crying, and Cassie was hugging them all and comforting them. In the car on the way home I asked her if she understood what they were saying. She said yes. She hadn't wanted to tell me earlier, because she knew it would upset me, but she had a dream the night before. However, she said it wasn't really a dream, it was very real. She was on her horse, Elmo, that had died over a year earlier. She was riding as fast as they could go over the clouds. This would be Cassie's idea of heaven. She knew two things at that time. One was what the doctors were going to tell her that morning and the other was that that was alright.



    She had such a sense of calm. People came to visit and could not believe how Cassie was comforting them. She kept that calm aura about her until the moment she died, fully conscious and in control. I will tell that one next.









  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited May 2008

    Cassie sounds like a special Angel...one who has a lot of faith seems to have a sense of calm...in heaven there is a better place, though here on earth we don't know what is beyond those clouds and the fear of leaving loved ones can get the best of us, Cassie sounds as though she was comforted and very loved and I am sure is smiling down at you.  It seems children can be so brave... than even the strongest adults.  May she be at peace and your guardian angel...

    Blessings,

    Much LUV

  • Marian61627
    Marian61627 Member Posts: 226
    edited May 2008

    PrettyinPink.. first I am so very sorry for the loss of your loved Cassey.. I don't know if I could survive if I had lost one of my children it must be the most difficult thing one can imagine and in your case you could experience!!!

    I want to let you know that the dream think is really possibly.  When I had my genetic testing because my daughter told me her doctor suggested it (you will do anything for your kids) because my father had died of breast cancer -  I felt comfortable and not in any way at risk..  All of my test had come back negative including the BRCA 1/2..  but the genetic counselor suggested a breast MRI and still I felt there was nothing to find.  However when I was waiting for the biopsy (the MRI found "something") I had a dream where my father came to me with a very concerned look on his face.  No actual words transpired but I was aware of asking him if this was cancer and him knodding yes.  I woke up and told my husband that it was cancer.. he said I shouldn't worry - but the biopsy came back DCIS Stage 0.  I was blessed to have found it so early..

    I'm really sorry you are going through so much too but if you daughter said she would ALWAYS be with you I believe her!

    Love

    Marian

  • abbyy2000
    abbyy2000 Member Posts: 35
    edited May 2008

    I too am sorry for your loss. Last year, my then-8 year old daughter was diagnosed with a rare childhood cancer, stage 3. We were told that older children did not fare well with this type of cancer and she had a 30 to 40% chance of survival. The doctors opted for major abdominal surgery to remove as much of the tumor as possible before starting chemo. After a 5 1/2 hour surgery-one of the longest days of my life-we received the miraculous news that the surgeon had removed 85 to 90% of the tumor, which dropped the stage to 1. She still has some of the tumor in her spinal column. Subsequent scans have been negative for mets. The doctors don't want to risk neurological damage, so she is closely monitored with mri's and neuro exams. She now has an excellent prognosis. Throughout this ordeal, my daughter was very brave and positive in spirit. Since then, I have watched her play soccer, softball, perform in school plays, play violin, celebrate a birthday and am so very, very grateful to still have her with me.



    One month after her diagnosis, I received my bc diagnosis. Because of this experience, my daughter and I share a very close, special bond. Her upbeat demeanor --and knowing that I had to be here for her-- gave me the strength and determination to deal with my cancer. I am now cancer-free.

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    Wow. What an inspiration! Doesn't it amaze you how these children endure all this crap as if it is just normal. I can certainly respect the decisions that you have had to make while undergoing all this stress at once. You and your daughter will be in my thoughts everyday. Please keep me posted.



    Have you considered genetic testing? I am waiting for results for the p53 gene.



    Take Care

  • abbyy2000
    abbyy2000 Member Posts: 35
    edited May 2008

    Hi, prettyinpink100. Thanks for your kind words. I did the BRAC test-negative but no others, I am concerned for my daughters (I have a 12 y/o too) as my mother-in-law had Paget's disease. What is the P53 gene test? Abby

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    The p53 gene regulates cell reproduction and functions as a tumour suppressor. About 50% of all bc tumours contain p53 mutations. Some of these occur due to environmental issues and some are inherited. When children develop certain cancers, ie sarcomas, it is most likely due to the genetic factor.



    I wanted to be checked for mutations for my surviving children. There are studies that add p53 cells to the DNA (way beyond my knowledge!) as a treatment. I would love to take part in a study like that if it means an eventual successful treatment for future generations.



    I would ask your onc about a referral for genetic counseling. They take an extensive history and determine what is most likely in your situation.

  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited May 2008

    I am wondering about this gen.testing myself....my niece had bone cancer - sarcoma and now her mother has brain cancer - glioma (sp)...I was asking her about gen.testing and they say they may not be linked yet, when I went for the BRCA history...they suggested it may be.....would that be the same testing ( the p53 ) ???

    Much LUV

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    No. That is a different test. They ruled out BRCA testing for me due to my family history. BRCA is more likely to be involved if bc has been dx in several related women before age 50. It sure sounds like there could be a genetic component in your family but it doesn't mean that all of them are connected.



    I really believe that all cancers have some gene mutation involved and that some day treatment will be linked to these genes. Right now, we only know a few of them.

  • jalydiju
    jalydiju Member Posts: 144
    edited May 2008

    Prettyinpink,

    My heart goes out to you, although my oldest son hasnt got cancer, we have been through a number of scarey times since before he was born.

    From 24 weeks af gestation he was a breech postion and wouldnt turn so at 32 weeks they did some scans. They found large mass and stomach was full of fluid. Was delivered in a major hospital in closest capital city. Was found to have polycystic kidney disease and mass was one of his kidneys. They removed it at 3 days old.2 weeks later we went home. At 2 years of age ended back in hospital with double hernia opp. At 6 years of age he had what I thought was a virus, developed acute pain in tummy, collapsed everytime he urinated, time to take him to Dr. Dr sent us same day because of history to Pedeatrician, tests, ultrasounds and catscans sent us to Royal Childrens oncology dept. They told us to expect worse news. Due to high temp they couldnt do explore surgery. In the end they had to do it anyway, we sat with other parents waiting to hear what  our children were in for, in our case it turned out to be a abcess on the outside of his bladder. 1" thick walls and as large as a mans fist. They drained it and we went home. One of the lucky ones. What sticks with me is the other children that wernt so lucky. The courage and strenght that one so young has developed through having to deal daily with emotional and physical trauma. One young fella in particular stands out most. He was sitting up in bed when we first arrived. (The horror/shock hit my husband and myself when we saw all these bald headed kids sitting up in bed. Reality hit us like a truck) this one lad was just sitting there laughing and talking to the others in the ward when I realized that something wasnt right, he had his leg hanging around his shoulder. It was his artificial leg. He had a very wicked sense of humor and just like to shock people. He was also facing the possibility of loosing his other leg. Just in awe of the strenght and versatility that these kids display.

    I am waiting for my results, and I only hope that if they arnt so good that i can display half the courage,strenght and sense of humor that these kids have.

    Your daughter will always be with you as you carry her in your heart.             Jaly 

  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    Jaly,



    Nothing puts things into perspective like our children's lives being threatened. Thank you for sharing your story.



    Do you have any results yet?



    PIP

  • jalydiju
    jalydiju Member Posts: 144
    edited May 2008

    prettyinpink,

    No, due to not enough tissue being collected to test, Dr wants to wait 4 months and do again. Dont understand why. Why bother with first test? Going to organise to go to Breast Clinic in the city for another opinion Monday.

    So true re our childrens lives being threatened. I have lost a sister to Melanoma, she was 35. This has had a huge impact on my opinions and the way I handle things in my life now. We didnt have much time until dx and her leaving us. She to near the end, was like your precious daughter, serene, calm and thinking of everyone but herself. She was so beautiful, her skin was like porcelain, her hair shone and her eyes were so bright, she looked like a angle to.

    I often think of the kids in the oncology ward that my son was in. I wonder if they have made it, and if they are happy and what they are doing now. I feel for thier mothers if they havent. That was 17 years ago. A piece of my heart will always be with them.

    Sorry this is so long. I am going to get a reputation of a waffler with my long posts.

    You to will now be always in my thoughts.

    Jaly

  • Amy77
    Amy77 Member Posts: 1
    edited June 2008
  • pip57
    pip57 Member Posts: 12,401
    edited June 2008

    Here is my update. Pathology returned today from my lumpectomy...it is benign!! It was a dermatofibroma. My genetic tests are back and I have an appointment on May 17th for the results.



    My Dad died on the 28th and his service is tomorrow. It really was a blessing. He has been incapacitated for the last years from several strokes. Still sucks though. On his obit we ended it with the line "with Cassie again".





  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited June 2008

    Oh PIP ~

    This is awesome news !  You have been through enough and now you can concentrate on healing emotionally..I am so sorry for the loss of your father...I am sure he is with Cassie and looking over you with loving arms.

    God Bless you!

  • jdg1
    jdg1 Member Posts: 608
    edited June 2008

    My heart goes out to all of you who have or is dealing with a child with cancer.  Although I have been diagnosed with BC I don't look at it like I look at a child dealing with cancer.  It is just not fair. 

    Prettyinpink,

    I am so sorry for the loss of your daughter, Cassie. 

    June

  • priz47
    priz47 Member Posts: 470
    edited June 2008

    Children with cancer are so awesome and so strong. They go with the flow. My son has Hogkin's lymphoma. He was dx when he was 15(2 years ago). It is back, but he is very optimistic. He has been able to do awesome things through the Starlight Foundation, like ski in Vail, go to Hawaii. He learned who his true friends were through this and has made great new friends. He is able to give me tips on making it through chemo, surgery and just keeping a positive attitude. we all can learn from these kids.

    D

  • pip57
    pip57 Member Posts: 12,401
    edited June 2008

    So sorry you are having to deal with both right now. Your son must be your inspiration.



    My Cassie was also involved with Starlight. They were wonderful to her and her brothers. Our whole family was sent to New York City to see Rosie O'Donell. It was a great trip and precious memory. They continued to take the boys on outings even after she died.



    Keep us posted on how you both are doing.



    Take Care

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