The Dr.'s watching my 9 yr old for lymphoma cancer - HELP

Discussion in 'Fibromyalgia Main Forum' started by Rose_Red, Sep 13, 2005.

  1. Rose_Red

    Rose_Red New Member

    I had Amber in for her follow-up today for her DDD meds. Her pediatrician finally told me that she's concerned about lymphoma in her neck.

    2 years ago December her lymph node was HUGE! I had to wait 2 weeks to get her into the oncologist. The biopsy showed something other than what's supposed to be in lymph nodes (whatever that is) but was benign. They told me that it would never go all the way gone because of how much it was stretched out.

    Now it's growing again. It's "way down on the chain" She said it means that it's low on her neck where lymphomas start. They want me in every 3-4 weeks to get her stats and measure it. Right now it's 3 cm long and almost 2 cm high.

    I don't know if I can do this again. How do I look at my little bug and not burst into tears. She's already anemic and has been. If it wasn't for the ADD we would have seen the symptoms sooner. Shes' been anemic for at least 2 years now. Yes, she takes iron in her vitamin when she takes it which starting tomarrow is going to be every day.

    I guess I'm asking if anyone knows of any GOOD lymphoma or lymphocitic leukemia websites. I don't want to read BS.

    I took care of my Godfather (moms brother) every single day for 2 years through the chemo, blood transfusions, hell, I even planned his funeral because his kids were worthless, while he died from the same thing they're afraid my kid has. I've seen what it does. I've seen what the treatment does. Up close and personal.

    It's taking everything I have inside me to not fall apart. I'm useless if I do. If I start to really cry I'm afraid I won't stop.

    I just talked to my ex MIL and every female relative of hers has died from cancer or leukemia. How do I not fall apart?

    michele

  2. brit_17759

    brit_17759 New Member

    My heart goes out to you. And I can't begin to imagine what you are going through. But being a mother myself I can understand.

    My niece got luekemia, she was three years old at the time. She was aready in stage two when it was discovered. She had all the chemo and radiation. She is 13 now and a very healthy teenager. I hope this gives you the hope you need.

    I also know what its like to see a close relative suffer from cancer and what the treatment does to them. As I helped nurse my grandmother and my mum. Sadly we lost them both. I was 8 months pregnant with my daughter when I lost my mum.

    I know its hard to stay strong and not fall apart in this situation. Try and gather your family and close friends around you, so they can help you through and give you the encouragement and support you need.

    I am sorry that I can't give you any advice on doctors etc. But you and your daughter will be in my prayers and thoughts.

    Gentle hugs,
    brit
  3. lease79

    lease79 New Member

    ~*Gentle Hugs*~ hun, you're daughter will deffinately be in my thoughts & prayers.

    Lease
  4. MKlady

    MKlady New Member

    The treatment has improved enormously. My husband had stage 4 lymphoma (spread to his bone marrow) and has been in remission almost two years.

    Get her to an oncologist and keep a very close eye on it. We found my DH's cancer by accident and if we hadn't he'd be dead by now.

    Wonder why they aren't just removing it?

    I can't recommend a web site because the ones I found were seriously out of date.

    Good luck!
  5. JLH

    JLH New Member

    Michele, I am so sorry that you and your daughter must go through this. I am at a loss here for words of wisdom to pass along to you. But, my heart does ache thinking of what you, as a mother, have to be going through.

    A former boss of mine, who was also a really good friend, had a son who developed bone cancer at the age of 9. I saw what he and his wife went through for 5 years. It was unbelieveable and really took a toll on them. But they were so strong and positive for their son.

    I know you will find the strength somewhere to be strong for your daughter.

    My thoughts are with you, and I will pray for the two of you.

    (((Hugs,)))
    Janet
  6. Rose_Red

    Rose_Red New Member

    right now they are watching it. I just found out about the family history tonight and I just emailed atholic charities to see if they can find any info on my medical histlry. i was adopted at 6 weeks old.

    If it gets any larger amber'll be on her way to the oncologist again. right now it's maintaining it's size.

    thank you sooooo much for sharing that you're husband was able to find remission. that' little bit of hope means so much.

  7. Therrell

    Therrell New Member

    My husband just died with Acute Myeloid Leukemia, but I have a nephew with Non-Hodgkins Lymphoma. The National Leukemia/Lymphoma Society has a goo site and they send updates. M.D.Anderson,in Texas,has good information and they also have someone on the phone that you can call and just ask questions. It is just a free service. Of course Johns Hopkins has good information, and the Mayo Clinic also has a good site and they also send you updates on new drugs and things. I so pray that this is not the case with your daughter. I will say a prayer for you both.Know that my prayers stay with you. If by chance that you do have to go back, there is a brochure for a $500 check that the Leukemia/ Lymphoma Society will send to you just at your request. Ask your doctor about it. It takes a little while to get, but my nephew got one and my husband also got one. I just thought that you might like to know that if you need it. GOOD LUCK AND GOD BLESS!!!!!They are making some wonderful headway with that disease!!!!!
  8. Therrell

    Therrell New Member

    I forgot to tell you that my nephew was in stage III Non-Hodgkins Lymphoma when they found his by accident. He was cut by a rock from the lawn mower and when he went to the hospital one doctor thought there was comething funny about his blood clotting and ran some test and found it. It started with the knot in his neck and he had one on his back and there was an additional one around his rib area. He is gong to Emory and has been for over three years. Just had a scan about a month ago and it came out CLEAR. Keep the Faith!!! He is going on four years this November.
  9. hopeful4

    hopeful4 New Member

    Michele,
    I'm so sorry that you and your daughter are going through this. I just can't imagine how difficult and heart-wrenching this must be for you.

    Honestely, I don't know anything about lymphoma. But on the news yesterday they were showing a child displaced by the hurricane, who went to St. Jude's Children's Hospital for cancer treatment.

    I do know that St. Jude's has up to date research and specializes in chldren. And as someone here mentioned M.D. Anderson in Texas is a good bet also.

    As a breast cancer survivor what I can share with you is what helped me:

    *I had to become my own best advocate, learning as much as possible in order to make educated choices.

    *I found it very important to go to a hospital that specialized in breast cancer diagnosis and treatment for the most up to date and informed treatment.

    Also, try to get some support from a local cancer support group or local social worker...you don't have to do this alone.

    You and Amber are in my prayers.
    Hugs and best wishes,
    Hopeful4
  10. Banka8

    Banka8 New Member

    Hello Michele,

    Since your doctor did not diagnois cancer and they are watching it closly try and look for other possibilities.

    Lymph nodes enlarge due to many reasons. Bacterial an viral infections can cause enlargement. My daughter has had a large one on her neck since she was about two years old and she is 17 now. Her pediatrician checked her out and said it was probably caused by an infection.

    Look into other diseases that cause lymph node enlargement.
    Sarcoidosis is one. I have CFS syndrome and I have enlarged lymph nodes. Do you have CFS or FMS? I believe it is possible to pass CFS and FMS to our children.

    All the best.

    Judy

  11. Mikie

    Mikie Moderator

    I am so sorry for all you and your daughter are going through. I think it's almost harder for parents to endure something like this than it is for the kids. Kids are very resilliant and I'm hoping she will hold up well through any treatments. God bless you.

    Love, Mikie
  12. Rose_Red

    Rose_Red New Member

    thanks again for all the good ideas. My brain just went numb and thinking is like trying to swim through pea soup. i'll check out the hospital sites. It's such a no-brainer but I think it leaked out my ears yesteray.

    I spoke with the school this morning and the nurses office and told them she knows NOTHING! or she'd milk it with 'my neck hurts' whenever she wanted to go home.

    I am so tired of being strong, of holding it all together, of holding onto that last bit of sanity by a thread. It's times like this that a nervous breakdown almost seems like a great idea. OOHHH AAHHHH - a 2 week thorazine vaca. I've never had thorazine but I've heard it makes you not think or care. I'm doubling my Prozac toady.

    If she had lymphoma or hodgekins then at least i could be proactive and DO SOMETHING ABOUT IT! It's the waiting for the worst that just wears me down to nothing.

    you'll never know how much your care and support means.
  13. cjcookie

    cjcookie New Member

    when the doctor said we had to run a test for cystic fibrosis on my son when he was very young and I held back the tears until we got into the car. Mom was driving and I cried the entire way home - couldn't look at my baby, and then for days until the test came back negative.

    I believe in prayer - my son and I will pray and you know you have bunches of friends on this board that will say prayers for you. Please keep us updated.

    Sending lots of hugs your way!
  14. ksp56

    ksp56 Member

    I am a cancer survivor. My first suggestion is to find another practice that doesn't want to wait every 3 to 4 weeks to check your precious Amber.

    In this day and age, there has to be more they can do then play the waiting game. Sometimes, the doctors don't always have the best suggestions. I would suggest finding another practice which is more aggressive than the one you are currently seeing.

    I pray it is nothing, but just in case, don't let them 'take their time'. This is a child's life they are dealing with.

    You will find the strength Michele. You share it everyday with us...

    Love and prayers,

    Kim

    PS. Just a suggestion. You could probably call St. Judes Children's Hospital in Memphis. They have so much knowledge and might have suggestions for you.
  15. Bailey-smom

    Bailey-smom New Member

    My thoughts & prayers are with you. I, too, have a 9 yr old and know how difficult this would be.

    I have a very dear friend that is 37 yrs old and he went through this when he was younger (amoung many other things). He is now the administrator of our local hospital & the most stubborn man I know.

    I wish you the best.

    Kelly
  16. orachel

    orachel New Member

    And I can definitely hear how terrified you are for your little one, and you have every right to be. It's a terrifying situation. But sounds like you're coping like a trooper. And if you need to take a few minutes and fall apart crying, you go right ahead and do it. Then I know you'll be able to get it back together because your little girl needs you!

    You sound like an amazing mother, and she's lucky to have you in her corner!...prayers and hugs!
    Rachel
  17. orachel

    orachel New Member

    Sounds like you're going nuts from the waiting, so turn proactive about it. Call docs, and find another to give you a second opinion. I don't know anything about lymphoma, but seems to me they could at least check it out NOW and tell you if its benign and set your mind at ease, right? I've never heard of "wait and see if the tumor grows" before, so maybe checking another doc isn't a terrible idea. At least it gives you options, right?
  18. ckk

    ckk New Member

    i will not for one second say to you i understand, i do however have children of my own and can't even go there. i will keep you and your daughter in my prayers. please try to stay strong and know we are here for you if that helps at all. remember to keep the faith. prayers do work!
    ckk
  19. fivesue

    fivesue New Member

    I will be praying for you and your daughter. My one idea was that it may not be lymphoma...and another, I just remembered, is an aunt of mine had lymphoma 30 years ago, stage 3-4. She went through chemo and it was absoulutely horrible; however, she has lived these last 30 years without any sign of cancer.

    Hope this is encouraging. I, again, will pray for you. I would have a hard time not crying also. Find someway to deal with your shattered emotions...counselling or just a good friend.

    Love,
    Sue
  20. NyroFan

    NyroFan New Member

    Rose_Red:
    I do not know of any sites, but wanted to extend my love and sympathy for what you and your child are going through.
    Stay strong. Do not let it put you in a flare, because you are under real stress right now. I'll send a prayer for both of you on the board's Prayer Night.
    Hugs,
    NyroFan