I Am The Mom Of A Teenage Survivor

Hi there,

 I am new to the message board. My daughter Erica is a Ewing's Survivor of almost 2 years now. I still struggle with all of the quarterly scans and would love to have someone to talk to that understands. We went through 9 months of chemo, bone replacement surgery (her right humerous bone) and all was done on June 15, 2005. She was originally diagnosed on Oct 1, 2004. At that time she was 16 and has now finished her 1st year of college. While I may not be going through heck right now, I did go through this for an entire year. How tiring but we all fought together. Prayer and Laughter go A VERY LONG WAY. Ill be happy to talk with anyone who needs some reassurnace.  Thanks and God Bless

 

On 5/27/2007 Momofsurvivor wrote:

Hi there,

 I am new to the message board. My daughter Erica is a Ewing's Survivor of almost 2 years now. I still struggle with all of the quarterly scans and would love to have someone to talk to that understands. We went through 9 months of chemo, bone replacement surgery (her right humerous bone) and all was done on June 15, 2005. She was originally diagnosed on Oct 1, 2004. At that time she was 16 and has now finished her 1st year of college. While I may not be going through heck right now, I did go through this for an entire year. How tiring but we all fought together. Prayer and Laughter go A VERY LONG WAY. Ill be happy to talk with anyone who needs some reassurnace.  Thanks and God Bless

Hi

I am also new to the message board. My daughter was diagnosed with Ewings Sarcoma in 2003, just 2 days after her 8th birthday. She went through a year of hell - 3 days of chemo every 3 weeks. She also had an operation to remove the tumour in her thigh and the worst of all - 25 consecutive days of radiation which has left her with horrific scars. She has been in remission for almost 3 years now and is very, very well. She still has checkups every 3 months. The removal of her tumour as well as a broken leg has left her with a limb length discrepancy. She broken her leg two years ago and because of the radiation it still isn't healed properly. But that is a mild problem compared to the cancer.

I would like to contact anybody who has had Ewings and is remission. I have only been in contact with kids going through the treatment and it gets very depressing at times. It's amazing how you can be strong through the treatment and then look back on it and wonder how on earth you got through it all! My daughter was definitely a source of strength to me, always very positive and full of laughter and jokes!! I found that people offered their sympathy, but never truly understood it! 

Keep going strong and hope to hear from you soon!

Nicky

 

Dear Nicky

 I am very happy to hear about your daughter. Thats awesome. I hear you when you say a broken leg is nothing compared to what she has already been through (bless her heart) Three years is awesome! I am getting a bit anxious because they did tell us that once two years passes in remission that the chances for her recurrence go down 10%. They said based on the fact that nothing was in her marrow, or anywhere else when she was diagnosed, that they felt it was isolated and so they gave her 80-20. After two years goes bye, they are figuring on 90-10.

We have watched countless kids not do so well, and then we have seen some great things but I understand that it seems that people only want to talk about this while they are going through it. I realized that with Erica (my daughter) this past weekend when we attended the Relay for Life. She didnt want to go. She didnt want to do the Survivor walk. I was kind of not happy with her because people need to know that there are survivors, yet the survivors feel guilty (this is what she finally told me) She knew of a little boy in the hospital with a brain tumor. He unfortunately didnt make it. Erica wonders why she did and yet at the age of 8, he was gone. She almost feels guilty that she had lived more life even back then and why did God choose him over her to take? I think parents may feel the same way, or they are happy to just have it behind them. Its tough to look back but truthfully, sometimes I need to look at the strength it took then and realize, I can do anything if I can do that. My daughter was my pillar of strength as well. We laughed, prayed, watched movies and just became closer. Ideally, under different circumstances, this is what every mom wants. It sucked is the best that I can say, but I remember it so vividly, especially walking into a hospital. Our house is currently up for sale because I just want a new beginning. It has been on for 4 months now, with no offers. I think God might have the right person in mind and they just do not know it yet.

 Please write me anytime. I am always on here for something or another!

Carol Malloy

Hi Erica's Mom, My husband has been battling sarcoma for the past three years.  His is osteo, but we have been going to the CTRC Center in San Antonio, TX for the past year doing clinical trials.  We met a man there this year that has ewings sarcoma and went on a trial called AMG479.  In six months his cancer was totally gone.  Our Dr. is Anthony Tolcher.  He has since opened a new center in San Antonio called START.  I pray that Erica's scans will be good, ( I understand how totally scarey it is), but if by chance it comes back check out the trial.  I can give you his name if you are interested.  Sondra

Hi Sondra,

I am sorry that your husband is battling cancer. It just plain stinks! Seems like that is all that you hear about on the news, ads, etc. and yet no one can come up with a cure for this thing. I believe that huge strides are being made and for that I am greatful. I will say a prayer for your husband that all continues to go well with his treatment. Ericas cancer was in her arm and she did have limb salvage surgery done. They took out the entire bone that the cancer was in and replaced it with cadavor bone. Luckily we caught her cancer in very early stages and it did not go anywhere else in her body. I fell blessed beyond imagination. Sometimes when I think that things are really bad, (work, selling our home, etc.) I think about what she went through and truthfully I am humbled. I will also say a special prayer for you because as a caregiver, I think people forget that you are especially tired and need the strength to help your loved one through this horrible disease. Please let me know if there is something that I can do for you. I appreciate your information for my daughter. Right now I am praying that the cancer stays away!! Shes 19 and doing great right now!

Thanks for your response and please let me know what else you need. I know I am in Colorado, which makes help hard, but I will do what I can. How old is your husband?

Hugs and blessings..Carol

Did your child have the translocation between chromosomes?   Have you ever heard of Ewing's without that?   My son has been tested twice w/negative for chromosome translocation and yet the doctors still are sure that is what he has.    Information (please)??

thank you.

Hi there

 I have never heard of Ewings Sarcoma diagnosis without the switch of the chromosomes. My daughters chromosomes 11 and 22 were swiched. Luckily the split was a good one and she responded well to the treatment. She was just recently scanned again (every three months) and she is still in remission of 2 years, 4 months.She goes in again at the end of January for her next set of scans. (They happen every 3 months now until 4 years time) Then she goes to 6 months for 3 years or something like that. I think I would get a 2nd opinion or ask them what makes them think it is Ewings. They can tell from looking under the microscope at the cells and be able to tell what kind of cancer it is. You might also do some research on the subject and see if there is something that we are missing.

 Blessings and please let me know if you want to talk further.

 Carol

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

On 12/5/2007 Momofsurvivor wrote:

Hi there

 I have never heard of Ewings Sarcoma diagnosis without the switch of the chromosomes. My daughters chromosomes 11 and 22 were swiched. Luckily the split was a good one and she responded well to the treatment. She was just recently scanned again (every three months) and she is still in remission of 2 years, 4 months.She goes in again at the end of January for her next set of scans. (They happen every 3 months now until 4 years time) Then she goes to 6 months for 3 years or something like that. I think I would get a 2nd opinion or ask them what makes them think it is Ewings. They can tell from looking under the microscope at the cells and be able to tell what kind of cancer it is. You might also do some research on the subject and see if there is something that we are missing.

 Blessings and please let me know if you want to talk further.

 Carol

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Carol,

Thank you for replying to my msg.   I was starting to wonder if this msg board was still active.   Extra thank yous since your daughter is doing so well and for you still reaching out to those of us searching for someone to talk to.

My son, 22yrs old, began having back pain in mid-July, by first of August so severe he came home from college/work to get "fixed"

We spent 3-1/2wks with doctors saying he didn't look so bad and insurance denying any sort of mri/scans.   We went to local doctor numerous time and local ER four times during that period.  Though his pain kept getting worse they only gave stronger drugs, no tests.  Finally, 29 days after he came home, at 4am my husband and I took him to the next town's ER and they gave him a shot for pain then said to take him home.   We told them they didn't understand, we could no longer manage his pain and would not take him home until they could tell us what was wrong.   Six hrs later (after biopsy) the diagnosis of Ewings of his pelvis, few more mri's (now showing brain mets) and referral to Stanford Med. Ctr.  

At Stanford they reran all mri's, ctscan and did lumbar puncture ... all negative for brain mets (whew) and did not show chromosone transfer.   He rec'd 5day chemo and we were sent home.   Next visit, 3day chemo and reran mri's, lumbar puncture and new biopsy ... again, no brain mets, no chromosone transfer ... but since first biopsy showed 70% cancer cells and the new one 10%, decided treatment was working and must be Ewing's ... additonally I've seen on his discharge papers that they list Pelvic w/vertabrae,sacrum, bone marrow involvement.    I'm not sure exactly if involvement is the same as metasized Ewing's (??) or if it is still considered localized (???) ... I've searched all over the net for some sort of clarification but havent seen any.

On our first admit to Stanford, Pain Mgmt Team "cooked" up meds of 800mg morphine and others ... amazingly, they worked and he was finally w/o pain.   After second round of chemo he started decreasing pain meds and now after his 4th chemo is completely off any pain meds and has no pain.    We have new round of testing scheduled for next week to see for sure if chemo is working.

Must admit to being very frightened.   I was doing fine until last night.  My husband and I went to a Holiday Party (first social activity since July) ... a woman came up to me and said "We're in the same club"   ... .??? then she said her 22yr son died two months ago from cancer ... he had testicular w/a 95% cure rate and since my son's was so much less of a cure rate I shouldn't get my hopes up.   Devastated me.  I have been crying since last night. 

 Sorry this msg is so long.    I have not had anyone I could "vent" to ... all web info seems so old.   Tried to login to ACOR but haven't been able to figure it out.     Thank you for replying.    I was going to send this as a private reply, but am hoping others will see and input.

my son is doing great, moving forward, playing music w/his buddies, eating well, spirits high, sleeping is so-so.  I notice he looks so pale.

... one foot in front of the other ...

 

WOW I am shocked! For someone to tell you the story of their son and if his unfortunate outcome is still shocking to me. And very rude to BOOT. You must think of one thing and one thing only and that is, your son is 100%. Thats the only number you focus on. You pray and you watch every darn funny movie that you can find and you let God handle this for you. Do not let anyone tell you anything that may happen, could happen, should happen, etc. Thats a bunch of crap and if I were there I certainly would have said so!

Now as for the diagnosis, I am sorry but something doesnt seem right. Ewings Sarcoma is a childhood cancer and as such should be treated as such. Eventhough Erica is 20 tomorrow, she will continue to be monitored by her Drs at Childrens Hospital. They specialize in Childrens Cancer. You need to get brave and ask what the reports say. You need to be proactive in your sons diagnosis and treatment for you to understand it properly. To this day, I know the drugs my daughter was on, the length of treatment etc.

I tried to leave my phone muber on here but they blocked it. Write me back privately and leave me yours. We should talk.

Hugs and Blessings

Carol

Update on my daughter the survivor! She goes in next month for her 3 year remission x-rays!! No signs of anything as of now, and will hopefully continue on the same path. The Doctors did a EchoCardiogram last time she was in but we never got any results, leading me to believe no news is good news and there were no abnormailites found. Please keep the faith! I do not believe there is one day that I do not thank God for bringing her cancer to light at an early stage so that we could do something about it. Shes happy, healthy and going into her 3rd year at college and completely moving out of the house! Tough for me, but truthfully, if she takes all of her makeup, and crap its all A-OK! The thanks that she is alive and healthy and able to do anything she wants as all I need! Keep the trust in God that he will keep any of you battling this horrid disesase, with Him at all times, and that He can get you through anything! Blessings to all of you!!! Please post your news, I'd love to share my experiences if needed.