20 Year Old Brother With Hospice Care

I am 27 years old, my brother was diagnosed 3 years ago with Ewings Sarcoma...when he was 17. He has been through it all...chemo and radiation. He was told before Christmas of 2004 that the last treatments failed, and the percentile of survival was low. He has decided to stop the treatments and to get hospice involved. He has such a strong soul, it hurts so much to watch him suffer. I have always been his big sister, I have always been his protector. It is so hard. I know Ewings Sarcoma is rare, but please if there is anyone out there who can offer support...please do so.

Christine,
I know nothing of this type of cancer, but I do know that if he can get to a Cancer Treatment Centers of America hospital, they'll fight it in more ways than just chemo. They don't give up as easily as most oncologists, and the patients more often beat cancer, or at least extend their lives.

This hospital group is the owner of this web site, by the way. I'm just a patient's daughter, not paid to tell you any of this.

My mother is 78, with advanced colon cancer. She's had no chemo since October; her oncologist found in November that it wasn't working any more. He gave up hope of treating her, except to offer help to handle the dying.

We finally got her to go up to the Zion, Illinois, CTCA hospital (Midwestern Regional Medical Center), and they're doing radiation therapy. They also try to help with nutrition, mind-body medicine, natural herbs, etc. (It's sad how few people, especially MD's, realize how important nutrition is in fighting cancer, and other diseases. I've learned the hard way, for myself!)

People go to this hospital from around the world. It's interesting to see all the states of the union on a map outside the cafeteria, with the number written in of people there this week from each state. They have a residence building a few blocks away, with very reasonable rates for people from out of the area. Since we're only 17 miles away, I haven't checked their rates.

Your brother is only 27. That seems so young to give up.

And, as someone told me today, it's God Who determines how long you will be here. He gives us some choices to make about it, though.

Sharon B.

Christine
Please belive me when I say I know what you are going through. My son Oakley has Ewings . It started in his left hip. After 14 chemo treaments ,witch was 21 days apart. They say he had beat it.
This all started the day after his 16th brithday on March 10 2003.He finished his chemo in Feb of 2004. Over the summer of 2004 he was swimming and his left ribs started hurting him. This was in June of 2004. In Sept.2004 The cancer had come back in his left hip and this time in his left rib cage.
They started chemo again and 2 treaments later they stop it . It wasn't working this time. So they started radation on him.After 20 treamets the tumors are dead. But still they can come back according to the Dr's. But if they can get him in remission they will do a stem cell tranplant using his owen stem cells.
In July 2003 they remoned the tumor in his hip by removing it and alot of the hip joint at the base of the spine.He had to learn how to walk all over again.
He just turned 18 in March on the 9th. And his outlook is I will beat this again.
All we can do is ask God each day for his help.And keep our faith, that he will. Your brother is in our prayes also. Tell him not to give up hope.
Oakley R. Jr.

Christine- Try to encourage your brother not to give up hope. You can go to http://www.esbabies.com
There it tells you all about ES from different ES patients and their families.
My cousin was DX with ES at age 31, on 06/19/2000 with ES of the left femur after being misdiagnosed for almost 1 1/2 years. They thought she had pulled my groin muscle after jumping on a trampolene in April of 1999. Then, they thought it was a stress fracture. After a bone biopsy, the truth comes out. I had a partial hip replacement on 11/09/2000. After 8 rounds of chemo and 25? rounds of radiation. She now has been clean for 4 + years and adopted twins they are now 1. My prayers are with you and your brother. Be strong for what ever your brother decides.

Jackie

I am now 32 when i was told i had ewings i was 29 ( 1 month from turning 30) with at the time 4 young girls (2 was foster children) i had a big resection of my right hip and butt , my ewings is soft tissues. i live in a small town the first oncoligist i seen had never seen ewings b4...so i thought i would call about a comercial i heard on the radio, that oncoligist had seen and treated 2 other adults with ewings although i was the first soft tissue ewings, but he was in contact with my surgeon from the james cancer center. now i am 1 year in remission. but during my treatment my aunt, who was diagnosed the same month as me, lost her fight with cancer. i do feel for u and your family. when i was searching for treatment i called the cancer treatment of america . they also offer transportation it is called corp. angel network. so if u could get your brother there they dont just offer chemo or radiation.
i will keep u and your family in my thoughts and prayers.
Alice2

God only knows what will come from all of these trials you and your family are going through. I know cause i had a son that had ewings 3 yrs ago. I think you are a lot of his strength because I know without his family, GOD, and the courage he had he could not have survived so long. He also had 42 rounds of chemo, radiation and stem cell collection. Make every day count as it were your last. One thing I always told him no one know how are when your life is over, except the man up there. Not doctors, not mom dad or anyone else. He would always say what if they give me a week to live. I would answer they are not God. He will let you know when that time comes. He was very positive, loved life and taught us plenty. I will keep you and your family in our prayers. Mom of ewings sarcoma son. Peggy

hello my name is michael.my brother was diagnosed with ewings sarcoma three years ago.it started in the soft tissue of the brain.my brother was 29 at the time.he did one year of chemo and six weeks of radiation.he was cancer free for two years and then it was back.this time it was in his chest wall and was 16cm about the size of a grapefruit.he was in alot of pain could not breathe or eat much and lost about 20lbs in a month.he had to start chemo right away to buy alittle time.he started on a 10 day chemo called ifsfomide i dont know how to spell that.he returned 21 days later for cat scan and tumors had srunk by 90 percent.he has had a rough go and is doing well now.i know how hard it is.i just wanted to tell you and your brother to hang in and keep fighting.joe is my brother name he also had two brain surgerys.please write back and hang in there.

I wish you all the best with Ewing's. My Boyfriend of 6 years died 4 years ago from Ewing's Sarcoma. There is not a day that goes by that I don't think about him. I know that there were people that have survived from this, so I can only say don't give up. It is rough and a long road, but cherish every day you have together. My mother is being treated for Lung cancer now and it is bringing back all these memories and make me think why?? Sometimes life isn't fair, but remember that "it takes a minute to fina a special person, an hour to appreciate them, a day to love them, but an entire life to forget them".

Dear Sharon,
I am glad you received help from the cancer center; however, my son had ewings sarcoma and was diagnosed last February 2004 and had the chemo and radiation. Unfortunately he did not survive and we called the cancer center of america after Emory Hospital told us there was no more hope; but due to finances the cancer center of America told us they could not help us. So they can only help you if you have the correct insurance or available finances. Thank you. Bitter in Georgia.

My husband (48) was diagnosed with Ewings Sarcoma in 2003. We got him into a clinical trial which consisted of high dose chemo, radiation and then having a resection of the chest wall because his tumor did not shrink. After being disease free for almost two years, we have just found out that his Ewings has returned and spread. While researching options for treatment, I came upon something called chemosensitivity testing, where they take a peice of the tumor and test chemo agents on it in a laboratory setting. We consulted our doctor and surprisingly our insurance has agreed to pay for the testing. My husband is scheduled for the biopsy next week. This is huge as we will be able to find out which chemo agents his tumor is resistant to, eliminating the trial and error of finding what drugs work.