Ewings Sarcoma

My son has Ewings Sarcoma. He's 19 (diagnosed at 18). Unfortunately, he has all of the treatments but(radiation, chemo, and surgery)it is not gone . Doctors do not know what to do but wait and see if it spreads. My son's is very rare because it is PNET and in the pelvic area (less than 35% 5 yr survival rate). I know that the Ewings family is made up of 4 types and that only 250 people in the US are diagnosed a year with Ewings but I was wondering if anyone knew how many are diagnosed with PNET in the Pelvic area. (I guess researching is helping me to not think about what is happening).

My son is also 19 he has been battling with this since March 2003. . he has been in remission twice, but it is back again, they now say there is nothing more they can do for him. . he can be tested to take part in a trial drug AZD1721. . but of course this is not aimed at helping him. My son's is on his ribs, no mets no spread to the bone marrow. . he looks better today than he has in a long time . . How can he be dieing? ? ? My son had HDT with a stem cell transplant in November 05 which bought him these past 9 months in remission, we have been to 'every' hospital in Glasgow that treats this disease, had every treatment and still it comes back. . there isn't much we don't know about this 'monster' except how to beat it once & for all. . . if I can help you with anything just ask. . . if you think you have something to help me . . please do. . Take care . . .

I am extremely sad to say that my son Jef got a miracle and went to his new home on August 2nd. I miss him so much and feel like I am on a roller coaster ride. He had chemo- all of it. He had surgery but the cancer was too aggressive. He won the battle in the last hour of his human life and spit the cancer out. I know this sounds crazy but it is just how I feel. We did research into alternatives. The only one that gave us real hope of at least giving us more time with him was Intraveinous (spelling?) Vitamin C. I did a lot of checking into this and sent it to his doctors and they thought it was a good idea to try but just not with a company out just for a buck. We ran out of time. I am so sorry you are having to go down a troubling path with your son. Have faith and be positive. You never know. A miracle could come in the form of a full recovery. I have started a "group" called Jefyology but I am waiting to get it really going (need to get through some of the hurt first or at least attempt to). Right now I am working on donations of items for bags that will go to the hospital for the parents, ie a care package. Later I want to turn my --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- into a connection for families dealing with cancer. Not a counseling thing but just an share info email and Jefyology updates, which is what it is right now (I mean the updates). Don't mind me the more I ramble the more my mind stays busy. I wish I had a solution, an answer or better yet a cure. If you want to know about the IV vitamin C, I think I still have some phone numbers. Just let me know. I'll say a prayer for you.

I'm so so sorry to hear that. . . I don't know what to say. . though thats what people say to me all the time. . . I'm so scared . . I know that soon I will be where you are and I don't think I have the strength. . Ryan is the strong one, his mission statetment is 'Life is 1 big party'. . . to me the party sucks ! My heart goes out to you & your family X

I was in that same boat. Jef was the strong one. Always telling me not to worry that he was tough. He was right. You're right about the party sucks! I can't be more on the same page but try hard to not focus on what is wrong as much as what is right. Don't worry about not knowing what to say, who does?! What can anyone say?! "Sorry for your loss"...I HATE that one or better yet, "At least he's not in pain anymore". I just want to scream, "But now I'm in the worse pain than I have ever been!!!" It sucks. It all sucks. To be honest, I think (at least in Jef's case) they know when the time is approaching. I wish I could fix it for me and for you. It makes me wonder why money can be spent to send people to the moon, White House plants, Hospital green lawns, etc. but not enough to find a cure for our children! Angie

Hi Angie. . . . I'm like you . .if 1 more person says : you have 3 more kids you'll find the strength to go on I think I'll committ a murder . . the basic truth of the matter is they haven't a clue what their talking about and I don't know about you but I would rather they kept their advice to themselves. . . its different chatting to you as sadly you do know exactly what I'm talking about . . I feel like screaming all the time & often do . . take a drive in the car and scream & cry then go back home see Ryan and be thankful for another day with him. . . I've in a way accepted that he's going to die (my husband hasn't) I'm scared about the why & where of it all ? ? is he going to suffer more than he's already suffered ? ? its so inhuman the pain these kids go through, I'm maybe letting my imagination run away with me because Ryan's not at that stage quite yet . . but the unknown terrifies me. . . .I couldn't agree more about the 'money' we send aid to the 4 corners of the earth but can't spend what is needed to find a cure for our own children. . don't know about the U.S but here in Scotland a lot of research is funded by charities . . .any aid that Ryan has had he's had to apply to these charities its totally wrong these kids shouldn't have to worry about paying their mobile phone bill or getting money for whatever it is they need the Goverment & their polices suck . . .would be a different matter if it was 1 of their kids. . .we don't even have a 'teen' cancer unit in Scotland . . since the age of 16 Ryan has shared hospital wards with older men. . though I support older people 200% it's not the ideal situation for a young person's moral. . . . Anyway better go now as you'll be fed up with my rambelings . . Ryan's at a friends house staying over and for now a wee bit of normality. . . . take care. . . . Karen x PS unaware of the intro. Vitamin C thing can you send me some info please

Sorry it has taken so long to get back to you. My sister, my ex-mother-in-law, and I all went on Jef's wish trip that a foundation gave to him. Unfortunately, I could not have a real good time. I miss Jef so much. He became so different the last year that he spent every minute just about with me. It is so unfair that Ryan has to go to an adult hospital. Jef would have had to go to an adult hospital except we were REALLY lucky. Jef's pediatrician only takes kids until they are 16 but he thought Jef was something special (and he was/is). So he was keeping him as a patient until he was 18 but that was when Jef was diagnosed. He automatically was able to go to Cooks Childrens. Granted most of the kids there were little kids but he received really good care there except for a couple of people. I wish Ryan was here at Cooks, then I could visit you two and at least try to be of some comfort which is what I am trying to do with my Jefyology stuff. Plus they have video games in and out of the room which seems to be a male thing! I am having a lot of difficulting accepting Jef not being here. I keep thinking it was a bad dream and I'll wake up soon. When they told me Jef had 3 to 6 months (which turned into 1 to 2) I didn't believe it. When they said he had 1 to 2 weeks (which was about 1) I didn't believe it. That day I didn't believe. He looked fine and acted fine even though his back hurt (spread of pelvic tumor to spine). I thought he was fine. He just slept a lot. I won't give you the details of that day because I don't think you would want to know. I miss him. Angie PS I'll try to send you the information on vitamin C this week.

Sorry it has taken so long to get back to you. My sister, my ex-mother-in-law, and I all went on Jef's wish trip that a foundation gave to him. Unfortunately, I could not have a real good time. I miss Jef so much. He became so different the last year that he spent every minute just about with me. It is so unfair that Ryan has to go to an adult hospital. Jef would have had to go to an adult hospital except we were REALLY lucky. Jef's pediatrician only takes kids until they are 16 but he thought Jef was something special (and he was/is). So he was keeping him as a patient until he was 18 but that was when Jef was diagnosed. He automatically was able to go to Cooks Childrens. Granted most of the kids there were little kids but he received really good care there except for a couple of people. I wish Ryan was here at Cooks, then I could visit you two and at least try to be of some comfort which is what I am trying to do with my Jefyology stuff. Plus they have video games in and out of the room which seems to be a male thing! I am having a lot of difficulting accepting Jef not being here. I keep thinking it was a bad dream and I'll wake up soon. When they told me Jef had 3 to 6 months (which turned into 1 to 2) I didn't believe it. When they said he had 1 to 2 weeks (which was about 1) I didn't believe it. That day I didn't believe. He looked fine and acted fine even though his back hurt (spread of pelvic tumor to spine). I thought he was fine. He just slept a lot. I won't give you the details of that day because I don't think you would want to know. I miss him. Angie PS I'll try to send you the information on vitamin C this week.

I'm glad to hear from you....sorry you didn't enjoy yourself but I can't say I wouldn've expected anything else. . .where did you go ? we came to the U.S on Ryan's foundation trip . . to 'Give the Kids the world' village in Kissimee,Florida. . Ryan was just out of his 6 month cyle of chemo and was really 'spaced' out but the other kids had a great time. . nice memories were made which hopefully they'll look back on in years to come . . . Jef sounds like a double of my Ryan, a Mummies boy . . not in a sissy way in a loving way, always protective . . Ryan & I have always been very close. . the bond between a mother and a sick child is unbelievably strong. . . the natural instinct to PROTECT your child is so powerful, you go through it all with them . . wishing it were you not them. . .feeling so so helpless as there is nothing you can do . . . only be there ! ! I don't think I believe in God . . then I think God only takes the 'special ones' & theres a contridiction in my believes. . . I wish you could visit us too! I feel no one else really understands what I'm going through. . . everyone try's to say the right thing but they haven't a clue. . . Ryan's been really unwell since Saturday...the tumours have almost doubled in size from this time last week. .he's been in a lot of pain. . . did the 110 mile round trip to Glasgow to the Hospital yesterday, an emergency visit to his Oncologist, asked why he can't have radio-therapy or oral chemo to keep these things at bay....he said he could but it would jeapordise Ryan's place on the trial. . the patient has got to have a treamtment free period before starting. . I don't know what we should do? ? . .it doesn't start for another 4 weeks yet. . God only knows what's going to happen by then. .. so we're home again with all sorts of tablets....its 8.15am here now . . kids are off to school and the house is so quiet. . Ryan is in bed sleeping (well I hope he's sleeping) don't want to look incase he is and I wake hime, then he'll tick me off. . tell me to stop fussing ! . . . . . I wish I could do something to help you, to ease your pain in some way . . . hope my rambling on about Ryan isn't making things worse for you . . . what colour were/are Jef's hair & eyes ? . . .Ryan's got dark brown hair with beatiful big brown eyes. . . he's so so handsome(bet Jef was too) . . .even though the ES has made him really thin he's still chased by all the girls. . . he says he hasn't got time for girls and if he did they would need to come with a handbook & a radar !. . . . . Going to let you go now as I could type all day.....gives me something to do other than worry. . . take care Karen & Ryan X C

Hi again Angie (its 2pm here now . . Ryan's in bed on his laptop) Did Jef ever have a sports injury or a bad fracture? the reason I ask is that when Ryan 1st got ES in March 2003 I searched the web day & night for information....spoke to some parents who's kids (younger) had ES and quite a few had in prior years had injuries of that sort. . . Ryan fell whilst running on 15th August 1990 (2 mths before his 14th birth) he broke his neck in 2 places, paralazed from the neck down for 3 months, we were told he'd never move his arms again never mind walk . . but he proved them all wrong and came home in December of that year walking, looks a bit like he's had a mild stroke on his right side. .2 1/2yrs later he was struck with Ewings PNET. . .I've always believed that the trauma of the broken neck at that time in his life when his body was changing and growing to a young man is what caused the ES, just wondered if Jef had suffered any broken bones X