Members kalimac Posted March 13, 2008 Members Report Share Posted March 13, 2008 My precious 20 year old son died from a rare and aggressive type of sarcoma called desmoplastic small round cell tumor. It is a disease that predominately strikes boys and young adults, although we know girls with it too. It is a devastating diagnosis because there are few treatment options. The cancer grows uninhibited and undetected within the soft tissues of the abdominal cavity . . some tumors can reach enormous sizes before detection. There are a whole category of small round cell childhood tumors . . desmoplastic is one of the more rare kind and is in the same cell type as Ewings sarcoma (bone) and Rhabdomyosarcoma (muscle). Needless to say our son was a Junior in high school when diagnosed. We were traumatized at the time . . it was just horrific. Nate had been a healthy, normal kid playing basketball in school and working weekends. He was the type of kid that never gave us one shred of trouble. He was the youngest of three and just a total joy for us. We loved being with him and he never seemed to mind us considering that he was a teenager! He never was the best student, but he was always optimistic and could point out that,. yes, maybe he didn't do so well in Math but look how great he did in Music. Since he was our third child we didn't really care that much about grades . . we just enjoyed him too much.In January of 2005 he began complaining about not being able to keep up with the other boys in basketball . . we thought he had the flu. He also mentioned something was different about his stomach . . but in all honesty it just didn't register with me. Sometimes I feel guilty about that . . why didn't I pursue it more . . maybe it would have made a difference. He finally saw his doctor in February . . who also seemed perplexed. A routine blood test revealed low iron and a possible thyroid condition. So we set up an appointment for the first of March with a Thyroid specialist. The horror continued though . . by late February we knew something was seriously, seriously wrong . . especially when my son asked me to check something out that was strange . . his heart was now beating up by his neck. We finally saw the specialist . .a two hour drive for us . . he took one look at my son . . and said that there is more than just a thyroid condition and sent us two hours home to our regular pediatrician. Our doctor was mortified . .still not telling us what was wrong. We ended up in the local emergency room with him and no one would let us leave or tell us what was happening. Our doctor arranged for him to be sent to a Childrens Hospital . . by than we kept hearing the words 'cancer' . . still not too much information. We arrived at 11:00 at night to the Children's Hospital and within the first examination of our son we started hearing cancer, cancer, cancer. We tried to stay brave for our son, but my husband and I were wrecks by that point. A CT confirmed our worst fears . . our son was stage IV . . filled with tumors in the abdominal cavity . . some as large as volley balls . . lymph node involvement, pelvis, spleen, liver, diaphragm . . no one had ever seen anything like it. We were horrified beyond belief.And, that was the start of a three year nightmare . . a daily terror that we would lose him . . we were never given that much hope to begin with. But our son surprised everyone .. even his doctors . . and underwent nine months of high dose chemotherapy and three major surgeries. The entire time he was optimistic and just as joyful for us as he had ever been. We held close all the days we had with him ..knowing that at any minute it might be the last . . there were no guarantees . . none because his cancer is so rare that there is no known protocol treatment . . all treatment is experimental. For three years we did this . . hoping . . always maintaining hope . . until this Christmas.Nate always was healthy for a cancer patient with such an aggressive disease. But his luck ran out . . by Christmas and New Years of this year he was in extreme pain and than he went into respiratory distress in his doctors office. He was hospitalized for three weeks . . and again, surprised his doctors by rallying and started to recover from pneumonia in his lungs. Again . . this disease is so rapid . . that . . due to his pain and the pneumonia he had gone off a chemotherapy . . and was waiting to go on another experimental chemo . . but he didn't make it. The cancer grew uncontrollably and spread throughout his body once again. He was in alot of pain and under a lot of heavy duty medication (fentenyl pump with bolus). We had no choice but to bring him home on hospice care. He was mobile most of this time and some of his comments . . so precious to me now . . (he asked me once "Am I an angel yet?"). Too much to tell really. He died in my arms eleven days after coming home from the hospital. My baby . . we brought him into the world . . and we helped him leave. I gave him permission to die . . while the whole time I was screaming inside for him to stay with us.I am sorry for the long story . . cancer is a long, long process . . the long good bye. It has now been a month and I miss him so, so much. I am glad he is not suffering . . but now we are! Thanks for listening . . it helps me just to write this all out. I just realized today that the fear we have been living with for three years . . is now gone . . replaced with the grief of loss .. but the fear is gone. Link to comment Share on other sites More sharing options...
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