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Medical Forum / Diseases and Disorders / Cancer / August 2005Just Paige
On March 2003 I ( presently 6, at diagnosis 4.5 )was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma. The 30 months leading up to this point we have been followed by Oncologists at Lucille Packard Children's Hospital in Palo Alto California. In a nutshell I was given Vincristine/Irinotecan, followed by (vincristine, actinomycin D, cyclophosphamide) over 12 months. During August 2003 I underwent Radiation treatement for a total of 25 treatments spaning 25 days. I received very severe burns from Radiation and was on a PCA pump for 2 weeks during the last week of radiation; I continued treatment while on the pump. During these 11 months the primary tumor ( 5cm/8cm next between the cheeks of my bottom ) shrank by 60%. During a CT Scan 3 mets were noted on her tail bone after shrinkage occured . A prior CT Scan found a met on her right fibula. Additionally it was determined that it had met. to my bone marrow. >From March 2004 through August 2004 tests at 6 wk intervals indicated I was in remission. Remission was a rocky boat and those 6 months were anything but enjoyable. In August 2004 a nodule shaped like 1/2 an egg was growing on my head above my left forehead. A CT Scan indicated no presence for tumor. A needle biopsy showed the result was positive for Rhabdo. Th mirror image of the egg was detected between the skull and the dura ( had not broken the dura ). Shortly after the Bone Scan August 2004 I began 13 cycles of alternating treatments; Efosfamide/Itoposide 5 days, then Vincristine/Doxirubicin/Cyclphosphamide for 3 days. I was told that treatment was for Control and not Cure. CT Scans in Sep 04,Oct 04 found mets to tail bone gone and fibula gone. Bone Marrow Biopsy and Aspirate were also clear of Rhabdo cells. I may be eligible for a Study now involving a drug that prevents the tumor from gaining access to a blood supply and hope to get 2 more months. Here it is the end of August. I start 1st Grade next Monday. I'm starting to get headaches and I have severe mood swings. The tumor is on the frontal lobe of my brain, symetric between both lobes. The Scans a couple of weeks ago show that the tumor has broken the brain blood barrier and it looks like it is in 10-15 % of my brain. If you want to read about me, go here -> http://poodlepaigee.blogspot.com love, Paige > On March 2003 I ( presently 6, at diagnosis 4.5 )was diagnosed with > Stage 4 Alveolar Rhabdomyosarcoma. The 30 months leading up to this > point we have been followed by Oncologists at Lucille Packard > Children's Hospital in Palo Alto California. ... > If you want to read about me, go here -> > > http://poodlepaigee.blogspot.com > > love, > Paige At the risk of appearing incompassionate, let me say I find the first person writing about a six-year-old to be somewhat disconcerting. Please write as yourself regarding your child, i.e. she, her rather than I, me. And let her write for herself where she can, we can handle it. That way when we respond to your questions, we can answer appropriately, and when we respond to her questions we can answer appropriately also. You will find excellant advise from Steph and j, and handholding and hugs from the rest of us. Having said that, Paige (and c) we wish you comfort and health. mness215@comcast.net said... > At the risk of appearing incompassionate, let me say I find the first person > writing about a six-year-old to be somewhat disconcerting. I thought that as well, since there was absolutely no way the child could possibly have written any of that herself. I'd like to see her words in print, but they'd have to be /her/ words not an adult's interpretation of them.  SignatureI try to be a good example to my children, but they just see me as a dire warning. Almost as compassionate as this response http://groups.google.com/group/alt.support.cancer/browse_thread/thread/b5f4c192d 45a1cf2/be6bd60c72887212?q=dolphin&rnum=2#be6bd60c72887212 Why not, "I'm so sorry for what you are going through". That would have been compassionate. There is no sympathy in this world. Why would I have expected anything but responses like your two and the link I listed, at least his hostility wasn't masked in pseudo sympathy. He had the courage to go for blood and tell be to F$%& off. I guess that didn't warrant a comment. What is it about this story that falls on deaf ears even in a group for Cancer Support. Is it because it's a child. Or because it couldn't be true because I wrote it as if it were Paige writing. Both of you are good with criticism. Has either of you been looking down the barrel of a gun ready to take your child's life. Shame, shame. Support Groups, News Group, it doesn't matter. People can dish out plenty of criticism, but when it comes to sympathy that's an entirely different story. > Almost as compassionate as this response > http://groups.google.com/group/alt.support.cancer/browse_thread/thread b5f4c192d45a1cf2/be6bd60c72887212?q=dolphin&rnum=2#be6bd60c72887212 (Do these google group message not make it to Usenet? I never see them) > Why not, "I'm so sorry for what you are going through". That would > have been compassionate. There is no sympathy in this world. You sell us short. There are many ways of providing support, and each of us has different capabilities and abilities. I am not sure what you were expecting. We have people here who have expert knowlege. We have people here who go through similar experiences. We have people here who are survivors and people making the last mile. If symapathy is all you want, you can get that too. Why > would I have expected anything but responses like your two and the link > I listed, at least his hostility wasn't masked in pseudo sympathy. He > had the courage to go for blood and tell be to F$%& off. I guess that > didn't warrant a comment. I still have not seen his comment or even know who he is. What is it about this story that falls on > deaf ears even in a group for Cancer Support. Is it because it's a > child. Or because it couldn't be true because I wrote it as if it were > Paige writing. Not that it could not be true. Maybe underlying the story I found it manipulative, but first and foremost I found it confusing and not straighforward. So why did you write it as if Paige was writing instead of yourself? >Both of you are good with criticism. Has either of you > been looking down the barrel of a gun ready to take your child's life. > Shame, shame. Shame on us? I can't believe you wrote that. Paige is nowhere near any consideration of euthanasia. And some of us never believe in it. Get couseling now! Your seeing hostility in our not liking your style and reflecting hostility back is but a drop in the bucket. Support Groups, News Group, it doesn't matter. People > can dish out plenty of criticism, but when it comes to sympathy that's > an entirely different story. Sympathy for Paige, yes, but sympathy for you will be much harder for me to recreate. mness215@comcast.net said... > > What is it about this story that falls on > > deaf ears even in a group for Cancer Support. Is it because it's a [quoted text clipped - 5 lines] > straighforward. So why did you write it as if Paige was writing instead of > yourself? I think the problem I had with it was that it was written in the first person singular as if autobiographical; yet it was obviously not the work of a young child. I don't have a problem with sympathising with a person of any age going through the cancer journey, but somehow the very adult and technical language purporting to be from a youngster grated more than somewhat. I honestly feel that if the original post had been written in the third person I would have reacted more positively. And as I said before, I *would* like to see Paige's own words describing her experiences - but they must be her own words and not someone else's. It's not a question of believability but rather of style. Please don't accuse me of being heartless either. As the mother of 5 children I think I've got more than a small idea of what it's like to be occasionally worried about one's offspring... SignatureEmily Clueless woman ! Having 5 children is nothing like watching your only child wither away. Knowing that within weeks she will be dead cannont be compared to the sniffles. In neither post did I ask for sympathy. I merely noted that neither of you were sympathetic. Even now, neither of you are sympathetic to my situation. Shame, shame, shame. At least you didn't profess to be Christian's ! > Knowing that within weeks she will be dead cannont > be compared to the sniffles. In neither post did I ask for sympathy. > I merely noted that neither of you were sympathetic. Even now, neither > of you are sympathetic to my situation. I'm very sorry about your daughter. Please don't start a flame war here. Obviously you're distressed and angry. Obviously they missed the point of your post. I cannot apologize for them; they have to do it themselves. If you want support, you'll get it. Please tell your daughter she's cute as a button and I love her outfit. Please give her a gentle hug for me. J What are your qualifications to be in this group slinging out criticism like this ? You obviously don't have children ... > You obviously don't have children ... For quite a while, back in 1998 - 2000, there was a lady here who posted about her daughter who had a brain tumour (I think discovered shortly after birth). She passed away at age 2. The lady was very good at supporting other parents. We're not had parents with children with cancer for quite a while. As a consequence, I've usually referred them to other resources.Sure, you may stay here, but you may decide you'll relate better with groups of other parents (whose kids have cancer). Another resource is alt.support.grief. I'm sure you'll find other parents of children who've passed away, there. I see someone misunderstood your post there, as well, but others may come along and be compassionate to you. Other resources: http://www.kidscancernetwork.org/grieving.html Tell us about Paige. Is she really going back to school next week? Is she excited about it? Share with us what makes Paige special. Each person is special in their own way. Do you have counselling service at a hospital where you and/or your partner can talk with others. The thought of losing such a beautiful child must be incredibly painful. Share with us. I can assure you there are caring people here. There's also an ACOR listserve for same with 200 subscribers http://www.acor.org/mailing.html?l=r There's also a hospice list for children http://www.acor.org/mailing.html?l=p Hospice Care for Children I'll leave you to decide where you think is best for you. J Excuse me Chris Ness but what are your qualifications ? What gives you the right to be slinging out criticism in this group ? It coudln't be because you have a dying child ! |
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