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belindaleen
Posts:1
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Posted:04/16/2008 12:29 PM |
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Hi,
Just wanted to introduce myself. My name is Belinda, i am from Australia and have a 12 month old son recently diagnosed with a rhabdoid tumor in the liver and also the lungs. We have started chemo, about to undergo 2nd round tomorrow. So far no changes but he has been so much happier in the last week than he had for a long time. Looking forward to hearing your stories and getting lots of information from you all.
Kind wishes
Belinda 
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Tracy
Posts:40
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Posted:04/17/2008 2:11 AM |
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Hi Belinda;
Just wanted to welcome you to the site and to say that I am so very sorry that rhabdoid has entered your life. I hope that through this site you can find some support and answers to some of your questions.
Sending prayers to your family.
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jonathansmommy
Posts:3
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Posted:04/19/2008 1:42 AM |
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hi my name is jessica and my stepson was diagnosed with what the doctors thought was whils tumors march 5, 2008. Now on april 16, 2008 they said he has rhabdoid tumors. they are on both kidneys, lungs, liver, lymphondes in his abdomen and on his left testicle. they removed his testicle on wednesday as well as the tumor. he started the ICE chemo and we are all so scared. he is 4.5 years old.
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Tracy
Posts:40
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Posted:04/19/2008 3:53 AM |
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Hi Jessica;
I am so very sorry to hear about your stepson, I know how scary this road can and will be. Unfortuantely my baby girl did not survive the battle with rhabdoid but there are children out there that have. So as hard as it may seem at times and trust me it will seem impossible at times, hold onto hope and never lose faith. I hope that some of the surving children's stories will help to give you strength. What is your stepson's name? I will include your family in my prayers, please keep us informed as to how he is doing.
Your stepson has several tumors, how long was he showing symptoms before his diagnosis?
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jonathansmommy
Posts:3
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Posted:04/19/2008 11:33 PM |
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jonathan had no symptoms before he was diagnosed. all of a sudden on march 2, 2008 i went to change his pullup and i found blood and a blood clot. so we were sent to ft.st. john b.c. from ft nelson b.c for an ultrasound. from there they sent us here to edmonton ab. we were told at first that he had whilms tumors. we started the chemo journey and no real changes for the better.things started to get worse. they managed to do a small biopsy and found he has rhabdiod tumors. today jonathan is having a hard time breathing because they think he has fluid on his lungs. so now he is in the ICU. they have him on so many fluids and he is now on a feeding tube. today they are going to place a tube in his cheast to help drain the fluids. we have been told that not many cases have been reported. we are keeping our fingures crosses and hoping for the best even on the worst of days. he told me that everyone needs to keep their happy face on and stay happy. we try to even after we hear all the bad news.
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Tracy
Posts:40
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Posted:04/20/2008 12:41 AM |
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In this fight that is all that you can do Jessica. Our children sense what we feel so for their sakes even though we want to just fall apart at times, we have to really hold it together for them. One minute at a time is all you can do. The site has a location map of the families affected by this monster. When I first visited this site about a year ago there were several cases but I have watched it expand a lot over the past 12+ months. It is so sad and heart wrenching that any of these children have to suffer this horrible cancer. Thanks for the update. Here is my email address. Sending hugs and prayers,
Tracy
autumn@usa2net.net
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Kelly
Posts:14
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Posted:04/21/2008 6:17 AM |
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Hi Belinda and Jessica,
Welcome to the group. I am sorry that you have reason to join us.
If you have questions about treatment or the cancer journey as a whole, please feel free to contact me via Jackson's site. (Jackson is 2+ years post treatment for Rhabdoid Tumor of the Kidney).
Take care,
Kelly
Jackson's mom
www.caringbridge.org/visit/actionjacksonforebaugh
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jonathansmommy
Posts:3
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Posted:05/12/2008 10:23 PM |
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So we found out that Jonathan doesnt have rhabdoid tumors he has anaplactic whilms tumors. we also found out that the chemo is not working and that he may only have a few weeks left. he was such a strong happy little boy. even now he is fighting to the end. thank you all
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peggyrapp
Posts:8
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Posted:05/12/2008 11:19 PM |
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Jessica,
I'm so sorry to hear this. I'll be praying that the doctors are wrong. Until then hold him, touch him, talk to him, and if you can find room curl up in the bed with him.
Peggy (mom to angel Megan)
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WilliamsMom
Posts:3
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Posted:05/18/2008 5:05 AM |
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Hi all.
I wrote awhile back. My son has rhabdoid of the liver as well. He was originally diagnosed in October with Stage 4 hepatoblastoma with lung mets and then in January they changed the diagnoses to a rhabdoid of the liver. They started him off on the hepatoblastoma protocol, dox, ifosfimide, and cisplatin. They have now, since he reached the max of dox, changed him over to ICE. This is going to be his 11th round of chemo coming up and his 4th of the ICE. On every scan the tumor is shrinking. We even thought he was ready to have his liver resected until they told us otherwise. I believe in my son, but I guess thats all you can do is have faith, hope, and believe. He is my warrior, and I love him and I will be here through sickness and health (like I am married) till the end. he is all I have, and I couldn't ask for more, I love him more than anyone or thing in this world and couldn't imagine where I would be without him. I am sure you all feel the same.
Rhabdoids of the liver are very uncommon. I wish there was more information regarding them.
Anyways, nice to meet you all, take care.
Melissa (Williams Mom)
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