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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Sun May 29, 2011, 10:00 PM
IhaveAA.AAdoesnothaveme IhaveAA.AAdoesnothaveme is offline
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Join Date: May 2011
Location: Guelph
Posts: 8
Bone marrow transplant preparation

I am a 15 year old girl. Recently my Aplastic Anemia has become very severe and my parents and doctors have decided that a bone marrow transplant will be the best treatment approach. On June 29th I will be admitted to sickkids to start a preparative regimen. Do any other teenagers have any ideas of what I should do during isolation to make time pass faster? Also, will friends be allowed to visit during isolation as I'm not quite sure about the exact restrictions in isolation. How will I feel during to procedure? I know these questions feel stupid but I am very scared about the procedure!
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  #2  
Old Sun May 29, 2011, 10:32 PM
riccd2001 riccd2001 is offline
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Join Date: Aug 2010
Location: Burlington,Ontario,Canada
Posts: 186
Sorry to hear your condition has become severe. Sick Kids is a true Centre of Excellence in Ontario and I'm sure that they will soon put you at ease. Don't be afraid to ask your questions here and when your treatment begins. There's no such thing as a stupid question. This is a great forum for all ages.

During my times in hospital I found my favourite music (MP3) really gave me relief and helped get my mind off the medical reasons for being there. Maybe that will help you a bit too.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #3  
Old Mon May 30, 2011, 07:49 AM
edithr edithr is offline
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Join Date: Feb 2011
Location: 30 mi West of Cleveland
Posts: 86
Dear I love AA. My son is 15 and has SAA, although his drs are not talking transplant yet, I can only try to imagine him going thru this.

First, I want to give you a hug.

Do you have a laptop? If your friends can't visit, maybe you can Skype them? You can always post here, we'll all be happy to "talk" to you! Ask your friends/family to start saving magazines and paperback books for you. Do you have lots of pictures - maybe you could work on a scrapbook? Do you like to write? Ever heard of nanowrimo? It's where you write a 50,000 word novel in one month. It takes place in November, but you could do it when you're up there. Do you like to learn? Maybe you could take it upon yourself to learn sign language?

These are some suggestions off the top of my head, I will ask Eric if he has ideas and let you know.

You are in my thoughts and prayers.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #4  
Old Mon May 30, 2011, 09:01 AM
evansmom evansmom is offline
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Join Date: Nov 2007
Location: Ontario, Canada
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Hi there, just wanted to let you know that my son Evan was a severe AA patient at the 3F clinic at Mac and then went on to have a successful BMT at SickKids. The nurses and doctors are wonderful in both centres and you'll continue to receive the best possible care there.
I would suggest a lap top would be your best source of entertainment as SickKids has free wi-fi available plus you can watch dvd's etc.
You'll be in strict isolation from transplant day to engraftment day but I would be cautious about having visitors at any time during your time as an inpatient. Being without physical contact of friends for a few months is a small price to pay to help ensure you don't pick up any unwanted viruses and fungii which could severely impact your recovery.
Evan's Caringbridge site is linked below. I blogged with much detail from start to finish of his journey with AA/BMT. Feel free to visit.

Best wishes,
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #5  
Old Mon May 30, 2011, 01:43 PM
Lbrown Lbrown is offline
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Join Date: Oct 2009
Posts: 361
I can't really help but just wanted to say I really like your login name!

Deb
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  #6  
Old Fri Jun 24, 2011, 05:53 AM
emmajennions emmajennions is offline
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Join Date: Feb 2010
Location: Portsmouth
Posts: 5
me too...

Hiya, I hope your ok and the bmt isnt going too bad. I am being admitted on the 10th July for mine so we will be really close together and would love to keep each other updated!! So your def not alone I have started a blog to keep my family and friend updated while im in and to hopefully help people in the same situation as us.. emmasbmt.blogspot.com Feel free to add me and if you have one too let me know!! Thinking of you xxx
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  #7  
Old Fri Jun 24, 2011, 08:34 AM
Janire Janire is offline
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Join Date: Apr 2011
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Hi, Emma!!
I will follow your blog too if you dont mind!
I have another one but it's in spanish....I dont know if you know my language! anemiaaplasica@blogspot.com
I think it is important to share our experiences to guide other people same experiences in the future....
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Janire, age 31, diagnosed AA september 2007; treated with ATG november 2007, no response; 2xATG april 2008, total remission..... RELAPSE and 3xATG in april 2011....now waiting for a response... not always easy. Http://anemiaaplasica.blogspot.com
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