The Leukemia & Lymphoma Society - Fighting Blood Cancers
5 Replies Last post: Nov 7, 2009 7:58 PM by nana  
aboutthewin   51 posts since
May 20, 2009
Currently Being Moderated

Nov 7, 2009 11:36 AM

What are the most valuable resources you've found?

I've noticed, sadly, a lot of new names on the boards lately, and thought it might be helpful if we all shared the resources we've found that have been most helpful to us. These can be things we discovered early on, or things we found later and wished we had found earlier!

 

Other than this board and our clinic, these have been my go-to resources:

 

Free books from the Candlelighters Association -- http://http://www.candlelighters.org/Information/Resources/Books/tabid/287/Default.aspx

 

From Livestrong, the ebook "Learning and Living with Cancer: Advocating for Your Child's educational needs" -- http://http://www.leukemia-lymphoma.org/attachments/National/br_1139926622.pdf

 

Scott Hamilton supported site all about chemo that explains types of chemo and side effects of different chemos in easy-to-understand language (not specific to childhood cancer, but still good) -

http://www.chemocare.com

 

Please share other good resources when you can -- thanks everyone!

 

Kristen

www.aboutthewin.wordpress.com

mom23   69 posts since
Apr 3, 2009
Currently Being Moderated
1. Nov 7, 2009 12:38 PM in response to: aboutthewin
Re: What are the most valuable resources you've found?

Great idea Kristen!  The book Childhood Leukemia by Nancy Keene has been a great resource.  I also went to the different website of the well known hospitals.  St. Jude,

MD Anderson, Sloane Kettering, CHOP Childrens Hospital of Philadelphia etc.  They all have some cancer information on their sites.  Also the National Cancer Institute website cancer.gov.  Of course...our doctors and nurses have always been able to answer any question I bring up....they have been wonderful.

Tonya   223 posts since
Jun 17, 2009
Currently Being Moderated
2. Nov 7, 2009 12:54 PM in response to: aboutthewin
Re: What are the most valuable resources you've found?

Here's mine (well really from the suggestions of others here):

 

1)  Ask for a copy of the FULL protocol (mine is 166 pages, and they said I was the only one to ever ask for it at clinic--but the information in it is so valuable).

 

2)  During induction, the social worker asked if we would like to have someone who's been there contact me as a support, and we said yes.  That person was Connie (Tom's Mom on this board), and she has been my support from day one.  She has been a tremendous help to our family.  Thank you Connie

 

3)  This board is definitely THE BEST!

 

Tonya

doublewishmom   118 posts since
Aug 11, 2009
Currently Being Moderated
3. Nov 7, 2009 1:32 PM in response to: Tonya
Re: What are the most valuable resources you've found?

I also enjoyed Nancy Keene's book. Another place I have gone online 

is www.curesearch.org. That site has some great articles and resources.

 

A fun website is www.squirreltales.com. That's a site that has some 

info/stories for parents of steroidal kids to read.

 

And I agree with Tonya, this board has definitely topped my list.

 

doublewishmom

Djlawman   155 posts since
Apr 3, 2009
Currently Being Moderated
4. Nov 7, 2009 5:01 PM in response to: aboutthewin
Re: What are the most valuable resources you've found?

For those with kids with ALL, who want a pretty comprehensive explanation of most of the prognostic variables, etc., the National Cancer Insititute's information is pretty good:

 

http://www.cancer.gov/cancertopics/pdq/treatment/childALL/healthprofessional

 

A German website keeps the US's NCI information up to date on their website, and all on one page (which makes it much easier to do a search for a word to find  a topic, etc.) and it is located here:

 

http://www.meb.uni-bonn.de/cancer.gov/CDR0000062923.html#REF_46

 

These are written for health professionals (although I know that many of us FEEL like we know as much about leukemia as some of the health professionals after a few years) so they can be very difficult to slog through.  The summary also lays out that facts directly.

nana   160 posts since
Apr 3, 2009
Currently Being Moderated
5. Nov 7, 2009 7:58 PM in response to: aboutthewin
Re: What are the most valuable resources you've found?

I have read most if not all of the mentioned resources and have found them helpful.  For me, asking questions of everyone really helps.  I try to remember no question is too small or silly and just ask.  I ask nurses, doctors, people who have gone through cancer and of course people on this board and I usually ask them all the same questions to get many opinions.

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