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Wilms tumor & my child

sweetjess3
Posts: 5
Joined: Jul 2013

Hello my 4 almost 5 year old daughter was diagnosed with Wilms tumor o. July 8th 2013. She went through 6 weeks if chemo and is scheduled for surgery next week. She was diagnosed with a bilateral Wilms tumor. Since chemo her very large kidney tumor has reduced in size by over 50% but the very small one in her right kidney has not responded. I am very scared for this surgery. I am curious what her scar is going to look like. I am also wondering what the long term effects, if any, are if the chemo. This is a very hard time. Any feedback would be appreciated.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It doesn't come any tougher than having a seriously ill child.  Have you searched on CSN at all?  You may find it helpful to do a word search (in the box provided by CSN - just above the list of threads) using the single word 'Wilms'.  This will bring up 16 threads on the subject and I believe you'll find some information that will be of help.

If you're not in one, finding a support group for parents of kids with Wilms tumor mayalso prove to be worthwhile.

sweetjess3
Posts: 5
Joined: Jul 2013

Thank u for the suggestions

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

This is something no child should be forced to endure. No parent either!  You both are in my heart and my prayers.

Where is she being treated? 

Michael

sweetjess3
Posts: 5
Joined: Jul 2013

She is being treated at Radys childrens hospital in San Diego.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

It is the Fred Hutchinson Cancer Research Center in Seattle.  One of their areas of research is Wilms Tumor.

I know the placve because my nephew was treated there some years ago. He is a leukemia survivor, I believe due largely to  their treatment. that has been a number of years however. He is now a 20 year survivor.

It may be worth checking out.

http://www.fhcrc.org/en.html

Good luck! Prayers,

Michael

sweetjess3
Posts: 5
Joined: Jul 2013

I will look into it thank u

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

This one is for trials underway for Wilms Tumors!  I hope it helps!

http://www.fhcrc.org/en/treatment/clinical-trials/list.95.html

Michael

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

Hi Sweetjess,

As a mother too my heart goes out to you and I can only imagine how you are feeling at the moment.  There is nothing worse in this world than a sick child and especially when its is your own.  What I will say to you is you must look after yourself too so you can be there and be strong for your little one.  I know that is probably the last thing on your mind but it is imperative that you do.  Your little one, you and your family are in my thoughts and prayers and please if you need to vent, cry, talk there are some lovely people here who may be able to help you travel this rough road.

 

eims x

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