Cyclic Neutropenia

[graciesmom2009]

Does anyone know of anyone who has this condition? Grace is having a test next week to see if she has this genetic disorder. Thanks.

[ShannanAjluni]

I don't, but we have Chemo on Thursday, I can ask our hemonc about it, if you'd like?

[graciesmom2009]

Could you? I have to call ours tomorrow, they didnt really explain much today. Ugh, this is just so frustrating. So far in this to have another road bump.

[ShannanAjluni]

No prob!

[graciesmom2009]

Thanks. We have been so blessed with such a smooth process through her treatment and this. Just keep praying and leave it to God to heal her. :)

[ShannanAjluni]

That's all you can do. I'm glad that your process has been smooth.

[A-L-mommy]

Hi Graces Mom! I am a mom like you who has a daughter with neutropenia for 4 years now.  Just know there is help, information and support for your family and your daughter. First let me tell you that it is a very rare condition, when it does not come with cancer treatment. It is so rare that many in the medical community do not really know much about it. They can help you to learn more in order to help the physician who will be treating your daughter.  There is a medicine for it, Nupogen, that may be used during the times that she has neutropenia in the month, as in cyclic neutropenia, it changes from normal to not on a cycular basis.  Just know that you have support form me and other in  a special group (familes and medical) for children with Neutropenia!  The support group is called Natuional Neutropenia Network (NNN) Their website is http://www.neutropenianet.org/. Also you can call them , be referred to special physician who specialize in neutropenia and can work with your local physician. Also you can ask other parents, like yourself who have first hand exprience with this very rare disease. Please feel free to contact me and I answer your questions and also refer you to professionals who can answer your questions. 

Gracies is a very lucky little girl to have such an active mommy who seeks out information for her health!

[Grandma1418]

Yes, my daughter was diagnosed with Cyclical Neutropenia over 5 years ago.  Her Hopkins hospital hematologist connected her with an incredible program out of University of Washington in Seattle, The Severe Chronic Neutropenia International Registry.  They enrolled her in a study and send her the meds necessary to control her neutropenia.  She receives neupogen for free and injects daily.  With this treatment, she leads a perfectly normal life and a year ago gave birth to twin boys.  Please feel free to contact me if you want more information.

Good luck!

[ChrissyRissy]

Hi ladies..........my daughter is 19 months....she has not been diagnosed with cancer....but we found out today that her neutrphils have been low the past few months...they are doing more testing, but we have to wait about a week for results....they said as of right now it seems she has "neutropenia" I am scared she has cancer :[

Would you ladies mind telling me any signs "early signs" of cancer that i can be on the look our for, especially leukemia. And what cancer lab results look like.....You mommies are such strong woman....I am a nervous wreck..any help will do!