On Twitter and Instagram: @zheatherchamp

e-mail:  zheatherchamp [AT] gmail [DOT] com


11 thoughts on “Contact

  1. My 8 year old daughter likely has a tumor that the Doctor is describing as lhermitte-duclos-disease. Can we please contact you for advice?

  2. Is there a number my wife and I can reach you at or would you mind to give us your email address so we can email you our contact information.

    Here is our back ground story. For about 10 days our 8 year old girl, Norah, has headaches and intermittent upset stomachs. We along with our pediatrician thought something else was wrong. Thankfully, the recommended an MRI. The MRI revealed that Norah has hydrocephalus and a large tumor in her cerebellum close to her brain stem. Initially, we were told that we were going to the University of Iowa for emergency surgery. After that, the story changed every several hours as we were passed from doctor to doctor and other areas of the hospital.

    Once we met the Staff Neurologist who is assigned to Norah, we found that she most likely has Dysplastic Gangliocytoma also known as Lhermitte-Duclos disease. They are saying there is really no boundary to the tumor, and it is hard to tell where the tumor ends and the brain begins. In the case of surgery it would appear as normal brain matter and can really only be identified as a tumor under a microscope or in an MRI. Due to this, the size, and the location in the brain, it is impossible to completely remove the tumor. The Doctor will meet with us Monday night to decide what the next steps are. The tumor is blocking the flow of Cerebral fluid and causing high pressure in her brain. This has to be dealt with. They will somehow relieve the pressure and may perform the biopsy. The biopsy is dangerous itself and sometimes has undesirable side effects.

    After the biopsy, if the doctor is correct, there is really no other treatment other than keeping the cranial pressure low and dealing with any further damage the tumor causes.

    We want to learn as much about LDD as possible. We are trying to find if there are any other resources we should put in our doctor’s hand or if there are an other specialist we should have evaluate her MRI and/or condition.

    Norah is an amazing little girl. We are really blessed, she is completely unaffected by all of this so far. We just don’t know what to expect next and how to give her the best and most help.

    Gary and Tiffany

  3. OMGosh. I tried your way and it worked. I had been doing something similar but not exactly the same for months and it had been working and then it stopped working for some reason. I just tried your method and it worked. Wow! I am a dork. I will use your technique now. You are a genuis. Thank you. The Word Press people could not even figure it out though…. so weird. They said what I did looked right but it did not work. They even tried to fix it and it wouldn’t work but your way worked Wow! You are a genuis. Thank you so much. I am going to erase that post as now I am very embarrassed for being so stupid…. ouch. Your blog is Hope for Heather… maybe there is still hope for me… Hope for Sue hahaha… I commented here because I am deleted that one post from my blog as I am so embarrassed for my stupidity and errors of my my ways and I guess the error of the Word Press Helpers too. I guess they should have asked Heather. Thank you so very much for your way help. Love and hugs, Sue I reallly knew I was not computer saavy…. but my incorrect way worked for a while… hmmmm… so strange…. Well anyway . Have a fabulous night.

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