Annabelle’s Story

Site created on September 19, 2005

Essentially, Annabelle is a happy, normal girl who turned 16 in February 2019. She was diagnosed with DIPG in September 2005. A biopsy years later showed the tumor(s) to be pontine pilocytic astrocytoma.  She is an absolute walking miracle. Conventional Medicine:We did radiation immediately. After that, Annabelle was in a clinical trial at the NIH in Bethesda, Maryland with Dr. Katherine Warren. Dr. Warren is amazing and has always been able to answer my crazy questions off the top of her head. We have been through a couple of clinical trials at St. Jude's in Memphis.  Carboplatin, Vincristine, and Temozolomide, and most recently a Kinase inhibitor.Homeopathic Remedies: We give Annabelle Ruta Graveolens 6c and Calcarea Phosphorica 3x. The dosage I found on the internet when this all started. Dr. Banerji in India. I never actually spoke to him, I just ripped someone else's prescription off of their web page. I tried to get in touch with him, but to no avail. I didn't try overly hard. Dr. Warren is telling other patients about this. She says, "It can't hurt!" We give her 3 tablets/pellets 3xday of each. There is only one size, I suppose. they are about as big around as a bb.ruta=  calc= (Courtesy of Mimi)Life Guard, Jr. by the Starlight company (Courtesy of Mimi) We don't really do diet modification. It just doesn't work with our lifestyle... We probably eat at McDonald's as much as anyone. There was a time in the very beginning that we gave her a "Miracle Cure" from a Bishop in Mexico that Nanny found. It had Aloe Vera blended up with honey and a tiny bit of whiskey. It tasted HORRIBLE and I don't think much of it went down.

Newest Update

Journal entry by Kelly Crowson

We saw Dr. Bowers yesterday and discussed pathology results and a plan moving forward.

Annabelle's diagnosis of a pilocytic astrocytoma was confirmed,  and, more specifically, the tumor was found to have a genetic alteration called KIAA1549:BRAF fusion.

The plan moving forward is to treat with an oral MEK inhibitor called Trametinib.  She will swallow capsules once per day.  We will start with one, and depending on how she tolerates it, we will step up to three.  The biggest concern about side effects right now is an acne-like rash.  There are also eye health concerns and heart concerns.  Her heart and eyes will be monitored while she is on Trametinib.  She will have an echo-cardiogram coming up soon to set a baseline.  She had an ophthalmologist exam after we got back from Memphis, so we should be able to use those records for the baseline on her eyes.  If she has negative changes with her heart or eyes, we will stop the medication and the changes are expected to resolve.

Overall, I am relieved with the pathology results and having a plan in place.  Thank you all so very much for your continued love and prayers!
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