Addison’s Story

Site created on March 20, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Anthony Varns

As some of you have seen, there have been some medical issues with Addison.  We wanted to take some time to process the news and inform our families and set up a treatment plan before sharing this on Facebook. 

Addison has been complaining about frequent headaches since the beginning of the year. On January 27th we noticed her left eye did not look fully centered. We took her to the pediatrician the following day who checked her vitals and said “everything looked fine” but was concerned about the headaches so they ordered a CT Scan.  CT scan was scheduled for January 30th and by this time her eye had turned more inward. By February 5th it was completely turned in. CT Scan results came back normal so her pediatrician referred us to an ophthalmologist which we saw on February 12th. Her eyesight was 20/20 and her optic nerve looked fine so he referred us to a neurologist and ordered us an MRI. The MRI was done on March 5th.  What should have been an hour MRI turned into 4 hrs.  

Our worst fear came true!  They found a tumor on her brain stem. This tumor is called DIPG (Diffuse Intrinsic Pontine Glioma). This is a very rare tumor with no known cause and no known cure.  It sits at the top of the brain stem in the pons area of the brain where a lot of cranial wiring is routed through. It also interweaves with good tissue so that it is impossible to manually remove it. The prognosis on this tumor is that it has a 0% survival rate and patients are not given a lot of time to live after they are diagnosed. We were told to go home and make memories since we had about 9 to 18 months.  

What?!?  That is NOT ok with us!!! We will not stop fighting. Our baby girl has soooo much life and energy and is full of nothing but kindness and love so we are currently looking into any and all avenues of treatment.  Today, we signed her up for a clinical trial at Cincinnati Children’s Hospital. The standard method of care for this is a 30 treatment course of directed radiation to the tumor. The clinical trial will add a radiation enhancing pill (8 pills to be exact but all of the same drug) to the treatment to help further aid the radiation in shrinking the tumor and then she will continue to take the pills after to help keep the tumor from growing again.  This all begins next Monday, March 25th. We will be staying in Cincinnati for 6 to 7 weeks for the duration of the radiation and then continuing the pill treatments at home after that with a monthly trip to Cincinnati and weekly trips to Riley for lab work. 

We are now putting this in Gods hands knowing that we are doing everything we can and He is the ultimate healer. Our daughter was not born with an expiration date on her foot. We will continue to fight and we know how strong she is. We will also be researching other clinical trials to begin once radiation is done. There have been a few cases of long term survivors with DIPG so we are hopeful that with the added emphasis put into DIPG research that the cure will be found soon. 

Please keep our family and Addison in your prayers as we start the journey of removing/shrinking the cancer.  We want to thank everyone that already knows for all the love, prayers, support, meals, goody bags, etc. It has amazed us with how much Addison has touched all of you. We love you all!! 
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