Honored Kid

Chloe Rose H.

Age 13
Chloe Rose H. Kid Photo

Location

Kingston, NY, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

July 2013

Status

Tumor Stable

Treated At

Memorial Sloan Kettering Cancer Center Johns Hopkins All Children's Hospital

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My Story

Our sweet girl was diagnosed in July of 2013 with an atypical choroid plexus papilloma.  Typically, this type of brain tumor is surgically removed and then frequently monitored, but requires no further treatment.  Unfortunately for Chloe, her tumor had invaded her brain stem in "finger like" growths so her surgical team was able to remove about 90% of it.  She endured 16 rounds of chemotherapy over the course of 13 months.  Due to her young age and residual tumor location, radiation was not recommended.  Her tumor has remained stable throughout treatment and she is undergoing frequent MRIs to be sure it remains stable.  
Nothing can prepare you to hear that your child has a brain tumor or cancer - you can’t wrap your head around it.  Over 5 years later and it still feels like an out-of body experience. Our number one priority is ALWAYS that Chloe and her younger brother are well-cared for and as happy as can be. Our biggest hope in life is that this tumor is dead and never grows and causes her no other problems. The truth is, we have no way of knowing what’s in store, much like every other cancer survivor. You're left always looking over your shoulder and are never without worry. We are a few years out from the end of her treatment and we are still working to figure out our “new normal” - one where we will never be able to take our children’s health for granted.  So far she shows no deficiencies or long term effects from the harsh chemotherapy and surgery but these can pop up at any point in her life and so she is frequently tested and monitored.   Our sweet girl is an inspiration to us everyday - she has endured so much pain, anxiety and fear and still has a smile on her face and a bounce in her step. She has a lot to work through as a result of her treatments and trauma and a lifetime of pokes and tests and things no one, grown or little, should have to think or worry about.  

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