Savvy Giving by Design

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In August of 2018, 12 year-old Keely was diagnosed with osteosarcoma after excruciating leg pain led doctors to discover a 4.5" tumor in her upper tibia. Keely had always been an active, talented, and athletic girl who was involved in a multitude of activities and was looking forward to starting 7th grade.

Keely's treatment plan has involved multiple rounds of chemotherapy, surgery, and additional chemotherapy. Each time she received the chemo, she was admitted to the hospital for multiple days so that doctors could monitor her health before releasing her to go home. Since beginning chemo, Keely has endured multiple difficult side-effects, including significant weight loss, mouth sores, hair loss, and high fevers.

Then we got some more scary news. Gabby had a baseline MIBG scan that uses radioactive Iodine dye to essentially “light up” all of the areas of neuroblastoma in her body. Based on that scan, radiologists assign a curie score (out of a max of 30) to somewhat quantify the amount and extent of disease throughout the patient’s body. Gabby was assigned a score of 29/30… practically the highest score possible, meaning the neuroblastoma had spread throughout her entire body. As if that wasn’t scary enough, we then got the results of her urine test where they test for neuroblastoma cancer markers (catecholamines) in the urine. The level of catecholamines in Gabby’s urine was so high, even for neuroblastoma patients, that they had to repeatedly dilute and rerun it just to get it on scale. Her urine tests came back with results in the 650-725 range, when a normal level is generally less than 10 and an average level for neuroblastoma patients is about 100. This news was terrifying, and it still keeps us up at night.

We’ve been told that these initial numbers aren’t as important as the numbers after her induction chemo when it comes to prognosis. But when we are starting at such extremely elevated values and trying to get down to 0, it seems very daunting. We have searched and searched for success stories that start out like ours, just to have some hope to cling to. The odds of our fight are scary,  with only 40-50% chance of surviving 5 years. And even if we do make it to remission she has a high chance of having severe,  lifelong health effects from the very toxic and aggressive treatment. 

For now, we are fighting this neuroblastoma with everything we’ve got. Our beautiful daughter is strong, and resilient. Her smile throughout everything she's been through is inspirational. There is hope. Thank you to everyone in this community for lifting us up and rooting for our beautiful daughter. 


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