We hope you had a great weekend and are enjoying Summer wherever you are. Today we are taking our blog to the East coast as we wrap our arms around a very special little boy, Sam Lee. I met Erin Benson (Sam's mom) about eight years as we worked in St. Paul, MN. I don't quite know when it happened but very shortly after we met, it was clear we were meant to be friends. Lots of laughter, many walks around the lakes, some wine tastings (hey, that was our job), a few job moves and finally a BIG move to Charleston, South Carolina - Erin and her husband Mike brought Sam into this world.
Cute as button and the center of their lives, Sam began to show this world a thing or two. I'm going to let a note from Erin and Mike tell the rest of his story. But today we are taking our community theme and looking for love and support for Sam, his parents and his two sisters (on the way.)
Erin & Mike if you read this - there are no words to say how much I wish we could take this from you. I think about you every day. All day. Know that you are loved.
Their family has started a rally page to help raise funds as they work to make life as enjoyable as they can while dealing with the unthinkable.
When our son, Sam, was 10 months old he was diagnosed with a rare genetic disorder called Ollier’s disease. The disorder mainly impacted Sam’s right leg and since his diagnosis he has had three surgeries to correct orthopedic issues caused by the disease. We knew that Sam had many more procedures to deal with in his future but we expected to enjoy the time in between surgeries watching him grow up and be the smart, handsome independent boy we love.
On July 26, 2013, we took Sam to the pediatrician. Over the past few weeks, he was smiling less frequently and laughing differently but we chalked that up to random toddler behavior. He was also having balance problems, but given that his most recent leg surgery for Ollier’s Disease was in mid-June, it seemed natural for it to take some time to regain his confidence. When his eyes began looking unfocused, we got worried. At noon, the pediatrician recommended we see a neurologist immediately. At 2pm, the neurologist admitted Sam to the hospital and recommended an MRI. At 5pm, Sam was sedated for an MRI. That night, we heard the worst: Sam has a large, inoperable, incurable brain tumor. (The technical condition is called Diffuse Intrinsic Pontine Glioma – DIPG).
On July 26, 2013, we took Sam to the pediatrician. Over the past few weeks, he was smiling less frequently and laughing differently but we chalked that up to random toddler behavior. He was also having balance problems, but given that his most recent leg surgery for Ollier’s Disease was in mid-June, it seemed natural for it to take some time to regain his confidence. When his eyes began looking unfocused, we got worried. At noon, the pediatrician recommended we see a neurologist immediately. At 2pm, the neurologist admitted Sam to the hospital and recommended an MRI. At 5pm, Sam was sedated for an MRI. That night, we heard the worst: Sam has a large, inoperable, incurable brain tumor. (The technical condition is called Diffuse Intrinsic Pontine Glioma – DIPG).
Sam has begun his radiation and chemotherapy treatments. These will continue for six weeks and, with any luck, will buy us some good time with Sam. We would like to spend our remaining time with Sam, likely less than a year, making every moment matter.
Sam’s twin baby sisters, Ada and Mae, are due on or before August 15, 2013.
-Mike & Erin
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