Today is September 11th – the 11th day of Childhood Cancer - TopicsExpress



          

Today is September 11th – the 11th day of Childhood Cancer Awareness month. Today I want to honor Savannah Swandal. Savannah was treated at Vandy, and we saw her at clinic occasionally. Lily became friends with her at Camp Horizon one summer. On February 2, 2006, at the age of 5, Savannah was diagnosed with stage 4 Alveolar Rhabdomyosarcoma (also known as rhabdo or ARMS). Rhabdomyosarcoma is a very aggressive, highly malignant soft-tissue sarcoma. The 5-year survival rate for children with metastatic rhabo is only 20%. Savannah went through 42 weeks of chemo and 6 weeks of radiation and was declared NED (No Evidence of Disease). However, in April 2008 she relapsed. She went through an additional 10 months of chemo. Again, she had clean PET scans and all seemed well. Yet again, the rhabdo came back. More chemo. More radiation. In February 2011, a CT scan showed significant progression. They had exhausted all options, and hospice care was begun. Robin, Savannah’s mom, re-named the hospice team the “pain management” team because Savannah had known too many cancer friends who were put on hospice care, and she knew what that word meant. Savannah had fiercely and courageously battled rhabdo for over five years. She won the battle on March 21, 2011 when she took her last breath on earth and entered heavens door. Thats a brief summary of the medical side of Savannah’s journey in childhood cancer. However, as with all cancer kids, the medical side is only a small tidbit of Savannah’s story. In the spring of 2008, Savannah got a new puppy – a Westie that she named Sunshine. Sunshine was her faithful companion. Wherever Savannah was, there was Sunshine. They were inseparable. Sunshine was appropriately named because with Savannah’s bright smile and fun-loving personality, Sunshine DID follow her everywhere – both literally and figuratively. Savannah also loved stuffed animals and would pile them up on her bed and sleep in the middle of them. Robin wrote about Savannah’s love of the water: “Savannah is such the little fish who loves the water--any type of water--the ocean, the pool, the hot tub! She’d stay it in all day, 24/7 if we’d let her. She also loves the sand--walking on it, squishing it between her toes, building sandcastles with it, getting buried in it, burying Mommy in it, writing messages in it, making footprints in it & picking handfuls of it up & letting it fall through her fingertips.” That’s why the photograph of Savannah running through the sprinkler is one of my favorites. In the photo she looks totally enraptured with the joy of playing in the water. Once after clinic, Savannah and Robin went downstairs at the children’s hospital and there was a special sale going on next to the food court. Savannah saw a fleece blanket – bright green on one side with yellow, green and turquoise flowers on the other side. She loved it and decided to buy it with some Christmas money she had received. They offered free embroidery, and the ladies asked Savannah what she wanted embroidered on her blanket. Her name? Her initials? Savannah whispered to Robin what she wanted, and she took home the beautiful blanket with a butterfly and the words “Cancer Fighter” embroidered on it. One of Savannah’s greatest joys was when her baby brother, Luke, was born in February 2010. She was so proud to be a big sister. And Luke adored her as well. In February 2013, a baby sister, Lexie, was born. I can imagine Savannahs joy in heaven to have a baby sister, as well. Savannahs Make-A-WIsh was for a bedroom makeover. David Bromstad, the star of HGTVs Color Splash! designed her bedroom, and Savannah got the purple walls she wanted with lots of lime green accents. Savannah loved it! I want to end with something Robin wrote in Savannah’s CaringBridge in May of 2008. It is something we all can take to heart. “When Savannah was initially diagnosed with this cancer monster, it was then I realized I was taking time for granted. Thoughts, dreams & plans for the future with my little girl changed from a ‘guarantee’ in life to a ‘maybe’, an ‘if.’ I was slapped in the face with the reality that I dont know how much time I have with her. I used to speak freely & with great certainty about Savannahs future. I talked about her development & possible experiences in elementary, middle & high school, college & the time after. Isnt this something we all do? Dont we all say, When you get a little older..., When youre in 5th grade..., When you go through puberty..., When I teach you how to drive..., When you get to high school..., When you go to college..., When you get married..., When you have a baby...?!?! Unfortunately, there is no guarantee with time. We dont know how much we have with our family, friends & loved ones. We have to make the most of each day, live life to the fullest & appreciate ALL of the small stuff.” Savannah, you were a shining light of courage and brightness, and you continue to be an inspiration to us. May we all not take a single minute of life for granted. And if we are able to fight whatever battles life gives us with even a fraction of your bravery and courage, we will have done well. You are greatly missed.
Posted on: Thu, 11 Sep 2014 10:18:48 +0000

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