We are in need of donations for a silent auction to be held March 14th 2015 at Levi and Hanks Bar and Grill in Hermitage. We are trying to collect money to help with the large expense involved in sending Karsyn Grace Thornton to another state for a lung transplant. Karsyn has been in ICU at Vanderbilt Childrens Hospital since December 1st. She is a Kindergartner at WA Wright Elementary in Mt. Juliet. Karsyn now has a tracheostomy and is on a ventilator, her only chance for any type of normal life is a lung transplant. Below is more of her story which began three years ago: Just shy of Karsyns third birthday, we received devastating news: a rare and aggressive brain cancer known as Atypical Teratoid Rhabdoid Tumor (ATRT) had been growing in Karsyns head. This page was started to chronicle her journey and to keep family/friends updated. Karsyns tumor was fully resected and removed. Her treatment protocol included chemotherapy, stem cell transplants, and full head and spine radiation. She completed treatment in June of 2012. In July 2012, just one month after completing treatment, Karsyn begin to have treatment complications. After a few scans, Karsyn was diagnosed with radiation necrosis surrounding her brain stem. The necrosis caused neurological changes including the inability to walk. After receiving steroids to decrease the inflammation in her brain, Karsyn pulled through and with lots of therapy began to walk again. Later that year in October 2012, Karsyn begin to exhibit symptoms of aspiration. She started coughing nearly every single time she would drink her milk. It was determined that her epiglottis was no longer functioning properly and was allowing her to inhale liquids. This was most likely caused by the radiation necrosis in her brain and that she had been aspirating for months unknowingly. She became very ill with aspiration pneumonia in November and had to be intubated. She survived this setback and came out very strong. At the very end of December 2012, to help prevent further aspiration from vomiting or reflux, a Nissen fundoplication and gastrostomy was preformed. This g-tube allowed for her to receive fluids and proper nutrition since she was not eating very well still. Karsyn had a follow-up appointment late January 2013 to actually get her g-tube button. During this time, a topical medication, benzocaine, was used to numb her tract to place the new g-tube button. It is uncertain as to whether too much benzocaine was used or due to Karsyns overall health issues she did not tolerate the benzocaine. She ended up with toxic levels in her blood and this caused methemoglobinemia. She was rushed to the trauma unit from the surgery clinic where they stabilized her by intubating her and giving her the antidote to correct the methemoglobinemia. She too survived yet another setback in her pathway to healing from the cancer. Fast forward to 18 months because for this time frame Karsyn was making decent progress except her lungs just seemed to be worsening over time. From one insult after another to her lungs (radiation, aspiration pneumonia, etc.), Karsyn stayed on oxygen and steroids continuously. During the summer of 2014 before Karsyn was due to start kindergarten in August, Karsyns lungs really seemed to deteriorate even more. There was a hint that in her future she would need a lung transplant because it was determined she had an interstitial lung disease. The pulmonology doctors decided to start pulse dose steroids to try to wean her daily oral steroid dose and improve her lung function. Karsyn went into the hospital for pulse steroids for three days every 4-6 weeks. By November 2014, Karsyn had completed 2 pulse dose steroid treatments. She had been doing well and attending school every day except for the minor illnesses like ear infections and colds until Thanksgiving. The weekend following Thanksgiving, Karsyn had a high grade fever which is very unusual for her and very high respiratory rate. On December 1st, 2014, Karsyn was taken to the pulmonary clinic were she showed symptoms of what seemed like the flu but later was determined to be human metapneumovirus (very similar to RSV). Within days, Karsyn was moved to the ICU, intubated and placed on ECMO to save her life. Still in the ICU and intubated but no longer on ECMO, Karsyn is making slow and steady progress. Her next steps are to get a tracheostomy (she now has) to aid in her ability to get strong, start walking again, and well nourished. Once all this takes place, then the next step will be to move forward with a lung transplant as this is the only permanent fix to her lung condition.
Posted on: Mon, 26 Jan 2015 02:29:54 +0000
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