Getting the news about Cletus led to a plethora of appointments, scans, and endless lessons on how these rare tumors can be contained when full-out treatment isn't really an option.

 

In the beginning, the Ripleys' chose radiation for Lindsay, hoping to shrink the tumor in leu of the surgical approach. A month after that decision had been made, it became clear the only real hope Lindsay had for beating Cletus was to have him removed, and thus, the decision was switched to surgery despite its risks - from permanent facial paralysis to spinal meningitis and worse.

 

February of 2011, Lindsay flew to Los Angeles, where her ten-hour surgery was due to take place at the House Ear Institute. To be removed alongside Cletus were her auditory nerve, and the nerves that controlled her right vocal cord and swallowing. During the surgery, Lindsay would have a metal plate inserted into her head, and a skin graft from her stomach to patch the area.

 

By the time of the surgery, Lindsay had already lost most of her voice, 100% of her hearing in the her right ear, most of her swallowing ability, and much of her nerve function in her right shoulder. These functions would likely not return, or even strengthen from the removal of Cletus, but rather no longer be damaged further by the tumor. The hope of stopping the damage was enough for the Ripleys', however, and they forged on to the surgery.

 

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The dreaded surgery in Los Angeles proved to be fruitful in removing the entire tumor in Lindsay's head. Aside from the normal side effects, along with a punctured lung and pneumonia, the root purpose of the surgery was accomplished - Cletus was removed. During her recovery from the first surgery, Lindsay underwent another, this one on her vocal cords, meant to make them stronger and add ease to the extreme difficulty with eating and drinking. The results were poor early on and a painful surgery to input a stomach tube was necessary for nutrition intake. Her 3-4 day hospital stay quickly turned into 17, but slowly, progress was made.

 

For a few months post-surgery, Lindsay was unable to lie flat for fear of pneumonia (from saliva getting into her lungs as her swallowing reflex was not working), her voice was weaker than ever, and the right side of her face was paralyzed. She also was diagnosed with a rare condition where severe migraines develop after the body has suffered a trauma, in this case: her surgery.

 

As time went on, her facial movement began to improve and return, but her ability to eat stayed stagnant, and she suffered numerous bouts of pneumonia and hospitalizations. At this, the decision was made to return to Los Angeles, and undergo a minimum of a month of strict physical therapy and Vital Stimulation in the hopes of returning strength to Lindsay's swallowing muscles. Hope was limited, and only a handful of people believed in the possibility for Lindsay to regain her ability, and even among those few believers, it was thought to only happen years after Lindsay began therapy. Miraculously, within six weeks of starting her therapy in July, Lindsay regained much of her ability to swallow.

 

By August of 2011, Lindsay had undergone 5 surgeries, suffered through 5 bouts of pneumonia, and so much more. In September of 2011, it was decided to have the feeding tube removed from her stomach, as it was believed to be attributing to her reoccurring pneumonia. This decision led to her swallowing muscles growing even stronger, as her body learned the only source of nutrition could come from her mouth.

 

Unfortunately, Lindsay's immune system remained weak and she has since continued to get sick easily. Her migraine condition also has yet to dissipate. During the post-op MRI in November of 2011, a mass showed up where Cletus had once been, and doctors were unsure if it was simply scar tissue, or "Cletus: the sequel" as Lindsay referred to it. It turned out to be a regrowth of tumor, and Lindsay received radiation treatments at KU Medical Center, in yet another attempt to stop Cletus from growing. The treatments made her even sicker than the surgery, and left her with hemifacial spasms that require botox injections every three months, and made eating and drinking even more difficult.

 

It seemed that despite the challenges she continued to face, she was recovering from Cletus, and her body was learning to live with the damage the tumor and surgeries had done. But as Lindsay was still finding herself in the ER even in June of 2013, almost a year and a half after surgery 1 in Los Angeles, it was decided that she have another full body MRI.

 

It was during her appointment one day in July (2013) that doctors informed her of masses growing throughout her body - in her head, along her spine, and in her abdomen. These tumors have yet to respond to any treatment suggested by doctors, and Lindsay's only chance may now lie in the hands of radiation. At the age of 23, she has been declared terminal (from this genetic cancer gene that puts everyone in her family at risk), given a timeframe of a less than five years to live if treatments prove unsuccessful. 

 

When we, her friends and family, learned this news, we were devastated, but decided to take action in any way we could. It is not news to us that Lindsay is a fighter, a warrior with a strong heart rooted in her faith and the love of her family and friends, but it is a story we know we MUST share.

 

We have chosen to do all we can in easing the burden of this war she is still fighting, and one of those decisive battle moves was the creation of this website. We want it to be used as a way to not only ease the financial burden of this, but also provide hope and joy in these very dark moments.

 

The overall goal of this website, however, goes beyond the ease of medical bills, and extends to fulfilling her hopes and dreams. Below you will find a bucket list constructed of things Lindsay has talked about wanting to do or see before leaving this earth. We pray everyday that the above timeline is not all we are given with her, but we are also not taking any chances. If you would like to join our fight and donate to bills or a bucket list item, please click the donate link below, or go to the home page and send an email.

 

There is always something we can do for one another in dark times, and we all truly hope this site can bring as all together to do something great for this young woman who has spent too many years fighting with few rewards.

 

Thank you for reading this story, and we hope you pass it along.

 

 

 

 

 

"Out of suffering have emerged the strongest souls; the most massive characters are those seared with scars."  

- Kahil Gibran