Kylie's Krew

Kylie was born on August 14, 2008. Her life started out just like most children’s do. But nothing about Kylie’s journey would be easy as everyone would soon find out. She was about to face struggles that no one could understand. She was going to defy a tremendous amount of odds.

In about August of 2010, at about two years old, Kylie woke up in the middle of the night screaming at the top of her lungs. Nothing you could do could console her. She didn’t want held by anyone and she didn’t want rocked back to sleep. The only thing that would console her was drinking chocolate milk. (They later found out that sucking on her sippy cup relieved the pressure on her brain which made her feel better and fall back asleep.) Kylie started to express during the same time that her back was hurting her. A trip to the doctor led them to realize it wasn’t night terrors and the began test her for kidney reflux and maybe seizures. The test results came back positive for kidney reflux and they left it at that.

A short time later another trip to the doctor occurred. This time, Kylie would shake almost as if she had tremors. The doctor wanted to see proof and asked for a video of Kylie doing it so she could see it for herself. Kylie was sent home again with her mother, Nikki, with no real diagnosis of what was causing it.

The trembling, shaking, and pain in her back continued. At this point Kylie was in and out of the hospital at least 3 days a week. No matter how many times they went the results were always the same: she was constipated, it was just a virus, etc. There was still no diagnosis and every time she was released and sent home. On one particular time at the hospital she was throwing up yellow and everyone was really concerned. The diagnosis? Something she ate.
The nurses and doctors never felt the need to go out of their way testing Kylie. Kylie’s family fought with nurses on several occasions just to get them to test her blood. The difference with Kylie is that her illness did not show up in her blood. So once again, no diagnosis and another negative test.

Things continued to get worse. Kylie continued to feel sick, her back continued to hurt, she was still shaking, and she was now starting to drag her feet and act a little off balance. Things got even worse when her eyes started to cross. Her mother took her to the eye doctor on December 31, 2010. They dilated her eyes and Kylie wouldn’t be still for the doctor to look in the back of her eyes. They made an appointment for the following Monday so Kylie could be put to sleep and the specialist would be able to look into her eyes. Monday would prove to be too far away. That same night Kylie’s dad took her to the emergency room because she was struggling to feed herself. She could not physically get the spoon from her hand to her mouth. With all the trouble with the nurses not testing Kylie at the hospital they insisted on giving Kylie a CT scan. The doctor got the results back and came in the hospital room crying at the same moment Kylie’s mother walked in. He put the CT scan up and the news was clear as day and devastating.

On New Years Eve 2010 Nikki and Sam finally had some answers about their daughter: Kylie had a tumor the size of a tennis ball on the left side of her brain.

They sent her to ICU immediately. The whole time Kylie was lifeless but in so much pain. The only thing she wanted was her chocolate milk. But because she was going in for an MRI on Monday morning, the nurses told Kylie she could not have the one thing she really wanted. Before they could do the MRI they had make sure that Kylie’s father’s insurance would pay for it before they would even consider doing it. They had to have Kylie wait from Friday night until Monday morning for it to be approved.

At the same time Kylie’s great aunt was on her computer when St. Judes popped up and she clicked on it. She contacted them and within five minutes the head of the neuro oncology department, Dr. Gajar, came calling. Kylie had the largest brain tumor they had ever seen in a child under the age of five and St. Judes knew they needed to step in. He arranged for a neurosurgeon to call them and tell them about the next steps they needed to take. Dr. Paul Klimo called and talked to Kylie’s grandmother. He informed her that they could come and get Kylie, transport her to Memphis, and operate. But first, she had to be released and taken to the hospital. This was easier said than done. The nurses and doctors refused to discharge her. Once again, money became an issue. They were concerned that it would cost them $19,000 to transport her via ambulance to the airport. With time working against Kylie’s odds money was the last thing that mattered to her family. They were willing to pay check, cash, credit card, or whatever it took to get Kylie the help she desperately needed. The hospital tried every way they could to keep Nikki and Sam from moving Kylie. After a heated discussion between the doctor at the hospital and the surgeon at St. Judes he finally came in and told them to discharge her. The nurse still continued to argue the decision and refused to give Kylie’s mother her discharge papers. It took a few arguments but the documents were handed over with one last request: STILL no chocolate milk for Kylie.

The hospital may have not been happy about it but Kylie was heading to Memphis and Dr. Klimo said to give her the chocolate milk and anything else she wanted.

Within a few short minutes Kylie was in the ambulance and on her way to the airport. When she arrived they flew her on a PEDI-flight from Knoxville to Memphis. They found out later that on the flight to Memphis they had to leave one of the compartments on the plane open. At the time they were afraid that the airplane and the altitude would have caused a lot of pressure in her head and around the tumor so much so that her brain might have exploded. The paramedics in the plane was on the phone with the neurosurgeon during the transporting from Knoxville. They did not believe that Kylie would make it through the flight. Kylie’s family and friends didn’t know the odds of her making to Memphis were slim.

After arriving in Memphis, Kylie was taken to the Le Bonheur Hospital and placed in ICU. Dr. Klimo came in when Kylie arrived at 4 am and told Nikki and Sam what he had learned. The tumor was malignant. It was Stage 4 but they didn’t know what it was.

As Kylie’s mom and dad were in the waiting room on Sunday morning the doctors and nurses ran to find them. Kylie was showing signs of apnea. She was drifting in and out of consciousness. Nikki and Sam were asked to go in the room with their daughter. Nikki sat in the bed and was asked to shake Kylie continuously in hopes of keeping her awake. The doctors and nurses soon flooded the room and put her to sleep and placed a tube down her throat. They rushed Kylie down to the operating room immediately after. On the way down there, Kylie was faced with another bump in the road. She suffered a stroke. Her parents were running right beside the gurney signing release forms so she could be taken immediately to surgery.

Surgery soon followed. As Dr. Klimo began to drill the holes in her head for her halo to keep her head still, her brain began to hemorrhage out of her skull. If it had been minutes she would have died. Suddenly all the arguing and struggles at the hospital trying to get her released quickly meant even more to Kylie and her family.

All her family could do now was wait. They found themselves thinking about all the symptoms and side effects this surgery could have on Kylie. She could not be able to walk or talk. She may not remember anything. She may not make it.

Hours later the surgery was complete. The shaved half her head and took the tumor out. Dr. Klimo had removed the entire tumor from Kylie’s small brain. Kylie was in ICU for the next 14 days. She now had drains from her brain replacing the hair she previously had on her head. But while cancer had taken her hair her smile and dimples hadn’t gone anywhere.

On January 9, 2010 Kylie went in for another surgery to have a shunt put in her brain. During the surgery Nikki and Sam returned to their rooms and took showers. They left Kylie’s uncle with her where he sat for hours rubbing her back. Kylie didn’t want him to stop, so he didn’t. When they returned the surgery was complete. They noticed that the right side of her head was swollen like a watermelon. The shunt had malfunctioned and wasn’t communicating with the other side of her brain. Then came another surgery. They rushed her back down for a CT scan and then to the operating room where they put in the second shunt.

Kylie had two brain surgeries in one day.

She slowly starting walking again and was moved from ICU back up to her room. From that moment on they went to St. Judes. She began her first round of chemotherapy which meant 6 months at St. Judes. They treated Kylie like protocol for a solid tumor because at this point they still had no idea what kind of cancer she had. Chemotherapy meant 5 days of constant hook-up and staying in the hospital. The purpose of this treatment is to kill all the cells in your body and your counts be at zero. Chemotherapy kills not only the bad cells but also the good ones. As soon as the chemo was over Kylie would be transported to outpatient and wear a mask until her counts went above 500. When you get a fever with your counts under 500 it is called Fever Neutropenia. Kylie’s journey once again became a little different than most. Everytime she had chemo, with the exception of one, she developed a fever and was moved back into inpatient for further care. Kylie would now remain in the hospital until her fever would break and her counts would come up. This meant spending 21 days out of every month in the hospital. Towards the end of her chemo it took even longer for the Kylie’s counts to recover and go back up.

Kylie was spending all her time fighting from her hospital bed. Her spirit never once left however. She would throw up until she couldn’t anymore and then ask for a chocolate cupcake. She was happy even though she was facing struggles most people couldn’t even imagine.

Along with having Fever Neutropenia, anything else that could have gone wrong with Kylie during her battle, did go wrong. Since this was before they had safety needles, her butterfly needle in the port for her chemo got pulled out more than any other patient at St. Judes. Kylie continuously had bad reactions to her antibiotics and other medications. Kylie would find herself getting stuck with one inch needles instead of ¾ inch. This meant the whole process would have to be done again. While Kylie was at St. Judes, everyday that she wasn’t inpatient she was still getting stuck with needles and having her blood drawn. She never got a break.

While at St. Judes during this time they find out Kylie has Leptomeningeal Disease. This means that Kylie’s cancer was covering her whole brain and spine. They had also sent Kylie’s pathology results to John Hopkins, MD Anderson, and Mayo clinic in hope of finding out more information about the tumor. After the first 6 months at St. Judes they got a name for Kylie’s tumor: Malignant Primary Myoepithelioma They compared her cancer to one of a 47 year old woman. The woman had cancer in her salivary glands and they moved to her pituitary lobe on her brain. Kylie’s cancer is different for it started in her brain and never went anywhere else.

After the first 6 months of chemo were completed it was time to look at the test results. Everything looked good. Nikki and Sam could finally take Kylie home and continue with oral chemo. Kylie was on a lot of medication at the time including some to help her with her Abstanant Seizures. These seizures cause Kylie to stare off into space and no amount of distracting can grab her attention.

Regardless of everything she had gone through in the previous months, Kylie was finally home. She began her oral chemotherapy for 6 months and everything was going great. About 2 ½ months into the home chemotherapy Kylie began acting a little different again. She went back for another CT scan.

This time the scan didn’t show one tumor, it showed four tumors and a cyst on one of them. So back to St. Judes Kylie and her family went.

When looking at treatment again for Kylie, radiation was not yet an option. Radiation in children under five years can cause a lot of delay in learning and growing. The only option was another form of chemotherapy they call ICE. This is a type of chemo they give to children who are on hospice. The medication is used to calm the cancer down and keep them out of pain. The doctors made it clear to Nikki and Sam that if their daughter’s cancer ever came back that it would be ten times smarter, ten times faster, and ten times stronger. This time they knew Kylie would have an even bigger fight on her hands. The same cycle began. Chemotherapy for five days and then she would develop a fever and have to stay inpatient until her counts went back up. Now it was time for the next scan. This time it showed that the cyst had in fact gotten bigger. The cancer on her spine however was beginning to look better. At the time they could not draw the fluid from the cyst because her brain had not shifted back completely and they were afraid of damaging it.

They were then told to take Kylie home to enjoy Christmas. Nikki and Sam were told to really take the time and enjoy it with Kylie because she would not be there with them the following Christmas.

After the holidays had passed Kylie started to get worse again. She began having really bad headaches to the point where she would throw up and not want to do anything. After a local hospital trip they were told it was just migraines. So once again, Kylie was headed back to St. Judes.

This time the cyst had once again gotten bigger. This time they decided to go down a different road. This road lead to radiation. The problem with that is they still did not know exactly how to treat it. The dosage that the radiologist would have to give Kylie could kill her. They would have to give her an extremely high dosage and they would have to radiate her whole left temperlope. Kylie was given an adult dosage for six weeks. And during these six weeks Kylie would be put to sleep Monday-Friday. She would go back to the room, get put to sleep. They would then transport her to the radiation room where she was strapped down with a custom fitted mask. She would then do radiation for just five minutes. She would then go to recovery and spend an hour. What would normally take someone 20 minutes took Kylie 4 ½ hours.

After the six weeks the doctors did another scan. This time it showed no change. They took Kylie home. After three months they took her back for another scan. This time one of the tumors was getting bigger but the cyst looked like it was getting smaller.

But once again Nikki and Sam were told the same thing: there was nothing left to do. They do have the option of experimental drugs being given to Kylie. But these drugs are designed for adults. This means they realistically have no idea how much of a dosage to give Kylie. One wrong dose could kill her.

The past two scans at St. Judes have shown the same things. In the first one the tumor was continuing to get a little bigger. The last scan shows that the tumor is the same size but the cyst is getting bigger. They also now know that the cyst is tumor cell filled because the outside of the cyst is turning into a solid tumor. This means that the fluid going through her brain and down her spinal cord has tumor cells in it. And while most people develop tumors ON their spinal cords, Kylie’s developed IN her spinal cord. She also has some smaller spots at the bottom of her spinal cord and the Leptomeningeal Disease has started to show back up. Radiation can be done again but not in hopes of curing it. Radiation would only do one thing: relieve some of the pain. Kylie’s radiologist has decided not to take part in radiating her brain again. He does not want to take four or five weeks out of her life. They also will not operate again because the tumor is entangled inside her skull. The doctors won’t operate for fear that Kylie could die on the operating table.

Steroids are another option for KYlie as things progress. The problem with this involves Kylie’s temperament. The left side of Kylie’s brain is not connecting completely with her body. This can be seen in Kylie’s weight gain. Doctors believe she is borderline in developing an obesity disease. Her brain is simply not telling her body to metabolize. With the use of steroids the left side of her brain will not tell her body to calm down. Her temperament would slowly get worse.

Throughout her difficult times, Kylie and her family have found a silver lining. The connection and relationship Kylie has with the Lord is one anyone should be envious of. Kylie knows that she is sick. And she knows she cancer. She knows that the Lord is guiding her down this path and will one day give her the wings she has earned. Kylie has said things that will give you chills. When a family friend’s husband died of cancer Kylie insisted on attending the funeral. On the way to the funeral Kylie was sitting in the backseat pretending she was on the phone. When asked who she was talking to she said “Don’t worry about it.” When Kylie and her mother arrived at the funeral, she took off running inside. Before Nikki could catch her she was at the front near the casket. She got down on her knees and told the lady that she had talked to her husband in Heaven on the way over there. She said that the man told her he was better now because Jesus took care of him and made him feel better. There have been many times when Kylie has said she talked to Jesus or times when she says Jesus came to talk to her. No one will ever understand their relationship. Kylie goes to the altar every Sunday by herself and prays. People refer to Kylie as an angel. With moments like this with the Lord it’s really hard to deny.

Medically there are no other options for Kylie but this does not mean she is on her death bed. Kylie is still continuing to smile her beautiful smile on a daily basis. She has good days and her not so good days but Kylie goes 100 miles an hour until she cannot go anymore. The energy she has is truly amazing. Kylie has the most amazing spirit and even though the doctors cannot do anything else, her journey is far from over. The Lord is the author and finisher of Kylie’s book. She has walked through the past few years hand-in-hand with God. Kylie has spent over half of her life fighting and in and out of hospitals. She has defied every odd put in front of her. She wasn’t suppose to make it to Memphis that night. She wasn’t suppose to make it through brain surgery when in fact she’s made it through multiple. She wasn’t suppose to make it after the first round of chemo. She wasn’t suppose to make it to the next Christmas. And almost four years later she is still here and as happy and strong as ever. Through everything she has gone through, Kylie has not given up and neither have her mom, dad, family, and friends.

Kylie is now at home where hospice is coming two days a week in hope of getting Kylie comfortable with them for when the time comes. There is no set time frame for Kylie’s life. Eventually either the Leptomeningeal Disease will get really bad and Kylie will have difficulties walking, going to the bathroom by herself, etc, or the cyst will continue to get bigger and the pressure will simply cause her to fall asleep and not wake up.

Once again all that can be done is waiting. Waiting to see what happens next. Waiting to get an answer. Waiting for things to progress. Waiting to see if once again Kylie can defy the odds.

Until that time comes though, you can probably find Kylie with a huge smile on her face and maybe even a guitar in her hand.
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