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About Xander

Xander's Story
A Brave, Young Warrior's Big Battle

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Xander Kuchinski was born on May 12, 2007. He was a vibrant, joyful, intelligent, funny little boy who lit up a room each time he entered it. He had endless energy, a hilarious personality and such a beautiful, loving demeanor. When Xander was just 7 1/2 years old he began complaining of headaches and throwing up. One day in February 2014, he couldn’t stop throwing up, so his parents rushed him to the hospital where they did an MRI. The doctors told them that he had a large tumor in the back of his head and needed emergency brain surgery. The next day on Friday, February 13, Xander endured a three-hour sedated MRI followed by a six-hour brain surgery. 

 

His parents, Denise and Brian, were so grateful that the doctors were able to remove 99% of the tumor. However, they soon found out that the tumor had already metastasized to his brain and spinal cord. While Xander was recuperating from his brain surgery they learned the worst news of all, his tumor was not an ordinary medulloblastoma. It was an extremely rare type they had never heard of before.  It was called medulloblastoma with melanotic differentiation. There was only one paper written on it, only 20 children that had ever had this type of cancer before and only one had survived. But still the Kuchinski family moved forward with 100% hope and determination feeling certain that he would survive. They followed the prescribed regimen of chemotherapy and radiation which Xander had to endure daily. He never complained and was always laughing and grateful.  He would always tell his parents “I’m good!” even when they knew he wasn’t.

 

Xander's parents did extensive research on alternative treatments and added in everything they could think of to help him including herbs, supplements, oils, energy healing and anything else they could find.  They watched him slowly deteriorate as he quickly stopped eating and was throwing up 5 to 10 times a day. The surgical addition of a feeding tube, and a specialized diet, helped him keep down some nutrients but not a lot.

 

After the chemo and radiation were done Xander weighed only 42 pounds at eight years old. The chemotherapy and radiation had not done much to help his cancer and they were forced to look for alternative therapies. 

 

The Kuchinski's found an alternative form of treatment and flew to Houston Texas to try it. They were sure that would be the answer. They left Houston with him hooked up to yet another machine feeding him the new medicine. After a few weeks, Xander became unable to walk. An MRI showed that the cancer had spread throughout his entire body. The doctors told his parents that he was going to die; there’s nothing more they could do.

 

The Kuchinski's just couldn’t accept this news, so they continued the medication, but one day at their home, he went into a seizure, and they had to call 911, An ambulance came and took Xander to the hospital where they finally pulled him out of the seizure. A few days later they went home, and he had another seizure. Again, an ambulance came to their house and took him to the hospital where he almost passed away, but the doctors were able to save him. After that Xander was never the same He couldn’t speak, walk or go to the bathroom. He would spend the last two weeks of his life in the hospital with his family by his side. The Kuchinski's felt so helpless not being able to do anything to bring him back or to stop him from slipping away. All they could do was surround him with love and tell him how much they loved him and how wonderful he was!

On Sunday October 25, Xander's parents, Denise and Brian, were with him when his heart rate suddenly dropped. He was unconscious all day and just before he took his last breath, he opened up his eyes and looked right into the eyes of his parents. They said “Xander it’s OK. You can go to Jesus. You can go to the light. We love you so much! “He looked at them and then he was gone. They held him in their arms for hours…. eventually they knew it was time to let him go. 

Xander was such a bright light.... maybe too bright for this world. His parents knew someday that they would want to do something in his honor and try to bring joy to other children with cancer, all the while knowing this would also bring Xander joy in Heaven just as he brought his family so much joy on Earth.

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