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Dakota - In the Fight of his Life

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Dakota’s Story – In the Fight of his Life

Our 4 year old son’s battle to beat brain cancer


My name is Dakota, I am 4 years old and this is my story…Last Friday morning, mommy and daddy took me to the hospital to take a picture of my head. The nice people in blue pajamas must have found something because the next thing I knew, we were back in our car and driving to another hospital made for Children. When we got there, there were some more nice people waiting for us in the emergency room where we were visited by lots and lots of people in white coats and blue pajamas. A tall man in a white coat shined a light in my eyes and poked around my tummy. After asking mommy and daddy lots of questions, mommy and I took a ride on a rolling bed to a place where they took another picture of my head.  When we got back in the room it was very quiet. The doctor was talking and even though I was very tired, I could hear mommy and daddy crying.  I have asked my great aunt Debbie to help me with this part because I don’t know all the big words. 


The tumor, medulloblastoma, located at the base of my skull caused my heart rate to slow. The neurosurgeon had me taken to the Pediatric Intensive Care Unit where I was immediately sedated, intubated and the top of my head shaved. The doctor drilled a hole in my head and put in a drain releasing the pressure. More nice people in white coats and blue pajamas came to visit me in my new room. They hooked me up to lots of big machines that beep, whine and make funny noises. A few days later, I underwent a more than 7 hour surgical procedure to remove the tumor.  When I opened my eyes, mommy and daddy were standing right by my side. I feel funny and am having trouble doing things like before.  I can’t move my arm and leg on my right side and it is hard to swallow or eat and my tongue feels strange. My eyes are jumping up and down in my sockets like ping pong balls and it is very hard to focus. I want to tell mommy and daddy all these things, but for some reason, as hard as I try, I can’t talk. The day after surgery the physical therapist and speech pathologist came to visit me. They come two times every day. It is hard and sometimes I don’t want them here, but somehow I know they only want to help me get better. The doctors are watching me all the time and waiting on something called a biopsy. It will determine how bad the cancer is and future radiation and chemotherapy treatments needed long-term. Through it all mommy and daddy have never left my side.  

All I can think about is going home and even though they put on happy faces, I can tell mommy and daddy are very sad.  It was not that long ago that we lost my baby sister, Alexandria. It was an especially sad time for mommy and I hate that they are sad again because of me. Mommy needs to stay well for my baby brother who is right now growing in her tummy. I am going to become a big brother soon and he will need me. Everyone keeps saying, “We have a long road ahead of us”, I am not sure what that means, but I hope it means I get to go home soon.

Dakota reading to his baby sister Alexandria, in heaven.

Dakota is slowly recovering, but has a long way to go. He will remain in the hospital for up to a month working to get back to some kind of normal. Dakota will fight to regain his ability to talk, swallow, eat, stand, walk and even dress himself. Chad and Christina have not left their son’s side focused solely on his recovery. You can read the families full story below. 

This family has faced the unimaginable keeping faith and hope in their hearts. We know how incredibly ridiculous medical bills can be, even with insurance, the costs can be insurmountable. Dakota will have a long road of recovery including rehabilitation, physical therapy, speech therapy, chemotherapy and radiation treatments. If you are able to donate even a few dollars to help with Dakota’s medical bills and long-term recovery, the family will be forever grateful. 

 Dakota’s Full Story..........

Three weeks ago, Dakota starting feeling tired, complaining his tummy and head hurt. Taken to the pediatrician 3 times over the course of 2 weeks, the symptoms presented like a virus, but the doctor decided to have a CT scan done to be on the safe side. On Friday morning, June 1st, my 4 year old great nephew, Dakota, was diagnosed with a brain tumor. He was rushed from Summerville Medical Center to the Medical University of South Carolina Children’s Hospital after a CT scan revealed a large mass.  Once in the Pediatric ER, I joined my nephew, Chad and his wife Christina with the medical team.  Dakota was immediately taken in for an MRI. Once the diagnosis was confirmed, the neurosurgeon, wasting no time, explained the situation and within 20 minutes Dakota was taken up to the Pediatric Intensive Care Unit (PICU) to prep for a Burr Hole Procedure. The tumor, medulloblastoma, located at the base of his skull was causing Dakota’s heart rate to slow to dangerous levels. He was intubated and sedated for the procedure which was done bedside. The medical team shaved the top of his head and the neurosurgeon drilled a hole through the top of Dakota’s skull placing a stint to release the pressure. Once this was done and Dakota’s heart rate normalized, the doctors were able to then schedule a full body MRI. The next morning, after nearly 3 hours in the MRI there was some good news. The spine is clear and it looked as if the tumor was encapsulated.  Measuring 4 cm in diameter, the medulloblastoma, located at the back of his head near the base of his spine would need to be surgically removed.  Chad and Christina were notified of the news as Dakota was made comfortable awaiting surgery. On Tuesday morning, June 5th, the neurosurgeon removed the tumor in a more than 7 hour surgery. Now awake, Dakota is struggling with swallowing, paralysis on his right side, eye complications and is unable to speak, eat or swallow. Time will determine the full extent of damage the tumor has caused as he remains in the hospital, under doctors care, for up to 30 days. His recovery involves physical and speech therapy, as there is a high possibility he may lose some of his motor skills as well as changes in his personality. Dakota will also face rounds of chemo therapy and radiation treatments which could involve travel to and from Jacksonville, Florida.   His mom and dad have not left their son's side.  

Christina and Chad are holding up and staying strong for their son and each other, but it is taking its toll. The doctors are not only monitoring Dakota, but keeping a close watch on Christina who is 26 weeks pregnant. She is due to give birth in September and the stress is palpable. As many of you know, Christina lost her baby daughter last year…Preparations were underway for the arrival of their daughter as Dakota, whose heart was set on a brother, grew ever excited about his new baby sister. Reaching full term and only one day until delivery, Christina knew something was wrong. As her heart sank, the couple rushed to the ER only to be given the inconceivable news that their daughter had passed away in her mother’s womb. The umbilical cord that supported her life, wrapped itself around their daughter’s neck ending her life before it began.  Christina, traumatized from the loss of her daughter, faced the ordeal of now having to birth her unborn child. Gathering what little strength she had left, Christina gave birth to her motionless daughter.  The family said good-bye to Alexandria Rae as she lay lifeless in her daddy’s arms.

 

Chad saying good-bye to his daughter, Alexandria.

There are no words to describe the hardship, torment and sadness this has taken on their lives. The loss of a child is the hardest reality a parent can face. Their daughter’s death brought their entire world crashing down around them. Chad and Christina clung to one another and their reason for living, their precious son Dakota.  Still healing from the loss of their daughter, the family finally managing to put a few pieces of their life back together, when heartbreakingly their world was shattered again with the news of their son’s cancer. Dakota is on a very long road to recovery battling brain cancer and fighting for his life.  This family has been through so much emotionally, physically and financially, but their love for each other and their son is unwavering.  Please keep them in your prayers. The family thanks you all so much for your support and encouragement. 


In love, Great Aunt…Debbie

 



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Donations 

  • Dr. Charles Darby
    • $300 
    • 4 yrs
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Organizer and beneficiary

Debrah Blevins
Organizer
Charleston, SC
Chad Blevins
Beneficiary

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