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Dakota's Monthly Updates

Round 2 for this little guy.....Nov 2018

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DAKOTA
Dakotas Battle

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ROUND ONE...... JUNE 2018

Dakota, who just turned 4, is in need of all our thoughts and prayers.  He has been having bad headaches and vomiting so Chad and Christina took him to the Dr.  He had a brain scan and they found a tumor.  They do not know what kind of tumor but will find out on Tuesday when he has surgery.  We all need to keep the family in our prayers.  Chad and Christina lost their beautiful little Daughter, Alexandria last year.  They are expecting a son in about 2 months and need all the prayers we can say to help them get through these long days. 

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 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.








Dakota reading to his baby sister Alexandria

Debrah Blevins

Dear all...I spoke to Christina earlier today for an update on Dakota. She is doing well and remains by his side. The doctors are planning to do an MRI on Dakota tomorrow in the hope that the spinal fluid is flowing as it should allowing them to remove the stint from his head.  Physical and speech therapists continue to visit twice a day. He is getting stronger, but still unable to speak and having trouble eating and swallowing. On Monday, he will have surgery to insert a temporary feeding tube for both nourishment and medicines. This will make sure his body is getting the property nutrition and meds necessary until he is able to eat on his own.  If all goes well and once the biopsy comes back and they can establish a plan going forward, Dakota may be released from the hospital.  Until then they will remain at MUSC through Father’s Day weekend. 

Chad spent Father’s Day wrapped in his son’s arms. It was a good day! Today Dakota will undergo another surgery to insert a feeding valve. Dakota is suffering from posterior fossa syndrome which is common after this type of brain surgery due to the location of the tumor. Although he is fully aware, he still cannot do all things that he could do before. These impairments are temporary, but there is no way to predict how long it will take for him to relearn everything or to what level. It could be days or years.


​​
A Father's Day message from Christina to her husband, Chad.​

A late Happy Father's Day post to my amazing husband. You are my rock, my strength and my courage. Over this past year you have shown me how much being a father truly means to you. Losing Lexi and now Dakota battling cancer has been the most difficult journey of our lives. You have been here for every moment pouring your heart and soul into our children. You keep us pressing forward with hope and love. I couldn't ask for a more involved, loving, fun father for our children than you. P.S. Dakota thinks you are absolutely the best!


After nearly 3 weeks, Chad and Christina received news last night that the biopsy showed the medulloblastoma to be high risk. Sadly, the risk of reoccurring tumors is high, placing Dakota's survival rate at 70%. Cancer cells have been detected in his spinal cord, but thankfully there are no signs of tumors. Dakota will undergo aggressive radiation and chemotherapy treatments to target and kill these cells. Proton Therapy, a treatment for cancer with a low risk of serious side effects, is what the doctors have recommended. The best place for this type of treatment is the University of Florida. Ideally, it is best to start treatment as soon as possible, but there is a wait list. The University of Florida is one of only a few places in the country that offer this type of treatment and we are told, the best for pediatric oncology. The therapy is an amazing process that delivers more potent doses of radiation only to the areas of the body affected by cancer making it less harmful, long and short-term, on the child. It is Dakota's best hope of beating cancer. MUSC is in contact with the University of Florida to schedule Dakota for treatment, but it looks like it will be 3 to 4 weeks before they will have an opening.

With that said…WE HAVE SOME VERY EXCITING NEWS TO SHARE...Dakota was released from the hospital today and is home with mommy and daddy! A swallow test this morning showed improvement allowing Dakota to go home. To continue strengthening his muscle reflex, he has been upgraded from ice cream to pudding, mash potatoes and applesauce. YUMMY!! Even though his feeding tube is keeping his nutritional intake in check, he is still hungry...a great sign and definitely a Blevins! Tonight Dakota is enjoying some of great-grandmas famous banana pudding. He has made excellent progress sitting on his own and standing and walking with a little help from daddy...about 90% Dakota. His right side is still working to catching up with his left, but that hasn't slowed him down. Dakota's new ride is a wheel chair, which he discovered he can make go on his own. Evidently, on his last night in the hospital he turned the halls at MUSC into a race track…great-grandpas influence I am sure!! Although not for the lack of trying, Dakota is still unable to speak. In their last night in the hospital, Christina showed Dakota a few words in sign language to help him communicate. Some include, I'm hungry, I have to go the bathroom and his favorite, which he signed over and over...“I love you”. We hoped the news would be better, but trust in the doctors and will continue to pray for Dakota’s full recovery. The sooner he can be treated the better the outcome. Please pray that the University of Florida will have space for him soon.

With this delay, we also must focus on Christina and her well-being. Due August 29, her OBGYN plans to induce mid-August. Obviously, Christina and Chad will be by their son’s side, so we will prepare for our newest member of the Blevins family via Florida and/or South Carolina depending of course on how quickly a spot opens up for Dakota. There is more therapy planned for this week and follow up visits to MUSC. Over the course of the next 10 days, the family will be asked to make a trip to Jacksonville for a base line MRI to prepare for treatment once a space opens up. Chad and Christina have shown nothing but strength for their son and each other.

Dakota’s progress to regain control of his own body continues to improve.
Thursday, the family drove to the UF Health Proton Therapy Institute in Jacksonville, Florida where Dakota was prepped for his fight to beat cancer. Dakota’s medullobastoma is categorized as high risk, which means his tiny body will also need to undergo aggressive chemotherapy treatment. Side effects from these treatments has its own challenges, but for now, we are taking one day at time.

Debrah Blevins

Over the weekend I got to spend time with my great nephew Dakota, who is making strides every day. He is still unable to vocalize his thoughts, but his intellectual processes are completely in tacked. His personality shines through in every glance, smile and giggle. I watched as he enjoyed unwrapping a few new gifts from a dear friend. Sitting on daddy’s lap, Dakota pulled one surprise after the other from his bag of goodies. Taking all of his new little stuffed friends in his arms, Dakota motioned to his mum, pointing up with his finger. Holding onto his mom’s hands they climbed the stairs to his bedroom where Dakota found a home for his new friends. Tears of joy rolled down my cheeks as Dakota read his new book to mommy. Sitting on her lap, turning each page, we were treated to the best story of our lives by way of shouts, grunts, growls and giggles. I will never forget that moment as long as I live. Later that afternoon the family gathered at the home of my baby sister and her husband. Treated to a delicious steak dinner, Dakota was none too happy with his mashed sweet potatoes, beans and pudding. He spent the afternoon laughing and wearing out daddy in a non-stop walk-a-thon. Dakota is completely aware of his surroundings fighting to break free from the shackles of his own body’s physical limitations. It will take time, but the progress he has demonstrated 26 days post-surgery is nothing less than miraculous.   


Debrah Blevins

 Chad and Christina prepare for their new arrival, Dakota is overjoyed at becoming a big brother. The tragic death of their baby daughter last year cannot be put into words. We carry her in our hearts as she watches over her big brother. Staying together and remaining strong for one another is their greatest strength. I have watched my niece and nephew endure a lifetime of tragedy. Their love for one another and their son has only grown stronger. With your love, continued prayers and God’s Grace, this family has hope. Please give generously in support of Dakota, he can’t do this all alone.

Please continue praying for little Dakota, Christina and Chad. They need our help more than ever. Please open your hearts and give in support of Dakota in the fight of his life. A BIG thank you to all who have generously given. You have all given this little boy hope.

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With each passing day, Dakota’s vocabulary is increasing and with some assistance from daddy, Dakota was on his bike for the first time this past weekend, helmet, knee pads, elbow pads, and daddy’s firm grip! Great grandpa received a priceless gift when he visited his great grandson this weekend greeted with a smiling face and the word “papa”. Dakota is making strides with each passing day and his progress thus far has been remarkable. Thursday, we all hold our breath as his recovery process takes a different turn when Dakota will begin his 6 week Proton Therapy Treatment. 

I have been asked what proton therapy is, so forgive me if this gets a bit technical. Proton therapy is a type of external beam radiotherapy that uses ionizing radiation. In proton therapy, medical personnel use a particle accelerator to target a tumor with a beam of protons. These charged particles damage the DNA of cells, ultimately killing them or stopping their reproduction.

Dakota has a difficult and challenging time ahead. Starting tomorrow, Dakota will receive treatments 5 days a week on an outpatient basis. Each day Dakota will enter the treatment room and be fitted with his personal immobilization device. He will be sedated and positioned with the aid of laser lights to within a few millimeters of the needed position. This special alignment and imaging process is repeated before each treatment to assure the highest precision. Most patients tolerate treatment very well with minimal side effects, but some side effects may occur including fatigue, nausea/vomiting, headache, hair loss and/or skin irritation. During the treatment, therapists continually monitor the progress of radiation delivery, including several safety parameters. Therapists also watch and listen to the patient closely, using video cameras, to ensure they remain safe and comfortable during the treatment. Once the prescribed radiation dose has been delivered, the computer shuts off the proton beam and the technologists re-enter the room, wake Dakota, remove his immobilization device and he goes home. This process will be repeated 5 days a week until the full 6 weeks of treatment have been administered. Following radiation, Dakota will immediately begin an aggressive chemotherapy regiment. Chemotherapy is now an integral part of the treatment of the majority, if not all, patients with this high risk cancer. 

The family would like to thank the incredible doctors, nurses, therapists and many healthcare specialists at The Medical University of South Carolina Children’s Hospital for their care and understanding. Thank you to family and friends and to all who have rallied around our little guy. With prayer, God’s Grace and his baby sister, Lexi watching over him, Dakota is in good hands. 

Be strong...I love you.

Great Aunt Debbie

July 11, 2018

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July 23, 2018    Aunt Debrah:

Dakota is at the start of his second full week of daily Proton radiation therapy treatments. Friday he will receive his third cycle of chemotherapy and the family has been told that Dakota may start showing signs of hair loss, normal during this cycle. Not to worry…shave kit is at the ready, if and when needed.
Early morning anesthesia is frustrating for Dakota, but necessary to administer treatments. In between daily treatments, weekly chemo cycles and doctor’s appointments for both Dakota and mommy, the family finds quality time to be together. Chad and Christina are grateful for every precious moment they can spend with their son. Witnessing with each passing day, their son’s determination and resilience in accomplishing even the smallest task, brings a happiness yet to be defined by words.
Dakota’s therapy is also paying off as he continues to make progress walking, climbing, bending his knees to get down and back up unassisted, playing a game of bingo and winning…great grandma and Tia Mary’s influence no doubt, beating his daddy in an all or nothing tricycle race or doing his famous “Blevins Booty” shake…setting the dancing world all a buzz! Dakota’s vocabulary is also expanding exhibiting signs of “purposeful talk”, one of the major means through which children construct and refine their understandings of language. He is becoming more and more independent and doing it in “Dakota style!”
There are no words to thank you for the outpouring of support for my great nephew and his family. Chad and Christina remain strong for their son, for each other and for their unborn baby. I, for one, have never been more proud of anyone. Love you two!
I also wanted to give a BIG shout out and thank you to the SUMMERVILLE COMMUNITY for the overwhelming support shown to Mr. Bill and Kevin during their fundraiser held at the Tastee Freez on Sunday. What a turnout! Because of your generosity and support, our fundraising event was a huge success! Dakota has a long road ahead of him, but with family, friends and faith there is hope. Our family is humbled by your love, prayers and generosity. YOU give us hope!
Thank you.
Help spread the word!

July 29, 2018

Marking the mid-way point, Dakota completed his third full week of proton and chemotherapy on Friday. As expected, Dakota is experiencing short-term side effects associated with his chemotherapy treatments. Daily nausea, constipation, fatigue and complete hair loss are now a part of his daily life. Dakota continues to astound everyone with his daily strides in motor skills, vocabulary and good spirits. He is full of get-up-and-go and both mommy and daddy are doing their best to keep up…his shirt says it all!!!!

Christina and the baby are doing fine. Weekly check-ups show both mommy and baby are healthy and progressing as expected. The doctors are watching her closely and monitoring the baby with each passing day.

It is impossible to put into words how Chad and Christina feel at this moment. They remain strong for each other and their son, but understandably they are also scared, anxious and overwhelmed by the enormity of the situation. Dakota is their world. Every minute of every day that they get to spend together as a family is because of your generosity. I wanted you to know that. Your prayers keep them strong, your well wishes give them faith and your love gives them hope. We are humbled by your benevolence for this little boy, his family and their journey.

In closing, I wanted to share some great news. Friday, the doctors conducted a routine CT scan on Dakota, but what they found was anything but routine. The CT scan showed that there was shrinkage in the cancer cells. It was small, but it was evident and it surprised them all.

Keep fighting little man. Keep praying and please share Dakota’s Story.



Dakota is closing in on week 4 of his 6 week cycle of treatments. I wanted to give you a glimpse into a day of this little boy's fight to beat brain cancer.

After rising early each morning, Dakota is administered anesthesia and placed in his body mold and mask to keep him perfectly still and in position for the few minutes of radiation. He has one more week laying face down for full cranialspinial radiation and then he will switch to face up for boost radiation on the tumor bed.

Dakota has lost most of his hair and is definitely feeling the fatigue now as a result of the radiation, but this doesn't slow him down a bit. His ever increasing vocabulary warmed his mommy's heart with an incredible rendition of their song, "You are My Sunshine", after the loss of his baby sister.

Dakota's mommy created "Dakota's Battle to Destroy Cancer Page" documenting his progress. You can access this page by clicking on the link below.

https://www.facebook.com/DakotasBattle/…

Scroll down his page to watch his singing debut. Listen closely as Dakota tells him mommy that, "He knows the words".

This incredible couple continues to find strength in one another for the love of their son. Please continue to pray for this family and Dakota's recovery.

DAKOTA
https://www.facebook.com/DakotasBattle/

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I will do my best to keep you all updated weekly with help of my Cousin Debrah Blevins.

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