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Dakota - In the Fight of his Life

$14,400 of $20,000 goal

Raised by 103 people in 9 months
Created June 15, 2018
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.
 
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.
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Update #41

Hello and Happy Spring!

Much has happened since Dakota wrapped up his final round of chem on Sunday, February 24th.

Dakota's counts crashed hard after his final treatment. That was to be expected since he started chemo slightly under where he should have been. His bone marrow is depleted and just can't keep up. His counts were also lower than they had ever been with his hemoglobin 6.0, platelets 10, ANC 40. The week didn’t fare much better, so the family planned to head back earlier than usual on Monday, March 4th for more transfusions. We continue to pray and know that thankfully, his counts should start stabilizing very soon. Dropping so low really does a number on him physically and emotionally. As you can see this didn’t stop him from having some fun. Dakota decided to play dress up looking ever the lumber-jack and a lot like daddy! Beards seem to be all the rage this winter...even knitted ones!

Monday arrived and our prayers were answered...no transfusions needed! Dakota's numbers were surprisingly good and it looks like they are beginning to stabilize. He was feeling great and full of energy all weekend, and even wanted to go outside and play enjoying some time on his swing in the back yard. Dakota also received a brace today, which he will begin wearing on his leg to assist with his gait/placement. His brain surgery caused some leg weakness which in turn caused issues with his leg placement. In time and with the brace this should correct itself.

Dakota has a referral to see an endocrinologist for adrenal insufficiency. This means his body is not producing cortisol like it should. Cortisol plays a major role in many important bodily functions including managing physical stress or illness, energy metabolism, sleep cycles and memory formation. Radiation to the whole brain poses so many risks, this being one of the more common by damaging the pituitary gland. Luckily, managing this should only require daily replacements of hydrocortisone. We should also see a boost in his energy, his color is coming back and he is gaining weight...not that anything to date has slowed him down much...just saying!!!

One last note from as sweet man in Iowa

I also wanted to share a bitter/sweet story from Rik Zortman a total stranger who reached out to Dakota from Iowa. Christina and Chad are humbled that this caring man would dedicate one of his runs to their sweet boy! Rik Zortman has dedicated each of his 721 runs to a child with cancer and runs their name in a pattern. He is raising awareness in such a unique way in memory of his son, Armstrong, who loved to run, but fought and lost his battle to brain cancer at the age of 3, passing away in 2009. Thank you, Rik, for supporting all of the brave little warriors! Our cup runneth over!!!
#humanetchasketch #gogold #fightlikeakid #childhoodcancerawareness

Watch Rik’s touching story here
https://m.facebook.com/story.php?story_fbid=2398131320205696&id=147262525292598

Once again thank you for all your prayers.
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Update #40

Dakota is DONE y'all!
He completed his treatment protocol!

✔ 7+ hour brain surgery
✔ 30 rounds of proton radiation with weekly chemotherapy over 7 weeks
✔ 6 rounds of high intensity chemotherapy over 6 months

Dakota had his final dose of chemo today after a very traumatic port access. We are so excited for Dakota to begin recovering and for life to hopefully settle down just a little. We couldn't be more thankful for how well he has done through this entire process. We now transition from actively fighting the beast to managing and preventing the ill-effects treatment causes. He is still recovering from the debilitating effects surgery caused 10 months ago while the damaging effects of chemo and radiation have already started to show up. We need kinder treatments that cure our kids.

Dakota will receive his post treatment MRI and lumbar puncture in about a month and then will return for MRIs every 3 months to ensure no new growth occurs. Please continue to pray for his health and clear scans!

Thank you.
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Happy 'love day' from Dakota! This little heart breaker made cute cards and gave them to his favorite nurse, therapists and family today. He's been feeling really great this past week and even hiked over a mile himself last weekend!

Dakota had an audiology appointment today and now has mild-moderate high frequency hearing loss. One of the chemos he receives likes to continue giving long after treatment is over so, there is a good chance he will need hearing aids in the future. For now, he just can't hear the quiet bird chirping range, and that's alright. Our last round of chemo starts next week!

Taking it one day at a time little man and keeping it cool!
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Dakota update #38 - Round 5 of 6 Complete

So much we don’t see, so much this young couple live every single minute of every single day. Chad and Christina are exhausted, terrified and beaten up by cancer. It’s not a choice, it is a reality. It’s not strength that keeps them going, it is the love for their son.

Thank you for your continued prayers.

"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed."
Linda Wooten

Round 5 inpatient chemo is complete and we are home! I wish everyday there could go like this day one did. Dakota made me so proud! Everyone in clinic and on 7B came by to play with him when they heard he was in such an uncannily great mood. He laughed and joked with everyone. He snuck up on the nurses, scared them and ran down the halls laughing. He even sang while the nurse hung his chemo! They all complimented him on how great he was doing and wished the happy boy would stay. That's a side is him that some of them have never seen. I always tell the staff that he really does like them, it's just the steroids they usually encounter.

Then, as usual, day two came, the steroids kicked in and the chemo really took its toll. He needed blood for the first time during an inpatient stay for chemo. He's very tired and emotional. He smiles and laughs, then breaks out in tears and screams and then laughs again. Over and over all day. It's an overload of everything and nothing all at once. Steroids at their finest. Thankfully this part usually doesn't last too long and he should be feeling better in a day or two. We did manage to enjoy some fun playtime in between naps and emotional break downs.

I wish I could have stayed like this forever, holding my two boys. This is how a good portion of our inpatient stays go. Dakota is a big-time mama's boy and won't let me go. One twitch on my part and he's sitting up crying in his sleep. He'll stay like this even when we go home. He's traumatized. He's scared that they are going to come in and touch him.

But, baby brother needs mama, too. And here I find myself at home staring into the most precious baby's eyes yet feeling absolutely heartbroken. See, I had to peel Dakota off of me to bring the baby home tonight. Sure, daddy is there with him, but he's not mama.

"MAMA! NO! MAMA! I WANT YOU MAMA! STAY!" I could hear his cries all the way down the hall as I left. That look in his eyes is imprinted in my mind, like I betrayed him. My heart is so torn, I shouldn't have to choose. But I have a breastfed baby and logistically haven't been able to stay at the hospital overnight since he was born. So, for tonight as usual, daddy will have to do.
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$14,400 of $20,000 goal

Raised by 103 people in 9 months
Created June 15, 2018
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