WARRIORS OF THE MONTH

may 2023

Teddy has always been a key to our family. Robert Kelly-Clark and I knew that our little Teddy bear was the finishing piece to the masterpiece we had created, our family. To say that getting to  holding my sweet baby in my arms was difficult would be a gross understatement. Knowing that he would be our last child, I wanted to be surprised. Robert on the other hand needed to know.

Teddy never ceases to amaze us. Life with Teddy is always a surprise. Whether it's him trying to scale an object that may or may not be climbed or him being able to recognize letters and numbers at random. Teddy is a loving force to be reckoned with.

Teddy looked at me and I know every detail of my children’s faces. I thought that I was losing my mind. I looked at Robert and asked if  saw what I was seeing, that Teddy was developing a lazy eye.

So we set out to get an eye appointment for Teddy. We called and spoke to the pediatrician’s office and they gave us the numbers for ophthalmologist. I called and  explained the sudden change that we were noticing the soonest appointment that we could get was the end of January. We got him in to the optometrist on Saturday with the thought process of the physician to physician consult could possibly be faster. We were told to call first thing on Monday.

On November 6th our lives were turned upside down.

Sunday Teddy started acting different. His face started to droop and his speech got garbled. Then his gait became wobbly. Teddy underwent a 12 hour brain surgery on November 10th. We were so thankful that Teddy’s neurosurgical team were able to resect 90% of his tumor. The tumor that we were told was a medulloblastoma, a “good” cancer. We were told that it would be weeks before we got the pathology results back. On November 15th, our whole world 🌎 was shattered by the pathology results Teddy’s cancer wasn’t a medulloblastoma instead it was a diffuse midline glioma. We were told that we had three options to do nothing, to do radiation therapy, or medical trials. Teddy was in the hospital for twenty-two long days. He had multiple surgeries/procedures done during that stay and so many pokes. He is so strong!

Teddy started radiation therapy on December 7th and finished on January 24th. 30 treatments, 30 sedations, 30 npo mornings, 2 picc line exchanges, 1 line infection, 1 6-day admission, at-home iv antibiotics for 14 more days, and more pokes; these are a summary of the journeys that our warrior has endured.

We were so hopeful that his post-radiation MRI would show that his tumor was dormant, but it wasn't dormant it did shrink, but there were a couple of “flairs” that the team wanted to watch. We were told to go on his Make-A-Wish trip and make memories while our team strategize our next move. Teddy had another MRI that showed changes in his tumor and the images showed new spots. The results were a punch in the gut. We needed a plan B and maybe a plan C. Teddy had made so much progress in therapy. He wasn't showing any signs or symptoms that his tumor was growing. We got an MRI of his spine. This was the start of some good news in a very difficult time. His spine didn't show any signs of disease! It was clear!

Teddy started his ONC201 trial and is 2 doses in.

Teddy is the youngest child of four. He is enrolled to start kindergarten in the Fall. Lord willing. His favorite color is blue. His favorite animal “the muppet’s “. Teddy hates to wear clothes once he gets home. He loves to play on the playground. He has always had “leadership qualities “ that’s what we like to call his stubborn and persistent personality. Teddy knows what he wants and always has. His best friend is his big sister Catriona. He love to play with his cousins. He plays marble run with his big brother Bobby. He practices his selfies with his big sister Samantha. He loves to go to Target with mommy. His favorite game to play every night is wrestling with daddy.

march 2023

Bowen's journey with Praying Ninja Warrior began on the evening of September 26, 2022. The night before Bowen's life saving craniosynstenosis total cranial vault remodeling surgery.

We will never forget Bowen's response when Nick Apicella contacted Bowen to tell him he had become team number 708. Bowen's heart grew 10 times bigger that night. The following day, as he prepared to leave home for the path that lied ahead, Bowen simply stated. "I am proud to be on the Praying Ninja Warrior team."We should pray for other kids at the hospital, too." That moment and those words would change the course of Bowen's life and his sister Savannah's life too.

Bowen's brain was under immense amounts of pressure for years. The symptoms of his intercranial pressure was blindness and blurred vision, ringing and wooshing on the ears, severe headaches, skull pain, seizures, tourette like symptoms, papilledema, permanent eye damage, developmental delays and peace with Christ in it all.

Bowen's surgery required complete removal of the skull. This was interrupted with a complicated dura matter brain tear. The cause was due to his skull sutures closing too soon, and his brain grew into the skull. This would lead to hemorrhaging and fevers, infection and complete faith in God for healing. The thousands of prayers from around the world covered Bowen.The praying Ninja Warrior team never ceased in those prayers.The surgeon was able to remodel the skull with hundreds of plates and screws, creating new suture space for his brain to have space.

The healing and recovery time has been extended from 3 months and into a year at most, right now. Bowen's brain still has swelling, and that comes with difficult days. The days before surgery were harder than the days after. The healing was easy. The battle, advocating, and fighting for Bowen's health and future were stressful, difficult, and kept us on our knees with Christ. Bowen was a Brave Warrior in all of it, even asking Jesus to come into his precious little life and was baptized. He trusts God fully with his life and has never second guessed his journey with God and others. His craniosynstenosis story has changed many lives and still does today, as Bowen bares a cranial scar he calls, "his storyline." A jagged visible scar that bears the life of one brave boy

Savannah, being the sister that wears a cape in the family, never left Bowens' side in his walk. She joined the Praying Ninja Warrior Junior prayer team shortly after Bowen's surgery. She desires to pray for kids around the world fighting battles, like Bowen. Savannah's heart has matured in Christ through all she and Bowen have sailed through on the rough waters of their life. Savannah and her autistic, artistic ways have made our home and lives more beautiful than we could have imagined. God's plan for Savannah is greater than we can fathom because she is extremely talented, creative, smart and full of energy with a praying heart. Her presence lights up the room and the people she meets. Her heart for Jesus and others is immeasurable.

Bowen and Savannah are honored to be Praying Ninja Warrior Juniors

february 2023

Ashely “Biscuit” Pearson is a strong, funny, grateful, and loving 13-year-old from Greenbrier, AR. She is an 8th grade student at Greenbrier Junior High and is an avid softball player, where she wears her lucky #25 at shortstop and 3rd base. Ashley was recently diagnosed with malignant High Grade Glial Neoplasm in January 2022, which is a form of aggressive brain cancer. She loves spending time with friends and family, watching scary movies, shopping, and reading. She has said she lives in the best community and is so thankful for all the love, prayers and support she is receiving from her loves ones and others that she has never even met!

Ashley’s random seizures began three years ago, and she has seen her neurologist every 3 months since they began. Like many others with COVID, she began complaining of worsening headaches after Christmas 2021. In January 2022, her headache became so severe that she was taken to the ER where they found a softball-sized tumor on her brain. She was rushed to AR Children’s Hospital where she was then diagnosed with brain cancer.

After two brain surgeries and scans, it was determined that while the brain tumor had been surgically removed, she would need radiation soon to treat her brain and spine, where cancer buds are actively growing and causing Ashely a lot of pain.

Ashley required a special type of radiation that isn’t offered in AR. She and her family traveled to Dallas, TX in March of 2022 where she was treated with Proton Radiation Therapy for six weeks. When she completes radiation, she will return home to discuss chemotherapy with her oncologist.

Ashley currently goes to Arkansas Children's Hospital every 14 days for chemo.

Ashley has a long fight ahead of her but with people like you helping her through this battle, we pray she can conquer all the challenges she will face with people like you and God by her side!

january 2023

Kadince “Kadi” Klein is my 14 year old daughter, after battling osteosarcoma twice since 2019, she’s now living the best life she can even with the life long side effects from chemotherapy. Anyone that knows Kadi will attest to the fact that during all the painful times, treatments, surgeries, etc a smile rarely left her face and she brightened every room just as she did before cancer and just as she does now! Kadi has immense God given talent for art and enjoys free hand sketching, painting canvas’s, costume makeup and acrylic nails, all self taught! She thus far is doing well being back in school and is in the eight grade this year!

 Kadis first diagnosis was osteoblastic osteosarcoma of the left fibula, she endured 28 weeks of intense chemotherapy and a surgery to remove 2/3 of her fibula and her perennial nerve as it was wrapped around the tumor, this left her with permanent drop foot. Kadis disease hadn’t spread and she had good odds but unfortunately she didn’t stay free of cancer long, just three short months after ending treatment a large lesion was discovered on her right iliac crest in her pelvis. The cancer changed from osteoblastic to chondroblastic osteosarcoma making it much harder to treat as that’s considered a chemo resistant subtype, she also had disease in several nearby lymph nodes. The odds were stacked against her and we were told that even if they could get her to remission a second time she’d never remain there long. Although chemo resistant that was our only hope, Kadi then had to endure another 6 months of two chemo drugs that were much worse than the ones she had prior and I truly thought the treatment may take her before the cancer did. In typical Kadi fashion she fought with all she had and she got through it! The best part is upon her amazing orthopedic surgeon removing the lesion without affecting her ability to walk and without having to amputate, pathology revealed the lesion was 100% dead, not ONE single active cancer cell in a chemo resistant tumor! God showed up and showed out!

 God has blessed us with another miracle as we found out on October 27, 2022 Kadi is officially two years NED (no evidence of disease) against all odds!! She has been diagnosed with early stage renal failure and cardiomyopathy from the different chemotherapy she received yet at this time she’s stable in those areas.  As of lately she’s experienced some pain in her left pelvis, unexplained weight loss and random vomiting spells so we are as always turning to our Almighty Father and praying that these symptoms aren’t cancer related. He will see us through no matter the circumstances as He always has and always will! We’re grateful to be going into 2023 with the blessing of being by each other’s side, having a home, food in our stomach’s plus so much more!

 We pray diligently for the families who are still in the trenches or whose children are now angels and as a cancer Mom I dedicate a lot of time to raising awareness and helping in anyway I can! Thank you for reading our story and we covet any prayers sent on our behalf.

God Bless

decembeR 2022

As Praying Ninja Warrior Foundation continues we stand by these families during and after!!!

Mighty GUS…U will always be remembered here

From his parents Kayla Britton:

The parents of Augustus Britton said it’s because of their son’s strength he will continue to bring joy to others battling cancer after his death.

Kayla and Bo Britton, parents to 6-year-old Gus, are grieving the loss of their child who died last Wednesday on Nov. 23rd.

“I think it’s still pretty surreal.” Mrs. Britton said. “Gus is amazing, he is a light, he brought joy to everyone he met. He was goofy.”

MEMS renames street to honor the one-year anniversary of employee who lost his life on the job

She added Gus was diagnosed with Stage 4 High-Risk neuroblastoma on Jun. 14th, 2019. Then on January 6, 2021, Gus relapsed. His cancer had returned to multiple places in his body and over the course of the past month. Mr. Britton said he could tell his son’s health wasn’t doing well.

“Gus had cancer over half of his life.” Mrs. Britton added. “When you’re told your child has a 50-50 shot of making it out of this diagnosis and then he relapses and you’re told he has no chance of making it out.”

NOVEMBER 2022

Londyn Buss diagnosed with DIPG Brain Cancer May 2021. Londyn is 13 years old and prior to diagnosis she was a dancer, cheerleader, played volleyball, played the violin, attended church camps and was very involved in the community. After diagnosis her attention was directed to help all kids in the battle. Londyn has helped paved the way for others battling childhood cancer by raising awareness, demanding better treatments, and telling doctors what needed to be done for others. Waiting for long MRI results needed to change, pushing doctors to fight harder for treatment for all, and telling everyone how hard it is to be a kid in the battle. Everyday is a struggle but also a gift. We thank God for everything and we try and spread kindness, and love.

september 2022

Piper was a healthy 10lb baby born with a foot condition that we weren’t quite able to understand or find answers for. Then, on December 11, 2017 five years to the day that she was released from the hospital when she was born she was admitted to the hospital when doctors found a tennis ball size tumor between her hips. Later, it was identified as a rare cancer - undifferentiated spindle cell sarcoma. With no protocol and no surgical way to remove the tumor, Piper started chemo in January 2018 under the care of top physicians at Arkansas Children’s Hospital. God was good providing doctors who were open to new forms of treatment and to holistic forms of treatment and welcoming to God’s ways in her health. Piper stayed healthier than a lot of children in her position and with His direction, she was able to avoid many medicines typically given during chemo. She remained on chemo for 2.5 years when it was decided after seeing no growth in the tumor to stop treatment and see how her body grew. In December this year, we plan to celebrate five years since her diagnosis. This is tremendous, because we were told only 5-10% of children with her condition, with a tumor that could not be removed, were alive after three years. Now, here Piper is five years after diagnosis alive and growing. Piper has endures much in her nearly 10 years and her body has scars and chronic pain but through God’s grace, she is resilient and strengthened to face each day. Piper participates in church activities, rides a bike, practices jujitsu, and recently started dance classes. She is bright, observant, and endearingly witty. Our family looks forward to the grand plans God is fulfilling in her through her life and through her conditions that make her uniquely capable to show us His goodness.

AUGUST 2022

David Asher-Blocher, 10, of Independence, Kentucky, was diagnosed with DIPG, an incurable form of brain cancer on Thanksgiving Day 2020. After an 8 month battle, including radiation, surgery and clinical trials, he passed away on August 5th 2021. David was an avid outdoorsman, fisherman and lover of all things nature. He worked tirelessly on trash removal and trail maintenance in Daniel Boone National Forest and was given the honor of becoming an Honorary US Forest Service Ranger for Daniel Boone National Forest. An honor given only to two other civilians in the United States, Betty White and Arnold Schwarzenegger.

David was awarded the prestigious arrow of light from the Boy Scouts of America, named an honorary Kentucky Colonel and made a Commonwealth Ambassador, the highest honor bestowed upon a citizen in the Commonwealth of Kentucky.

juLY 2022

Savannah Westover

My name is Shannon Westover, mother to Savannah and Austin Westover. My 13 year old daughter Savannah was diagnosed with Osteosarcoma, a rare cancer normally found in the long bones of the arms and legs. Savannah was an even more rare case because hers was located in her left pelvic bone, sacrum, and L-5 vertebrae. She also had lung mets. Traditional therapy made her go chemo toxic, so she was moved to a study. This cancer was extremely painful from the start and only got worse by the day. She was diagnosed on May 3, 2017. She did not believe in God. She would get angry the more people that were sent to pray for her. Then Nick came into our lives. He came over, then the amazing thing happened. She asked him to come back. I think she wanted to believe, but she just did not. Then one day she asked Jesus to come into her heart. She had also done this with my sister in law
Yvonne. She decided she wanted to be baptized. By this time she was 14, her cancer had spread to many places, and she was in so much pain, and wheelchair bound. I also chose to be re-baptized with her. Nick worked everything out. Brandon baptized me, and Nick baptized Savannah. She passed July 20th 2018. I was thankful she was no longer in pain and suffering, but loosing her hurt more than I could process. I was devastated and hit my own dark rock bottom of brokenness. I read and read and searched for ways to help myself. I found While we are waiting for bereaved parents, and I got my answer. There is hope for all in our children’s stories. And when i broken down so low i can not do this without God. He grieves with me. He helps my son who has suffered greatly since his sisters death. God just asks us not to sin in Grief. There is no time limit on grief. Nick and PNW did not leave us when Savannah died. They have stood beside us and kept us close in prayer. I know it is time to share our story.”

Shannon Westover (Savannah’s Mom)

june 2022

Going BACK TO THE BEGINNING..
I cry because God has completely changed my life through the inspiration of one amazing little girl. It’s what we all strive to do our whole life is to be a true witness for Jesus Christ to help someone come to Jesus or be more like Jesus!
June 13 2022 will be 6 years in the PNW ministry..it started off with a simple prayer.to the present day (2190 days praying for her for 6 years! I need to write a book on this but..God can do a lot with a obedient servant of Christ!
We now pray for 700 kids and families that are greatly effected by cancer and other diseases..
Thankful for all the support and financial donations to be able to help many in need!
But most importantly praying with so many people and watching there lives change!
Because of one amazing little girl named EmStrong!

Testimony from Emily’s mom Stacy Ayers

I’ve had many people over the years ask me at one time or another how I know Nick from the Praying Ninja Warrior Team. They ask if he’s related to us. I think the reason why I get these questions is because people have a hard time grasping the fact that someone not related to us would be so diligent in prayer for us. This very fact speaks to where Nick’s heart and compassion for these kids really is. There are two words that stand out to me when I think of Praying Ninja Warrior Team and those two words are Dependable and Accountability.
When Emily was in some of her worst of times during her bone marrow transplant, I could always count on Nick to post asking for prayers for her. There was one night in particular that I can remember. Emily had one of her worst nights ever. I slept maybe an hour that night, but mostly cried all night worried about her. I remember looking down at my phone and seeing a daily post from Nick about Emily and something right then gave me peace about our situation. I completely believe that God uses people and situations to speak to us. Another night, I remember being worried about Emily’s platelet recovery being so slow. I opened to a post that Nick had shared from another bone marrow transplant survivor asking if anyone else had low platelet counts post transplant. It always just seemed as though I could depend on Nick to be in prayer for Emily always and always at the right time, led by God. This has happened a number of times going on three years now. Dependable……yes, indeed.

My other word would be accountable. We knew Nick from Arkansas through our kids love for the game of soccer. Emily’s older sisters and Nick’s son played at the same club when we lived in Arkansas before moving back to Florida. Sports was our connection. Nick, upon reading that Emily was sick, was inspired to train and compete for some pretty hard core races, all while doing it for Emily. What he may not realize is how he in fact inspires these kids to train and fight in the battle they are in with their specific disease. This was the case for Emily. We run, train, exercise, walk, etc…… just to keep fit. Emily understands that God healed her and feels it is her responsibility to take good care of the body that He healed. She, like Nick, loves nothing more than to exercise for the kids. If she feels her exercising motivates other kids to get up and get moving, then she is happy and more motivated herself. Nick’s passion to train for the kids helps hold Emily accountable to do the same.

MAY 2022

PNW kid of the month
Logan

Logan is our Hero and the bravest person we know! Logan was diagnosed with Ewings-like sarcoma in Oct of 2019. It originally started on his rib and spread to his diaphragm. We were immediately connected to a sarcoma team at TX Childrens hospital where he began treatment. His treatment consisted of 14 rounds of extremely intense chemotherapy, surgery, and radiation. After the induction phase, the tumors had shrunk some (not enough for the Dr’s to be happy, but enough to move forward) and Logan was scheduled to have surgery to remove the tumors. However, during this surgery, it was discovered that his entire chest wall was completely full of disease. The surgeon came to speak with us in the middle of the surgery to explain what he was seeing. He said he had never seen that much disease in a chest wall cavity and it appeared that the tumor had exploded in there. Due to the that, he was not able to remove all the tumors, and the surgeries needed to be done in phases. We were absolutely horrified and scared beyond belief! He was only able to remove the tumors from the diaphragm and some of the lining from the chest wall. Recovery from the surgery was a little difficult at first for Logan, but this kid is seriously a warrior. Within 5 days, he was up and walking around the hallways that we couldn’t even keep up. The next steps for Logan was to recover from this surgery in order to be well for the next surgery in which he would have 3 partial ribs removed and to have his chest wall rebuilt using his abdominal muscles. So 2 months later, there we were again.. going through another major surgery. And in true Logan fashion, showcasing his bravery and positive outlook on this entire journey.. his first words after surgery were “wow, this surgery was easier than the first one!” Within 3 weeks, Logan started his 6 week radiation treatment to catch any residual disease that was left over from both surgeries and chemotherapy. Pathology from his tumors showed that he had several mutations. He did not fit the mold of Ewings or Ewings-like, but given the rarity of his cancer, they had no other category to place him in. During treatment after receiving these reports, we reached out several Sarcoma specialists and hospitals to review pathology and see if we were on the right path. Unfortunately, no one had ever come across a case like his, so the recommendations were to complete the treatment we started as he did have some response. By July 2020, Logan was declared NED (no evidence of disease) and we were on a wait and see basis. This didn’t sit lightly with us, so we reached out to one of the world’s best specialist that had been following Logans case and he recommended a maintenance plan for 6 months. So in Oct 2020, Logan started maintenance therapy. His quality of life and healing from the toxicity began to improve. After maintenance, Logan continued to stay NED until 6 months later (Sept 2021) when he relapsed to a lymph node near his spine. Since September, Logan had a biopsy and started a targeted therapy. Due to the fact that we had done more research into his pathology, the specialist recommended a less toxic therapy that specifically targets what drives Logans tumor. Scans in Dec 2021 showed the therapy was working and had less cancer activity. He recently had surgery to remove the tumor (lymph node) as well as underwent a very targeted radiation to clean up that area where microscopic cells may be. Today we are proud to say that he is considered NED again and will continue the targeted therapy he started in Oct 2021. Given the extensive treatment that Logan has been on, I can honestly say that not one time has he complained, cried or asked why him. He has always kept the most positive attitude and outlook on this journey. So much, that we have learned to follow his lead. We take it day by day based on him and the way he has chosen to fight this battle. Which has been nothing short of the most inspiring heroic stance! We are honored to have Logan has our son and so proud of him! We continue to pray that he will stay NED and never have to endure treatment again!

APRIL 2022

PNW Warrior of the Month!
Addison
Please read all the way to the bottom and pray boldly for this family and many others on the PNW Team.
(We do deeply are about the siblings and the families of our warriors as well)
Aubrey wrote something from her Perspective..
She is effected greatly, but she is so strong for her sister with deep care.
We probably need to make her a PNW Director one day!!


Addison is a spunky and sweet ray of sunshine. She is just like any other normal 9-year-old with one exception, she is fighting for her life. At just 6-years-old, she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and inoperable brain tumor that currently has no cure, on March 5, 2019. What was just a sudden inward-turned eye and a few headaches turned into the Varns’ worst nightmare. The standard treatment is radiation which can shrink the tumor and buy more time, but radiation only slows the progression down. Once the effects of radiation wear off, the tumor will start growing with a vengeance.
At the time of diagnosis, the prognosis was 9-18 months. Addison just celebrated 3 years post-diagnosis. To say she has fought with all her might to get here is an understatement. She has gone through 52 sessions of radiation unsedated, participated in two research clinical trials, countless pricks and lab draws, numerous brain and spine MRIs unsedated, and still continues to go to school every day and maintains all A's and B's.
Through all of it, she has remained positive and optimistic knowing that God is stronger than these “stupid tumors.” Her family is praying so hard for a miracle and has spent the last 36 months trying to live their best days ever. Addison has so much more life to live and it is her family's goal to show her as much of the world as they can and to make all of her dreams come true. This fight ain’t over!

Aubrey wrote this about 13 months after Addison was diagnosed. Some facts are not true any longer like “longest living on her trial” and “MRI’s every 3 months”. I guess Addison is still technically the longest living that was on her first trial but she is no longer on that trial due to spread to her spine. But this is her view point.

MARCH 2022

Aspen Warrior Princess
Aspen was diagnosed with DIPG in June of 2020. At the time of diagnosis her tumor was so large it was causing hydrocephalus. So, the following day she had surgery to have a shunt placed. I will never forget when the doctors came in to tell us about DIPG and told me she had maybe between 12-24 months left to live. I expected a treatment plan not a terminal diagnosis. 2 weeks later she had another surgery to have a port placed and the following day began her 6 week, 30 day radiation treatment where she had to be sedated every day. She handled radiation great and it shrunk her tumor significantly. In October of 2020 we temporarily moved to Seattle for a clinical trial that we were hopeful for. Aspen had to undergo brain surgery again and have a tumor biopsy to be on the clinical trial. She did great and the next day we were released to go “home”. We were there for about 6 weeks, and then once we were allowed to go home we traveled back and forth every 2 months. In June of 2021 Aspens routine MRI showed progression of the tumor. We were kicked off the trial and left once again with little hope. She began radiation for a 2nd time in July and this time was able to do it awake without being sedated. She did great! And once again responded well to radiation with significant shrinkage to the tumor. We began a new trial medication in September 2021. From there on we haven’t had very many good MRI’s. In October there was a new lesion found on her lower spine, in December the brain tumor had grown slightly, in January a new tumor in the temporal lobe was found and in February she had a lot of symptoms arise and the MRI proved what we had suspected that all tumors had grown and she was in progression again. Aspen just had surgery on her port to take out her old one that was not functioning and replace it with a new one. We will begin radiation for a 3rd time next week and pray all goes well and relieves Aspen of her symptoms for as long as possible.
Needless to say it’s been a rough road for all of us but Aspen is such a trooper! She has had countless pokes, blood draws, sedated MRIs, radiation treatments, surgeries, among other things and she comes out even more determined to fight this monster we call DIPG! She is so strong, caring, loving, and fierce! She has a strong love for animals of all kinds. She wants to be an “animal rescuer” when she grows up. She is so smart and creative and has SO much to offer this world, we just pray she gets the chance.
She is our hero, our baby girl and we love her beyond measure!

FEBRUARY 2022

Warriors kid of the month:

I found out at 20 weeks that our son Emmett would be born with severe heart defects. Emmett was born on January 16th 2016 and had his first, 10 hour long open heart surgery at 2 weeks old. At 6 weeks old he had a trach placed and came home at 10 weeks old with a ventilator. At 5 months old he was life flighted to Michigan from Utah where he would stay for 3 months and had 2 very big airway surgeries. He was then able to come home but at 19 months old he would need yet another massive airway and heart surgery that only Boston Children’s Hospital could do so Emmett was life flighted to Massachusetts where he had a 16 hour heart and airway surgery and spent 5 weeks. He was discharged on October 20th 2020 and he's been home ever since. Were incredibly greatful for Boston Children’s Hospital for saving our sons life. It's been a very long road and with so many ups and downs but Emmett is here, and stable and for that we're forever greatful. Emmett is currently having issues with his right mainstem bronchial, it's being compressed by his subclavian artery and causing some significant issues for him. We're currently reaching back out to Boston Children’s and praying they can come up with an plan for him to help his airway compression.

january 2022

Warriors kids of the month
Dana and Lydia

I want to thank God for his faithfulness and everyone who prayed for Dana and Aries, and my family and continue to pray. December 10th, 2017, my youngest daughter, Dana Marie was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG). An inoperable, incurable brain tumor located on the brain stem. Usually diagnosed in children ages 2-10, Dana was 17 and pregnant. Dana had many miracles during this journey which can be read on her facebook page Pray for Dana. She went to be with the Lord April 22, 2019.
I look back now and see how God’s hand and miracles were so delicately performed during this time. We, my family and I are so grateful for prayer especially after the passing of Dana only 10 days later, my oldest daughter, Dana’s sister and best friend, Lydia Joy overdosed. Lydia went to be with the Lord May 5, 2019. My God is faithful. There are some dark days and things get tough, but as a child of God, I am truly thankful for Him and his people. The PNW team has continuously prayed and help support us through all of this from diagnosis to today. The prayers of a righteous man availeth much. James 5:16
I continue this journey with prayer. Prayer for other children and families, as I and my family so need. Praying, donating and sharing God’s love. God bless.

DECEMBER 2021

'Bexlee-Kaye Harper Nash was born on June 19, 2017. At the age of years old; she was diagnosed with Stage 4 high risk Neuroblastoma. She fought this terrible disease for 2 very long years. Bexlee-Kaye gained her heavenly angel wings on November 18, 2021; her daddy and I were by her side every step of the way in the comfort of our home. She was so very tired and worn out from fighting this disease but now she is whole again and healed from that evil cancer. It seems as though cancer completely took her entire little life away from her and us as well. But she always remained so strong and courageous throughout the entire process. She was also the most amazing big sister to her baby brother Kamden. She helped take such good care of him and was the sassiest little mother hen we had ever seen. We know that without a doubt she is in the Lord's arms telling him all about princesses, unicorns, and mermaids. Which were her absolute favorite 💗. Her favorite colors were pink and purple; just as any other little girl. She always told us when her hair grew back from chemo that it was going to be pink and purple. I can just imagine her long, curly hair flowing in the bright sunshine with pink and purple strands just like she always hoped for. We always taught her to say 'See you soon' instead of telling someone bye bye; because goodbye can sometimes mean forever on earth. Although; we are heartbroken and so lost without our sweet angel we both know that we will see her again someday. And oh what a glorious day that will be 💝' 

Bexlee-Kaye Harper Nash

06/19/2017-11/18/2021 

"This isn't goodbye; see you soon sweet girl"

NOVEMBER 2021

 Micah was taken to the hospital on December 20th 2019. We found a large tumor above his adrenal gland and cancer in his lungs. He underwent a very serious surgery to remove the tumor. After it came back from pathology we were told the cancer was stage 4 Adrenal Cortical Carcinoma, an extremely rare and dangerous type of cancer.

We heard God very clearly through our journey in Micah’s healing. Step by step God led us. People had dreams about Micah nonstop giving us direction on how to move forward. We “knew”
things that there’s no way we should have. We listened intently because we were told that he had less than a 10% chance to live. The strong and intense chemotherapy regimen that he was only really suppose to give us more time IF it actually worked.

The doctors came in and told us because of the rupture before and the spill during surgery they expected to see a lot more cancer but that we’d continue on protocol. When the scans came back they were “cautiously optimistic” and at that point he was NED. We didn’t know it because there were a few spots in the lungs but we later found out one was a swollen lymph and we assumed the other to be as well. Both gone.

We learned how to support Micah’s body well through treatment with nutritional therapy. Micah didn’t have any major issues in treatment and we are so thankful for that.

Micah continues to be NED and we are coming up on 15 months off of treatment. We work VERY closely with our integrative Doctor from Zuza’s Way Integrative Care for his after treatment care. He is on many therapies to prevent reoccurrence and aid in healing from the brutal chemotherapy protocol that he endured.

He is high energy, extremely smart, loves running around with his siblings, and he loves camping because being outside is his most favorite place to be.

We are thankful for all of the wisdom that God gave us in all of the hard things. His faithfulness brings me to tears of gratitude every-time I think of our journey. We are extremely thankful for ALL the people who have prayed fervently for heaven to come to earth on Micah’s behalf.

OCTOBER 2021

Natalie “Nat” Lynn McMillian
11/27/03 - 10/11/19

December 4th 2018.....This day became the very worst day our family could have faced. Nothing could have prepared us for the news that was about to come. From what we thought was the flu became meningitis then encephalitis to a mass to a mass on the brain stem to a tumor.....then to the very worst diagnosis possible. On 12/6....After careful review of Natalie’s MRI, we were told that she had Diffuse Intrinsic Pontine Glioma (DIPG). We were told that the tumor is inoperable with no cure and basically the survival rate was less than 1% for this type of cancer. We were told that this is the worst diagnosis you could give a child. After the wind was knocked out of us and our hearts completely shattered, we picked ourselves up and remembered who was in charge our God. We prayed for a miracle for our sweet Natalie and we saw them daily . We knew our Lord and Savior was walking her through this. We saw his healing power every single day! We were so thankful for her progress she was able to talk, eat regular food, move all extremities....Nat’s tumor did not grow but she had lots of issues with kidney stones and a pseudomonas infection she acquired during a hospital stay. She ultimately became septic following a kidney surgery and lived 30 days after the sepsis diagnosis;however, just as Nat always said God and I got this and they had the tumor under control! We never gave up hope...we followed Nat’s lead she was the boss. We prayed for whatever she needed each day to get her through this terrible disease. Backing things up a bit...Natalie was having trouble walking, talking and a terrible headache prior to rushing her to the ER in our hometown. She was taken to Batson Children’s hospital via critical care team. Upon arrival she was placed on mechanical ventilation and required insertion of tubes to remove the fluid off of her brain. We spent 20 days in PICU and were then moved to a private room on 3c at Batson to complete her radiation treatments. She improved daily! Our hearts were broken but at the same time overjoyed from the love and kindness surrounding us.

DIPG is the worst ,ugly, evil brain tumor in childhood cancer. Nat was an easy going, Faith filled, 4-wheeler riding, beautiful young lady who would light up the room with her smile! Throughout Nat’s journey she never once asked WHY ME she just said God and I got this!! God and Nat placed so many stepping stones in place along the way she painted a picture the Christmas prior to her diagnosis Grey circle in the middle green on the outside and Never Give Up written in the center! She also had a homework assignment to pick her character trait and her favorite Bible verse Nat chose her character trait as Strong and Joshua1:9 as her chosen verse. We love and miss Nat beyond measure but we know we will meet her in Heaven when our work here on earth is done and we will keep our promise to continue to share Nat’s testimony and move mountains to help the DIPG world make advancements so that other families don’t endure some of the nightmares we did along the way. When we say #FightLikeNat we mean put God first, stand firmly on your Faith, & let go and let God because that’s how Nat fought her battles. We are forever blessed to have been chosen to be Nat’s parents she taught us more about life, Faith and unconditional love than we could’ve ever taught her!!!

Sadly Nat gained her wings October 11, 2019. She is Forever 15.
Natalie (Nat) Lynn McMillian
November 27, 2003 to October 11, 2019

#NatStrongForever-Joshua1:9
#GodandNatGotUs
#FightLikeNat
#PNWFamilyAlways