Noah's Story

Noah, the middle son of 3 boys, was 12 years old and in the 7th grade during the fall of 2019; his days were full of school, soccer practices and games, improv classes, and rehearsing for his theater company’s upcoming performance of “Tuck Everlasting”. After starting to have some occasional headaches in late July, they became more frequent by early September, and by the weekend after Labor Day, they were accompanied by vomiting, especially after his soccer practices. Thinking the symptoms were from dehydration, Noah’s dad took him to his pediatrician’s walk in clinic on Saturday morning, September 7, after symptoms continued to persist and worsen. As the pediatrician flashed the light in Noah’s eyes, she commented that she did not like the way his left eye was not constricting properly when the light shined in his eye and wanted to refer him to see a Neurologist at Vanderbilt Children’s Hospital in Nashville, TN, just 30 minutes from their home in Franklin. Four days later, on September 11, 2019, Noah met with the Neurologist at Vandy who confirmed there was something keeping his left eye from constricting properly and ordered an urgent, but not emergent, MRI. The next day Noah went to an eye doctor to confirm that there was nothing structural causing his restricted pupil and there was something unknown causing pressure to build up behind his optic nerve. One week later, on September 18, 2019, at 6 pm, Noah had an MRI that revealed the reason for his headaches and vomiting; he had a brain tumor.

Noah was immediately admitted to Vanderbilt Children’s Hospital that evening following his MRI and after a day full of doctor’s appointments on September 19, he had brain surgery on Friday, September 20, 2019, to safely remove as much of the 5 cm x 5 cm tumor from his right thalamus as possible. After 2 nights in the ICU and 2 more on the regular floor at Vanderbilt, Noah went home to finish recovering from brain surgery. Noah’s parents received the worst news of their lives a week later when the biopsy report came back; Noah’s tumor was a rare, newly discovered, highly aggressive, terminal brain cancer. Noah was diagnosed with a Diffuse Midline Glioma of the right thalamus with an H3 K27M mutation and given 6-12 months to live. Their lives were shattered in a moment hearing this news of Noah’s medical diagnosis, but they knew God was the ultimate author of Noah’s story and the Great Physician. Noah’s oncologist continued to share that they would do all that they could to treat Noah, but traditional treatment was not a cure and his best hope for keeping the tumor stable was through a trial at the University of Michigan.

After recovering from brain surgery, Noah had 30 rounds of radiation and 42 doses of Temodar chemotherapy at Vanderbilt that started on October 16, 2019, and ended the week of Thanksgiving. After his last appointment at Vanderbilt, their family traveled to Chicgo for Thanksgiving to see the musical "Hamilton", one of Noah's favorites.

Noah’s family went to Hawaii on a MakeAWish trip in early December and immediately following their reutrn to Tennessee, the family traveled to Ann Arbor to meet with the team of doctors at the Chad Carr Pediatric Brain Tumor Center at the University of Michigan and enroll Noah on the ONC201 trial. Thankfully Noah’s trial allowed him to remain at home in Franklin and travel to Michigan every 3 weeks for follow up visits. Every 9 weeks Noah had to have an MRI to check the stability of the tumor and he was required to have a Lumbar Puncture (Spinal Tap) to check his cerebral spinal fluid (CSF) for evidence of disease. During this time Noah was able to attend school at home though his homebound teacher, he continued to be active in his theater community, CYT Nashville, and he played Pickleball any chance he got! Noah had very few tumor symptoms and by all accounts was a living miracle.

After a successful, stable scan in February of 2020, Covid hit and the family was grounded from travel to Michigan for appointments, so the next several months they stayed close to home and Noah was seen at Vanderbilt. On April 21, 2020, Noah had a scan that revealed more bad news; the original tumor had grown and also progressed into 2 new locations in his brain on his cerebellum and brain stem. After a phone conference with Noah’s doctor at Michigan following the results of the scan, and some news that came from sequencing done of his tumor by Michigan, Noah was permitted to stay on the ONC201 trial and start another daily chemotherapy pill, Rozlytrek (Entrectinib), in hopes of keeping the tumors stable. Noah started the new drug, along with his trial drug, on May 15, 2020. By late June, Noah was able to travel back to Michigan for his appointment that included a Lumbar Puncture and another MRI, which revealed more unfavorable news; the tumors were continuing to grow. After discussing options with his team of doctors, Noah stayed on the drug combination of ONC201 and Rozlytrek in hopes that the growth that was seen on the June scan was from growth that took place prior to Noah beginning the second drug. Miraculously, even though the tumors were continuing to grow, Noah was able to continue living life to the fullest.

By July of 2020 Noah started having sporadic vomiting episodes, which could have been a result of the drug combination or tumor progression, or both, but doctors were unable to say for sure. In late August, after a family vacation to Fishtown in Leland, Michigan, Noah had his last appointment with the University of Michigan. Another MRI on August 25th showed the tumors continued to grow and progress and there was no more benefit of the ONC 201 trial. The family was faced with more bad news and no clear next step in their journey with Noah.

Once Noah returned home to Franklin, Noah’s mom frantically started searching for more trials and options for treatment. St. Judes to Johns Hopkins, Seattle Childrens to UCSF, Duke to Germany, every phone call or email was laced with the same regret; “We’re so sorry you’ve been given this diagnosis. We don’t have a cure, but we can try to help give Noah more time.” She connected with other moms on the DMG/DIPG journey and started researching holistic approaches to treating his tumors; CBD oil to turmeric, and even canine dewormer were options as desperation started to take over. They knew God could heal Noah on earth and give him a medical miracle the way they had been praying all along, but the unanswered question was would He? How would He see fit to answer the pleas and prayers, begs and cries for Noah’s earthly life?

Labor Day 2020, spent kayaking on the Buffalo River with friends, was one of Noah’s last good days before the growth and progression of the tumors started causing symptoms that landed him in the emergency department of Vanderbilt’s Childrens Hospital on September 17, 2020, one day shy of exactly one year since his initial diagnosis. Noah was admitted for 4 days to get the tumor symptoms managed and under control. It was during that visit when his team of docs at Vandy suggested Hospice/Palliative Care and asked us to consider quality of life over quantity of life for Noah as we were looking for more treatment options.

The day before Noah was admitted I had a conversation with a doctor from Seattle Childrens, Dr. Nick Vitanza, to discuss a possible trial, Car-T Cell, for Noah and he recommended re-radiation as a possibility to give Noah more time. After discussing it with our team of doctors at Vanderbilt, Noah was scheduled for 10 more rounds of radiation that started the week after he was released from the hospital. During that time, trials were still being researched and discussed and the decision was made, after 3 confirmations from God and Noah’s medical team at Vanderbilt, that Noah would enroll in an immunotherapy trial at Duke University in Durham, NC. After the initial visit at Duke, Noah was feeling strong enough to travel to Disney World with his family for one last earthly vacation.

Noah’s trial at Duke started on November 9, 2020 and his first treatment landed him in the ER and a 2-night stay at the Duke University hospital due to Cytokine Release Syndrome (CRS) caused by the vaccine injections. After recovering, his family headed back to Tennessee for a week before returning again to Duke for Noah’s second treatment. They were able to manage the CRS better after the 2nd injection and Noah was able to enjoy Thanksgiving with his family at home. A week later Noah started having confusion spells that the doctors assumed were seizures and he started immediately on anti-seizure medications. The following week they made the 8 1/2 hour trek back to Duke for Noah to have his 3rd injection; it would turn out to be the last trip to Duke and his last dose of vaccine for the trial.

After Noah’s last appointment he started complaining that he was feeling “weird”, which doctors felt was his immune system fighting hard against the vaccine injections and hopefully destroying the cancer cells in his brain. The morning after arriving home from Duke, Noah woke up complaining of more weird feelings and his confusion spells took a drastic turn; he was frozen in one, unsure of who or where he was, unable to answer simple questions. Following a frantic phone call to the doctors at Duke and Vanderbilt, and a 911 call, the EMS was en route to pick Noah up and take him to the Emergency Department at Vandy. His parents were unsure if he would ever be cognitively aware again.

The hospital visit was challenging as Noah’s condition continued to decline and there was nothing that doctors could do to help him and no answers for the questions his parents had. A CT scan, MRI, and EEG left doctors with no clear answers or next steps. After 2 nights in the ICU Noah was coming back around cognitively and released from the hospital on Saturday, December 12th with a new anti-seizure medication regiment and hopes for a full recovery.

December was a hard month for Noah. With each passing day his confusion and “seizure” spells became more frequent, he started spending most of his days sleeping, and his vomiting increased significantly. Noah spent his days laying on the couch with his hands clinched around two gum containers, one filled with jolly ranchers, and a vomit bag never out of arms reach. He wasn’t aware of where he was or what was happening, which was a merciful blessing from the Lord.

Christmas 2020 was unlike any other; Noah’s health was declining by the day and on Christmas Eve Noah’s oldest brother, Nathan, and Dad tested positive for Covid. They quarantined to a room in the house, while Noah and Elijah, along with their mom, celebrated Christmas downstairs around their Christmas tree.

As they rang in 2021, Noah was no longer able to walk unassisted, his diet consisted of Capri Suns, bites of granola bars, and spoonfuls of applesauce, his face droop on his left side became more pronounced, and his speech became less clear. His eyes started having a hard time focusing and cognitively he was slipping away more and more. They continued trying different doses of anti-seizure medications to help the confusion spells but nothing brought any relief to Noah’s body. By January 4th Noah’s symptoms were full blown and he was admitted overnight to Vanderbilt for an MRI and another EEG study. He was weak to the point he couldn’t hold up his head on his own and the vomiting was uncontrollable. As the doctors approached their room on the Covid floor (because upon admittance to the hospital Noah tested positive for Coronavirus) they gave the news they said would always come; Noah’s cancer had taken over and there was nothing more they could do. They sent him home on January 5th, 2021, with a referral to hospice and less than a month to live.

Noah’s last 9 days on earth were full of prayers for mercy and healing. As his physical body continued to deteriorate, his family and friends stayed at his bedside praying and loving him; holding his hands, playing with his hair, and rubbing his feet. The morning before he went to heaven, Noah spoke his final words on earth to his mom, “I love you guys”. That same night, before he went home to heaven, friends hosted a worship and prayer candlelight vigil outside their home. A shooting star flew over their home, visible to all who were present that night, which they believe was a sign from God that the enemy was defeated in Noah’s earthly battle with brain cancer and Noah’s body was free from the bondage of disease. Noah breathed his last earthly breath on Thursday morning, January 14th, 2021, shortly after 7 am as the sun peeked over the horizon and peeked through the blinds into his room. Noah lived 13 years, 7 months, and 17 days on earth, and now he lives forever in Heaven.

The blessing and miracle in Noah’s journey is not only that he outlived the doctor’s prognosis by quality and quantity of life, but that he was able to carry on through the journey with joy, hope, laughter, and encouraging all those he came into contact with along the way. His smile always brightened every room he walked into and he never complained once about the cup God asked him to drink from. Noah was strong, creative, athletic, the most kind, tender-hearted, humble, servant-hearted, and genuine person you could ever meet. He loved and trusted God with his life and his journey; his faith never waivered. He was everyone’s best friend and he truly embodied the character of Jesus Christ. He cared more about other’s needs than his own and he had an ability to make you feel known, seen, loved, and valued. A moment with Noah was like being in the presence of Jesus Christ Himself. As our hearts break that he is no longer alive on earth, our hearts rejoice that he is alive in Heaven with God, and one day soon we will see him again. Until that day, when Jesus returns or God calls us home, we will choose to live in a way that honors God and celebrates Noah’s brave, courageous, and beautiful life. #NoahBRAVE

Listen to the Podcast

Noah's mom, Lori, tells his story in this episode of A Stronger Faith


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