Brennan is the 11-year-old son of Matt and Kari Schulte, brother to Braylon (12), Bryson (8) and Braxton (5).Brennan survived a placental abruption in-utero at 20 weeks to later be born a whopping 10 pounds, 4 ounces.He has always been a tough fighter.He enjoys playing basketball and baseball - and touch-football in the yard with his brothers and cousins.He attends Immanuel Lutheran Church and School, currently a 5th grader.His teacher said he’s the most “meticulous” student she has had yet.He denies liking homework or learning, but works hard to make sure his work is accurate and neat (and secretly enjoys learning about history and science).He’s a determined kid, with a dry sense of humor. On Halloween day of 2018, Kari took Brennan to his pediatrician, Dr. Beal.Brennan had been experiencing a couple days of early morning vomiting.Matt and Kari suspected possibly a stomach virus, but something felt “off.”Dr. Beal didn’t like the looks of Brennan’s optic nerve and ordered an MRI for that afternoon.It revealed a large tumor in the middle of Brennan’s brain.He was rushed to St. Louis Children’s Hospital.The tumor had cut off the drainage system for his brain and the fluid build-up had reached dangerous levels (causing the vomiting).Brennan underwent brain surgery for a shunt placement and a biopsy of the tumor. Brennan was diagnosed with brain cancer, specifically a juvenile pilocytic astrocytoma (JPA) tumor, which was about the size of a golf ball.It is in the middle of his brain, pushing on his hypothalamus and optic nerve.Due to its location, it is considered inoperable.A typical JPA should not metastasize into other tissue and should be slow-growing, however, it is difficult to stop the growth of a JPA throughout childhood and adolescent years.Continued growth of the tumor would most likely impact Brennan’s hypothalamus first, potentially causing uncontrollable hunger and hormone regulation issues – including diabetes, premature puberty, sleep disorders, and a long list other negative effects.The tumor has caused Brennan to lose some peripheral vision and could continue to cause vision loss.Continued growth could impact Brennan’s cognitive function and motor skills. Brennan underwent a year of chemotherapy.The treatment reduced the size of the tumor by about a third.His family thanks God that the tumor has been stable since the end of treatment (about 2 years).Brennan had MRIs every 3 months through treatment and every 6 months since.He will require at least yearly MRIs for life.Brennan’s most recent scan showed tumor stability, but some of his optical testing showed increased pressure on his optic nerve.He will return for additional testing in March, 2022.The family asks for specific prayers of stability (or reduction) of the tumor and protection over his optical nerve.
Torri Tripoli 2019 Trivia Recipient
Mandi and her husband Phil were high school sweethearts. They started their family in 2014 by having a boy named Tyler. Tyler is currently 5 years old and loves to play sports. He has always wanted to be a big brother, but even more so to a sister. In fact, Tyler told everyone before Mandi was even pregnant that his mommy was going to have a baby and he would have a sister someday. When they introduced Tyler to his new baby sister, Torri, on March 1st, 2018, the connection between them was instant. Tyler absolutely adores Torri and can make her smile from ear to ear just by walking into the room.
Torri has big brown eyes, and brown hair with just a touch of red. They now believe that the touch of red symbolizes her fire to fight! She is a happy, playful, walking, talking, and enjoying life toddler. She loves taking baths, playing in water, and eating (especially cookies)! Torri really enjoys being outside and around other children. She is one tough cookie both mentally and physically but is so sweet in nature as she loves to give the biggest hugs.
Torri was 13 months old when Mandi brought Torri in to the Peditrician for what they thought was a little cold and possibly pink eye. The doctor showed concern with Torri's extended belly which Mandi and Phil attributed to her love for food. After performing an X-ray, it showed her little belly built up with stool so they put Torri on Miralax. Three weeks passed and no signs of improvement had shown. Her belly continued to be distended. Mandi and Phil decided at this point to see a GI specialist at St. Louis Children's Hospital. The doctors at Children's didn't feel things were adding up so they sent Torri downstairs for an ultrasound. According to Mandi, the next moments were like out of a movie. They put them in the smallest room ever and two doctors sat down quietly and slowly explained to Mandi that they had found a very large mass in Torriʼs abdomen. Without hesitation, they would be admitting Torri to the Oncology floor right then and there. In that moment, Mandi can't recall the words that came out of her mouth, but she will never forget the feeling. The feeling of complete devastation, disbelief, and fear that swept through her entire body.
The real waiting started as the doctors began to start the process of diagnosing Torri. The Tripoli family waited and waited as they took every test under the sun. After a week and a half of being admitted and running test after test, Torri was diagnosed with Stage 3 Neuroblastoma of the Abdomen. If this news wasn't hard enough they were then told the cancerous tumor in Torri's small abdomen was so massive it was wrapping around her main aorta, making it inoperable due to its size and location. The decision was made that Torri would start with one cycle consisting of four rounds of chemotherapy in hopes to shrink the softball size mass. The Tripoli family hoped that the tumor would shrink enough that the doctors could remove it with surgery.
As of today, Torri has finished her second cycle of four rounds of chemotherapy. The surgeons believe it is still too dangerous to remove the tumor at this time, so Torri is looking to go to a specialist in New York that will hopefully be able to remove the tumor safely and effectively.
Even after all Torri has been through these last few months, she is not letting the chemo or anything else get her down. She still has her appetite, is very active, sassy but sweet, and still has all of her crazy hair! She takes her medicine like a champ and usually lets the nurses do what they need to do. Torri is truly amazing and is showing that she has the strength to fight her cancer head on.
We all know life has its ups and downs but watching your child fight for their life on a daily basis is one of the hardest thing to do as a parent. Parents hate to feel hopeless in any given situation. We like to believe and think there is always a solution to every problem. Unfortunately, when having a child with a life-threatening disease or illness, the solution may not turn out the way we were hoping for. As a parent you hope and pray that your child will grow up and live life to the fullest. This is when as a community we can come together and help these children and their families. We can show them there is hope, light, and support even during the hardest and darkest times.
The HHWs organization is so honored to support this strong little girl in her fight against cancer. Let's help show the Tripoli family what our community can and has done for past children and their families.
Zoey Noelle was born on January 23, 2018. Everything seemed great until the next morning when we awoke to the head NICU nurse at Mercy telling us that Zoey was in the NICU because they couldn’t regulate her temperature and she had low blood sugar. We were told that she would only be there for a couple days. Zoey was in the NICU for two very long weeks. When her second Newborn Screening numbers came back (NICU babies need Newborn screening done 3 times) they thought she had Tyrosinemia which is an error of metabolism and she wouldn’t be able to break down the amino acid tyrosine. This wasn’t the greatest news but we had to see a Genetics doctor at Cardinal Glennon Children’s Hospital so they could run more test. They concluded that Zoey had transient Tyrosinemia which happens often in newborns but it goes away within a couple months time. We were relieved! When she was around 8 weeks old her blood work came back again showing signs of liver dysfunction and high tyrosine levels. The genetic docs wanted her admitted to Cardinal Glennon so they could figure out what was going on. We were there for four days and on the last day we were able to get a genetics test completed and paid for by a drug company. What seemed like months later, we finally got the results: Mitochondrial DNA depletion with a mutation of the DGUOK gene. We were told the maximum life expectancy would be 4 years and this is an extremely rare genetic disorder. Needless to say, we were devastated. This is a basic explanation of Mitochondria but they are the energy factory of our body. There are thousands of mitochondria in every cell in the body. They process oxygen and convert substances from the foods we eat into energy. Mitochondria produce most of the energy our body needs to function. Basically, Zoey can’t produce enough energy to keep her major organs functioning. Right now her liver is mostly affected but she does have abnormal eye movement which indicates some brain dysfunction as well as metabolic acidosis (kidneys are not removing enough acid) which indicates some kidney dysfunction. Unfortunately, things took a very quick and devastating turn for Zoey. Sally and Mike were by her side, and after 6 short months of life (and way to soon) Zoey gained her angel wings on July 29, 2018.
Leo Fleming (Hannah's Helping Ways Trivia Event 2017)
Biography from Leo's mother Erin Drexler: "Leo was a normal active crazy 3 year old but on New Years Eve he developed a fever and remained sick throughout the entire week. He was diagnosed with the Rhino and enterovirus mid week and I was just treating his symptoms. On Jan 7, he developed a rash that made his face swell up and I took him to the ER where they drew blood work. They discovered his white blood cells were 220,000 (normal is 5,000-10,000). Being a nurse myself, I was in shock when the doctor told me those numbers and knew immediately what I was going to be dealing with. My next question to her was "which cancer do I want him to have?" She told me ALL (acute lymphoblastic leukemia). It is the most curable of all the Leukemia’s for children. In the next 24 hours, Leo became more and more fatigued, when they did blood work again, his whites had doubled to 440,000! After those results, he was transferred to St. Louis Children's Hospital where he was admitted to the PICU. This is when they preformed a procedure where they put an IV in his groin and proceeded to take the blood out of his body. The blood was put in a machine that would filter out the white blood cells and return the blood to his body. It is similar to a dialysis machine. Chemotherapy would come later but this was his best option since chemotherapy would not work quick enough. We still needed to find out exactly what kind of leukemia we will need to be treating. We had to get his white blood cell count down and fast. Once that task was thankfully completed and a success, our week long stay in The PICU was complete. We were then transferred up to the oncology floor. Leo was diagnosed with T-cell ALL with involvement of the brain and spine, if you were to have leukemia it is the one to have but is bad cell type. T-cells are killer cells in nature and are harder to kill. This just meant Leo had a harder battle than we first anticipated. Leo immediately began weekly spinal and IV chemotherapy and after 1 month of his treatment, Leo's bone marrow biopsy results showed he was Leukemia free. At this point, we would move forward with the 3 year treatment plan to keep it in remission. Leo was able to come home for a little, but had some challenges ahead of him. He had been in bed so long, he had to learn to walk again from being so weak. Weekly PT appointments and some cool Spider-Man orthotic shoes and he was in business again. Everything was moving in the right direction but in mid April, Leo was having belly pain and developed a low grade fever. A one day hospital stay turned into 3 weeks. He was treated for pancreatitis (a side effect of one his chemo) and also had rhino/enterovirus again. They ran some tests and discovered his leukemia had relapsed and it was back in his brain and spine. Leo had developed a little delirium and had a couple seizures due to the disease and /or complications of chemo. It was a very scary time. The news that it has returned was more devastating to me than his original diagnosis. Doctors and nurses were telling me if they had to pick a cancer for a kid, this is the one to get because of its cure rate, yet here he was still receiving weekly chemo and it came back? I knew it was highly possible for him to relapse, I just wasn't prepared for a relapse in 3 months of a 3 year treatment plan. This was to soon! I knew what his next option was medically, but as a mother when I heard the words Stem Cell Transplant my heart dropped. The first step was to get him healthy enough to start another round of chemo, but he was so sick at that point, I was terrified. In order to receive a stem cell transplant, ideally doctors would like the patient to be in remission. Leo was able to come home for a few mental health days before returning to the hospital. May 5 he was admitted to begin his month long process of strong weekly IV and spinal chemotherapy with some added radiation to his brain. My daughters got their blood drawn and unfortunately were not a match for their brother. However, from all the donors of Be The Match (who I will endorse from here to eternity!!) they found several matches to Leo and are currently working on finding the one that is best for him. It is a scary road ahead and one full of fears, tears, but hope that this will be my son's cure. He continues to amaze me with his attitude, I hope my stubborn energetic little man will use all his wonderful qualities to fight through this terrible disease and come out on top with a new immune system!! He is a fighter and I am so proud of him! #teamleo Update: Leo passed away August 4, 2017 at 6:15am. He is an angel baby now. His mother and father were with him the whole time and he was surrounded by love and kisses up to the very end. They will miss having their little boy but he is free of pain . Please keep them in your prayers. Their hearts and lives will never be the same. 💔
Alec was diagnosed with Osteosarcoma Bone Cancer in his right arm May 2015. Before cancer he loved to play sports. Baseball, basketball, soccer, and was looking forward to playing his first year of football the upcoming fall. After his diagnosis that all came to a complete halt. He spent the next 9 months back and forth to the hospital receiving chemotherapy. 32 rounds . On average 20 days a month in the hospital. He underwent a 12 hour surgery to remove the tumor and save his arm. He now has a cadaver bone along with lots of nuts and bolts in place of his humerus. He just had clean scans last week. No evidence of the disease is what they say. They don't call it remission for his type. It's so aggressive and reoccurs often. He has scans again in 3 months to make sure still no signs of it. Between completing chemo on Feb 22 of this year and getting his all clear scans his heart suddenly failed without warning Easter Sunday. He was having trouble breathing we thought he had pneumonia and upon first glance at the ER they did as well until his blood pressure started to drop and they couldn't get it stabilized. After his heart stopping for 2-3 minutes while being placed on a ventilator he was also placed on a machine to run his heart. He was heavily sedated basically medically induced coma for 33 days. 53 days in the hospital. He now has a device implanted to help his heart pump, called an LVAD . He is ineligible for a heart transplant at this time. He has to be 2 years tumor free first. He will have the LVAD device until either his heart improves or he is eligible for transplant. We are praying for a full recovery. He also had a brain bleed and a stroke caused by all the devices he had to be on to keep his heart working through this process. He is now relearning to walk and use his left hand and arm. He lost all left side function. Right now we have only been home from our unexpected 53 days in hospital and learning how to manage his device at home. He is doing well but has a long way to go.
Battle for Ella: A Party with a Purpose (April 2016)
Gabriella Ryan McNeil is an 11 year old girl who has been diagnosed with a malignant Stage III Germ Cell Yolk Sac Tumor. Ella had surgery a few days after her diagnosis to remove an approximate 5lb mass, her right ovary & a fallopian tube, as well as almost 2 liters of fluid off her lungs. At Stage III, the doctors said it was a very aggressive and rare type of cancer – only 2% of children are diagnosed. Ella spotted a sign on an office door outside of the BMT center (Bone Marrow Transplant) about a few hours after getting the news and it stated, “Just go with the flow” with some fish swimming around. That has been her motto since day one. She somehow has handled almost every path of this journey with strength and courage. As of right now, they are just keeping faith as they have announced Ella is now CANCER FREE.
Before being diagnosed with cancer, Ella was all about school, friends & sports. She was a multi-sport athlete playing Volleyball, Basketball & Softball. She had also just been given an offer for a spot on a local Club Volleyball Team! She loves reading and had just made the "A" Honor Roll for her first quarter of middle school. She was also so excited to enjoy the different team opportunities as a part of the Spirit Committee! Ella loves and lives for sports and cheers on her favorite teams: the Royals, Chiefs, OSU Cowboys, Arkansas Razorbacks and Golden State Warriors.
Brett Haubrich is a 12 year old boy who loves to play baseball and football. He enjoys watching his favorite player baseball player Matt Holliday play on his favorite team, the St. Louis Cardinals. When its football season he watches the Packers and has always been a Brett Favre fan. He has 3 siblings. An older sister who is 13 named Olivia, a younger brother Andrew who is 9 and a younger sister Ella who is 4. In his free time, along with playing sports, he likes to play pinball and arcade games. Some of his favorite foods consist of crab legs, ribs, and mangoes!
In June 2014 Brett was diagnosed with a Anaplastic astrocytoma grade 3 tumor in the thalamus part of the brain. He had surgery to repair the hydrocephalus, and thankfully he did not need a shunt. He was able to get the tumor biopsied which was a blessing since it is very hard to get too. They are unable to do a standard operation to remove it so it is considered 'inoperable'. The only option for him was radiation and chemotherapy. He did 7 weeks of proton radiation at St. Louis Children's hospital from July to Sept last year along with daily temador chemo. In October, he started chemotherapy 5 days a month. The tumor seemed to have shrunk and no longer present. Hoping he would be in remission, a month later a scan had shown the tumor and returned. In January 2016, Brett began a clinic trial in hopes to once again defeat his battle with cancer. Please continue to keep his family and him in your prayers daily.
Brett is a described as a very sweet and loving boy. He recently received his wish from the Make-A-Wish foundation, and he chose to be a priest for a day! Out of all the things Brett could have chosen he picked such a beautiful and meaningful wish. He is a very special boy so please take a moment to read this article about him and his wish. http://stlouisreview.com/brettswish
Tony Peters (HHW Trivia Event - 2015)
Tony is a seven year old boy that was diagnosed with Acute Lymphoblastic Leukemia on June 22, 2015. He will be receiving treatment for his cancer over the next three to four years. In January, Tony has started his maintenance therapy which entails s dose of chemo monthly. This is a big step for Tony and even better he was was able to return back to school. Tony is proving that he can beat his battle with cancer. Please continue to keep him and his family in your thoughts and prayers.
His favorite activities are hunting and fishing with his parents, gardening with his grandparents, building legos with his friends and singing. He is saving his money to buy a fishing boat.
Tony is a country boy that loves being outside. He loves biscuits and gravy, candy, and the popsicles at the hospital. He has a cat named Socks and a goldfish named Goldie that he won at the fair three years ago. He is hoping to add a dog to the mix as soon as his parents say yes! Tony is an only child but is surrounded with cousins that adore him.
He can be described as fragile as a flower but as happy as is the day is long! He is innocent but oddly mature for his age. He is a reminder to live in the moment and he demands everyone he knows all to do just that. His laughter will thrust you into being happy even when you feel like being sad. His giving heart will remind you that giving is better then receiving.
Jack Pimmel (HHW Trivia Night - 2014)
Jack Pimmel was born on June 13, 2014 and is the son to Joe and Kelly. On July 3 after taking him to the pediatrician with concern for his distended abdomen, they received the devastating news from the doctors. The test results had diagnosed their sweet baby boy with Infant Leukemia at only 2 weeks old. Jack fought hard but sadly his little body could not take anymore, and with my deepest sympathy he passed away on July 29 at only 6 weeks old.
Infant Leukemia (AML-M7) is only diagnosed in 150-160 infants a year in the US, additionally AML-M7 is extremely rare in infants with the number of documented cases ever worldwide being in the 100s or 1000s. The overall cure rate for infant leukemia is approximately 40-50% overall, but Jack's type had even lower cure rates being 10-20% with chemo, 30-40% with a bone marrow transplant.
Jack's mother states, "Jack was our sweet, beautiful baby boy. He was quite stoic, but with an angry leprechaun face to let us know when he was displeased. He loved to hold hands all the time."
Julia Drummond (HHW Trivia Night - 2014)
Julia (Jubi) Drummond was born on January 21, 2011. This beautiful little girl is 3.5 years old and was diagnosed this summer with ALL (Acute Lymphatic Leukemia) which involves the Central Nervous System. She has begun chemotherapy to start her fight against cancer. Julia's parents are Steven and Liz Drummond, and she also has two siblings Zachary and Erin. According to her mom, regardless of all her little girl has been going through, Julia's spirit remains high. These kids who get the toughest battles can absolutely amaze you by their strength and determination.
Triston Walls (HHW trivia night 2013):
Last update on Triston provided by his mother Carrie: "Right now he is doing good. After we were denied the lung transplant, while we were seeing if any other hospital would list him, I was talking with a Mom in one of my support groups who told me about a medication they tried and it helped her daughter double her time between Cardiac Caths (which is what we were needing to happen, since he was only making it 6-8 weeks between his). So after convincing the Cardiologist that this new medication was worth a shot, he prescribed it after his October 1st Cath. Since then he has NOT NEEDED A CATH! We're finishing our 19th week! Physically he's getting stronger. He can now sit up unassisted as well as get into a sitting position from laying down. He's also very close to crawling. One thing they are concerned with is his receptive speech. They are thinking he is either Autistic or has a Sensory Disorder. But they are slow to make a diagnosis because of all he's been through. It could still be just a way of coping with it all. (Plus a diagnosis could hinder his need for a lung transplant if/when he needs one in the future).He will need another Cath(s) and more than likely another open heart surgery and eventually the lung transplant, but for right now we are counting our blessings and savoring these good days."
Hannah's Helping Ways would like to thank everyone who came out to support Triston Walls and our cause. Triston is doing wonderful and continuing to hit milestones everyday. His mother is so inspiring and is the epitome of strength and determination. Please take the time to go to their Facebook page Prayers for Triston and follow their story.
Riley May Larson (HHW trivia night 2012): Riley was born on July 28, 2012 in Iowa. We do not know this family personally but I met her mother through a support site called LiveR on Facebook. Riley was also born with the same rare and life-threatening liver disease as Hannah called Biliary Atresia. Riley had endured 3 liver transplants to attempt to win her fight against liver disease but her tiny body could not withstand the impact such big surgeries can have on such small children. She lost her fight to this awful disease but gained her angel wings on June 16, 2012. Riley is one of the reasons this non-for-profit organization was created. She is a beautiful little girl and her mother carries herself with such strength and class after all they have been through. Her story touched many hearts and still does to this day.