It’s been a joyful yet very stressful life path we’ve been on since Alex was born. I like to say our family is taking the treacherous but more scenic route. When Alex was born it was an immediate struggle to get him to grow and gain weight as he was constantly vomiting. Despite all our efforts to figure out what was causing this, it remained a mystery until his 4 year old well check up. I casually mentioned that he was constantly needing to urinate, often getting him up with a full bladder 4 x a night. We were exhausted. His pediatrician took the comment seriously and next thing I know Alex was having a kidney biopsy. We were blindsided to get a diagnosis we had never heard of let alone were able to pronounce called Focal Segmental Glomerulosclerosis. There was no cure and no real treatment. The disease had already caused 70% loss of combined kidney function. We were told he will eventually need dialysis and/or a kidney transplant to live.
We were able to slow further loss of function through diet and some medications until he hit puberty in 2021. As his body attempted to grow the demands on his kidneys were too much and he was put on the transplant list in early 2022 when Alex was 13. Many family members stepped forward to be his donor but in the end I was the best match and I found out I would be able to donate one of my kidneys to Alex. I was so thrilled. The doctors were confident he would have a great outcome.
Alex and I underwent surgery to transfer one of my kidneys to him on 11/7/22 at the University of Iowa. I woke from surgery to find that all had gone well, but within a week we were back in the hospital with complications. He had to have another surgery to try to remove a large amount of fluid that was accumulating around his new kidney. The surgery went well but his kidney never seemed to recover. Over the next year we battled several acute rejection episodes. Each one required large amounts of medications that were hard on his body and there were always multiple days in the hospital. He missed so much school I was worried he would never catch up. His immune system became very weary from all the prednisone and he began to develop one infection after the other. We could barely go 3-4 weeks without a hospital admission for the next year. At his one year Kidneyversary instead of celebrating we were back in the hospital with a very scary kidney infection that led to sepsis. We spent a couple days wondering if Alex would make it through. He did. I can only give thanks to God for helping us find the doctors and nurses at Blank in time to save his life. I learned to never go a day without monitoring him for some kind of illness.
But the infections didn’t stop and became even scarier. He got infected by a rare virus that next spring that caused his bone marrow to stop producing red blood cells and he was back in the hospital for several blood transfusions and infusions to boost his immune system. He had been taking too many steroids and his adrenal glands were shut down. He was now dependent on them to live. He was missing so many things and he became pretty discouraged at this point. We had been telling him for the past year and a half that things would get better, but we were all starting to lose hope.
This past summer Alex’s kidney function had slowly declined to almost the level it was when he needed a transplant in the first place. We were stuck in the transplant swamp slowly sinking. He was trying to participate in marching band practice and went to get certified as a lifeguard. That ended in another ER visit with no new answers. He would come home and fall asleep for hours. He began to complain of back pains that were so severe he couldn’t stand or walk. He was only able to walk a few feet at a time. I remember telling his nurse on one of many calls I made that it seemed he was slowly dying. We went to the emergency room 3 times in a matter of 3 weeks this past august because his pains became so severe he couldn’t stop screaming. He could only get relief lying down. I wondered how he would even be able to start school in a couple weeks.
On the third ER visit the two doctors there took us very seriously and were determined to figure it out once and for all. By this time Alex could hardly walk. A series of tests revealed there was a blood clot in his abdomen extending from the pelvis into his new kidney and all the way up the vein part way back to his heart. Within 10 minutes of the diagnosis Alex was on a life flight to Iowa City for emergency surgery. I had begun to accept that Alex would probably not live to be an adult, so all I felt was extreme relief. It finally all made sense. There is a famous transplant surgeon who wrote that transplant patients are like Puzzle People and the key is make all the pieces fit. It felt like we had the last piece, now we just had to make sure it was put in place in time to save him and his kidney. In the end he needed 4 surgeries in 12 days to clear the clots. He had to miss the entire first week of his first year in high school. During one surgery they revealed that Alex was born with a narrowing in the main vein from his organs back to his heart. That was what was causing all these problems. They were able to perform an angioplasty to partially widen the narrowing. It is not known when it will start to narrow again. He will probably need a stent someday and he will have to be on blood thinners for the rest of his life. He has had to give up contact sports and we worry about him falling or getting in a car wreck, but they were able to save this transplanted kidney.
Alex has recovered from all the illnesses and surgeries, and I am happy to report, he hasn’t had to go back to the hospital since August. His kidney function is stable at about 40% which is plenty to go on for several more years. HIs medications have been reduced to only the normal anti-rejection meds that all transplant patients must take. He is working hard to get good grades in school. He has traded being on the basketball team to being on the bowling team. He has embraced his love of music and is part of the percussion section for his high school marching band. He hopes to be well enough to travel with his school marching band to Dublin for the St Patrick’s Day parade next spring. I pray that he will be able to go. He dreams of being a normal kid.
For me, I keep myself sane by going for runs with friends and by myself almost every day. Getting outside in nature and with friends is a way I can feel like a normal person. I admire the Streakers out there who get it done no matter what the day brings. I hope to be able to run every day till Christmas and meet the goal as well.
Elym is a curious and passively intelligent 13-year-old boy who is a gaming fanatic-Buffalo Bills fan. Elym has always stood out from his peers, and was known for his boundless energy and quick learning abilities. Elym learned to ride a bicycle without training wheels at just two years old. His parents have always described him as a go-getter and a fighter.
In May, Elym underwent a stem cell transplant, and while his family remained hopeful, he required weekly transfusions of blood and platelets, along with a medication aimed at renewing his bone marrow. For a time, Elym’s blood levels improved while continuing to take weekly visits to the U of I, bringing moments of joy for both his medical team and family. However, these levels began to decline again, indicating that further intervention was necessary.
The Choun family truly appreciates any prayers and support during this challenging period. They also encourage individuals aged 18-40 who are not yet registered as donors to consider signing up with the National Donor registry to help individuals like Elym in need of a transplant. The website is: 
Alice Eileen Silver was born on November 4th, 2020. She entered this world with a sort of elegance to her. We fell in love all over again. She was sweet, calm and healthy – at least so we thought.
AHC is a rare neurological disorder in which repeated, transient attacks of hemiplegia (paralysis of a portion of the body, including the face) occur, usually affecting one side of the body or the other, or both sides of the body at once. It ranges from simple numbness in an extremity to full loss of feeling and movement. The attacks may last for minutes, hours or even days and are normally relieved by sleep. The attacks of hemiplegia typically alternate from one side of the body to another, but it is not uncommon for one side to be more frequently affected, or for episodes to begin on one side, and then switch to the other. AHC episodes are often associated with triggers that precede or induce the attack. Triggers for AHC episodes may include–but are not limited to–environmental conditions (such as temperature extremes or odors), water exposure, physical activities (exercise, swinging), lights (sunlight, fluorescent bulbs), foods (chocolate, food dye), emotional response (anxiety, stress, fright), odors (foods, fragrances), fatigue, and medications.
Although the disorder is named of “childhood” those affected by AHC do not grow out of the disorder. The AHC episodes may change and sometimes even decrease in frequency as a child gets older. Every child with AHC is unique, and children can be severely or mildly affected. However, as children get older, developmental problems between episodes became more apparent. These developmental problems may include difficulties in fine and gross motor function, cognitive function, speech and language and even social interactions. There is developing evidence that AHC may cause ongoing mental and neurological deficits with a progressive course.
Maple Joy was born at the University of Iowa Hospital on March 2nd 2022 at 26 weeks gestation, weighing 13.5 ounces. When she was born, she was so small that it was a legitimate fear as to whether the breathing tube would fit down her throat or not. When we got word that it did fit, this was the first of many miracles that have made up Maple’s life thus far.
City, someone stayed with her at all times. This time, it made more sense for our family to keep Maple’s older sisters in school, so our family was split. Maple’s baby brother and I were with Maple in the hospital, and her dad and older sisters at home, during the week.
If you would have asked me how to develop more patience before 2023, I would have probably told you meditation and yoga, neither of which I practice regularly.
Caroline’s case, due to the disruption in flow of Cerebral Spinal Fluid (CSF), she had also developed syringomyelia or fluid-filled cysts in the spinal column. The thought was, the syringomyelia was causing Caroline’s scoliosis. We were referred to a Neurosurgery team at the University of Iowa to discuss treatment options.
Life settled in January 2024. Our older daughter, Julianne, had to have an emergency appendectomy in February of 2024. Surgery went well and now the girls were able to trade surgery stories of how long they had to wait to eat before surgery, what they thought of waking up from surgery and comparing the number of surgeries each of them had. We were all hopeful we could get back to our regularly scheduled program.
We’ve learned that chronic illness is big and can be overwhelming. Caroline will always have chiari and hydrocephalus. Her shunt is a medical device implanted in her brain and tubing runs to her stomach. Medical devices malfunction. The reality is, Caroline will have another surgery to address a shunt malfunction, we just hope it isn’t for a long time. We really hope she doesn’t need another decompression surgery, ever. She may need a spinal fusion at some point down the road but that’s why she continues to wear her cervical collar for the time being. Looking at her today, you wouldn’t know she has any medical conditions, if she wasn’t wearing her brace.
Hailee’s journey is a testament to her resilience and strength. Diagnosed as an infant with CDKL5 disorder, vision impairment, and epileptic encephalopathy, Hailee has faced challenges that most cannot imagine. Despite frequent seizures and developmental delays, she continues to radiate joy and determination.
In 2023, age 49, my family physician told me it was time for my first colonoscopy. I was too busy with work, and put it off twice. I finally completed the Cologuard home test. A few weeks later, I received a text stating that the results were positive. I handed my phone to my son, age 29, and said “positive isn’t good right?”
The biggest emotional blow happened when I asked the oncologist about “the data.” It’s impossible not to cry when you hear, “If there were 100 individuals in exactly your position, 50 would be alive in 4 years.”
Hi, my name is Ally Fortmann. I am very blessed to have been nominated for Streakers by an amazing supporter. I have always had a lot of cheerleaders in my corner despite my “I will be fine” mentality. I work as a paraeducator in an elementary school and I love my job and the people I work with. Outside of family, they have been some of my biggest cheerleaders.
The past few years seem to have been filled with new issues at every turn. In September of 2022 I had my pacemaker leads replaced. On December 7, 2022 I woke up and my heart rate was stuck at a very high rate and would not go down. From then until July 2023 I was cardioverted (shocked back into rhythm) four times and had two ablations to fix both the typical atrial flutter and the atypical atrial flutter.
On Friday, September 27 I went in for an angioplasty to create some more space in the vein and buy us some time until I could get a new pacemaker. Two days later, on Sunday, I ended up in the ER and within an hour they knew I had multiple blood clots, one a complete blockage, and was being admitted. I had a venogram with angioplasty and they started tPA. The next day that was removed and they did an angioplasty again. That night they told me they found a surgeon to put in my new pacemaker and that would be happening the next day. I had my original pacemaker and wires extracted and I now have a new one placed directly into the atrium of my heart. I got released from the PCU on October 2nd. They did find another clot a few weeks later and since the wires were no longer an issue, I was sent straight to the hospital to get a stent placed.
Thankfully, our dentist was adamant that she be seen at the children’s hospital immediately, making several calls on our behalf to get Kimber seen as soon as possible. The small bump grew rapidly and our biggest fears were confirmed.
Minutes before welcoming our third child into this world, Kimber’s cancer diagnosis came through on Justin’s phone. After a few hours of being with his wife and new baby, Justin rushed Kimber to the Children’s Hospital to do scans and biopsies.
Ashley is a wife (to her supportive husband, Mike), a mother of three amazing boys (Bennett, Baylor, and Bowen), a loved nurse and pediatric outreach coordinator, and a wonderful friend to so many people! This is her story:
Pat turned 50 in 2021 and was told that it was time to start yearly colonoscopies. Pat went in for his first colonoscopy the summer of 2022 and was told that he had a large tumor in his colorectum that was likely cancerous. A biopsy confirmed this suspicion and Pat began a journey of cancer treatment immediately.
At the time he was diagnosed with a stage 3 tumor that was not believed to have metastasized (spread beyond the original site). Pat worked with doctors at Mission Cancer in Des Moines to receive a comprehensive treatment plan which included chemotherapy, radiation, and surgery. His treatment began the summer of 2022.
In April of 2023, Pat had surgery to remove the tumor. During surgery, it was discovered that the cancer had metastasized to Pat’s abdomen and the lining of his diaphragm. Pat’s cancer progressed to a stage IV diagnosis. Pat began chemotherapy again. He was accepted as a patient at The Mayo Clinic in the summer of 2023.
Pat qualified for a fairly new treatment for cancer of the peritoneal cavity called HIPEC. He received that treatment in August of 2023. He returned to Mayo in November of 2023 and found that his cancer had spread to his lungs, abdomen, and into his diaphragm muscle. Pat had surgery to remove all visible cancer tumors and the right side of his diaphragm replacing it with Gortex and mesh.
Pat will spend the next 6 weeks healing from surgery before starting chemotherapy again in January 2024. Pat is supported and loved by his family. Laura is the principal of Heritage Elementary in Ankeny. They have three kids, Jake, Payton, and Paige who are all going into the medical profession. This cancer diagnosis has changed many things for their family. What it has not changed is their faith in God and their positive outlook and sense of hope for the future.
Our big question was what life would be like for Hadlee and what treatments, clinical trials, or anything we can to help her. Because of the rarity of the diagnosis, there are so many unknowns. Currently, there are no treatments and no clinical trials being done for her specific diagnosis. Her brain is producing myelin but not at a fast enough pace to keep up and older myelin is also disappearing. Her life expectancy is also unknown, it could be as little as one year, maybe longer, but she’s not expected to live a full decade. The only thing we can do for her is try to treat symptoms as they come. We were also told not to expect her to develop or do anything more than she is doing right now. We should hope but not expect. This means she may never hold her head up for extended periods of time, roll over, sit on her own, stand, walk, talk, use her arms and hands purposefully, etc.
On March 15, 2023 while on a family vacation visiting Morgan’s sister’s family in Ft. Collins, Colorado, Brandon was diagnosed with Stage 4 Pancreatic Cancer. While this diagnosis was devastating, we were very lucky to be surrounded by our family that could help us navigate the news and take care of our children. Brandon was discharged on March 17, 2023 and we began our journey back to Iowa. While traveling, Brandon developed infections and the temporary stents that had been placed in Colorado had crimped. Again, God was looking out for us, as we were surrounded by not only family, but very close friends as we began a 4 day stay in Omaha. Brandon had the temporary stents removed and had a permanent stent placed. He was released on March 22 (Morgan’s 39th birthday). Brandon had his first real oncology appointment with Dr. Lukenbill at Mission Cancer and Blood on March 23rd, where a chemo plan was immediately implemented along with genetic testing. During an “off chemo” week, we received genetic information. This testing indicated that Brandon has a germline (genetically inherited) BRCA 2 mutation. We also were able to get an opinion at Mayo. They echoed what the oncologist in Colorado and what our Oncologist indicated. Due to the metastasis and location of the tumor, his disease is incurable, but treatable. In the world of cancer, the more genetic mutations the better. BRCA 2 is a widely researched mutation and has allowed us to treat this disease more aggressively. Brandon was able to switch to a platinum based chemo in the late spring. This was extremely intense and had him in the infusion room for a full day then coming home with a continuous chemo pump for 46 hours, before having it removed and then being able to rest for a week and half before starting the next round. We continued this process for about 5 months. The good news is that this treatment protocol worked really well and we saw a great reduction in both the pancreatic masses and the liver masses. Brandon then qualified for a trial to test how well immunotherapy works with the standard treatment of care maintenance drug, Lynparza. Brandon was placed in the control group and just received Lynparza. Unfortunately, on 11/7/23 we were informed that this drug is not working with his cancer as predicted and his liver tumors have begun to grow again. So, we have had to stop the Lynparza and will restart the same chemo regimen as before. This will occur for 6-9 months before we try a different route for maintenance. In the meantime we are researching hospitals and programs that see high volume Pancreatic Cancer patients with BRCA 2 mutations.
After 4 days at Blank, 5 more blood transfusions, and another GI scope later, they found those erosions from March had now turned into varices in the stomach and lower esophagus. Throughout all of this, Lauren continued to feel well enough to participate in her studio dance recital, dance for competition dance at Nationals, complete her softball season for AHS, and attend a 4 day dance team camp. She also received 4 more weeks of iron infusions until the end of July.
We did have to stay in Omaha for the next 9 days so they could draw labs on her every other day, and meet with her transplant team every week. During one of these appointments the pathology report came back on her liver, and we were ecstatic to hear that the lesions on her liver were not cancerous!! Also, the scarring on the liver was not cirrhosis. Instead all of the scarring and lesions that they saw were NRH (Nodular Regenerative Hyperplasia). Still a very rare and dangerous liver disease. So along with the portal hypertension she had, it was very critical for that liver to get replaced to prevent any more life-threatening GI bleeds.
I am a third grade teacher at Ashland Ridge Elementary in the Ankeny Community School district. The past 12 years have been filled with classrooms full of students I absolutely love and adore. Being a teacher is what I was meant to be, along with a mother. Ellerson, Delaney and Kerigan have made me an incredibly proud mother. Ellerson and Delaney, are sophomores at the University of Iowa. Ellerson, the oldest by 3 minutes, is headed in the business direction. She loves all things books, is organized, and her smile is seriously the best. Delaney has applied to the engineering program. She will always battle for her mom/girls/women. Delaney is the one always jumping in to help with dishes or laundry. She’s got the biggest heart. Kerigan, who is a junior at Centennial in Ankeny, is our social butterfly and friend to everyone. Kerigan loves her friends, dessert, soccer, and sharing hilarious tik toks. I am a wife to Eric of 21 years, my high school sweetheart. He is my best friend, he is hard-working, he is humble, and he makes us laugh all of the time. I could not do this thing called life without him! I am also a daughter, a sister, co-worker, and friend. I am so very fortunate to have all of these titles. 
I am thankful for a supportive and knowledgeable medical team and a strong group of friends and family that have helped me along this journey thus far. People of the community of Ankeny, and my hometown of LaPorte City and Dysart, have also shown up for me. Additionally, I appreciate the Holiday Streakers group of supporters and will put on as many miles as I can with my family to win this battle! I will fight to enjoy all of the precious moments we are given. A special thank you to Kristin Day, Pari Brown, and Brandon Hargens for this nomination. These three are some of the best friends a girl could ask for.
Luke is an example of true strength, courage and determination. He is the most wonderful father, husband, son, brother, friend and teacher. Luke has many lifelong friends and a love of all sports, especially football, basketball and golf. Luke graduated from St. Thomas University, where he played wide receiver on the football team. He later found his true calling to be a teacher and gained a second degree from Iowa State University. Luke will be more than happy to talk with you for hours about any sports subject and somehow always knows the stats of every game and player! I am Sarah, and I am very blessed to be married to Luke. I work at Heartland AEA and like Luke, I also share a passion for education. We have three young children: Hollie (10), Mia (8), and Jordan (3). Hollie and Mia are very busy with school, dance, softball, voice lessons, and basketball. Jordan is busy with daycare and everything an active three year old can get himself into!
In the mix of this news, our son Jordan had been diagnosed a few months earlier with Epilepsy so we navigated that throughout this as well (thankfully, he is doing very well). We were told Luke’s cancer was too advanced to allow surgical treatment. The doctors said their goal was to keep Luke alive for a year if possible and then hopefully reassess from there. We began the terrifying fight and Luke started heavy doses of Chemotherapy every other week, which consisted of 5-6 agents over a course of 7 hours and then a chemo pump that he brought home for another 46 hours. Luke chose to do his chemo Friday through Sunday. His heart is with his students and it’s so important to keep things as normal as possible when he can. Throughout this storm, everyone was amazed with Luke’s strength and remarkable attitude. Luke teaches 6th grade at Westridge Elementary in West Des Moines and our girls are proud to attend there as well. He also is a mentor to several young men that he has coached in basketball and on several occasions Luke will stay after school to chat with former students who come back to say hello to him. The students and staff at Westridge have supported Luke and supplied him with tremendous love and encouragement. You can often see students and staff wearing “Our Positive Warrior” shirts in the hallways. Much has been done by many giving and wonderful people to help Luke in his fight. We are forever grateful and it’s truly what gets us through this journey! We enjoy making gifts for the local cancer center with our kids and hosting an annual golf tournament with friends that benefit local families impacted by cancer. As a family we have enjoyed giving back as well and found that connection and community is good for the soul!
Thankfully, after 6 months of this intense chemo that Luke was on, the tumors were not spreading and they had gotten much smaller. In some cases, they had almost disappeared. I’ll never forget his oncologist texting him the night of his scan as we waited anxiously for our appointment the following day saying, “things look better.” We both just had tears of relief in that moment. We prayed Luke could see Jordan go to Kindergarten. It was decided to continue the chemo for an additional 2 months. But now what were we to do? This was an unexpected result and we were feeling cautiously hopeful. We sought out second and third opinions. The doctors said with Luke’s encouraging Chemotherapy response, it was time to think about surgery to remove the cancerous colon tumor, the cancerous liver tumors and biopsy surrounding lymph nodes. To make a very long story short, this was not a surgery that could be performed anywhere but a Cancer Center. The decision was made to go to the MD Anderson Cancer Center in Houston, Texas. The main issue was the many Liver tumors as they would require removing 70 percent of Luke’s liver. The liver does regenerate but it cannot do so if too much of it is removed. A lot of factors had to fall into place in order to have his liver resection, including losing 30 pounds, but Luke was determined. All in all, 3 liver surgeries were performed by some of the best liver cancer surgeons in the world. Luke’s longest liver surgery lasted 8 hours. Only 30 percent of Luke’s liver remained afterwards but his liver thankfully did regenerate as the doctors said it would. The colon surgery was performed about two months later to remove the colon tumor. The time period for all of this surgery was roughly 3 months and Luke handled it so courageously. In true Luke fashion, he got back to his normal work routine as soon as possible with a smile on his face. Over the course of his treatment, 4 other procedures were also needed. As an unfortunate side story to all of this, I managed to fall and break my ankle shortly after Luke’s liver surgery which required a surgery of my own. I was getting around on a scooter when going with Luke back and forth to MD Anderson. When it rains it pours and boy were we a sight to see!
Luke’s progress at this point was now followed closely by MD Anderson Cancer Center mainly and trips were made there every 3 months for blood tests, body scans and appointments. At his 3 month follow-up scan post liver surgery and colon surgery, Luke showed N.E.D. (no evidence of disease)! We got to celebrate this miracle for about 3 months until a blood test, called CTDNA, had found a very slight trace of the cancer’s DNA in Luke’s blood. All his scans were still clear at that point though. After careful consideration, Luke and his doctors decided to treat the trace that was detected in his blood by placing him in a new trial for 6 months. This would require Luke to take 8 immunotherapy pills daily and return to MD Anderson every 28 days for a chemo infusion and testing. Halfway through the trial, his CT and PET scan unfortunately revealed several cancerous tumors in his peritoneum. (The peritoneum could be described as a type of sack that contains most of your abdominal organs). Luke was unfortunately removed from trial and placed back on intense chemo every other week like before. He continued to teach and thankfully was able to get his chemo locally while continuing testing and scans in Texas.
My name is Tricia, I’m a wife, mother of 3, former 2nd grade teacher, and for the past year, a cancer patient. I was diagnosed with T-Cell Lymphoblastic Lymphoma in November 2022. The doctors worked quickly to develop an aggressive treatment protocol that would last 2 years. Despite initially getting me into remission within a matter of months, the cancer spread into my right trigeminal nerve and other lymph nodes.
Hi, I am Stephanie (Stevie) Rowley. I was diagnosed with stage four Complex Regional Pain Syndrome about 8 months ago. CRPS is a broad term describing excess and prolonged pain and inflammation that can occur following an injury or other medical event. CRPS has taken so much from me. Eight months ago I was walking, running, playing Pickleball, and working in our local hospital as a master’s level social worker. I now use a cane and/or walker. I no longer can work which has been devastating for me. I loved my job.Joe is an outgoing, family-o
riented, caring individual with a strong faith. He will be 40 years old in November. Prior to his medical emergency, Joe worked as an associate at Summit Middle School in Johnston, IA, where he was known as the autism whisperer. Joe’s large size, booming voice, and gentle personality were a winning combination when dealing with anxious youth and he was well loved by students and coworkers alike. Joe’s family calls him superman because he isn’t supposed to be here—he has beaten death at least twice—but despite all the medical struggles and setbacks, he just keeps pushing through. He has a loving wife, Nicole, and an 8 year-old son, Nate. Nicole has been Joe’s primary caregiver since his injury, and has made tremendous sacrifices in order to keep their family together. She recently started work at the airport part time, after a four year work hiatus in order to be available for Joe. Nicole battles depression, anxiety, PTSD & caregiver burnout from the trauma of Joe’s injury as well as the added responsibility as a caregiver to a dependent adult and their child. These past four years have not been easy, but she rallies around Joe, Nate, her family and friends. Nate is a typical 8 year-old who has shown resilience in the face of his father’s medical battles and losses. Nate was just four years old when Joe collapsed in front of him and was hospitalized with tubes coming out of various parts of his body. Although this was traumatic, Nate seems to be adjusting to his dad’s status fairly well. He is very active and enjoys swimming, Roblox, Pokémon and car models. He is interested in basketball, and loves to help others.
In November of 2018, Joe collapsed at home and was rushed to the ER. He complained he had a severe headache and felt nausea for a couple days prior to his collapse. He went to urgent care twice and both times was treated for migraines. Forty minutes after his 2nd visit, he collapsed in front of his wife and was unresponsive. 911 dispatched EMTs; when they arrived, Joe was resuscitated & intubated on the way to the ER. A shunt was placed to relieve pressure on his brain and a CT scan confirmed there was a golf ball sized tumor on his pituitary gland. Doctors advised the next course of action would be determined when Joe woke from his coma. After 3 days, Joe was still unresponsive. An MRI confirmed he had suffered 2 massive strokes (brain stem & occipital lobe) as well as mini strokes throughout the brain. The doctors determined it was a fatal injury & less than 25% chance of survival. Nicole was automatically granted power-of-attorney and had to make a difficult decision for end-of-life services. It was decided to wait until after the Thanksgiving holiday to allow the family to enjoy one last holiday with Joe. However, God had other plans. A few days later, Joe started responding to the neurological tests. With a new lease on life, Joe’s medical team decided to surgically remove the tumor. A month after surgery, Joe was transported to Madonna Rehabilitation Hospital in Lincoln, NE, then to On With Life in Ankeny to continue inpatient therapy. In order to help cover medical expenses & loss of their incomes, Nicole sold the family’s townhome and found an ADA accessible home for her and the boys. Three months later, Joe was able to go home, but his physical and medical needs required a full-time caregiver. Nicole was unable to seek employment as she became the primary caregiver.
A year into his recovery, his doctors recommended to dissect the residual tumor left after initial surgery. Unfortunately, there were several medical complications requiring Joe to be life flighted to U of Iowa Hospital. They implanted a plate as well as a shunt to regulate the cerebrospinal fluid. Then, COVID happened. Visitations were restricted or prohibited which was devastating to everyone. Joe & Nicole were able to connect through Facetime as she needed to be home with their son. After many medical facilities and some unfortunate events, Joe was able to return home after a 430-day absence. Unfortunately, Joe had lost all the skills he had regained the year prior and had additional medical issues, including fine motor skills, cognitive deficits & a compromised swallow. He requires a feeding tube and is forbidden to have solids & liquids due to high aspiration risks. Although he eventually was approved for the Brain Injury Waiver, the family suffered major financial hardships; which left them basically destitute. It also caused added stress on the family, especially Nicole. She fell into a deep depression after exhausting all possible resources available.
Joe was eventually moved to a group home after a psychotic episode in his sleep left Nicole severely injured. The decision was made to place Joe in a group home with a higher level of care and attentiveness that Nicole is unable to provide. Even though Joe is no longer in the family home, Nicole and Nate play an important part in his recovery, as does his extended family. He still keeps his spirits high and is determined in his recovery thanks to his faith & the love he has for his family.
Madison Meyer was your typical four-year-old in every way. Born and mostly raised in Des Moines, she loved playing with her two older sisters and spending her days home with her mom. Some of her favorite things were being outside, riding her hoverboard and tricycle, playing, and spending the days baking with her mom.
On the Friday of Memorial weekend Brandon woke up feeling a little bit off. I asked him if I should drop off our son Colton for school, but Brandon insisted that he take Colton. He came home after drop-off and decided to try and “sleep off” his sick feeling. Around 2 o’clock in the afternoon I received a text from Brandon that said ‘help’. I texted back asking what he needed, and he responded with “I fell”. I gave him a quick call and noticed his speech was really slurred. I asked my boss if I could leave and go check on him. I sped across town and when I got home, I found Brandon in his basement office without a shirt on. Brandon told me he fell a few times and was frustrated that he couldn’t get his shirt on. I helped him get dressed and took him to Urgent Care because he didn’t want me to call an ambulance. An incredible miracle happened as I was able to get him up the stairs without falling. He visibly had weakness in his left side. He staggered to the car with my help. On the way to Urgent Care, he began falling asleep. I remember hearing that is not good, so I tried to keep him awake. During the car drive It came to my mind that this has got to be a stroke. Somehow, we made it into the doctor’s office. I sat Brandon down and took care of insurance, and as I was doing that, Brandon fell out of his chair. We decided to call the ambulance. While waiting, it was clear to us that Brandon was having a stroke at the young age of 36.
He had been having symptoms since he woke up, meaning at that point his brain was deprived of blood for at least 8 hours. So much damage had already been done. After arriving at the hospital, the doctors did all the usual tests and told me that he indeed suffered a massive Ischemic stroke on the right side of his brain. The next step was to sign off on an emergency Thrombectomy to try to get blood flow back to his brain. I sat in the waiting area feeling so caught off guard and not understanding the severity of any of this. The surgeon came out and let me know that the Thrombectomy was unsuccessful. I could hear the feeling of defeat in the surgeons’ voice as he told me he could not get the blood to flow back to the brain and that any damage that had occurred would probably be permanent.
Brandon spent the next 24 hours under close watch, feeling very drowsy and becoming less responsive to us. He underwent another CT scan where it showed an incredible amount of swelling around the brain. We were then given the option to undergo a life saving surgery called a Craniotomy. The Neurosurgeon would cut out a large part of Brandon’s skull to take the pressure off his brain. Everything was happening so fast, and I did not know if I was making the same choices that Brandon would want, but we kept pushing forward.
The craniotomy was helpful in relieving the pressure, but Brandon was left with left side paralysis. Doctors would come in every hour quizzing Brandon and asking him to try to move his appendages. He couldn’t do anything with his left side. The muscles in his throat were even affected, therefore he could not eat. A feeding tube was placed to provide his body with nourishment. There were days where Brandon would get confused with who I was, thinking I was his sister and asking when his wife was going to be visiting. That was so frustrating for me as his wife.
Physical Therapy, Occupational Therapy, and Speech met with Brandon each day. Speech therapy worked on helping him strengthen his swallowing muscles so he could begin to eat pureed food. On his first day of PT, his job was to sit up at the side of the hospital bed with the help of 3 other people. The next day his job was to hold his head up while sitting bedside. He was able to hold it up for 10 seconds. He was on a long list of medicines, and I was able to have a few doctors explain in depth what had happened. The cause of the stroke is not exactly known.
After his time was up in the rehab facility, he returned HOME! The transition was excellent; he started to really progress in his own home. Being able to attend out-patient therapy at On With Life has been a continued blessing!
This brings us to today, almost a half a year since stroke day in May. Brandon currently does an excellent job with walking up and down the stairs with assistance. He can perform transfers, short distance walking, and daily life skills with assistance. He has no dietary restrictions and loves to cook with me! He was even able to attend Colton’s first grade conference last week. Brandon struggles with most problem-solving skills and has no controlled movement in his left arm, but we are hopeful that will come back. Our relationship has grown 100 times stronger while we have spent this time so closely together working as a team. The road ahead will be long and bumpy but with our support Brandon can conquer his goals!
My name is Tara Lewis and I’d like to introduce our family. I was a Montessori preschool teacher for the past 10 years. One of my former students was the one to nominate us for Holiday Streakers. My husband Matt is the Men’s Drake Golf Coach and was thrilled to hear about your program. What a great way to keep people healthy while supporting others! My daughter Avery (16) plays club and high school soccer and my son Jackson (14) plays basketball and golf. Needless to say, our youngest, Bennett has grown up in a family that LOVES sports! If there is a game on tv, someone in our family is watching.
Hello Streaker Nation,
Connie is a proud mom of four girls. She loves to sing, act, and give praise to the Lord. She loves to stay busy volunteering her time and talents to church, community, and local theater. Connie has struggled many years with depression and anxiety, but thanks to medicine, medical professionals, God, and encouraging friends and family she lives daily with a purpose grateful for the life the Lord has given her. Connie enjoys spending time with her friends attending concerts, live theatre, movies, going out to eat, or one of her favorite activities -karaoke. She loves doing for other people and one day wants to take her family to Disney for vacation but this of course needs to be when Seth is healthy. She loves taking care of her family.
The George family has been fighting cancer for the last 2.5 years. In January of 2020 Seth started having severe back pain which he thought needed the attention of a chiropractor. One weekend the pain was so bad he decided to go to the ER. His enzymes were very high, and he was diagnosed with pancreatitis and sent home on a liquid diet. After a week of liquid diet and no relief he returned to the ER where a scan revealed he had a necrotic gallbladder. They removed his gallbladder and sent home to recover. Recovery was going very slowly, and he returned to the hospital. They ordered an MRI of his abdomen which did not reveal much but they saw a blip at the top of the scan which caused a little bit of concern. They did a scan of his chest revealing a grapefruit sized tumor. This was February of 2020. Seth’s diagnosis: B-Cell Lymphoma Non-Hodgkin’s Stage 2. There was only one big tumor. He underwent 6 rounds of chemo and 10 rounds of radiation and in August of 2020 was declared in remission.
Two weeks later Seth received a phone call stating that upon further testing his biopsy was cancerous. The doctors ordered a month of radiation treatments, but the cancer continued to grow. By January of 2022 Seth could no longer drive himself to his appointments and eventually Connie had to give up her job. Seth continued monthly chemo treatments until his body could no longer recover. As a last resort the doctors approved him for a Donor Stem Cell Transplant or Bone Marrow transplant. He received his donor cells on September 8, 2022 and is currently in the hospital recovering hoping his body does not reject them. As of Oct 14th, Seth has developed some infections and he is in the hospital undergoing IV treatments.
I have a wife and two girls, Sophia (14) and Chloe (13). Thank you for reading my story, I would like to bring awareness to the diseases I have struggled with and hope it can also help someone who may be experiencing some of what I have endured.
Days later, I began having a sudden, extreme onset of symptoms which included a cough, heavy chest, shortness of breath, chills, full body sweats, fatigue/exhaustion, brain fog, and a chronic migraine that would not subside. We instantly thought this was covid related. This was the beginning of June 2020, people were hesitant about going inside a clinic, and drive through covid tests were the norm. I got a covid test and was told in 4 days I would know if I was covid positive. Meanwhile, my rash was increasing in size and I had joint pain along with neck stiffness which compounded the other symptoms. Still having the initial symptoms with such intensity, coupled with no skin color, I felt like I was dying as every move and breath was labored. We went to the ER and the doctor tested for Lyme; however, he said it could take weeks before a positive test would appear. He strongly felt this was Lyme disease and he followed the CDC protocol of giving 3 weeks oral antibiotic doxycycline.
Meet Harper. She is our sweet 11-year-old daughter. She lives in Polk City (but Ankeny schools) with her brother Nile, sister Madeline, and parents Nolan and Nicole. She can usually be found with a soccer ball or basketball in her hands and loves cuddling her dogs, Dexter and Hurley! Among other things, Harper is a sister, daughter, friend, teammate, and a childhood cancer warrior!
For 4 ½ years Harper enjoyed living her best life which included soccer, basketball, volleyball, being an Iowa Hawkeyes Kid Captain, going on her Make a Wish trip, and doing normal, everyday things. Fast forward to September 19, 2022 – the day Harper would face her biggest challenge yet. This was the day we found out Harper’s cancer had returned. She relapsed close to the original site of her first tumor in her jaw. It was like Harper and our family got sucker punched – we were shocked of this news because we were 1 appointment away from hitting the 5-year mark and discontinuing MRIs. Our family soon realized this fight would look different than her first time battling with new harsher chemo drugs, all inpatient stays for chemo, and a major surgery to remove the tumor and reconstruct her jaw. So, Harper is back in the battle again, looking down the tunnel of months of expected and unexpected hospital stays, fighting the side effects of chemo treatments, missing life events/holidays/games, and so much more.
On October 13, 2018, we welcomed our sweet Estella Jean into the world. She was seemingly perfect in every way. We adored her; our other kids adored her. She was meeting her milestones, smiling and rolling over. She was perfect, or so we thought.
On February 26, 2019, our world came crashing down. Estella was just 4 months old. I got home from work, and Estella had just begun acting strangely. Her right eye was pulled almost backwards, her head was stuck over her right shoulder, and although she was breathing, she was otherwise unresponsive. We rushed her to our local ER, and were immediately taken by ambulance to Blank Children’s Hospital in Des Moines. By the time we got there, she was back to her normal self, with no sign of what had just happened. Both her MRI and EEG came back normal, so we were sent home after 48 hours with no answers, only hope that this would never happen again.
That wishful thinking didn’t come to fruition, and over the course of the next 5 weeks, we would replay this scenario 5 times. We spent most of the month of March of that year in the hospital. She endured blood draws, MRIs, CT scans, EEGs, genetic testing. I have memories of sleepless nights, countless tears, frightened phone calls. I have memories of watching ER staff prepare crash carts and oral airways, of ER doctors telling me they expect her to stop breathing at any moment. Memories of stroking her cheek and saying goodbye. Memories of pleading with God for relief from this nightmare. Memories of wishing for something, anything to show up on a test so we know what is going on.
We were told at that time that she had “intractable seizures” and that we were to rush to the nearest ER as soon as her symptoms started. At this point, these “seizures” would last anywhere from 25 minutes to 2 ½ hours. ER staff would give Ativan dose after Ativan dose, trying to get her out of these episodes to no avail. We would hold her, completely and utterly helpless.
In May of 2019 we got Estella’s genetic test results back. It showed a De Novo mutation on the ATP1A3 gene. What did this mean? De Novo means “new,” so neither my husband or I are carriers of this mutation. It was a random event that happened at conception. Based on this mutation, Estella was undiagnosed with “intractable seizures” and instead diagnosed with Alternating Hemiplegia of Childhood (AHC), an ultra-rare neurologic disorder that affects literally 1 in 1 million people. AHC is a disease that has a “poor prognosis.” It is known as being one of the most complex neurological disorders known to mankind. It is described as having 7 neurological diseases in one: paralysis like Stroke, seizures like Epilepsy, low muscle tone like Cerebral Palsy, neurodegeneration like Alzheimers, dystonia like Parkinsons, behavior issues like ADHD, and difficulty learning like Autism. It is a disease that causes episodes of paralysis, dystonia, nystagmus, and decreased levels of consciousness. It is a disease that causes intellectual disabilities, behavioral disorders, gait abnormalities, and movement disorders. It is a disease that is robbing my child of her life.
At her baseline, she can crawl and cruise furniture, sign words and play with her siblings. But if she plays too hard, laughs too long, is too silly, gets too excited, swings too high in a swing, takes too long of a bath, gets too hot or too cold, stands too long or gets too upset about something — she goes into an episode.
Currently, Estella’s episodes are lasting about 4 days every 2-3 weeks. During an AHC episode, Estella becomes trapped in her own body; her brain no longer has any control over it. She is mentally aware of what is going on, but at 3 years old, does not understand why it is happening. Every AHC episode is different, and it can change from minute to minute. Without a moment’s notice, she can become paralyzed in one arm, two arms, or her entire body. She can develop dystonia in any or all limbs of her body, and scream from the severe pain this causes. She can lose her ability to swallow while she’s eating or drinking because of muscle paralysis. She can lose control of her eye movements. She can lose her ability to vocalize. Episodes can last for minutes to days at a time, and we don’t know how long it will last until it is over. Every episode brings the risk of skill regression, seizures, brain damage, respiratory arrest, and sudden death. Every episode is terrifying.
There currently is no effective treatment or cure for AHC. We give medications to treat the various symptoms of AHC, but not AHC itself. Since it is so rare, there are only a few doctors in the United States that specialize in AHC. Estella’s doctor is in North Carolina at Duke University, and we make a weeklong trip there every year for her to be evaluated by her AHC team.
Every day Estella wakes up, we have no idea what her body is going to hand her that day, but she does not let a good day go to waste! Estella has endured more physical suffering in her 3 short years than most people do in a lifetime. But her strength and determination are inspiring, and we fight every day to give her the best life we can possibly give her.
My husband Lui is 51, a computer technician for a large company, and an accomplished bass player. We have been married for 23 years. We have 4 kids, a son-in-law, a granddaughter, and another on the way. We are believers in Jesus and devoted to our church that we’ve gone to for over 25 years. Life has been full and we have been blessed beyond measure.
Two weeks after surgery he started having focal seizures in his hand and face that got progressively worse. It started to affect his ability to use his right arm and hand and to talk and eat. On May 10th, we decided to go to the ER and they found that the tumor had grown back to 3 times the size it was 30 days earlier! We were shocked! They scheduled another surgery for May 14. This time, because the tumor was so aggressive, the surgeon said it would be best to remove everything and suggested Giliadel chemo wafers be inserted into the brain cavity to suppress any new growth. The surgeon was going to do his best to try to keep from damaging Lui’s mobility. During surgery, they removed every bit of cancer they saw. Unfortunately after surgery, Lui was unable to move his right side and his speech and cognitive ability were severely affected. This wonderful man that is my love, my best friend, and very active and involved in all aspects of our life was unable to walk or talk normally. This would prove to kick off the most challenging part of this journey. He stayed in the hospital for 3 weeks and was then moved to inpatient rehab where he started getting 3-4 hours of physical therapy a day.
As a family, it’s been very hard to navigate for everyone. The kids have been so strong and resilient, pitching in wherever needed. They have their hard days dealing with the huge change they see in their dad.
These days, Lui goes to therapy, loves on his kids and granddaughter, goes to church, and even went to see live music with his best friend. He’s still in a wheelchair and uses a cane with help. He is staying positive even on days I can tell are harder for him. Despite what the doctors say, we are still believing in complete healing from brain cancer and for Lui’s full mobility to return. God is able!
Sarah Waul is a 17 yr old Senior from Bondurant-Farrar High School. She is battling cancer for the 2nd time in her life and this time it’s an even rarer form of cancer. She was originally diagnosed with Ewing’s Sarcoma a month before her 3rd birthday when we lived in North Liberty. The odds of a 3 yr old getting Ewing’s is 3 in 10 million. It is far more common in teenagers. While she lost her wedding ring finger to the cancer, she was successful in becoming cancer-free from Ewings after 9 months of heavy chemo treatments.
Hi, we are the Garcia Crisanto Family – Boni and Charo, Geraldin (17), Lizbeth (15), Darihelys (9), Emireth (6).
In May, everything changed. My husband, Boni Garcia lost his life after a month and a half long battle with Covid. He was in the ICU for two weeks and in the hospital for over a month. This changed our family forever. We lost our beloved husband and father and many people lost a dear friend. Those were some of the darkest and most challenging days we have been through as a family. The emotional weight of the grief plus the financial burden of it all weighs heavily on me (and on my daughters).
(Liz) “I can’t remember a time where my dad was not by my side. He is the first man I ever received true love from. My father was a man who always empathized with others. He was a jokester. He would always know how to crack a smile on your face. The most significant moments were the lessons he taught me. He always put himself in the position of people in need. I will never forget the many times he did this. A memory that will stick with me is from the day we went to the DMV together. My dad’s English was not perfect, so many times my sister or I would go with him to places where he would need translating. I remember getting there, helping my dad sign in the line at the DMV. It was packed as usual and we sat down. Not long after, a Hispanic man walked in. He seemed to not know any English as he was trying to discuss with the DMV employee and neither of them was able to communicate. So my dad told me “Go up to him tell him you can help him.” I remember thinking that I was shy because I did not know this man and sort of gave my dad this look like “but I don’t know him.” He insisted I go and I did and he came with me. I asked the man if he needed help and he said in Spanish “yes actually I’m not able to get anyone to understand me. It’s my first time doing this sort of paperwork and I don’t know what I’m supposed to do.” I helped him register in the waiting line while my father and he talked in the background about how it was a struggle – the barrier between languages. I explained to the man that his number would be called out and he was to go to the window assigned to him. He said thank you and thanked my dad as well. We sat back down and my dad turned and said to me “I have been in that position before. Luckily I understand English better and have you and your sister, but that man had no one. Think what if we hadn’t gone up to him? He would have been here for hours trying to figure it out. If you are able to help someone, do it. You never know if tomorrow you may be the one in need.” I remember the man got done with his paperwork even before us as he left he waved and said “God bless!” I remember my dad waving back and giving him a smile. My dad was a selfless man and his teachings will forever be the best way to continue his legacy.”
(Dari) “My name is Dari. Today I will be sharing a memory I have with my dad. So there was this one time my dad had went grocery shopping and he came back home. We had bought cookies and we were outside for a while because it was a nice day. I remember we were just there for a while and I remember saying thank you and then I kissed him on the cheek and told him I loved him. He then said, “I love you too” and then he hugged me. Although there are so much more memories, I think this one stood out the most because I think it shows how strong our bond was. Thanks for listening. Sincerely, Dari”
After living through the pain of losing our husband/dad, we are able to have compassion and empathy for many others going through similar and sometimes even more difficult situations. Even this week we were able to help someone else get a job where Boni used to work. It is such a blessing to be able to help others through what we have been through. We know that is what Boni would want us to do. We want to say thank you to everyone who is supporting us, checking in on us, and praying for us. We want to thank God for caring for our family even in the hard times. This is truly a big blessing to our family!
In January 2020, we found out I was pregnant with our little rainbow baby. In May, I went into what I thought was just a normal 20-week ultrasound. But this ultrasound was very different than the ones before. I had two techs in the room and they both left and asked me to stay in the room. It seemed like forever as I waited in this little room by myself (Brandon was not allowed in due to COVID precautions) to have the techs come back, along with a doctor. The doctor told me my little girl was going to be born with a cleft lip and maybe more but they couldn’t get a good picture. As soon as I left the clinic, I called Brandon at work to tell him
Savannah was just starting the summer prior to her freshman year of high school in June 2021. She is an active girl that loves AllStar cheerleading, sideline cheerleading for her school, track, golf, and nearly all things active. She was looking forward to sleeping in late, swimming, neighborhood kickball games, unlimited sleepovers, babysitting to earn money of her own, starting school, cheerleading practices, and enjoying all the joys that summer brings when she noticed some abnormal bruising. She was taken in for some routine labs and went about her summer day. The entire family’s world was flipped upside down when they received a call from the on-call pediatrician late that evening stating that Savannah needed to be taken to the emergency room immediately as her labs were acutely abnormal.
Savannah was taken to Blank Children’s Hospital and was diagnosed the next morning with Acute Myeloid Leukemia. Her diagnosis came as a shock as Sav was a vibrant, healthy, active 14-year-old and a life-threatening diagnosis was not what anyone was expecting from what were thought to be pro-active, routine labs. She immediately had a port placed and started aggressive inpatient chemotherapy the next day following diagnosis. With Savannah’s age and genetic mutation of FLT3 ITD, she was considered in a high-risk stratification, and treatment needed to occur quickly. Her treatment plan would require a Bone Marrow Transplant as the only curative option with her high-risk genetic mutation. Savannah underwent two rounds of inpatient chemotherapy at Blank Children’s Hospital, each round requiring month-long hospital stays with minimal days at home in between.
Throughout her second round of chemotherapy, Savannah experienced a chemotherapy reaction similar to chemical burns with blisters on both of her legs. The pain was so excruciating that she was unable to walk without a walker to help support her. Savannah’s perseverance and determination throughout this time was awe-inspiring. She would push through the pain with tears running down her face and say, “No I must walk, I am stronger than this. I am a cheerleader. I have to walk.” Even as the nursing team reassured her that time to rest and allow her body to heal from the trauma of the chemotherapy was ok, she pushed on with a level of determination and stubbornness that was unmatched.
Having twins is overwhelming in its own right. And we were so overwhelmed in November of 2016 when we learned we were having twins. Maggie and Will were born on May 11, 2017, 5 weeks premature. Maggie was our fighter from day one. For the first hour of her life, she struggled to breathe on her own, but just prior to needing a NICU stay, her lungs got to work and she was able to go home on schedule. And that set the tone for her life. When she encountered a challenge, she always rolled with it and adapted accordingly. She didn’t crawl, so she scooted on the floor. She didn’t like to get messy when she ate, so she developed a pincer grasp, enabling her to eat as daintily as she chose, very early on. While she struggled to get around, as soon as she learned to talk, it was in full sentences, and she immediately set to bossing around Will and her older brother, Stuart.
When Will began to stand and walk and Maggie did not, we didn’t think much of it. Maggie and Will had always developed differently and the thought was that Maggie would catch up. And as the months passed… she didn’t. She could barely get her legs under her and stand. She started physical therapy in January of 2019. By her 2nd birthday, she was able to stand and walk, but from there, her walking never really improved. It was her physical therapist who realized something was wrong. And then Maggie’s eyes started to cross. Her milestones began to regress and her voice got quieter. Every specialist we went to was baffled. They knew something was wrong with Maggie neurologically, but nothing definitive showed up on any scans or tests.
On February 28th, 2020, we received the phone call from Maggie’s neurologist that gave us the answers we simultaneously craved and dreaded. Maggie was diagnosed with a rare genetic disease, Metachromatic Leukodystrophy or MLD, which affects approximately 1 in 40,000 people. My husband and I are both carriers of a defective gene. The odds of two carriers having a child with MLD are 1 in 4. When a child inherits both genes from their parents, their body does not create an enzyme, Arylsulfatase-A, which is responsible for removing cellular waste, called sulfatides, from the body. The accumulation of sulfatides causes the breakdown of the protective myelin sheath in the central and peripheral nervous systems. MLD is terminal with a life expectancy of 2-5 years. In the weeks and months following her diagnosis, Maggie completely lost her ability to walk, talk, and play independently.
Life is still overwhelming. We never know what each day will look like with Maggie – whether she will be alert and wanting to interact or sleepy or in pain, and we and her brothers just have to adjust to whatever Maggie needs that day. But, despite all of that, each day she inspires us to love and live fully, to take what we’re given, find ways of working with it, and move forward. We have learned to recognize God’s presence and grace in the flash of her smile and in the kindness of strangers who have reached out to us from all over to share their love and support. We hope that her story will inspire others to love boldly, to smile and laugh often, and to recognize and be instruments of God’s grace.
My name is Maria, and I am a 46 year-old mother of 4 children. I was born in Brownsville, Texas and I moved around a lot when I was younger because of domestic violence and ended up in Florida as I got older, where I had two of my daughters. In 2007 we left to start a new life in Kansas where I had two more beautiful children, a boy and girl. My children mean the world to me and are a very huge motivation for me to get up every day and do my best. Even if it’s been very hard for us, we do it as a team.
The year 2020 has been a rollercoaster of a year for us for sure. Before I was diagnosed with either Fibromyalgia or Crohn’s disease, no one really had answers for what it could be. Most times I would be sent home with just
medicine to handle the pain and no answers. Really it was just constant doctor appointments, hospital stays and long nights with an inflammation in my legs that felt never-ending. It made it very difficult to complete daily tasks or even work. Not being able to go to work was very hard for me financially and also because I had so much love for the small children I would care for at my job.
In June 2020 I had one of the worst and best days of my life. I was diagnosedwith Crohn’s Disease. It felt amazing to finally have an answer for all the symptoms that I was having. That also meant I would be closer to having control of my life again. I started Stallera but before receiving the shot I was having panic attacks and expecting the worst outcome to become real. I had prayed day and night basically; fortunately, I went through with it and did not have a bad reaction. The medication helps manage the flare-ups for the most part. I will continue to receive the treatment every 8 weeks. The downside is it makes me feel very tired and I can’t enjoy activities with my children like I would like to but I thank God every day I get another minute with them.
My mom Dorothy, lovingly know as Dot, was born and raised in Iowa and still resides in the small farm town of Wellsburg, Iowa. My parents have been married for 52 years and together they have three children, 8 grandchildren and another on the way. She enjoys crafting, cooking, gardening, and cruising around in their old convertible looking at the freedom rocks throughout the state.
Doctor to finally hypothesize that he thought she had botulism. My mom’s health was rapidly worsening and the ICU doctors let the family know if they didn’t get a treatment plan quickly she would not survive. Because botulism’s official diagnosis can take from 7-10 days to confirm, the Doctor had to work quickly to plead his case to the CDC for an anti-toxin to be flown in on an emergency flight from Atlanta. There are only 100 doses of anti-toxin in the US and without this medicine the toxin eventually attacks all the nerves and muscles in one’s body and they do not survive. Botulism is extremely rare and Type-F (the type my mom had) is the most severe and rare. There have only been 13 cases in the US since 1981, and although they know it is foodborne, the source remains unidentified in the majority of cases.
The anti-toxin saved my mom’s life, but by the time it was administered she had lost her ability to breath and was basically paralyzed from the top down. She could not open her eyes, lift her head up, speak, or do anything on her own. She was able to lift her hands up enough to be able to communicate with us through her hand movements. My mom spent a total of 7 weeks in 4 hospitals learning to do everything all over again – breath, eat, drink, talk, stand, walk, smile…everything. During the majority of her hospital stays, she wasn’t allowed visitors due to COVID. She also could not just pick up the phone to call friends and family because she was unable to speak or hold a phone. Thankfully our family was able to fill her room with “fatheads” of each of us so she could at least see our smiles on those dark days when she wanted to give up. She is currently home to finish her rehabilitation. Faith and family have given her the 
strength to not only regain her life back, but also exceed all of the bench marks doctors give her. Right now my mom is working towards getting her strength and energy levels back. Because her body went through so much she was also diagnosed with “broken heart syndrome” which is a heart beat irregularity that will continue to be monitored. During the x-rays for her tracheotomy they found nodules in her thyroid and will be doing a biopsy of those. She also has to stay home and avoid people as much as possible the next several months. Even 
getting the common cold can compromise her whole health and recovery.
As the Ben Lawrence Family was also a recipient last year. Below is an update since last year.
leukemia and the struggles he has had, they needed a donor willing to give directly from their bone marrow, which is more invasive for the donor. Covid also brought obstacles of knowing they have 72 hours of getting the stem cells from body to body so that meant we had to find a donor here in the US. We are incredibly thankful a match was found and the selfless donor said YES!!!
released from the hospital and will be joining me in the hotel by Mayo.
Hi, we are the Barta’s. We are a family of five: Michael and Stacey, along with our three kids Bridget (8), Luke (2), and Greta (3 Months). Our daughter, Bridget Barta, has a rare disease called Sanfilippo Type A and that is why we have been nominated this year.
talking, you name it, we couldn’t gain ground. Even simple skills in order to keep her safe while using the stairs, not touching the stove, not running into the street….she could not learn simple things that most little ones pick up naturally. We went to doctor after doctor looking for answers.
Sanfilippo is basically Children’s Alzheimer’s. Imagine your kid living a normal life until 2 or 3, but then all growth stopping….then slowly losing everything until they pass away. The ability to learn, talk, laugh, sing, smile, eat, walk….everything slowly leaves them. It’s like a painful, slow deterioration of your baby and their brain.
couple miscarriages, in-vitro, and multiple genetic tests, she is joined by her little brother and sister who DO NOT have this terrible disease. Her brother Luke has already advanced far past Bridget and in fact is her caretaker. Luke does everything for that girl – helping her with food, water, and anything she needs. Bridget is starting to realize she now has a little sister in the house too…and we have caught a couple smiles as she looks at the new little baby in our house. Our family is complete for the time being and we hope Bridget will be with us as long as possible.
11/16/2020 update!
young for them!” Thankfully, he believed me. He actually walked across the hospital to the neurology clinic and talked to the neurologist there, and came back with an appointment for the following day. I was not happy during that appointment, as I had to beg him to order an MRI, even though I have a family history of benign brain tumors. The neurologist did finally agree to order one, but he was convinced she was just dehydrated. While we were at this appointment Brya had two of what they are calling “pseudo-seizures.” She would be talking to us and then would just suddenly zone out like she was staring off into space for a few minutes. The following day she had one of these at school as well, but this one lasted a lot longer. I had her grandpa pick her up from school and take her home with him. When I went to pick her up after work at 5:30, he said she had been sleeping since 11:15 that morning. When she got in the car I noticed that she wouldn’t turn her head, she turned her whole body. When I asked her to just turn her head she tried and just started crying. At that point I decided enough was enough and I was taking her to the hospital. I took my younger girls home and then immediately took Brya to Blank Children’s Hospital. The resident physician ran a few tests on her that involved running in the halls, as I had told her that her balance was off and she hadn’t been walking in a straight line for a couple days. After they returned from running in the halls I was advised the plan was to get some blood drawn and start an IV for fluids, and then they were going to order a brain CT. We went down for the CT about 9pm and when we came back up Brya fell asleep. About 10:15pm the attending physician came in and said he was going to find someone to come sit with her so that we could go somewhere and 
talk. He took my mom and I into a small family waiting room and told me that the CT had showed a baseball sized mass on her brain stem. We were immediately admitted to the hospital and the next day Brya underwent a 4 hour long MRI of her brain and spine under general anesthesia to confirm the oncologist’s diagnosis of Medulloblastoma. Once she was done with that and started to wake up, we were transferred to Mercy Medical Center for surgery. She was admitted to the PICU and the following morning she was in surgery by 10am to have her tumor removed. This surgery took about 8 hours, and was the longest day of my life. After surgery, she spent 3 days in the PICU and a day and a half on the regular peds floor, and then was discharged home. A couple weeks later she started treatment. She underwent 6 weeks of radiation to her brain and spine as well as 56 weeks of chemotherapy, which included weekly infusions in the clinic and also a once monthly hospital stay for a weekend to get inpatient chemotherapy. She also spent many unplanned stays in the hospital for fevers. Once a kiddo has a port put in, if they get a fever of 100.4 or higher it means an automatic trip the clinic if during regular hours, or the ED if after hours for blood cultures and other labs. During treatment she also had scans every 3 months. Once she was done with treatment we eventually moved to scans every 6 months, and then to yearly. She spent 4 good years NED (No Evidence of Disease), but then in May of 2020 she had a seizure. She woke up one morning and told me she didn’t feel good but couldn’t really explain it, just said her body felt disgusting. I told her to take some ibuprofen and lay back down for a bit. About 45 minutes later my other daughter called me and told me that now Brya was saying she couldn’t breathe and she was too young to die. I rushed out of work and home. I took her to the doctor and they 
said clinically she was fine- her reflexes were great , and her O2 was good as well. They couldn’t find anything physically wrong with her. On the way home, I stopped at Wal-mart to grab toothpaste and mouthwash for my youngest child and when I got back out to the car I went to put my debit card back in my purse and noticed her hand twitching. By the time I sat up from my purse she was in the middle of a full blow grand mal seizure. I called my husband to tell him what was happening and drove her to Blank Children’s Emergency. I dropped her off at the door with a security guard and went to park my car. By the time I got parked and got inside she was having another seizure. I got her registered quick while the nurses and doctors took her to the back. When I walked into her room she started having yet another seizure. They were finally able to get her some medication to help stop them. They did another CT in the ED and that actually didn’t show us anything. She was admitted to the hospital and that afternoon she had an hour long EEG done that caught another seizure. The following day she had her regular yearly MRI done and that showed some swelling on her brain but no tumors. At this time we just assumed the swelling was from the 4 seizures she had the day before. We did however start a work up for any and all infectious diseases and anything we could think of that could have caused the seizures, as she had never had a full blown seizure like that before. These all came 
back negative. We did a spinal tap to check for things and this came back negative as well. She had a follow up MRI about a month later, which showed that the swelling had increased just a little bit and was not getting better as we had hoped. At this point we were referred back to her neurosurgeon at Mercy Medical Center to look into doing a biopsy on the swelling to see what was going on. We went in for a biopsy on July 7th, 2020, and on July 14th we got the call with the results. My sweet 11 year-old baby girl was diagnosed with a terminal high grade Glioma. The life span of kiddos with this tumor is about 13 months. The doctor said that with treatment we may get about a year with her and without treatment we would only get about 6-9 months. We did another MRI in August and it showed that her tumor had grown much faster than we thought it would. At the beginning it was just her right temporal lobe that was affected, but in August the tumor was covering the whole right side of her brain and another grape sized tumor had formed and spread to the left side of her brain as well. We were told at that point that our time frame with her was cut in at least half. We have opted to do treatment and have now completed another 5 weeks of radiation and are getting ready to do her 2nd round of chemo. Towards the end of radiation we did another follow up MRI and found that the tumor has shrunk significantly! We will do another MRI sometime in November to check on the progress after she does her 2nd round of chemo next week.
After more tests and echos and a couple of daily meds, he seemed to really be doing fine. He would take it easier than he had before in terms of physical activity, but really, the rest of his summer was pretty low stress, which was a good thing, because we were expecting a baby boy in the Fall. Unfortunately, the Fall came and his health took a nosedive QUICKLY. By the time we went back to school (I work for Des Moines Public Schools, and at that time, Freddie was working for DMPS too) he was very ill, eating only an apple each day or forcing himself to drink an Ensure drink too. Breathing was VERY difficult for him and each day got scarier. We were fearful and there were a lot of tears. There were also a lot of appointments for bloodwork, echos, EKGs, Holter monitors, and a couple of hospital stays.
He was moved to the ICU the next morning, and this is where he stayed for the next 28 days. I slept on a cot each night, not wanting to leave his side. It wasn’t long before the Center of Disease Control and doctors tried to figure out how someone so healthy became sick so quickly. Cardiologists went in through his jugular and did a biopsy of his heart to see if they could pinpoint what virus might have initiated his viral myocarditis (heart failure caused by a virus) but they couldn’t find anything unusual or rare. Their conclusion was that he simply had a bad cold and when his immune system was “down” the virus attacked his heart.
It is fair to say that recovery had been long with weeks of cardiac rehab, managing 15-20 meds a day and numerous set-backs all while managing life with a newborn. Freddie got used to living life with a driveline that led from his heart, out of his abdomen (which required daily sterile cleaning) and connected to a large controller and batteries that he carried in a pack or bag or vest 24/7. This included of course, a special waterproof bag that went with him even into the shower. This is also the time where the official wait for a new heart began. Freddie lived at home with the LVAD keeping him alive and all was fine until spring/summer of 2013. His health began to decline rapidly again. (ICD placed in March of 2013, ICD removed in August 2013 and a pacemaker replacing the ICD) I took him back and forth to and from home to Mayo more times than I could count. His kidneys began to struggle at this time too. (They were busy flushing so much fluid that began to leak again from the heart that they never got the blood supply they needed, so they started to fail.) By the end of the summer cardiologists had him living at Mayo-St.Mary’s Hospital in Rochester, MN for around-the-clock care. While he lived at Mayo, I would stay at home with Zion and Freddie’s big kids, my stepkids (teenagers at the time) so I could teach middle school all week. (I knew I needed to maintain income and insurance and save my leave from work for his transplant.) I’d always pack the car on Thursday night so after teaching on Friday we could head to Mayo to visit Freddie for the weekend. Finally, by the Fall, even while living at Mayo, he had gotten very sick. His LVAD just wasn’t able to help any longer and his heart was failing him again. He was taken into surgery and his heart was removed and was replaced with a Total Artificial Heart (TAH) and he began bedside dialysis. This was a few days before Thanksgiving of 2013. Freddie continued to live in the ICU at St. Mary’s. My kids and I would continue to go back and forth to visit him. In January I received a phone call after school one day. There were cardiologists with Freddie to tell me that his match had arrived. That night Freddie was in surgery and he received the most generous gifts, a heart and kidney, from a 21-year old donor, Steve, who passed away in a wintry car accident. Freddie and I had to live in Rochester for three months after his transplants in order to attend all of the appointments. We rented an apartment while still paying our mortgage back home. It was surely a whirlwind with a baby and being a caregiver to Freddie too. Since then we’ve been so touched to meet Steve’s family. They are so kind-hearted and they bless us whenever we see them or get a card from them in the mail. Unfortunately, we had to tell them last year that Steve’s heart and kidney are failing Freddie. He spent all of 2019 very sick again with multiple trips to and from Mayo and many stays in St. Mary’s as well. He has been officially listed for another heart and kidney. So…we wait again for the match for him. We know so much of what we are facing. For example, we know all about life with immunosuppressive drugs, heart biopsies, and trips to and from Mayo. We also know we will have to find a way for me to afford to take time off of work to be with Freddie for the surgeries and months of recovery. We know that we will need to find a place to live in Rochester while still paying for the mortgage in Des Moines. We know so much about what to expect, yet there is so much underlying worry and fear of what will be different this time. Freddie has been opened three times already (LVAD, TAH, and transplant) so there is more danger with this next sternotomy and scar tissue. This time around Zion isn’t a baby and I can’t haul him in a carrier or in a stroller. He is a second grader. There is stress around what will happen for him with school and time away from home or time away from us if he stays with family. However, we also know that we will be okay, we will get through this again because our families and friends and even people we will never meet, like the Holiday Streakers, will be with us to lift us up and support us on Freddie’s continued journey to another heart and kidney transplant. The kindness of others has blessed us continually over the years so I don’t have any reason to think the blessings, prayers, love and support will stop now.
Grant was born on his due date. He was your typical rambunctious boy and seemed to be physically ahead of his time. Soon after Grant turned 2, he got a fever every day, but not all day long. After 5 days of fever we took him to the pediatrician thinking he had an ear infection. Everything came back fine. They told us to come back in 2 days if he spikes a fever again. He did so we took him back. Everything checked out fine again and he did not have a fever. They said it was probably a virus upon another virus and we went home. He spiked a fever around dinner time that same night so we were told to take him to Children’s Hospital since they can do more testing. It was a Monday, and we were not in a hurry, so we took him in after dinner. Little did we know he would not go home for 2 weeks. After an x-ray, ultrasound then many more scans over the next couple of days, then a biopsy, we were told the earth-shattering news that Grant has Stage 4 high risk neuroblastoma. We had never heard of that before. From there things happened so fast. He had a line placed in his chest. There was a complication from that surgery that resulted in him being in the ICU with a tube in his chest to drain the blood. Soon after chemo started. We were released from the hospital Christmas Eve. From there Grant had more chemo, more ICU stays, had a 12-hour surgery in New York City, more chemo at home, immunotherapy, and proton radiation at Mayo. Treatment started December 2016. Grant was considered stable (he has one spot on his skull that has remained stable since December 2017). 
them, there was no cure. The doctor in New York was not convinced it was a true brain tumor and reviewed everything with the team there. The only was to know for sure was to have surgery. We flew out to New York City and Grant had brain surgery. This was on September 15th. He was released 48 hours after surgery. The surgeon talked to us after surgery and said he did not see any obvious signs of cancer, so we had so much hope that is really was not cancer. We waited over a week for pathology to come back and it did come back as neuroblastoma. We flew back home to do chemo and get re-set up for total brain and spine radiation. Grant is just finishing radiation. We need to scan again to determine the next step.
limited to) hearing loss, growth issues, losing his hair multiple times, nausea, vomiting, gut issues, thyroid issues, he may need a hip replacement by the time he is a teenager, lower IQ, cognitive issues, and the list goes on. It is horrible hearing the side effects. All in his 5 years of life. As a parent, you want to protect them and take it all away and wish you could take their place. Grant is just the cutest, sweetest little boy and very smart. He also has an awesome older sister and wonderful little brother that wants to do everything Grant wants to do. Grant has endured horrendous things these past 4 years he has been in treatment, but it is amazing seeing him smiling and having fun. I was told I had cancer when I was pregnant with Grant. That is extremely hard to hear. Being told your child has cancer is indescribably so much worse.
Rowan was born on October 5, 2019, five days before her guess date. After ten hours of labor, our perfect, healthy baby girl was in our arms and in that moment, our world changed forever.
May arrived, and I consulted with Rowan’s doctor after hours of independent online research. Her doctor ordered a chest x-ray and blood work to rule out infection to explain the cough. The x-ray and blood work showed no signs of infection, rather at that time, the blood work revealed only a very mild anemia with no discernable cause. At that visit, I requested a consultation with a pediatrician to explore the possibility of infant reflux. My research had led me to conclude that reflux would explain several of Rowan’s symptoms. Little did we know that our world would change forever for a second time on May 6,, 2020.
Rowan and I spent ten days in the hospital for our first hospitalization, and Noah was allowed to visit with us for approximately one hour at a time. At the time, we lived 45 minutes from the hospital, so he only found it possible to visit once each day. I spent my first Mother’s Day in the hospital, alone with my baby. I attended my class’ virtual graduation ceremony from veterinary school and recited the Veterinarian’s Oath in our hospital room. Family members and several friends of family sent cards and flowers to ease the pain of the nightmare that had become our reality.
After four cycles of chemotherapy, Rowan’s tumor had shrunk by approximately 40 percent. Despite a fantastic response to chemotherapy, Rowan’s team determined that a liver transplant was most appropriate for her moving forward. A unique fact about the liver is its capacity to regenerate and because of this, a living adult can elect to donate a part of their liver to a transplant candidate. A donor, who wishes to be kept anonymous, came forward to offer a portion of their liver in a most selfless and generous act to give Rowan the best chance possible at a successful transplant and a healthy, disease-free liver. After undergoing a thorough medical evaluation and several tests, Rowan’s donor was approved, and the transplant was scheduled for August 11, 2020.
We also knew we would be cutting it close by returning home when we did during her fifth cycle. Because the chemotherapy drugs Rowan received were so hard on her immune system, she had always gotten sick to the point that required a mid-cycle hospitalization. And sure enough, on our first night home, Rowan developed a fever that required her to be hospitalized in the middle of the night. We had been home for no more than nine hours before returning to our home hospital in Des Moines. Despite wishing we could have spent more time at home, we were simply happy to be back with a team that we had come to know and love. We spent several days in the hospital because Rowan’s immune system could not fight the infection that had developed at her G-tube site. We had never seen our little girl suffer as much as she did during her fifth cycle, and we returned home for only three days before it was time to return for cycle six.In March of 2018, we received the devastating news that Ben has leukemia. Our world fell apart.
Ben had gone in for a physical to check his blood pressure, and mentioned that his stomach was sensitive to the touch. He had taken a hit to the stomach while coaching wrestling, and we wondered if he’d injured his spleen. The doctor ordered some tests and an ultrasound. We were expecting to hear that he needed some medicine for high blood pressure and possible treatment for his spleen. Cancer was the last thing on our minds.
Instead, we got a call that Ben has leukemia. Those next few weeks seemed like an eternity as we waited for an oncology appointment and the results from a bone marrow biopsy. We then learned that Ben has Chronic Myelogenous Leukemia (CML).
We were flooded with sadness and fear and uncertainty. Questions about the what-ifs of our future kept us up at night. Ben has always worked, while I stayed at home with our five kids. Could Ben keep working? Would I have to start? What would insurance cover? How would Ben get to his appointments? How would the kids adjust, who already were adjusting to new schools and friends after our recent move to Ankeny?
Regarding treatment, the doctors were initially optimistic and prescribed target chemo with a daily pill. They thought Ben, at only 39 years old, should respond well and his cancer would be easily controlled.
Unfortunately, cancer is unpredictable, and it didn’t take long to figure out Ben isn’t the norm when it comes to leukemia. There are five treatment options, and he has failed four of them.
Ben can never complete a round of treatment as his good numbers drop too low and it becomes too dangerous to continue. He has had some blood transfusions but doctors are conservative with them, knowing a bone marrow transplant is around the corner.
But a transplant comes with many complications, so the doctors want to make sure they know we have exhausted all our options. With a transplant, they take you to the brink of death and then bring you back again. A BMT comes with a long negative list, including potentially not surviving the transplant, possible transplant failure (sometimes the transplant doesn’t take, so no cure), the body fighting the transplanted cells and vice versa (painful and possibly debilitating graft vs host disease), the risk of causing a secondary cancer, and so on.
Then there are the logistics of a transplant — Ben and I would have to move to Minnesota for at least three months, living in a hotel near the hospital. We would have to line up care for our kiddos at home and have them come visit on the weekends, when possible.
On top of all that, it is a frustrating battle of helplessness, exhaustion, vertigo, bone/joint pain, medical bills and various other side effects – we don’t ever get a “break.”
As a family, we are trying to find our new normal. Ben has a positive attitude and continues to work. I am trying to figure out how to be there for Ben and the kids, and balance going back to work in addition to my home duties and endless appointments.
One of the hardest things is figuring how to talk to the kids about it and how to answer their hard questions — trying to provide comfort and security without making any promises.
Which is not to say there are no blessings within all the pain. We do have a new perspective of the gift of life, and on the importance of never taking a day for granted. We are reminded that we only get ONE — one life, one body, one shot at this, so instead of getting sucked into the negatives, we are pressing forward with the best we’ve got. Life is a gift that should be cherished, no matter the circumstances.
The journey is hard and the road is still very long, but we are grateful for the love, prayers, support and encouragement of our family and friends, and those people who barely know us.
Thank you for reading our story. If you would like to continue to follow along, we have a Facebook page where we share updates. You can find us at Life with the Lawrences.
Austin turned 3 years old in July and has already endured so much in his little lifetime. On June 20, 2017, the world in which Austin and his family knew…was forever changed.
It was just a few weeks before his 1st birthday when they discovered that Austin had a very rare, benign brain tumor, called “craniopharyngioma.” This is especially rare in someone as young as Austin. Austin underwent his first brain surgery before he even turned 1 and celebrated his 1st birthday in the hospital. Since then, Austin had to undergo another brain surgery, when he was 18 months old, and 30 rounds of proton radiation, while being sedated every day. During the first two surgeries, the doctors were able to drain the “cyst or tumor” and treatments were considered a success. Many prayers continued and the tumor remained under control so-to-say. However, on August 19, 2019, we were told that the tumor had grown and that another brain surgery was unavoidable. However, this surgery is by far, a much more invasive surgery and there are serious implications of what could result from having this type of surgery. It is currently scheduled for October 22nd. This surgery will
Blank Children’s Hospital
Specifically, the Holiday Streakers will support the Blank Children’s Cancer and Blood Disorder Center Compassion Fund. The Blank Children’s Cancer and Blood Disorder Center Compassion Fund is designed to provide additional support to patients and families beyond what the Cancer and Blood Disorder Center is able to provide. Assistance is based on financial need and is designed to assist with the unique, medical needs of patients and families. This program is supported by 100% philanthropy and would not be possible without the generous contributions of individuals and groups such as the Holiday Streakers. The fund as supported items such as transportation costs and gas cards, meal tickets, travel expenses, prescription costs, equipment needs, and even paying for electricity, water, or rent to help the family.
Aila Nesbitt (pronounced: A-luh)was diagnosed with B-Cell ALL Leukemia in July of 2018 when she was just three-years-old. In the weeks prior to her diagnosis, Aila had been fighting several colds and fevers off and on, and had coincidently hurt her knee while playing on the trampoline (one of her favorite activities). Out of precaution, Aila’s pediatric doctor decided to run blood tests to make sure nothing more-serious was going on; several days later, we were called in over the weekend for additional testing and x-rays as her counts were slightly off.
receiving chemotherapy on a weekly basis. Her high-risk treatment plan has involved several blood transfusions, multiple sedations for bone marrow biopsies, lumbar punctures, countless pokes, pills, and tears than any three-year-old should ever have to endure. On her third round of Pegaspargase chemotherapy, she went into anaphylactic shock and was hospitalized in the PICU for several days. This changed the course of her original treatment plan and received the alternative chemotherapy, Erwinia, which required six times as many infusions.
Founded in 1897, 
accelerating our efforts to bring answers to waiting children and families. When the CRI is complete, Children’s Mercy will have five-and-a-half times more space dedicated to research than it does today, and we will more than triple the number of staff working each day to find answers for children and families in Kansas City, and around the world.
In 2016, Ryan was diagnosed with 
whirlwind visits to the ER since June for blood clots on the lungs and choking. As ALS creeps upward (Ryan first lost strength in his legs, then arms and trunk), the impact on our hearts and heads is felt much deeper by all of us, including the kids. Ryan most recently lost his voice [for good] and has fully transitioned from eating table food to feeding tube nutrition. We are also preparing for the addition of a breathing machine at night.
My name is Jessica Kramer and I am a Breast Cancer on-going survivor, also known as living with Metastatic Breast Cancer. Here is my journey. On January 12th 2007, my husband and I welcomed our first baby girl into the world, Sophie Elizabeth. After many struggles to get pregnant and stay pregnant, God finally blessed us with a precious baby. What a blessing!
robbing me time with Sophie, robbing me of doing the day to day things that we take for granted. I didn’t get as sick as some people, which I was so thankful for. Before I lost all my hair, I took some friends with me to get my hair cut short and to find a wig. I remember one morning taking a shower and there it was, the last of my hair, it was going down the drain. I don’t know if you can ever prepare yourself for that moment. It takes a toll on you, it made me feel like I was losing the fight. Cancer was getting the best of me, it was beating me. I sat down and cried. I was bound and determined to watch Sophie grow up, take trips with my husband, and enjoy life. Cancer was not going to beat me!!!
is ten years old, my middle child, Conner, is five, and my baby, Allie, is almost a year and a half. On December 6th, 2018, I received a very unexpected diagnosis of Relapsing Remitting Multiple Sclerosis. I was just four months postpartum with my third child, when I awoke from a deep sleep feeling like I was having a stroke. My husband rushed me to the hospital, and after a full workup, the doctor ruled out stroke and during the conversation had mentioned possible demyelination. Demyelination is damage to the protective covering surrounding nerves. Being a nurse, I understood that demyelination likely meant a long term health problem.
Following the diagnosis relapse ( a relapse is an active immune system attack to the protective coating of the nerves in my brain called myelin), I experienced three more severe relapses in exactly 365 days from diagnosis, with yet another relapse occurring the day I began chemotherapy to hopefully halt the disease. Each relapse significantly impacted not only my ability to work as a RN caring for patients in a hospital, but also affected my ability to live my day to day life and even care for my children in the manner I was accustomed to. Symptoms throughout the relapses have included severe double vision and nystagmus, balance and coordination issues, inability to walk independently, debilitating fatigue in which I sometimes fall asleep in the middle of playing with my children on the floor, severe impairment to equilibrium, bladder control issues, pudendal nerve entrapment from piriformis muscle spasticity resulting in excruciating pain, arm spasms and tremors, and sensory disturbances. More than once I have been unable to safely carry my youngest, and there have been times where I have had to rely on my oldest to change her and dress her while my husband is at work. My middle child has sometimes had to fend for himself for lunch, grabbing string cheese and fruit snacks and muffins from the kitchen, while my husband and daughter were at work/school for the day. Due to the severity of my symptoms, I have been unable to work since the relapse that occured the last week of August, as my body has yet to adequately recover.
are severe and come frequently. Also, the patients tend to be less optimally responsive to the medications used to stop relapse activity once it has started. When this became evident, I began seriously researching the options for treatment. I am a research obsessed RN by profession, and I was not willing to settle for anything less than the best. I learned of a treatment called Hematopoietic Stem Cell Transplant, in which chemotherapy is used to eradicate the immune system, and the patient’s own hematopoietic stem cells are utilized after chemotherapy to help the body jump start a new immune system. The treatment has an 85% efficacy rate at halting RRMS, but it is only available in limited clinical trials with very strict criteria in the United States. My insurance denied the chemotherapy, because I have not failed three ‘disease modifying drugs’ yet. I was not willing to wait to see if I fail three DMDs, because a failure means more damage to the myelin sheath that surrounds the nerves of the brain and central nervous system. Though I am still able to retain most of my pre-MS abilities, once the ‘lesion burden’ becomes too great, I will no longer be able to maintain a mostly normal life. Each failure means my brain gets more lesions, and as active and aggressive as my disease is, I will likely advance to the Secondary Progressive stage more rapidly than most who are diagnosed with RRMS. My children are still young, and I enjoy an active lifestyle, so I have been willing to fight for the best option available.
Knowing the reality of my disease activity, and the three relapses I have had in the four months since making the decision to pursue HSCT, my husband and I chose to travel internationally so that I could undergo HSCT as quickly as possible. I am currently in Mexico, at one of the best treatment facilities in the world, to get HSCT treatment. My husband and I traveled here for a 28 day treatment. A wonderful group of family and friends at home are caring for our three children, and he is caring for me as I undergo this intense treatment. Though the odds are well worth the realities of the side effects, it will still be a long road to recovery. Once I am able to return home at the end of the month, I will have to stay in my home for at least three months, longer if my immune system doesn’t recover in that time. I will be unable to work as a nurse for at least six months, maybe even a year to two years, because of the physical demands of my job, as well as the higher risk of infection associated with the healthcare field. The purpose of HSCT is to eradicate immune memory, so it means I will be susceptible to childhood illnesses and need to be revaccinated. I will also need to undergo regular physical therapy for quite some time, as the treatment process combined with the realities of MS often causes patients to become weak.
Matthew Rodriquez
Everything began in December of 2107. Matthew was just like any other five years old, happy and so full of life. Like every morning, I sent him to school, but this time he came home from the bus crying hysterically complaining of a headache and the smell of the bus. He mentioned it made him nauseous and begged me not to let him go anymore. Like most moms, I reassured him it was going to be okay and tomorrow would be much better and sent him the next day. However, this time was different. Not only did he continue to go on and on about the headaches and the horrible smell of the bus he began to have fevers that lasted all throughout the night. Matthew mentioned his legs hurting, and I began to assume these things going on were growing pains. As the days went on I began to notice his loss of appetite, which was rare especially during the holidays. The following week was Christmas Eve, which we spent with family and friends. Seeing everyone so happy and cheerful I couldn’t help but notice my little boy feeling more down than usual, it was almost like I didn’t know who or what was taking over him. The fevers, nausea, and bone pain had me worried. I scheduled him a doctor’s visit and got in right away. They performed a normal check-up, where then they told me was normal and in range, it was most likely a virus going around. Something deep inside me told me it wasn’t just that, it couldn’t be!
I began to reach out to other doctors and they all told me the same thing, this began to make me more and more worried. Not only did I know the little boy standing in front of them, I knew something wasn’t right, but I could also feel it in my heart. I begged the doctor to try one more time, they assured me they were the specialist and I was just the mother and there was nothing more they could do for Matthew. I said, run a blood test. They hesitated but the only voice I could hear was Matthew’s cry and yearn to say mommy help me, please help me my head and bones hurt. They proceeded with the blood test and I was expected to receive a phone call first thing in the morning. Only this time, I didn’t even make it to my driveway to the news that I need to take Matthew to the emergency room immediately. There, they continued to run tests. Shortly after, they told me Matthew has acute lymphoblastic leukemia- a childhood cancer. It was in that very moment that my whole life fell to the ground.
From that day forward, Matthew was hospitalized for days, weeks, and even months a time undergoing various treatments and studies. I knew God was by my side. I quit my job to be able to meet Matthew’s needs to the best of my ability while his dad worked two jobs full time. We had other children at home. Matthew is the youngest of five, two in college, a senior in high school, and last but not least my little nine-year-old girl. It was our family’s faith and strength that got us through those days. There just isn’t any words that could possibly explain what day after day felt and looked like for us, much less what Matthew underwent. But what I can say, and will proudly do so for the rest of my life is that Matthew is now cancer free. He is still undergoing various treatments at home and has limited the doctor visit twice a month for the next two and a half years. Despite that, it’s those individuals for whom I am thankful for- the doctors, nurses, and specialist that left an impact not only on me but Matthews’ heart as well.
The little boy that stands in front of me today is a train loving, silly, outgoing, sweet soul with God’s grace shining right through him. I am blessed to have my healthy little boy back and I will always have a special place for the families that have gone through any hardship and I will continue to pray for healing. Matthew is now 6 years old and in first grade. Although he may not admit it, he will always share a special place for all his wonderful nurses and individuals who have left such a big impact on such a little heart. We may still have a long road of recovery ahead, but with God’s grace and my family by my side, what seems like the impossible suddenly becomes possible. Thank you for joining us on Matthew’s journey.
-Janet Colin (Matthew’s Mom)
Children’s Mercy Kansas City
Keri Meyer
Joey’s Journey
Our family is one full of love, faith, and fun. Jim and I have been blessed with four wonderful children. In mid-October, 2016 we put everyone to bed in our typical fashion and in the early morning hours of Joey (5 ½ years old at the time) came into our bedroom to snuggle. Around 7 that morning, all of the sudden our bed started to shake. I thought Joey was being silly and I was preparing to tease him about making such a commotion. However, when Jim and I looked up, we quickly realized Joey was having a seizure. It was terrifying. As a professional in the world of special education, I have unfortunately seen children suffer seizures before – however, NOTHING prepares you to see your own child in this condition. We had put a seemingly perfectly healthy child to bed on Friday night and were waking up to a nightmare. We called 911 and were immediately transported to the hospital. The next few hours were a total blur, with Joey remaining in a post-seizure state for about 90 minutes, through blood draws
and other various tests. When he eventually “woke up,” hearing his sweet little voice was an absolutely precious gift. All of the immediate test results came back “normal”, and we were told children sometimes have seizures for no known cause. We left hopeful this was the case for Joey.
Our hope that Joey’s seizure was a one-time occurrence disappeared, as the next four weeks brought about frequent seizures, ambulance rides, ER trips, EEGs, and a four-day hospitalization at Blank Children’s Hospital. On 11/10/2016, our deepest fears were confirmed: an MRI revealed Joey had a brain tumor. There really isn’t anything to prepare you to see such images or hear these words from a doctor talking about your child. Every piece of our world was thrown into immediate chaos – and yet everything seemed slow and surreal – all at the same time. Thoughts streamed in our minds: This can’t really be happening – What kind of tumor is this? Will Joey survive? What will it take to make sure Joey survives this? How did this happen? Is this really happening? What will we tell our other kids? How will we all survive this?
We left the hospital on November 11 and headed home to try to figure out what we were supposed to do next. Joey’s neurologist had referred us to University of Iowa and Mayo. Appointments were made. Hotels were reserved. And, we slowly started sharing the news with our extended family and closest friends. We proceeded to have appointments in Iowa City and in Rochester. More tests, more bloodwork, more images, more of everything – including growing fear, became part of our everyday reality.
In addition to the amazing medical teams at University of Iowa and Mayo, we are blessed to have a pretty incredible school nurse in our support squad. Our school nurse, Keri, shared she had previously been a brain tumor nurse at St. Jude’s Children’s Hospital and made a request to reach out to her former colleagues to see if they would review Joey’s case and give us input. We readily agreed and felt blessed to have medical teams across the country reviewing Joey’s case.
The Wednesday before Thanksgiving we received a call from the brain tumor roundtable of doctors at St. Jude’s indicating they were accepting Joey’s case. What a mix of emotions this call brought. We were thrilled to know Joey would be taken care of by such a world-renowned team and hospital, and yet, this is a place nobody really wants to have to bring their children (other than to visit)! We scheduled flights and prepared to visit Memphis. Joey was subjected to many tests, further MRIs and diagnostic imaging, and we were transferred to LaBonheur hospital for surgery. Joey underwent a biopsy to help the medical team determine the type of tumor that had invaded our little guy’s brain. Due to the tumor’s location being so close to the midline of Joey’s brain and near so many converging blood vessels, the surgery needed to be an invasive procedure with the inherent risk involved. Nothing prepares you to kiss your baby, whisper “I love you”, and watch a piece of your heart be wheeled off for brain surgery. The biopsy surgery, thankfully, went very smoothly. Joey, an avid Star Wars fan, woke up in the ICU saying, “The force has awakened!” Joy leaped into our hearts at this!
After surgery and Joey’s recovery, we flew back to Iowa to celebrate Christmas with family while we waited for the biopsy results. Finally, the call came. The type of tumor
Joey has is incredibly rare (less than 100 cases are currently reported), but thankfully it is slow-growing. Surgery was scheduled for right after Christmas and we tried to have a faith-filled and memory making holiday season together. I found myself taking pictures and videos of EVERYTHING. All four children are by the Christmas tree – click. Joey is looking at an ornament – click. The kids have on cute pajamas – click. Photo after photo – because we honestly didn’t know if we would have another Christmas with all four kids again. Would Joey survive this surgery? Would surgery be successful in removing the tumor? Would Joey wake up and know who we were? Would he be able to walk? Even if his body survives – will complications from surgery take the Joey we know from us? Unimaginable questions kept spinning through our heads.
Right after Christmas Jim, Joey, and I once again boarded planes headed to Memphis. Another series of tests and surgery preparations ensued. We once again were in the hospital praying, begging, and hoping with all of our beings that surgery would be successful. On 12/29/2016, Joey underwent a six-hour surgery to remove his tumor. Surgery was successful in removing the majority of his tumor. Joey recovered from surgery over the next few days in the ICU – and we know the talent of his medical team, partnered with the prayers of many, helped Joey during surgery and into his recovery.
While we don’t know what the future holds, Joey brings joy to our world each and every day. We pray for strength to handle whatever comes our way, and to try to not let the worries and fears of the possibilities overtake our lives. Concerns about tumor growth and future medical needs are daily fears that are impossible to ignore. Fear of uncontrolled seizures is ongoing. Due to the remaining tumor location – the fear of Joey losing his ability to walk and run, and just be a “regular” kid – is never far away in our minds. Joey’s tumor is on his motor strip, which means it impacts his right leg strength and functioning. Each time he trips or falls, as little boys tend to do, we wonder…..are those tumor cells causing problems, or is that just Joey being a six year old?
Joey takes daily medications and Jim, Joey, and I travel back to St. Jude’s every three months for a series of tests, MRI diagnostic imaging, and blood work. While were are blessed to have a medical “dream team” for Joey, each trip adds to the emotional, physical, and financial burden of this unwelcome journey. Each time we prepare for the trips, our emotions spike to high alert. For the weeks leading up to medical trips, we prepare luggage, we pack medications, we plan distractions to help Joey get through the medical procedures, and we brace ourselves. Preparing Joey for the trips is difficult, as he is fully aware of the procedures that are coming. He hates the needles, fights, and cries during IVs, and doesn’t like “going to sleep” (being sedated) for his MRIs. We prepare our other three children to have mom, dad, and Joey be away from home for a week. I leave work, Joey leaves school, and we take a deep breath. And, we pray, and we hope.
Being the parent of a child with a brain tumor opens the door to a club of families – a club that you wish you never belonged to. (Don’t get me wrong, the people in this club
are amazing and incredibly supportive, but you still wish you weren’t a member of this particular club.) The other night, I read a message from another “brain tumor mom” in this club, which sums up our trips back to St. Jude’s pretty well:
“A mom I know posted today that her phone has rung 11 times since her child finished his MRI this morning. Each time, her heart stops, then starts when she sees it is not the call with results. Brain tumor families live through this every three months – praying they get a report of “stable”.
We pray and HOPE for the best for Joey’s future and nothing but reports of stable. We feel truly feel humbled and blessed, to have the support and prayers of so many people during this journey.
On July 9th, 2017 our lives changed drastically. My husband has been fighting for his health over the last several years now but had been feeling better and working consistently for quite a while. On July 9th it became clear that he needed to go to the hospital. He was in immense pain and could barely even speak. I drove him to the hospital terrified at what might happen next. There is no way I could have been prepared for the journey ahead in that moment, but by the grace of God we keep fighting day by day I stayed by my husband, Fausto’s, side all night praying, crying out to God, not knowing why my husband didn’t wake up. He couldn’t open his eyes or speak. The doctors told me the next morning that alongside his diabetes he had been diagnosed with pancreatitis. As I understood, his pancreas was inflamed and no longer doing its job to process the sugar in his body. His diabetes complicated the matter. He was also diagnosed with hypertriglyceridemia and the doctors told me they would need to clean his blood through a very involved process over a period of 3 days.
Nervously, I went to the hospital and had my mammogram and ultrasound. This time, the radiologist read my results. Everything looked “fine” and they sent me home. I was instructed to come back in six weeks if the lump was still there or getting bigger. The lump continued to grow and I returned to my doctor. In January of 2017, I was set up with an appointment to see a surgeon and have a biopsy. I took off work and went to the appointment. When I got there, the surgeon did an ultrasound on the lump. He said he was confident he knew what it was and would be shocked if it was cancer. He told me he could drain the lump now-which would continue to grow back or I could have surgery during spring break or in the summer since I am a teacher. I didn’t want to mess with this lump anymore, so I requested the earliest surgery appointment.
