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.
The morning of February 6, 2021, was a normal Saturday morning. Lui was working on something in the garage. All of a sudden, his right hand started getting numb and the numbness moved up his arm. He went upstairs to take an aspirin and said to me “I think I’m having a stroke” when he said that the right side of his face was fallen and numb. I called 911, within 8 minutes they were there and all his symptoms were gone. Very strange. The ambulance took him to the hospital and they did an MRI. They told us he had a parasite in his brain and admitted him to the hospital. When they discharged us they gave us drugs to kill the parasite and would check up on him after another MRI in a few weeks to see if it was dead. We were bewildered at this diagnosis as Lui has always been healthy. A parasite? He took the medication and got another MRI. The MRI showed that it had grown in size and was most likely not a parasite after all! A misdiagnosis! The neurosurgeon told us we need brain surgery to get out the mass. After that appointment we were reeling and our friends and family and church family rallied around us praying for good news. Lui was positive and focused on healing.
1st Brain Surgery—
Surgery day was April 13th. The surgery was 3 hours long and when the surgeon came out, he said that it was a walnut-sized Glioblastoma grade 4 tumor. This is considered the most deadly and aggressive type of brain tumor there is. The prognosis is 15 months survival from diagnosis. I was devastated. How could this be happening? Lui stayed positive, believing that God had him in the palm of His hand. The surgeon said he removed 95% and expected chemo and radiation to take care of the rest in 4-6 weeks. His goal in leaving 5% was to keep Lui’s motor skills intact because the tumor was in the left motor cortex in the brain that is in charge of right side movement and speech. Lui was in the hospital for 3 days and recovered very well. He was able to walk and talk normally as before.
2nd Brain Surgery—
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.
Lui got the use of his upper right leg back and can walk with a cane with help, but mostly uses the wheelchair. In mid-June he had a clear MRI! Six weeks of chemo and radiation started at the end of June. The radiation was extremely hard and caused a lot of brain swelling which caused disorientation, inability to communicate. They adjusted his meds and within 3 days he could talk again! At the beginning of August, he moved home from rehab and had another clear MRI. Lui now does 5 days of the chemo pill per month. He is tolerating it well. His next MRI is after Thanksgiving.
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.
Financially, Lui is unable to work so we have had those challenges. I am self-employed and worked part time prior to this. Thankfully, we have been able to stay afloat. We have had tremendous support from our families, friends, and church community. They have brought meals, groceries, prayed with us, and helped out in so many ways! We have seen God’s provision in every area.
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.
Then just over 4 months ago, Sarah had some extended soreness from a great diving catch in softball. Through several tests and scans along with a very determined doctor, she was diagnosed again with cancer. This time it was Desmoplastic Small Round Cell Tumors (DSRCTs). This cancer is even rarer, especially for her. There have only been 200+ diagnoses ever (out of probably 800 million similarly aged people) worldwide of this particular type of cancer with a 3-1 ratio of young men to young women. Also, it tends to affect twenty-somethings and not teens, so Sarah defied the odds yet again, but again not in a good way. DSRCTs is not considered a fully treatable cancer at this time.
She has taken this diagnosis in full stride and truly believes she will be one of the 1st patients to be fully recovered from it. Her follow-up scans conducted after her 2nd full round showed significant progress in reducing the sizes of the bigger (3cm and smaller) cells and the small dots previously visible were gone. Her oncologist’s word were, “I’m pleasantly shocked with these results!!” She defied the odds, but this time in the good way!
So we remain cautiously optimistic as she’ll have another 5-6 months of treatments with scans every couple of months. These treatments haven’t demolished her body and spirit like they do typically for others. She has always maintained a “make the most out of every day” attitude and this continues with her cancer fight. While quite shy in person, she has the heart of a warrior. And yet at the same time she still has bad days. Days where she is broken – physically, emotionally, and spiritually. This is where we get so much encouragement from groups like Holiday Streakers and their support of her.
Additionally, if you’d like to follow her story more closely, we’ve setup a Facebook group page called “Fight for 18 – Sarah Waul.”
Hi, we are the Garcia Crisanto Family – Boni and Charo, Geraldin (17), Lizbeth (15), Darihelys (9), Emireth (6).
At the beginning of this year, you would have found us working hard as a family and sharing many wonderful times in our community. We dreamed of opening a restaurant one day called “Charo’s Family Cocina”. We love to host meals in our home for friends, neighbors, family, and the Mission Southside community. At one of these cookouts, you can be sure you would have found Boni cracking jokes by the grill and making everyone laugh and feel welcome. Charo would be making sure you were comfortable and had a glass of Horchata or a cold Coca-Cola in your hand. Geraldin would be right next to her mom filling empanadas and making sure the whole process was running smoothly. You might find Liz sitting next to you at the table telling one of her famous stories – you’d probably be laughing or crying by the time she’s done. Then Dari would find a seat next to you and taste test the food. Dari is the ultimate taste tester of the family and has a very refined palette. Emy (aka Booboo) would find a seat at the table to share her snap chat filters with you or maybe even include you in her latest Tik Tok. The Garcia Crisanto family gatherings are what memories are made of.
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).
This summer was a very different one for Geraldin and Liz. Because of everything that happened in May, we didn’t spend it like every other summer. In past summers we enjoyed a lot of family time, we would even go to work together as a family. Everyone would go to help clean and then when we were done, we would go to get the “reward” like ice cream. This summer was different because we were all working separately in our jobs, myself, Geraldin, and Liz. I have to wake up extra early to go clean restaurants and businesses alone where Boni used to help me clean before he would go to work. Geraldin has stepped up in huge ways by taking her sisters to school every day, dropping off Dari and Emy in elementary school, Liz at her high school, and then Geraldin goes to her culinary program at another high school.
One way we have been able to honor Boni’s legacy was at Sports Night at Mission Southside. Boni loved participating in this community event on Tuesday evenings each summer. He would always find a way to get there, no matter what! Together with the staff at Mission Southside, we presented three Bonifacio Garcia Sportsmanship Awards to people who exemplified both Christ and Boni. The three awards each had a unique characteristic that described Boni: Teacher, Encourager, and Selfless. We were able to share stories and memories of Boni as we announced the winners of these awards. It was a special moment for Mission Southside, the Garcia family, and the community. We miss his sense of humor, amazing tacos, and his energy for life! His love of family and his heart for serving others will always be his legacy.
Here are some special memories so you can get to know Boni a little better.
(Geraldin) “Something I will always be grateful for is getting to spend my dad’s last birthday with him (Dec. 29th, 2020). We went to get his favorite cake from Whole Foods and then we went out to eat at Texas Roadhouse to get his favorite ribs. Looking back, we didn’t know that would be his last birthday, but I am so glad we took the time to celebrate him. He was so happy and surprised. I will treasure those memories forever.”
(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”
(Emy) “My favorite memory with my dad is when we went to Houston and he put my favorite song on and we sang together.”
My daughters are my motivation to get up every day and keep fighting and putting one foot in front of the other. I am also motivated by the dream Boni and I shared of finishing our house in Mexico for our beautiful family.
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 the news. That night we googled cleft lip, wondering what we could have done to make this happen. Why us? Why our little girl?
As the weeks went by, my midwife reassured me it was going to be ok. On September 13, we were admitted to the hospital to be induced, and we welcomed our little Vera Lynn into the world on September 14. She was so precious, even with her cleft lip. She was a great little baby, we spent three days in the hospital learning how to get her to suck (so she could eat). We met with our cleft team, speech therapist, and some great nurses that helped us feel comfortable bringing her home.
Our days at home were great until our third week as Vera was having trouble breathing. She would just stop breathing! This is when she took her first ambulance ride to Blank Children’s Hospital. We spent many days on and off in the hospital trying to figure out why she wasn’t breathing and turning purple. On December 14, she had cleft surgery and we thought we would be good. We thought that now Vera would be like any other baby, but we were wrong. We had lots of feeding problems after her surgery. We still have moments where she stops breathing. Fortunately, we have a great team of doctors from our cleft team, GI Specialists, and a neurologist that are working together to figure our little one out. Vera now attends daycare and loves it (ChildServe Daycare rocks; they have helped our family so much!), where she sees all her therapists. We have such a great team of nurses that we ask a lot of questions.
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.
Fortunately, she responded well to the aggressive chemotherapy and was ready for a bone marrow transplant. Transplant required traveling out of state, nearly 250 miles away from home, to the nearest center of excellence at the University of Minnesota Children’s Hospital. Left back at home were her siblings, Parker-12 and Tinley-10. Her Mom traveled with her as a constant care provider and her father spend most weekends traveling up to Minnesota to be with them while caring for her siblings at home during the week. Prior to the transplant, Sav received another round of an even more aggressive chemotherapy regimen at the U of M to prepare her bone marrow for transplant. She received the gift of life from an unrelated donor on September 22nd, 2021. Savannah was required to spend 100 days post-transplant within 30miles of the transplant center. Following completion of the post-transplant protocol, she will be required to be on an oral chemotherapy regimen in hopes of preventing relapse.
September through December was spent away from home, family, and friends. Yet through it all, Savannah’s perseverance and positivity remained constant. She embraced her loneliness during her lengthy hospital stays by making hospital friends and starting a pen pal program for the children in the hospital; complete with crafted mailboxes. There have been so many times when the days have been dark and lonely and the challenges so very overwhelming yet Savannah and her determination have been the light that has carried the family on. There were days that it was hard to believe the challenges that she faced with the strength that she displayed both physically and spiritually.
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.
Finally, we were referred to Gillette Children’s Specialty Healthcare in the Twin Cities. We worked with a neurologist who looked back over Maggie’s MRIs and thought maybe there were some signs of demyelination – the breakdown of the protective coating over the nerve cells that make up the white matter of the brain – and decided to order a urine test “just to rule something out.”
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.
Our lives have been completely upended because of Maggie’s disease. February 28th, 2020 stands for our family as a “D-Day” that marks the moment where all of our comfort and security crumbled. We mark time as being “before diagnosis” and “after diagnosis.” But despite all of that change, one thing remains true to this day: Maggie is a fighter. She has held onto her ability to smile and laugh, and she particularly loves to be around her Nanas and her brothers (who she still finds ways of bossing around.) She has learned to say “yes” and “no” with her eyes, and if she doesn’t want to do what you’re suggesting, she will turn her head away and pretend to sleep. We are trialing one treatment to help slow the progression of her disease, and, while we know it is not a cure, it has shown promise.
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.
On the morning of August 24th, life took a very scary and unexpected turn. My mom went from an extremely active 73 year old to not being able to speak and barely breathe within just a matter of hours. The small nearby ER was unable to diagnose why my mom’s health was deteriorating SO very quickly and after an episode where she stopped breathing all together, they decided to transfer her to a larger hospital ICU. It would take multiple tests, consults with doctors around the nation, and a true gift from God for a 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.
Holiday Streakers is such a great display of hope and love to which our family is very thankful. My mom wants everyone to know to have faith, never give up, and miracles DO still happen!
Dot’s family “visiting” her while hospitalized.
As the Ben Lawrence Family was also a recipient last year. Below is an update since last year.
We are humbled and honored to get to be part of Holiday Streakers again this year. This is an unexpected answer to prayer but the Lord keeps showing me roads I never dreamed of as our needs rise.
This past year Ben has continued to fight his leukemia battle and we even brought in a CML specialist from NY as part of our team. This year has brought continued struggles with treatments and after failing the fifth one, our team decided it was officially time for a bone marrow transplant. They began the hunt for a donor and we received a Christmas miracle when was found and willing. With Ben’s type of 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!!!
Now we begin the toughest part of our journey. As I write this, we are preparing to head to Mayo tomorrow for a week of evaluations and testing to prepare for the transplant. We get to come home for Christmas and then Ben and I move to MN on Jan 5th so he can begin chemo. The set date for the transplant is Jan 19th. I will be living in a hotel during this time as Covid doesn’t allow me to spend the night at the hospital. I go during caregiver visitor hours so I can learn my role as his primary caregiver. As soon as he is stable, he will be released from the hospital and will be joining me in the hotel by Mayo.
It also means our family will be split. The kids will be divided up and staying with friends and family. The fur babies will go to grandparents. Our oldest is a senior and we are praying we will be back for graduation.
While this is not the hand we would have chosen for our lives, we hope to learn from it and find ways to inspire and impact others. Thank you to all of you for your love, support, and encouragement so far.
We just started a caring bridge page to post updates as we transition to MN. If you would like to follow along, you can find us here: https://www.caringbridge.org/visit/benlawrencefamily
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.
Bridget was born on July 27, 2012. Bridget was a beautiful baby with a TON of hair. She was our first child and we were incredibly happy to be first-time parents! As Bridget reached the age of two and a half, we realized that she seemed to plateau with her developmental milestones. She was a fairly normal kid up until that point, suddenly we noticed some change. As the next year or two passed Bridget not only was missing milestones, but also regressing and forgetting information she had already learned. From basic shapes and colors…to animal sounds…Bridget was becoming confused and simply not remembering things that had come easily a year before.
During her third, fourth, and fifth years of life we struggled as parents. Frustrated with the search to find answers or wondering if we simply were failing as parents. From speech therapy, summer school, OT, PT, and countless doctors….Bridget just seemed to not be able to break through any new milestones. Potty training, bike riding, 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.
It wasn’t just her inability to learn or grow, or her singing suddenly stopping, it was also the side effects of this terrible disease we didn’t realize she had. Never sleeping, being incredibly hyper active, choking constantly on her food, random days of crying and running around in agitation, and some other terrible side effects I’ll leave out. Basically, we were in survival mode.
As the years progressed, we came to terms with the fact that Bridget had special needs. However, we did various tests to try and determine what was going on. We had hopes of finding an answer that would help her and us as a family. The first couple tests came back normal and our months and years of trying to figure out life continued. Finally, through an amazing developmental doctor at Blank Hospital in Des Moines, Dr. Noble, and a more in-depth blood test, we determined that Bridget had Sanfilippo Type A. I remember him giving us that diagnosis on the phone. I immediately jumped on Google to see that the daughter who I love more than life itself had a terrible, rare and fatal disease with a short life expectancy.
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.
I still consider Bridget our baby. She is the sweetest, happiest kid on Earth. Unable to reason things out in her brain….unable to sin or truly do something mean….she only knows love. She is our baby who I have to help walk, eat, and carry around everywhere I go. She is the biggest 1 year old on Earth! Through all the crap and the constant daily battles with this disease…I have realized how important every day is with our family. How important every day is with her. How amazing it is to see Bridget smile…as that is her form of communication now. She is so special to our family and truly made me a better person.
Bridget is eight now. She is still incredibly loving. She’s phenomenal at smiling and gives the best kisses in the world. You may see her wearing a ridiculous pink helmet to protect her from falling, or riding around in her stroller/chair while on walks. After a 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.
You can follow along with Bridget’s journey with Sanfilippo here:
Hey so we have a fantastic update on Brya! She had her follow up MRI yesterday, 11/16/20 and we were expecting to hear the news that her tumor has responded but stayed stable. We were so excited to hear that it is responding and continuing to shrink!! While we know that this wont ever go away we are very hopeful for at least a little more time with our sweet girl. This came at an amazing time as this weekend I had to tell her that one of her friends that she met through the oncology world passed away and she was convinced that she would be next. We celebrated last night with a dinner out, which we don’t do much as she is immune compromised, and she made friends with all of the staff at the restaurant and told them all her wonderful news. Our waitress was so sweet, she knelt beside our table and listened to Brya’s story as well as laughed and cried with her. It was so nice to see her show some emotion with Brya as so many don’t know what to say and just give her a blank stare.
My daughter Brya is the oldest of 4 girls. She was born in May of 2009, and is now 11 years old. Her sisters are Kaymin (age 10), Ashlynn (age 8), and Savanna (age 5). We actually found out we were pregnant with little Savanna just 2 weeks after Brya’s original diagnosis, and I spent my pregnancy and first 6 months of Savanna’s life in and out of the hospital while my oldest went through treatment.
Just after New Year’s Day in 2015 Brya’s symptoms really began. My step-dad had just passed away, so it was already a hard time, and then Brya got a migraine that just wouldn’t go away. She had this migraine for about 3 solid weeks. After multiple visits to the doctor, where they all told me she was too young for migraines, I was getting nowhere. I was finally able to get her in with her own pediatrician and I told him, “I get migraines, you can’t tell me that my 5 year old curled up in a ball, under a blanket and in tears because the lights and sounds hurts her head, isn’t a migraine. Please don’t be another doctor to tell me she is too 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.
It was the Spring of 2012 when my husband, Freddie began having difficulty breathing. He would notice this particularly when trying to play basketball in the mornings before work and soon it became difficult for him to breathe at night when he would lie down to sleep. After a couple of visits to our family physician, things were getting progressively worse and so he went in again. This time I came with him. Our doctor ran a few tests, did a chest x-ray, that came back clear, and so then he did blood work. By the afternoon we received a phone call that the blood work did not look good and that we should immediately go to the hospital to get a CT scan of his chest. This is when we were told that Freddie had a large amount of fluid in his lungs that was leaking from his heart (this explained why not only was a game of basketball difficult, but when lying down, he was getting “choked out” by the fluids backing up from his leaking heart) We scheduled an appointment with a cardiologist in Des Moines. He told us the results of his EKG and blood work showed that Freddie had been having “silent heart attacks” and all signs and symptoms point to congestive heart failure. We could not believe what we were hearing.
Prior to this Freddie had always been VERY active and was EXTREMELY athletic, working out at least five days a week, including three early mornings before work to play full-court basketball at the local YMCA, and at least two days of weight lifting. During every season but winter, Freddie was on his mountain bike riding for hours, with a specific love for dirt trails – the more logs and ravines to jump, the better. Freddie coached nearly every sport you could think of; being active and involved in athletics was truly one of his passions. So this news hit him, hit us, especially hard.
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.
Through all of this I am creeping closer to my due date, adding more worry to what we were already facing. Finally, it was decided after a couple of days in our local hospital and Freddie receiving two IV drips to treat heart failure that he would be transported to Mayo in Rochester by ambulance. It goes without saying, I followed closely behind. His first day there, I will never forget meeting one of the cardiologists that told me, “He doesn’t have weeks to live, he has days…”
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.
By the next day he had a balloon pump placed into his heart in the hopes that this pump, along with the IV drips would take the stress and some inflammation from his heart. He stayed lying flat for 14 days with no sign of improvement, but not from a lack of prayer. It was then that the cardiologists, surgeons and LVAD coordinators felt it was best that he move forward with an open heart surgery to place a Left Ventricular Assist Device (LVAD) into his heart in order to keep him alive while he wait on a heart transplant. Needless to say, this time was very emotional for us (an open heart surgery, finding out he needed a heart transplant, a baby on the way in a few weeks) but also a time when all we could do was lean into our friends, family and faith, trusting that The Lord would be with Freddie through it all.
The surgery was successful, and after his week and half recovery, Freddie was allowed to go home. A week later, in November 2012, I had a c-section and the sweetest little boy, Zion Amari, was born. I was so happy that I had Zion in Des Moines (rather than in MN) and even more joy-filled, that Freddie was right there by my side.
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.
If you would like to read about Freddie’s journey to his next gifts of life through organ donation, you can follow his Caring Bridge here: https://www.caringbridge.org/visit/freddiewindsor
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).
Grant started a vaccine trial at Memorial Sloan Kettering in NYC in May 2018. He even had his line removed from his chest! We could not be happier, and everything was on track that he would be cured! On his 5th vaccine shot in September 2018 (which is like having hot lava injected in your skin that causes pain, redness and swelling) we found out he had relapsed. He relapsed in his bones, soft tissue, and bone marrow. He has been in active relapse treatment since and has endured many harsh treatments that come with a magnitude of side effects. Everything was going well until April 2020 where he progressed 2mm and 6 mm and it was causing leg pain. He received more radiation and that worked. His pain went away almost immediately.
We switched up the treatment he was on, but that was proven to be ineffective as a new spot on his skull showed up 8 weeks later. Not sure if it was truly a new spot we scanned again, and 3 more spots showed up. We headed back down to Mayo to get set up for his 3rd round of radiation. It was on the MRI that was done for the planning for the spot on his skull they told us there was a brain lesion. It is rare for a brain relapse to happen this far out from diagnosis. The team out in New York made the protocol for brain relapse. Before 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.
Grant has had a ton of chemo, countless pokes, many blood and platelet transfusions, many small surgeries, so many hospital stays, and been sedated over 100 times. All these treatments come with horrible side effects including (but not 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.
Our family has been blessed by so many with their prayers, meals, financial support, and overall kindness. In this journey you feel very alone, so being reminded by people that they still care and pray really helps us through. Right when you wonder how we are going to make it through, we get a wonderful blessing such as being nominated for Holiday Streakers. It is a roller coaster of emotions that takes a toll on everything in your life and changes how you live.
Rowan’s Story, as told by her mother, Rachel:
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.
Rowan was perfect in every way. Her cheeks were full and round, her eyes big and expressive. Our families fell in love instantly with Rowan’s bubbly personality as it developed over the next few months. I remember her first smiles, her first laugh, and her delight at learning to express herself. For several months, Rowan continued to meet developmental milestones and we never had any reason to question her health.
Between four and seven months of age, Rowan developed a number of unusual symptoms. At first, Rowan’s doctor thought a respiratory infection was responsible for the persistent cough that she had, but the longer it persisted, the more suspicious we became. Rowan also began gagging and vomiting after coughing fits, both of which became more and more frequent. She went from sleeping several consecutive hours at night to cluster-feeding all night long. She grew increasingly uncomfortable during tummy time and arched her back while breastfeeding. She developed a firm abdomen and stopped burping following feedings, leading us to believe she had lots of gas that was making her uncomfortable.
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.
At that appointment, as I attempted to justify why I thought Rowan may have reflux, the pediatrician informed me that Rowan’s abdomen appeared bloated, and asked me politely if she could feel my daughter’s belly. Upon hearing the pediatrician speak the words “I feel what I believe to be a mass in Rowan’s abdomen. I think it is in the liver but I need a CT scan to confirm its location,” I was speechless. In a split second, I went from utter surprise to denial to incredulity. I had come to consult with the pediatrician about the possibility of gastric reflux. Not cancer. Please God, not cancer. Even after being told that a liver mass was very likely, my medical brain took over, and looking for the smallest glimmer of hope for a different diagnosis, I asked the pediatrician, “What are your top three differentials?” She looked me in the eye and repeated, “I believe your daughter has a mass in her liver, I believe your daughter has cancer.” Then came acceptance, and I lost sight of everything in the room as my eyes filled with tears and I clung to my baby.
The rest of that day is full of blurred memories. I called Noah to explain that we needed to take Rowan to the hospital for an emergent CT scan. The diagnosis of a liver mass was confirmed. The mass was approximately four times the size a normal liver should be in an infant Rowan’s size. We were then transported by ambulance to Blank Children’s Hospital in Des Moines, Iowa. At ten-o-clock at night, we met with the on-call pediatric oncologist who would become Rowan’s primary doctor. She explained that there were two main differentials for the cancer in Rowan’s liver, but that her primary suspicion was a cancer called hepatoblastoma. She explained that over the next few days, Rowan would be sedated to undergo a series of imaging diagnostics, a liver biopsy, placement of a central catheter for chemotherapy administration, and placement of a nasogastric tube (NG) for supplemental feeds should she stop nursing following the initiation of chemotherapy. And finally, we were informed that as a result of hospital policy pertaining to COVID, Noah was not allowed to stay in the hospital with us.
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.
Rowan’s liver biopsy confirmed a diagnosis of hepatoblastoma. Of the pediatric cancers occurring in the liver, hepatoblastoma is the most common. Despite being “common” among pediatric liver cancers, this type of cancer accounts for less than 1% of pediatric cancer overall. Approximately one in a million children worldwide are diagnosed with hepatoblastoma.
We agreed to participate in a study that seeks to standardize a treatment protocol between the US and Europe for hepatoblastoma. Rowan was randomly selected to undergo treatment according to the current US standard, which consists of six cycles of chemotherapy and surgery either to resect (remove) the tumor or to receive a liver transplant.
Medications to alleviate nausea and pain were administered through Rowan’s NG tube. Because Rowan’s tumor compressed her stomach and limited her feed intake, Noah and I also supplemented my stored breastmilk through the NG tube approximately ten times a day. But after five weeks, Rowan was not gaining weight or following appropriate growth curves. She lost two pounds since the time of her diagnosis, and at that time her team felt it was necessary to begin total parenteral nutrition (TPN), which provides adequate amounts of proteins, lipids (fats), vitamins, and electrolytes through her central line (IV catheter). It was difficult to accept that our baby needed this degree of support to sustain her, but we were also relieved that her tumor and frequent vomiting would no longer limit her ability to receive adequate nutrition.
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 spent 32 days in Omaha, Nebraska to have one of the top transplant teams in the nation conduct Rowan’s transplant. Once again, Noah was not allowed to stay in the hospital with us. Rowan’s transplant was overall a wonderful success and she suffered no serious complications. The first few days were impossibly difficult to endure. For 24 hours, Rowan remained under sedation on a ventilator as part of protocol because the amount of fluid she received during surgery could cause fluid retention in her lungs. When she was taken off of the ventilator, she was in so much pain from the surgery and from fluid retention under her skin (four pounds of fluid to be precise, a quarter of her body weight). With each day that passed, she improved considerably. And finally, four days after surgery and much to our surprise, our little warrior was sitting up, playing, and talking like herself again. After what felt like an eternity, we finally felt like we could breathe again. We had our baby back. One week after she received her new liver, Rowan underwent a second surgery to receive a stomach tube (G-tube), which prolonged our hospitalization but would serve to make administering medications and future feed supplementation much easier for her.
While in Omaha, we started Rowan’s fifth cycle of chemotherapy before returning home. Starting her fifth cycle was a bittersweet moment for us. During the month break from chemotherapy in Omaha, Rowan had grown eyelashes, eyebrows, and her hair back, and she felt better than she had in months. As happy as we were to be so much closer to the end, we knew that the weeks ahead would be long and hard. Not only would Rowan’s immune system be suppressed as a result of chemotherapy, but the steroids and anti-rejection medication which are required for her transplant cause further immune suppression.
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.
With each cycle of chemotherapy, the body recovers slower than before. We missed our bubbly, smiley girl who wanted nothing more than to smile, play, and laugh, but simply did not have the energy most days. During her sixth and final cycle of chemotherapy, Rowan received no less than four blood transfusions and two platelet transfusions. She developed another infection at her G-tube site and had persistent fevers higher than we had ever seen, which failed to respond to antibiotics for several days. Her body was begging for a break from all it had endured over the previous five months. Rowan spent her first birthday in the hospital, and for a couple hours a day, she felt well enough to participate in the celebration. We filled the ceiling above her bed with balloons and a “One in a Million” banner, and friends and family from all over the country sent cards and gifts for her to open. Her first birthday was nothing like we imagined and yet everything we could have hoped for. Even though she didn’t get to see her family, our girl spent her birthday week surrounded by people who love her like family.
Finally, on October 14th, Rowan’s chemotherapy came to an end. At last, we were home with no impending hospitalizations in the foreseeable future. Rowan’s post-treatment tests and scans were scheduled that same week. One hundred and sixty-six days after her initial diagnosis, Rowan was declared cancer-free. Rowan had endured so much since May: 126 days of chemotherapy, 73 days in the hospital, 32 days in Omaha, 27 blood transfusions, three platelet transfusions, and one liver transplant. Although Rowan won’t remember these events and everything she has endured, the day will come that she will understand how strong she had to be. Through it all, Rowan has shown us all what true strength looks like as well as what pure joy looks like.
A chapter of Rowan’s story has come to a close, but her journey is far from over. Right now, Rowan’s G-tube makes administering medications quite simple, but one day soon, she will need to take those medications by mouth through a syringe. One day, she will learn to swallow pills. One day, she will learn to keep her own schedule for taking her anti-rejection medication. Right now, Rowan’s central line (Hickman catheter) makes taking blood samples easy and painless. But soon, she will learn that taking blood samples is going to hurt, because needles will be involved. And one day, she will understand why the needles are necessary. Right now, ensuring adequate nutrition is simple thanks to TPN (total parenteral nutrition) administered through her catheter. But soon, Rowan will need to be weaned from this nutrition source because long-term TPN can compromise the health of her new liver. Because Rowan has not shown interest in taking food by mouth as a result of chemotherapy and frequent vomiting, her team will find alternative ways to ensure she receives the nutrients she needs for proper growth and development.
Though we will try our best, Rowan will never have a completely “normal” childhood. She will never receive certain vaccinations because her immune system cannot respond appropriately as a result of her medication. She will never experience the taste of a pomegranate or grapefruit because they can significantly alter the absorption of her anti-rejection medication. She will never swim in lakes or ponds because there are high risk infections that can come from those sources, which her immune system will not be strong enough to fight. As often as possible, she will not be exposed to people who are displaying symptoms of sickness. She will not take new medications, nutritional supplements, or consume energy drinks without first consulting with her transplant team. She will have to be very careful to reduce exposure to sunlight and when spending time outside, she must frequently apply sunscreen. For the rest of her life, she will have to choose travel destinations carefully and may receive additional vaccinations appropriate for her destination.
We always knew that Rowan was special. Now knowing that she is “one in a million” only solidifies what we have known since we first brought her home. Our girl is a warrior who has won so many battles in such a short time, and this is only the beginning of her journey.
Rowan’s story and GoFundMe is open to the public through her Facebook blog titled Rowan’s Story.
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.
The Toburen Family
First, I checked out your website to know what the charity is and then to read the history. I think it’s wonderful what you’re doing and also very creative! Thank you for hearing our story!
We started our adoption journey three years ago and requested a healthy child only. We didn’t think we could handle any kind of medical needs. A month into the adoption process we found out we were pregnant! We were overjoyed, yet disappointed we had to put the adoption on hold until our baby turned 6 months old (adoption agency policy).
My pregnancy was very difficult, scary and short-lived. I was on bed rest for three months and had our son two months early. I got congestive heart failure from the delivery and had to have back surgery from being on bed rest so long.
Our son, Sawyer, was born with a birth defect called Sagittal Craniosynostosis that required him to have skull surgery at three months of age and wear a helmet for six months. It was then that we felt like God was asking more from us. We changed our adoption request for a healthy child to special needs.
Had we not done that we would never have gotten our sweet Charlotte. She is 22 months old and has a bilateral cleft lip and a complete cleft palate. We brought her home from China six months ago and she had her first surgery on June 21st. Her next surgery is next week, September 27th. Her third will be in January and her fourth a couple years later.
The adoption took everything we had, $44,000. We have insurance, which will cover a lot of the surgeries, but the $4,000 deductible this year and next will be hard. Currently, my husband works two jobs – part-time children’s pastor and full-time commercial loan administrator – but next year he’ll go into full-time ministry! This is our family’s dream and desire but it will cut our income in half.
This journey has grown us in so many ways and shown us that, although we think we know best, God knows better. We also know we’re stronger than we think and can handle obstacles as long as we go through them together.
Thank you for considering us! It’s wonderful what you’re doing to help others.
-Daniel and Stacia Toburen
Fausto & Wilda
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.
I was hopeful that after a week I would have Fausto back at home with me and that with some recovery time he would be able to go back to work. Unfortunately, due to many complications, Fausto remained in the hospital for 6 weeks! I don’t even have words to describe how I felt during that time. Every day was such a desperate fight for life. Every day I would pray and hope that Fausto would make it one day more. I would hold his hand and talk to him not knowing if he could hear me.
The tension this situation placed on our family was difficult in so many ways…financial, emotional, spiritual. I previously had been working but with our three girls at home and school starting soon I had to find several jobs to try to make ends meet. Between working early in the morning and late at night I found time to go to the hospital and visit Fausto. Sadly, there were days I didn’t have enough gas money to make it there, so I was unable to visit him. My girls wanted their daddy home and my 2-year-old didn’t understand why she couldn’t visit her daddy (as he was in the SICU).
After Fausto was finally able to come home to us after 6 weeks, he had lost almost half of his body weight. He didn’t even look like the same person. There were some complications with his transition home in that he couldn’t keep any food down. Anything he ate, he would throw right back up. Within two weeks of being home, he had a follow-up appointment where we discovered he had lost 9 more pounds in two weeks. They rushed him to the hospital in an ambulance from that appointment and I was again left with my questions, fear, and desperate cries out to God.
He was hospitalized for yet another week until he was able enough to come home. Now we are continuing to fight day by day alongside each other. He is getting better. He can walk around and he keeps his food down now. But we know the journey ahead of us is long and some days it is difficult to continue to hope. But I know God has not abandoned us. I have faith that God will heal Fausto. There are so many people that have stepped up to help us in our time of need and I am so thankful. I see the hand of God in the many people who have been there for us. The people who have helped me with rides for my children to school, those who have helped us with food, I have seen the body of Christ at work. Thank you for your generosity and for the support and prayers you are offering on our behalf. We could not do it without you.
My mind raced and thoughts crashed into each other as I heard my cancer diagnosis. I thought to myself, how could this be? You see, in November of 2016, I went to my family doctor with a large lump in my armpit. She assured me I was fine. The lump continued to grow and my mind began to wonder even more. What is going on, I thought? Two weeks and an antibiotic later, I went back to my doctor. This time, she set me up at a Des Moines hospital for a 3D mammogram and an ultrasound to examine the lump in my armpit.
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.
On that cold January day, I lay on the gurney with a cozy, warm blanket covering me. I was smiling and laughing with my family as I went into surgery. “I got this”, I said to myself. While in recovery, waiting for my husband and four children, I still thought I was fine and had no idea what was to come. My family’s tearful faces soon joined me and that is when I heard the dreaded C word. You have cancer. Triple negative breast cancer. This cancer is known to be an aggressive breast cancer. I was told I had a cancerous lump in my breast, one in my armpit lymph node and one lymph node between my lungs and fourth rib.
The next weeks were a whirlwind of appointments: biopsies, breast MRI, PET scan and surgery to put in a port for chemotherapy. At the end of January, I said goodbye to my 25 kindergarteners and they had no idea I was done teaching that year. Going to work with little children who don’t know how to use Kleenexes or cover a cough was no option with chemo!
I began 20 weeks of intense chemotherapy, which I wouldn’t wish on my worst enemy. My ball cap with hair became my best friend. I soon found out the Kiss Shy brand of fake eyelashes were the ones that flattered me the most and I became an expert on painting on fake eyebrows. My chemo nurses said I should be the poster person for chemo. Really? I had 41 symptoms and came out of chemo needing two heart medicines. I guess my symptoms were not as severe as most. Cancer surgery was in the middle of July and lucky me, I had a former kindergarten parent who was a nurse, in the operating room. She too got to see my ta-tas (even though they were double A’s). There went my modesty!
I went back to my Kindergarten teaching job at Westwood Elementary this school year. I can feel the love from my coworkers, friends, and family. My breast cancer journey continues as I finish this final phase of 33 days of radiation. I now have a nice sunburn and glow on my chest. I am staying upbeat and positive and every day I continue to say to myself, I GOT this!
Thank you, Holiday Streakers, for reaching out to my family and being a part of this journey with me.
Our family was blessed to be one of the 2017 recipient families of Holiday Streakers. Our son Joey, was diagnosed with a brain tumor when he was in Kindergarten and only 5 years old. Joey’s diagnosis put tremendous stress on Joey and our whole family – emotionally, physically, spiritually, and financially. Being supported by the daily prayers, positive thoughts – from friends, family, and strangers who quickly became part of Joey’s Journey through Holiday Streakers – was a true blessing. Knowing hundreds of people were sending positive thoughts, energy, and prayer with each footfall of exercise they committed to from Thanksgiving to New Year’s Day was so powerful! During this period of time, we had air and travel and expenses for multiple medical trips for Joey. We also were mentally and physically preparing for additional treatments for Joey in December 2017. We are firm believers in the power of prayer, and having the support of Streaker Nation was felt by our whole family, particularly in December. A few days before Christmas, we received the amazing news Joey did not need to have another brain surgery at that time. Sharing that news with our family, friends, and all of Streaker Nation was simply incredible! In addition to the emotional support from Streaker Nation, we were blessed to receive a financial gift. This gift helped us pay off the remaining medical debt we accrued during Joey’s initial diagnosis (amazing!) and has paid for three medical trips for Joey, my husband Jim, and me. We have also elected to donate some of the financial gifts we received from Holiday Streakers to St. Jude Children’s Research Hospital to support children’s cancer research.
Streaker Nation is committed to supporting personal and physical wellness, all while supporting families enduring medical difficulty. While I never imagined our family would be on the receiving end of such a group, I can attest to the power of the experience and encourage everyone to join the mission of Holiday Streakers!
-Martha Condon (Joey)