Max was only one year old when he first started throwing a ball in the air and catching it -
“up ball, up ball… ball, ball, ball.” He grew into a talented athlete, obsessed with all sports, and playing
most of them. Baseball, soccer, basketball were his favorites; his coaches said he was special. Little did
they know that Max’s life was about to change forever. In February of 2004, after Max was sidelined with
headaches for over a week, an MRI showed that Max had a massive tumor in his brain. Our family was
devastated by this news. A few days later he had surgery to remove an aggressively malignant brain tumor.
He was just 8 years old. His surgery was followed by an intense year of treatments. Beginning with daily
chemotherapy combined with cranial spinal radiation, and followed by monthly inpatient chemotherapy.
Not only that, but the surgery left him unable to walk, and he suffered the loss of coordination on his right
side, and overall loss of balance. Because of this, his treatments also included rigorous daily physical,
occupational, and speech therapy while living at the hospital.
The intense treatments and protocol that Max received from Seattle Children’s Hospital saved his life.
We are so proud of how Max has fought through his illness and all of the side effects from cancer treatment
that have plagued his young life. Though his surgeries and treatments curtailed his athletic prowess,
he remains the sports fanatic he always was. Today, Max is 19 and attends Whitman College.
It was through research funding that the protocol Max was able to receive even existed, and the funding
came primarily through private fundraising events. Our family has become dedicated to helping this
cause, and furthering research to save more children, like it has saved the life of our child.
Seattle Children’s is making huge progress in many areas to achieve this goal.
Declan Fish is a sweet, active 2-year-old boy with an infectious smile who loves Daniel Tiger, the color blue and his stuffed monkey. In May, we started noticing a significant change in Declan's gross motor skills. After visiting the pediatrician, and getting a clean bill of health along with a recommendation to see an ENT, we chalked it up to being overly concerned parents and that maybe he was in a toddler clingy phase. It was a complete gift from the Lord that our good friends and neighbors came over for a drink that evening, one who happens to be a neurologist and brain tumor survivor. When he saw the change in Declan's walking gait, he strongly recommended that we go to the ER that night for a neurological evaluation. At this time we moved quickly, but still thought that this was overdoing it.
Needless to say, that was not the case. In May 2017, Declan had a softball-sized tumor removed from his brain that turned out to be Grade III Choroid Plexus Carcinoma. He experienced several complications post-surgery resulting in more surgeries and more than two months at Seattle Children's Hospital. Once his little body was healed enough from the surgeries, he started a six-month chemotherapy regime that has been challenging for all of us. While undergoing chemo, he is also working to regain strength in his left side that was lost due to the brain surgery so he can walk, run, jump and throw a ball one day. It's amazing to see Declan's spirit shine through every day despite the sickness and pain he endures. He never hesitates to flash his infectious smile to every person he encounters.
I hate cancer. Is it okay to say that? I really try to stay positive during this journey as I know there is an ultimate plan, and it helps to keep us going, but some days are just sad. The chemos are hitting Declan harder and faster each round. Last night was the worst we've seen him actively showing us how bad he feels. He'd say "night night" over and over because he just wanted it to go away. He was pretty scared after he threw up a couple of times, and it just got to me. As I walked the halls of Children's to take his clothes and little monkey to the laundry, I looked in the rooms at all of the cancer kids and my heart just ached. It's not fair what these kids have to endure. They are so amazingly resilient, but they have to go through so much. It's more than I will ever have to deal with in my lifetime. Today I am sad for them, and sad for Declan right now. I know he will get through this, but I still hurt for him, and for us.
We know we have a long, difficult road ahead of us but its one we face with hope. Seeing what we have gone through, I now know and understand so much more the importance of research and how it directly affects kids like Declan. Without research, we wouldn't have had the success of his tumor resection, or the new treatments to give him his own white blood cells back, or the light technology that directed the surgeons to the exact placement of his tumor. So many kids are affected by brain tumors and so much research is needed to increase the survival rates.
Eligh was diagnosed with a brain tumor June 8th 2010. Due to the size of the tumor (size of a golf ball), the only option was to have it removed. On June 10th 2010 he went in for brain surgery. His tumor was located in the cerebellum region in the lower back of the brain - its function is to coordinate voluntary muscle movements and to maintain posture, balance, and equilibrium. Eligh went on to have Posterior Fossa Syndrome with Cerebellar Mutism and because of this, he had to learn how to move his body, swallow, eat and speak again. We spent two months staying at Children's Hospital in the Rehab Unit. The team there, as well as family and friends, worked so hard each day to help him gain his strength back. Once home, we continued with numerous hours of therapy where he's made SO much progress throughout the years! Seattle Children's Hospital will always be near and dear to our hearts because they took such great care of the sunshine of our lives. They are truly an amazing team! He is recovering like a champ thanks to his physical therapy, occupational therapy, speech therapy and endless support from family and friends! He has made HUGE progress throughout the years and we are so proud of him! This year he will be a 5 year brain tumor survivor!
Hannah was a bright, active, healthy nine year old girl until the fall of 2007 when she was suddenly diagnosed with a brain tumor – a malignant, anaplastic medulloblastoma. Neurosurgeons at Seattle Children’s Hospital immediately removed the tumor, after which her life as she knew it ceased to exist.
For the next year, Hannah endured multiple rounds of chemotherapy in addition to full brain and spine radiation. Due to the aggressive nature of her tumor, Hannah also participated in a research study chaired by Dr. Jim Olson, augmenting the standard treatment for this disease. The cumulative and toxic effects of this treatment and surgery resulted in significant impairment to Hannah’s cognitive, physical, and emotional functioning, particularly robbing her of her independence. But we hoped and prayed that it would all be worth it if Hannah were cured of her cancer.
Despite receiving “all of the above” available methods of treatment under the care of the best pediatric neuro-oncologists on the planet, Hannah’s tumor returned 18 months after she was diagnosed. The prognosis for a relapsed medulloblastoma is currently very poor, but Hannah developed a fighting warrior spirit, bravely believing that she would beat the cancer again. Given a multitude of unproven treatment options, Hannah started a new chemotherapy and attempted to keep her life at home and at school as normal as possible. But the cancer continued to progress despite numerous chemo regimens and gamma knife radiation. As the cancer and treatment took its toll again, we came to the realization that we could not halt the disease and that we would lose our precious daughter. In the summer of 2010, we stopped treatment and enjoyed what time we had left together at home. In the end, Hannah died peacefully in her own bed, surrounded by her family. We are very grateful for the support we received during this time from Seattle Children’s Hospital and Hospice of Kitsap County.
In addition to our gratitude for Seattle Children’s, we support the work of Dr. Olson and his research colleagues in hopes that more effective, less toxic treatments for brain cancer can be realized. We pray that in the future, no child has to suffer the devastating effects of brain cancer and its current treatment. And we pray that no parent will have to lose their child in this way once new treatments are discovered. Thank you for supporting the Pediatric Brain Tumor Research Fund towards that end.
In January 2006, 3 year old Gabriel Rochefort was bombing down the ski slopes in Wyoming. His parents were thrilled that he had taken on this sport so young and with so much enthusiasm. Just a couple months later Gabriel was diagnosed with a malignant brain tumor. No illness, no warning. It was an ependymona – a malignant tumor that in young children often comes with a poor prognosis because they are typically located in places that make them difficult to remove.
Gabriel’s was in one of those places – against the brain stem. Neurosurgeon, Dr. Anthony Avellino at Children’s Hospital remarkably was able to remove all visible tumor without damaging the surrounding healthy tissue. Had it been just a couple years earlier, the risks in surgery would have been much greater. Every year the techniques and prognoses improve.
The next step was radiation and again Gabriel benefited greatly from new research. Until recently the full radiation dose was given through one beam giving the healthy tissue both on the way to the tumor site and exiting the entire dose as well. A new treatment, conformal radiation, divides the dose into several fragments. Radiology oncologist, Dr. James Douglas, worked meticulously with a computer program to formulate a prescription that would aim those fragments carefully to dodge primary centers in the brain whenever possible. This treatment option was especially important because although radiation is the treatment of choice for this type of cancer, there is concern about its effects on the brain especially with children 3 years of age and younger that are in a critical period of brain development. This treatment breakthrough minimized Gabriel’s risks to those late effects of radiation greatly.
Today, Gabriel is monitored every year with MRIs for regrowth of his tumor. He is a happy, vibrant boy, completely free of symptoms and side effects. His grateful parents know this outcome would not be possible without cancer treatment research.
Born August 2005, Madison Danielle was everything we could have hoped for in a little girl. “Dani” as she was most often called enjoyed being outside from the very beginning. Mt. Rainier and Flathead Lake, Montana were her two favorite places to be. The smile she always wore would light any room and she had a wonderful giggle to go along with it. She loved learning new things and by age two, she was amazing those who knew her by reciting the Pledge of Allegiance.
At age three she was starting to read stories to us instead of the other way around.But in June 2009, everything changed when our sweet Dani was diagnosed with a brain tumor called a bilateral thalamic astrocytoma. She had emergency brain surgery to place a shunt which would help to remove cerebral spinal fluid that had been building up behind the tumor. The type of tumor she had was inoperable, so she started her first chemotherapy on July 1. Later in July, she required another surgery to place a second shunt. Her tumor was unresponsive to two different chemotherapy regimens. Her next hope was six weeks of cranial radiation which did stop the growth of the tumor, but only for a few months.
During that time Dani worked with speech, occupational and physical therapists almost daily to relearn everything she had lost as a result of the side effects of the radiation and how her growing tumor had affected her brain. We watched our little girl start to come back and then we watched her fade away again. Her tumor was growing again. Fifteen months from diagnosis, Dani lost her courageous battle.Our family and friends support the Pediatric Brain Tumor Research Fund both as a way to honor and remember Dani. We continue to hope that there will soon be a time when no other child has to go through what she did - no other family to lose their child.
May Dani never be forgotten nor the hope for a cure lost.
Sarah Hughes was 7 years old and just completing first grade when she was diagnosed with a pnet brain tumor. Her young world was turned upside down as she immediately went in for surgery, then to Houston, Texas to receive proton radiation, followed by six months of intense chemotherapy at Seattle Children’s Hospital.
Through it all she maintained her silly, sparkly personality. She attended school, played soccer with the Dragonflies, skied with abandon and, was dedicated to her family and friends. Sarah handled her treatment well and never complained about her countless hours spent at the hospital. The entire staff at Seattle Children’s Hospital was incredible and Sarah received the best care available.
After several months of “remission” Sarah’s tumor returned in August 2009. Sarah faced the terrible news with an incredible amount of strength and courage, ready to fight and continue to live her life.I will never forget Sarah’s smile and energy at the first Run of Hope. She ran a bit, was carried a lot and crossed the finish line with a huge grin on her face. She stayed til the end, playing with the band, eating leftover donuts, and working the crowd.
After months of new and different chemotherapies, gamma knife radiation, and an enormous amount of hope and prayers, Sarah lost her battle against cancer and passed away in May of 2010. Seattle Children’s Hospital is at the forefront of pediatric cancer treatment and research. The Run of Hope raises much needed funds to find better treatments and ultimately a cure. It also provides an opportunity for us to gather and to remember those we have lost and to help support those children currently undergoing treatment.Sarah’s sparkle continues to shine.We are lucky to linger in your light!
Marissa Christine Simmonds was born a healthy baby and continued to thrive her first year. She loved books, birds, dogs and especially other babies. When she was 15 months old, she started getting sick and initially her pediatrician thought it was a stomach virus. After several appointments with her pediatrician and a trip to the emergency room, she was sent to Seattle Children’s Hospital for a head CT scan, which showed an acute case of hydrocephalus and a four inch tumor in her brain. Four days later, she underwent a nine hour brain surgery and was diagnosed with an Atypical Teratoid Rhabdoid Tumor (AT/RT). She never was herself again.
In the following four months, Marissa was treated by arguably the best oncologist in the world for 0-3 year old children with brain tumors, Dr. Russ Geyer. She had an aggressive course of chemotherapy and several more surgeries to reduce her hydrocephalus and increase her chances of survival. Unfortunately, the chemotherapy was unsuccessful in stopping the growth of this very rare and aggressive tumor. When an MRI showed that the tumor was growing back, her team of medical professionals recommended that the most loving thing for Marissa would be to discontinue treatments and admit her to a pediatric hospice program. It was an impossible decision that nobody should have to make.
Since the moment Marissa died, she is missed every minute of every day, and every moment in between. In an effort to prevent other families from experiencing similar circumstances, the Pediatric Brain Tumor Research Fund raises money to fund research which will more effectively treat horrific brain cancers like Marissa’s. All donations raised go directly to the Olson Neuro-Oncology Lab at Fred Hutchinson Cancer Research Center, which is funded by Seattle Children’s Hospital. Thank you for helping us cure brain cancer!
There was no question about it: Keaton was his father's son . . . sweet, smart, and very clumsy. However, two months after he learned to walk, his gait was still wobbly. Numerous trips to the pediatrician produced numerous reassurances that he was developing normally. But, as it turned out, we had reason to be worried. A subsequent MRI detected a tumor on the back of Keaton’s brain. He was admitted to Seattle Children's Hospital for surgery and there, neurosurgeons removed a malignant tumor, a medulloblastoma, from his brain. Even more devastating, a MRI of his spine prior to surgery revealed that the tumor had metastasized down his spine.
This was the worst possible news. Because of Keaton’s young age (16 months), he was already considered to have a poor prognosis. That he had the metastatic form of this disease diminished his chances even further. In an effort to rid Keaton’s body of the cancer, he endured six rounds of high-dose chemotherapy, the final three treatments followed by a stem cell transplant after each dose. The chemotherapy was followed by six straight weeks of daily radiation treatment. Keaton was not even two years old.
Fortunately, Keaton responded to this intensive treatment. After four months of chemotherapy and six weeks of radiation, the tumor and dropmets in his spine appeared to be gone. A spinal tap detected no malignant cells. Keaton’s positive progress is a direct result of the research performed at the Olson Neuro-Oncology Lab at Fred Hutchinson Cancer Research Center which operates in partnership with Children’s Hospital. Throughout Keaton’s treatment, we took some comfort knowing that his plan was based upon the latest research available.
While we are grateful that Keaton responded to his treatment, no child should ever have to endure brain cancer. Please join us in supporting research that will result in better treatments and cures for kids with brain tumors.
Rohan was an extremely bright and active new 7 year old, who accomplished much in just a short life span. Some of his accomplishments include mastering Mandarin language in his 2 years at a Chinese bilingual preschool, braving the intermediate ski slopes of Snoqualmie at a tender age of 3, swimming with the older kids even at 5 years, and championing his Kindergarten year with very high test scores for Math and reading.
Rohan was a thinker and an avid chess player, and a huge Lego fan whose passion was not to simply follow the manual and build kits but to create his very own designs, including Star Wars ships. However, the one thing that stood out for him apart from all of this was his knowledge of the Bible and his deep childlike faith and trust in God.Rohan began vomiting and complaining of headaches the Monday before his 7th birthday (Oct 5th). The initial diagnosis was that he had a stomach bug (considering the recent trip we took to SE Asia) and was suffering from an abdominal migraine. He spent his 7th birthday in pain and agony while waiting for blood and stool test results. In between vomiting and pain episodes, he would sit and work on building his newest Star Wars Lego kit he just received for his birthday. An MRI done at the Emergency revealed a mass in the cerebellum, most likely a Medulloblastoma. We were transferred to Children’s immediately and neurosurgery was planned for the very next morning (exactly a week after his symptoms). Surgery took about 4 hours before one of the neurosurgeons came and gave us very positive results of being able to remove most of the tumor tissue. Rohan began rehab shortly thereafter and showed signs of promise for a fulfilling recovery, practicing fractions, playing with his Legos and chess with family members and Children’s staff, and writing thank you cards to the medical team and his school friends. Although he displayed steady improvement in the following two weeks, his progress soon after became inconsistent, as tumor cells were present in the spinal tap and an additional MRI showed tumor compression on his spine and brain, all within the span of a weekend. He fought a very courageous and faithful fight all in just 28 days, but gently passed on at the hospital on Nov 3rd 2012, surrounded by family and a caring medical team.
Although it seems his life was unjustly brief, Rohan was a tremendous encouragement to everyone around him, including his medical team who witnessed daily his determination, faith, and gentle spirit amidst his pain. Rohan was not only bright and creative in mind, but also empathetic toward friends and strangers alike. His concern for the poor was even more admirable than his chess skills, and more astonishing than his understanding of life and death was his desire to have nothing more in his hospital bed than his Bible and Legos (those were his very last words). Rohan’s life is a shining illustration of hope and relentless faith that he wanted everyone to share.
Our loss is irreplaceable, but we move on with Rohan’s memory alive in us through each passing moment. We move on to also support Children’s and Pediatric Brain Tumor Research Fund in their endeavor to come up with breakthrough treatment options and a better physical quality of life for children. We want to raise the much needed awareness and funds towards this noble cause, so that no child would be subjected to suffer through such an ordeal.
Sammy has always been a happy, curious, bright child. Reading was her favorite past time. When she was 15 years old, reading became difficult when she began to have crushing headaches combined with severe nausea almost every morning. Our family doctor diagnosed them as Migraine headaches and prescribed a migraine medication for the pain. The medication gave Sammy some relief, however, it never took the headaches away entirely. Two weeks later the doctor recommended a different medication and an MRI “Just to rule things out.” We are so very grateful that he ordered the test. Four hours after the MRI the doctor’s office called and told us Sammy had a brain tumor and to take her to Seattle Children’s Hospital immediately. Another MRI revealed that the tumor had spread to her spine.
On October 29, 2009 Sammy’s life changed forever. She was diagnosed with stage 3 Anaplastic Metastatic Medulloblastoma. Her treatment plan included surgical removal of the brain tumor, six weeks of daily radiation with chemotherapy followed by six rounds of monthly chemotherapy. Her treatment plan was part of a study by Dr. Jim Olson’s lab at Seattle Children’s Hospital. Sammy’s tumor responded well to the treatment. Sammy however was knocked down by it. She had severe radiation burns on her back and neck. She was extremely nauseous and frequently sick.
Sammy entered the hospital for the first round of chemo at the end of February 2010. All went well at the hospital. By the following Sunday she had developed excruciating pain in her lower left leg. Once again we returned to Children’s. Exploratory surgery revealed that she had developed a Necrotizing Fasciitis infection (flesh eating infection). She was open to infection due to a severely compromised immune system caused by her first round of chemo. Sammy endured 10 operations, 9 days in the ICU, countless doses of antibiotics, several blood transfusions and a total of 6 weeks in the hospital. Thankfully she did not develop any other infections and completed her treatment in August 2010. Sammy suffers from several side effects from her treatment including hormone deficiencies, hypothyroidism, memory lapses, difficulty reading, difficulty driving, and impaired balance. Rehab on her leg has been slow and arduous also.
Sammy was able to participate at the 2nd Run of Hope in October 2010 as a volunteer. By the 3rd Run of Hope Sammy was ready to walk with her Sammy’s BlobSlayers Team. It made her feel great to be able to raise funds for Pediatric Brain Tumor Research. Sammy is always looking for ways to help the next child diagnosed with a brain tumor.
Sammy has most definitely been a beneficiary of the ground breaking research that Dr. Jim Olson’s lab has developed. She remains cancer free almost 2 years later. We hope her story will inspire people to donate to the Run of Hope. Pediatric cancers are so very under funded and brain cancers are the most deadly. This research is imperative to cure pediatric brain cancer and hopefully find treatments without the detrimental side effects of current treatment protocols.
“It ain’t fair, you died too young, like a story that had just begun, but death tore the pages all away...” ~ Kenny Chesney
Peyton was the light of our life, the sunny in our days, the beauty in our world. Her energy lit up a room, her silliness kept us young, and her passion for life reminded us to live. She was smart, compassionate, silly, curious, beautiful and full of love.Peyton loved to help in the garden, planting flowers and collecting bugs, worms, caterpillars, butterflies & ladybugs. She spent hours hunting frogs, diligently checking the hose bin (almost always a sure bet) each day after preschool. She loved spending time at Priest Lake, Idaho, where she spent all summer swimming, kayaking and running on the beach like a horse with her brother, cousins & friends. She loved to dig in the dirt with the boys, roast marshmallows by the fire, drive fast in the boat and take long walks on the trails. And each morning, she was up with the sun and down at the dock with her tackle box and fishing pole, before even the first skiers passed by.
At just three years old, she discovered her love for horses, asking for riding lessons for her birthday. She grew more horse crazy by the day and everyone knew that she was sometimes a horse! She even talked some of them into leading her around as the trainer, while she galloped and whinnied perfectly behind!It was after her riding lesson that she was bent over picking her horses hoof, when she suddenly fell over. We hoped that maybe she was hot and lightheaded from riding, but something inside told us it was more. She’d had symptoms of dizziness for the last few weeks and then her eyes started to cross. When the eye doctor said her vision was perfect, our hearts sank with despair. Then we took her for an MRI and heard the news that changed everything.
In November of 2010, Peyton was diagnosed with DIPG or Diffuse Intrinsic Pontine Glioma, a rare, inoperable brain tumor located in the brainstem. Affecting primarily children, it is the most rare and deadliest of all pediatric brain tumors. So our little girl had surgery and they put in her port so she could receive daily radiation treatment at Seattle Children’s Hospital & University of Washington Medical Center. As she lost her ability to walk and play like she used to, her little body grew large and heavy with the steroids. Her spirit was alive, but her childhood smothered by this awful disease. They call it palliative care, a word we weren’t even familiar with. It meant that she wasn’t getting treatment to live, but simply a short extension of time. As we watched our baby girl bravely endure the next several months of radiation, we quietly grieved inside knowing she wouldn’t survive.After radiation, she did grow stronger and briefly returned to life as a 6-year old. She enjoyed one last incredible summer at the lake, but by summers end, her symptoms returned and the tumor rapidly progressed. Just after turning 7, our beautiful girl passed away on October 23, 2011.
Victor was a silly, bright, funny, passionate, curious boy who always had 100 questions for everything and everyone. He loved cars, trucks, airplanes and he wanted to be a pilot when he grew up. He loved people and loved to talk with just about anyone about just about anything! Often times he would start a conversation with someone, on his own, and somehow, he managed to charmed that person in very little time. Victor was well known and well liked in our community. He was spontaneous, warm and loved hugs. He had always been healthy, happy, growing like a weed.
Victor started having night terrors and nightmares in May 2013. He was waking up many times a night and had a hard time falling asleep. I made an appointment for a sleep study, but could only get a spot on July 31st.
Then, in June, his speech became a bit slurred, and he seemed to be stumbling more. We thought sleep-deprivivation was to blame. But to be sure, I took him to the ER on Fathers' day in the hope that we would get our sleep study earlier since his symptoms were getting worse. What happened then was the most shocking experience we have ever had.
The emergency doctor had a CT scan done and they found a mass at the bottom of his brain. We were admitted right away at the hospital to get an MRI done.
The doctors gave us the worst prognosis. Victor had a tumor inside the pons of his brain. It is called DIPG. Diffuse Intrinsic Pontine Glioma. It was located in the brain stem. By their very nature, these tumors invade diffusely throughout the brain stem, growing between normal nerve cells, making them inoperable. They told us Victor would go through treatments of radiation to slow down the growth. But then the tumor would grow back again, and the symptoms would return with a vengeance, at which point there would be nothing left to do. Death would come between 9 and 12 months after diagnosis. Preceded by a complete loss of all abilities. Including the ability to breathe.
DIPG took away Victor's capacity to swallow, eat, smile, walk, talk, hear, or move in any way. It has taken away his dreams, hopes, and happiness. Along with all of ours, as well. Just as the doctors said, Victor died 11 months after he was diagnosed, on May 14th 2014.
What our family has gone through is nothing anyone could imagine. We were completely powerless to help our beloved son. All we could do is hold him and tell him we loved him. We were never given a glimmer of hope. Not an ounce of optimism. Victor was terminal upon diagnosis.
This illness destroys 300 families per year, in the USA alone. Yet, treatment for it has been the same for over 30 years. Very little progress happened because funding is very limited. No one should ever go through what our family has gone through. Today we raise money and awareness so that one day we find a cure and an end to this horrible disease.
Every cancer story has one common denominator: the day everything changed. For us, it was August 16, 2016. Our daughter had been having flu like symptoms for two weeks. We took her to the doctor, then the ER. We were given fluids and sent home. We headed to our cabin where we enjoying a gorgeous Pacific Northwest summer day when Avery casually mentioned she’d been seeing double for some time. I froze. I knew in that moment, our world had just changed.
We spent the next two weeks in the ICU at Seattle Children’s. We learned Avery’s tumor was considered inoperable in it’s current state and she was diagnosed with an extremely rare and aggressive cancer called AT/RT (Atypical Teratoid/Rhaboid Tumor). Only 100 cases a year in the U.S., 99 of which occur in infants. Avery was 10 years old. She was likely the only person in the country her age fighting this disease. A disease this rare means almost zero federal funding.
It just so happened the Run of Hope was weeks away. A dear friend learned about this event and thought it would be a good place for our friends and loved ones to focus their efforts. We spent the next several weeks figuring out Avery’s treatment plan, but also educating ourselves on pediatric brain tumors. We were shocked and saddened by what we learned. We fervently started spreading the news about our fundraising efforts and raised almost $150,000 for Team Awesome Avery. It was a wonderful way to focus on something positive during something so devastating. Avery wrote a speech for the day and spoke these words in front of 2,000 people:
Hi everyone! If I don't you know you, my name is Avery Berg.
I have AT/RT cancer and am undergoing treatment right now. Thank you so much for being here. I can't believe how many of you have come here to support me. You are not only supporting me but all kids with pediatric brain tumors. I never wanted to get this - no child should ever have to go through what I'm going through right now. It's people like you - people who send me letters of encouragement or tell me everything's going to be okay that keep me going.
A few months ago I never knew I'd be here; addressing you guys with a bald head and having bragging rights to five brain surgeries. But yet I am and I have to live with it. The easiest way to do that is to take it one day at a time. I know there will be many days ahead, but if I can conquer the day that lies before me, I can conquer the trek that this will be. So many times I've thought: Why me? Why anyone? Why should someone have to go through countless days of treatment, surgeries; big and small, being on bed rest in the hospital, or throwing up constantly because your shunt malfunctioned? Now I know. Because when the world can see all the sickness in the community around them they can feel the pain one is going through and realize why we can't ignore this. The reason why pediatric brain tumors are so underfunded is because it is not known about. But when people have loved ones going through this they spread awareness, and it's events like these that are the difference makers. You are the difference makers. Thank you all for being here and supporting me through this tough time.
Let's go be awesome together! Thank you!
During the following months, Avery endured six weeks of cranial and spinal radiation, five brain surgeries, three months of high dose chemotherapy and still has three to go. We have taken it all one step, and often one moment, at a time. Nothing will ever be the same for Avery, but she is still her extremely smart, funny, beautiful, optimistic self that has fought with grace, determination and bravery like I’ve never seen. The road is long and it is daunting, but it is also filled with hope. It is because of events like Run of Hope and places like Seattle Children’s Hospital that we can gratefully say this.
My hope is that this year, Avery can get up on stage and tell her story of survival. To say she is cancer free. I will leave those words to her. I know they will be perfect.
This month we honor the 5 year anniversary of our son Matthew's brain cancer diagnosis. Just as our son started 4th grade, the reason for his worsening headaches became clear. Days before Matthew's 10th birthday, he was diagnosed with DIPG, an incurable form of brain cancer.
We were swiftly thrust into the world of childhood cancer, ironically during Childhood Cancer Awareness month. On the day that Matthew was diagnosed, we were told "this is as bad as it gets....9 months average survival....inoperable....incurable....he has a long road ahead of him...." The days that followed Matthew's diagnosis were filled with a crippling fear that I don't ever want another parent to experience.
We were lucky (and I use that word intentionally) because Matthew's tumor responded well to radiation and the clinical trial that we chose. Lucky because, there is no proven effective treatment for DIPG. Radiation will hopefully slow the growth of the tumor and buy some symptom free time, but that is not a guarantee. It's literally a guess if the treatment will work. The only guarantee with DIPG is that the cancer will at some point begin to grow back. Although we were lucky and Matthew did get 10 months of symptom free time, I've seen children suffer horribly from the day they are diagnosed until the day they die.
What many people don't realize is less than 4% of the National Institutes of Health research is used for pediatric cancers. That 4% is for ALL pediatric cancers, not just brain cancer. That's why fundraisers like the Run of Hope are so critically important. Pediatric cancer research RELIES on philanthropic support.
When we run the Run of Hope this month, we do so not only for Matthew, but for all of the children and families we've met along the way who have heard the words "your child has brain cancer." We'll remember our sweet, funny, caring son and the promises we made to him that we would continue to fight so that one day, no parent will hear the grim statistics we did 5 years ago.
With Matthew in my Heart, Nikki Austin
Ellie was diagnosed at four months old with a brain tumor; desmoplastic infantile ganglioglioma/astrocytoma to be exact. Ellie also suffers from seizures, neuropathy, hearing loss, hydrocephalus, and a few developmental delays. At eight months old she started chemotherapy, making it through seven rounds before seeing more tumor growth. Since then Ellie has been through 17 surgeries, 14 of those were brain surgeries. Ellie's tumor mutated this last July, she now has glioblastoma; a very fast growing, highly malignant brain tumor. She is currently doing radiation, that will be followed by a year and a half of chemotherapy.
What Gives You Hope?
These 6 Children Affected By Brain Cancer Ask: What Gives You Hope? Now through September 15 all donations made to the Run of Hope will be matched up to $50,000 and will fund critical cancer research at Seattle Children's Hospital. Please help them by sharing this video today and together, we can fund the necessary research needed to save another child's life. #CCAMPosted by Run of Hope Seattle on Tuesday, September 8, 2015