Rally for Rhyan at the Johnie
CALEB GUNAWAN is 5 years old and just like any kid, he loves playing outside, superheroes, Legos and playing with his big brother and friends. Unlike most kids his age, Caleb was diagnosed with Neuroblastoma, a form of cancer found in children 5 years and younger. It has spread to his bone marrow and bones.
Caleb was fighting fevers since the beginning of February. Doctors originally thought that Caleb had strep throat or a virus that had been prevalent last winter, causing fevers for more than a week. An antibiotic cured the strep throat, but the fevers continued and Caleb also began to experience severe pain in his back. After an x-ray on Feb. 27, Caleb was called back for a CT scan on his back. At the end of February, his parents learned that Caleb had a tumor in the adrenal gland above his right kidney. This tumor was causing Caleb’s back pain. The family traveled to Riley Children’s Hospital on March 1 to begin tests on the tumor.
Over the course of the last six months, Caleb has been receiving treatments at Memorial Hospital in South Bend, Riley Hospital in Indianapolis and is now traveling to Sloan Kettering in New York. He has completed several rounds of chemotherapy and is currently receiving immunotherapy and radiation in New York. The tumor has been removed and now the treatments are working to remove the cancer from the rest of his body.
DONATE: youcaring.com/calebgunawanfamily-856028
EVAN VICKERS was diagnosed during pregnancy with multiple heart defects. Coarctation of his aorta, ASD, VSD and a bicuspid aortic valve. He was delivered in Atlanta to be close to a hospital that could handle his diagnosis. Evan spent 3 days in NICU on a special medication to counteract his impending heart failure before being transferred by ambulance to the Cardiac ICU at Children's Healthcare of Atlanta. At just 6 days old, Evan underwent 2 consecutive open heart surgeries to repair his heart defects. In July of 2016, at just 16 months old, Evan was cleared by his cardiologist to lead a "normal" life. Evan's normal is quite different from a healthy child but he was thriving and happy.
About 6 weeks after receiving clearance, Evan was scheduled for a routine annual ultrasound to check a kidney blockage he'd had since birth. During his scan, the radiologist noticed a concerning mass near his left kidney. Urgent calls were made, additional tests were scheduled and so began the whirlwind of a cancer diagnosis. In September of 2016, Evan was diagnosed with Stage I Neuroblastoma. It was resected shortly after and he was quickly cancer free. It was terrifying and relieving all at once. However, in January 2017 Evan relapsed with Stage IV High-Risk Neuroblastoma. He immediately started 6 months of intense chemotherapy filled with multiple complications. In June, he completed his first bone marrow transplant and in August, Evan had his second. Evan is currently nine weeks in to a gruesome treatment plan. Because of his treatment plans he has experienced global developmental delays. He is currently nonverbal and is learning American Sign Language as a means to communicate.
DONATE: facebook.com/fightlikeevan/
JACKSON MORTON was diagnosed on December 1, 2016 with T-Cell Acute Lymphoblastic Leukemia. On December 2, 2016 Jackson started Chemo at Children's University Hospital in Columbia. Jackson has a sweet nature and his giving heart touches everyone he meets. Jackson is a gifted student who loves school. He excels in science and enjoys learning. He is currently undergoing aggressive chemo which will continue for several months and maintenance which will be for the next three years.
DONATE: gofundme.com/jackson-morton
KARMA LITTLE is the sweet daughter of Jennifer and William Little. She was a normal healthy 3 year old toddler when cancer changed the family's lives. Karma battled Stage IV High Risk Neuroblastoma non-stop since diagnosed. After Karma failed to respond to Frontline treatment/protocol in Macon and Atlanta Georgia, the family made the decision to start experimental clinical trials at Sloan-Kettering in NYC. Karma was surviving off of clinical trials since December 2015.
She spent the better part of the last three years in hospitals. She underwent over 20 cycles of Chemotherapy, three cycles of MIBG full body radiation, 24 rounds of direct radiation, three cycles of clinical mutation drugs, stem cell transplant, two stem cell rescues, and seven surgeries that caused her to lose a kidney, a section of large intestine as well as her left lung. Chemotherapy and radiation did not have much effect on her disease and therefore she had started a new clinical trial that incorporates Natural Killer cells and Immunotheraoty.
In September 2017, Karma’s doctors told her parents that they had exhausted all treatment options. Karma passed away September 19, 2017 at the age of 7 surrounded by her family.
DONATE to the family: https://rallyfoundation.org/rally-kids/karma-lilly/
KATE DROST was diagnosed with Stage IV Neuroblastoma, a malignant neuro endocrine tumor November 18, 2015 when she was 9 years old. She began walking abnormally and was brought to the ER. After abnormal imaging, she was transferred to Lurie Children's Hospital in downtown Chicago. After more imaging, blood work, biopsies and many amazing doctors conferring, they revealed that she had cancer. Her prognosis is 65% survival at 5 years and Kate has chosen to be the 65% that live.
Kate Drost is now an 11 year old girl fighting Neuroblastoma. At diagnosis, Kate had tumors along her spine and 90% of her bone marrow was filled with cancer cells. Since then, she has undergone 6 rounds of chemotherapy, 2 stem cell transplants, 17 rounds of radiation, and 7 rounds of immunotherapy. She was declared cancer free in November 2016. Kate is currently undergoing a trial at Memorial Sloan Kettering in NYC to prevent relapse of Neuroblastoma. She will complete that trial in April of 2018 and will start a second two year trial out of Grand Rapids, Michigan.
DONATE: facebook.com/pg/katescrusaders/about/?ref=page_internal
KATIE-ANNE SCHILLING aka Pooters, born April 23, 2013, was just your average (but witty & seriously intelligent) toddler. She loves all things in life. On September 1, 2015, after several trips to her pediatrician for numerous tummy troubles, she was admitted into the hospital. Upon further inspection, the CT scan revealed masses on her kidneys and liver. She was transferred to Oncology at Children's Hospital Dallas where further testing was done and it was revealed there is a mass in her chest cavity. After a biopsy was performed, the final diagnosis for Pooters is Stage IV Neuroblastoma.
In total, Katie-Anne has completed frontline treatment. This includes 6 rounds of chemo, mIBG, ch14.18 Antibody treatment, two stem cell rescues, and two resection surgeries. She is missing the front half of her ribs 1-5 on the right side. They had to remove them and part of her sternum to get out the biggest tumor. She is considered refractory but now they are leaning towards stable. They will be starting a vaccine trial starting next month after doing two rounds of 3f8 which is another antibody treatment.
DONATE: https://www.gofundme.com/8f3e9daq
NORAH WEST was diagnosed in November 2015 with Stage IV, High Risk, Metastatic Neuroblastoma at the age of 2. A lot of big words for such a tiny little girl. She has been fighting bravely and through all her difficult treatments, she has never lost her sense of humor or her beautiful singing voice. Norah has had 2 major surgeries, 5 rounds of chemo, 11 rounds of immunotherapy treatment, and 22 rounds of radiation and is currently on the Neuroblastoma vaccine treatment at Memorial Sloan Kettering Cancer Center.
Today Norah is 4 years old and loves all animals especially cats. She loves Peppa pig and Disney movies. A typical day for Norah includes dressing up as Snow White and acting out scenes from the movie, she knows every word, every song. Norah has an amazing memory! Her family loves her goofy personality, her hugs and kisses and her courage! Norah's grandpa says that she is the captain of this boat, leading us all through troubled waters to the calm, safe waters. Indeed she is. She is leading all of us and we continue - bravely onward. Love always wins!
DONATE: www.gofundme.com/norahwest
PRESTUN
SEIBEL: a limp and continuing leg pain were the first signs that he was sick. A biopsy of the bone in Prestun’s leg showed Neuroblastoma. Prestun’s doctors scheduled surgery right away to remove the tumor. Then the he underwent six rounds of chemotherapy at Children’s Mercy Hospital in Kansas City, a few hours away from his home in central Kansas. Prestun went through the front line treatment and it was treated and he remained 18 months cancer free. In July 2014, Prestun relapsed in the brain. MSKCC is the only place for a clinical trial for a relapse in the brain called 8H9.
Prestun has endured so much in his young life and showed his family the true meaning of love. His mom is amazed by his good spirits. Even after getting poked for port access, he will still high-five the nurse and smile.
Prestun still has to go through two more years of active treatment in New York. After that, he will have three more years of once-every-three-month scans, each of which will again require him to travel with his family more than one thousand miles from home.
DONATE: http://prestunseibel.org/
In the fall of 2015, 5 year-old RHYAN LOOS was getting ready to start kindergarten. Rhyan started having very bad separation anxiety in the mornings. Her parents also noticed Rhyan limping every so often. After an initial diagnosis of juvenile arthritis and then leukemia, the Loos family was finally told that Rhyan had Stage IV Neuroblastoma. She completed 6 rounds of very high dose, intense chemotherapy. She had her tumor resection surgery in March, 2016. . The tumor was removed and also her left adrenal gland along with several lymph nodes. After a 6 hour surgery, she did one more very high dose chemotherapy while inpatient. After completing two more rounds of chemotherapy, Rhyan’s scans did not change. Rhyan would move onto doing 7 rounds of hu3f8, which is a very powerful and effective form of immunotherapy. She also did 12 rounds of radiation to where her tumor was removed. After 2 rounds, her scans were clear!
On Thanksgiving Day in 2016, Rhyan went to the hospital for a brain MRI where a tumor the size of a golf ball was found in her brain. It has caused swelling and was bleeding. She was transported a couple days later to MSKCC so she could have surgery. All of the tumor was removed and an ommaya port was placed in her head so that she could receive treatment right into her central nervous system. Currently, MSKCC is the only hospital that offers a very promising treatment for a CNS relapse. September 2017, she started her last round of hu3f8. Unfortunately, due to the nature of the treatment and the massive amounts of pain medication the children receive, Rhyan coded. CPR was administered for 90 seconds before she finally started breathing on her own again. Rhyan is currently scheduled to start a yearlong vaccine trial at MSKCC. Over a years’ time, she will get 7 shots. The trial is designed to rev up her immune system and to teach her body how to shut down any irregular cancer cells itself. Rhyan and her family have made 20+ trips to NYC and counting.
DONATE: www.rallyforrhyan.org/donate
SIMON ROHALY: In the fall of 2015, Simon’s parents noticed that Simon was wheezing while at rest. His pediatrician diagnosed him with walking pneumonia without ordering an X-ray. Long story short, it took them 4 trips to the pediatrician before an X-ray was ordered and on December 8, 2015, the 2-year-old was diagnosed with cancer. Simon immediately had one round of chemotherapy and because the tumor in his chest was constricting his airways, collapsing his lung and pushing his heart over to the opposite side, they opted for surgery right away. Post-surgical scans showed lymph node involvement, so chemotherapy was continued. He endured 6 more rounds of chemo, multiple surgeries, a stem cell transplant, 20 rounds of proton beam radiation, 5 grueling rounds of immunotherapy treatments and he is now on Memorial Sloan Kettering’s vaccine trial. Simon had been considered “No Evidence of Disease” since July 2016.
DONATE: gofundme.com/gteg4x2g
BROOKLYN EKMAN's found out she had cancer when they took her to the hospital because of suspicious red bruising around her eyes. The first two months were the hardest for her; Brooklyn was so scared and sick. She spent her days vomiting from her chemo, receiving numerous medications daily, losing weight and having to be put on a feeding tube not being able to be a kid. She has spent hundreds of days in the hopsital, received many blood and platelet transfusions and had three surgeries (one of which was 12 hours long and left her intubated in the PICU for three days). She has missed out on play dates, birthday parties and dance classes.
She is currently undergoing an extremely painful immunotherapy treatment and handling it like a champ. She has to do radiation treatment two times per day and must fast before and in between due to needing anesthesia. Brooklyn shows such strength time and again, much like other kids going through this horrible disease. She still has a year and a half of treatment left with scans every three months. Her battle is far from over because Neuroblastoma is very aggressive with a terrifying high rate of relapse.
DONATE: youcaring.com/search/go?w=brooklyn%20ekman
AVA MANWARING had a limp in her right leg for several weeks. On July 11, 2013, 3-year-old Ava had a biopsy done on her leg that confirmed that she had cancer. She had a port placed and then the doctors had to x-ray her leg to make sure the port was placed correctly. That’s when they saw the tumor. It was the size of an avocado on her left adrenal gland above her kidney. Pathology confirmed a week later that Ava had Stage IV High-Risk Neuroblastoma. The primary tumor on her kidney had metastasized (spread) to her pelvis, right leg, spinal column, skull and all throughout her midsection. She started chemotherapy on July 23, 2013. After treatment, Ava was declared NED. Ava had scans and bone marrow biopsy on December 2nd and 3rd 2015 because her mother felt a bump on her head. The scan results showed that she had relapsed in her skull and she had been cancer-free for nearly two years. She will need extensive treatment and have to travel to New York.
Ava’s treatments include MIBG therapy, more chemo and radiation. She started the humanized 3f8 antibody therapy in New York on June 27. She finished antibodies on July 1 and was able to go home on July 2nd. Ava had a seizure on July 8th and was unresponsive. She was in the PICU and intubated. They did an MRI that showed that Ava had Posterior Reversible Encephalopathy Syndrome (PRES) as a result of the hu3f8 antibodies that she got. PRES is a very rare occurrence with antibodies, occurring in less than 5% of patients. She was placed on anti-seizure medications along with blood pressure medications. Ava was extubated on July 10 and was breathing on her own.
On August 15, 2016, Ava had a 4-5 hour skull resection/cranioplasty graft surgery along with harsh chemo and more radiation before receiving more hu3f8 antibodies. She is currently enrolled in a clinical trial at Memorial Sloan Kettering Cancer Center in NYC to hopefully keep her free of disease.
DONATE: gofundme.com/y9decwcs
ARIANNA DOUGAN was diagnosed with stage IV high-risk Neuroblastoma at the age of three in June 2009. She spent the next 18 months living mostly in the hospital. Her treatment included six rounds of intense chemo, a tumor resection surgery, two bone marrow transplants, six rounds of antibody therapy and 20 days of radiation. She was proclaimed No Evidence of Disease (NED) but less than nine months later, she had relapsed with tumors all over her bones. She was five.
The doctors told Arianna’s parents that she had less than a year to live. Refusing to give up, they met with a new team of Neuroblastoma Specialists. She received 22 more rounds of chemotherapy over the next 16 months. The chemo stopped responding so Arianna was forced to switch treatments to an experimental trial drug designed to fight off Neuroblastoma. That kept the cancer away for 6 months before she relapsed again. Arianna traveled to Philadelphia for another experimental treatment. In this treatment, they inject you with so much radiation you are actually radioactive and have to stay isolated in a lead lined room till the radiation fades out of you. Once cancer free, Ari started a low dose of at home chemo so she was able to go to school again. Ari went back to New York to try another “try to keep it away” treatment but relapsed after two months. Upon the third relapse, Ari’s doctors put her on a new treatment plan that continued to work for another year. However, Ari relapsed for her 4th time. Ari and her family are back in Philly once again for the radioactive treatment.
DONATE: caringbridge.org/visit/ariannarosedougan
ALLISON KANE was originally diagnosed beginning of her senior year of high school. She went to St. Jude for treatment and had to go through 12 weeks chemotherapy and eight weeks radiation. Upon finishing her treatment, Allison was declared in remission during February 2012. However, Allison relapsed April 2013. Allison had to endure intensive treatment/chemo during summer of 2013. Allison spent one month as in-patient at St. Jude Children's Research Hospital in Memphis. Allison went into remission September 2013 and has been cancer-free since!
