Jamie had been complaining on and off of abdominal pain and nausea when the severe itching started. We took her to urgent care but were sent home and told she was fine. A week later her eyes and skin turned yellow. We took her to a hospital near our house and while they could tell she was severely jaundiced and her liver and spleen were enlarged, we were sent home once again. Unsatisfied with their answer, our next visit was to the Children’s Hospital gastroenterology clinic.
Concerned about her worsening jaundice, they ordered an ultrasound. During the ultrasound, two techs and a radiologist noticed something in her liver. Our GI doctor, Dr. Narkowitz, ordered a CT scan. At the time we all thought she had gallstones and would need her gallbladder removed. About a half an hour after her CT scan, Dr. Narkowitz came into the waiting room with Dr. Carrington, an oncologist. That was the moment our world came crashing down around us. Never in a million years did we even consider that out sweet little 6 year old girl could have cancer.
She was immediately admitted to the hospital and a biopsy was ordered for the next day. Because of the location of her liver it was going to be a long surgery that couldn’t be done laproscopically. After three hours Dr. Narkowitz came out of the operating room and told us it didn’t look good, that they were almost certain it was malignant. The next day the oncology team came in to tell us that Jamie had hepatocellular carcinoma, a liver cancer that was extremely rare in young children and particularly resistant to treatment. In fact, Jamie’s case is 1 in 1.5 million. She also had biliary atresia, meaning the tumor had metastasized and moved into her bile duct. This was also extremely rare and was the cause of her jaundice. Ultimately, it saved Jamie’s life.
Our only hope now was that the cancer hadn’t spread outside of her liver so that the tumor could be surgically removed. After several more scans, we had our first
Brayden was diagnosed with Leukemia 2 years ago. It was a devastating blow to our family and continues to be a challenge to manage treatment and 5 children. But we have been blessed by our wonderful family who supports us in so many ways. Brayden has done great with his treatment and we are looking forward to completing it in 2017!
Leah had just become a Big sister two days before her little world was rocked to the core. She complained of arm and leg pain so my husband and I checked out of the hospital with our 2 day old son and took Leah, then 3, to the Dr. Blood tests were run and we were rushed to the Children’s hospital to confirm our worst fears. We made that very small hospital room our new home for 13 days. Leah’s fevers would not go away and we were not allowed to leave until they did. It has now been a year of treatments and Cancer is a word we have become familiar with, I never thought that would happen. Leah is doing awesome! She is fighting and beating Cancer! She still has treatments until October of 2013, but there is a light at the end of the Cancer tunnel
On October 22nd 2010, we took our beautiful daughter Delaney in for an MRI scan on her hips as something was just not right. She was having trouble walking, getting tired very easy and unable to do regular activities.
During the scan Dr Deering let us know that we would have to be rushed to Children’s hospital as it was far more serious than we imagined. That evening we were care flighted over from St. Mary’s to Children’s hospital in Denver. There we were brought to the 7th floor, the Center for Cancer and Blood Disorders.
After speaking with many Dr.’s and receiving many tests we were given the diagnosis of neuroblastoma. A solid tissue tumor that begins on the adrenal gland and is usually found in infants and toddlers.
Delaney has battled through 7 rounds of intense chemotherapy, a stem cell rescue, 20 rounds of radiation and is currently receiving, an antibody therapy that will attach itself to any remaining tumor cells in her body.
She is an amazing and strong little girl that has fought this battle with a smile. I couldn’t be more proud of her strength and courage that no child should ever have to face.
Last year my parents had the opportunity to meet Stacy. I live here in El Paso TX and had the privilege to be part of this wonderful experience with all the family because no matter how apart we may be we all have or is going through the same process. I would love to be part again in this wonderful journey. Ourself here in El Paso this sat 24 we are having a walk in memory and in honor of those extreme fighters we got . 🙂 thank u if i could be part of it, my family and myself
My daugter was 1 year when she was diagnose, bt she had the possibility when she was born. She was a miracle not only because of her leukemia but she had down syndrome and a heart defect which was taken care when she had 5 months. She had surgery at Dallas and thank god all went well. After her first year all change a new journey had begun. We were all devastated and had to continue. She was diagnose with Acute myeloid leukemia. She was the happiest baby ever and i know that still is. Within 6 months she fought for her life and all seem to go well but she was going to get better to be gone. Her treatment didn’t help at all and soon had to bring her home and to stay for some days Only .. 🙁 bt i know that shes in a better place and that all has a purpose in our lives . Thank u for ur support
My Son was diagnosed with ALL at the age of 5 months. He had 6 months of unsuccessful chemo. He then underwent a bone marrow transplant a week before his first birthday. This was successful and he is in remission how ever he suffers chronic Graft vs Host disease from the transplant and has a number of developmental delays from it. He is our miracle and his website is www.savebabyreef.com
My brother Neal was having pain in his left arm for months and Dr’s were treating him for a nerve disorder. After 9 months of treatment for that with no relief, They finally ordered an MRI of his arm. That is when they finally found the tumor wrapped around the bone in his left arm. Neal although he was 25 was diagnosed with a childhood cancer called Ewing’s Sarcoma. Neal made the choice on the recommendation of his doctors, to be treated at Childrens hospital. Neal fought from Aug of 2006 til he became an Angel on July 19th 2007. Neal tried every protocol and medicine he could to fight this. He is my hero! We all miss him everyday.
Our Family’s journey began in March 17,2011, Rocco went for a physical for sports for school in which he told his Doctor that he had pain in his left side, so the doctor checked him and told me to take him for a blood work just to confirm everything was ok. I received a call from Rocco’s doctor in 4 days and was told to bring him back for more blood work because the count for his blood cells were low. The results for the second test came back and it showed that it was very low, that is when I was told to bring Rocco to Danbury Hospital for transfusion and more test to see what is going on. We were then transfered from Danbury Hospital to Yale New Haven Hospital for more tests on march 27 – 30, 2011, it turned out to be that Rocco was diagnosed with “Pancytopenia” they also checked his bone marrow which showed Trilineage Hematoiesis, plent megakaryocytes. He was Diagnosed with “Autoimmune Hemolytic Anemia”, they al so discussed that he has an enlarged spleen. Rocco was in and out of the Hospital with high fevers, up to 102 -104, they had to do more tests to see what is going on. On April 29,2011, Rocco was diagnosed with Secondary (HLH)-Hemophagocytic Lymphohistiocytosis, unknown mutation, In Yale New Haven Hospital, he had undergone his initial 8 weeks of treatment, but unfortunately there was no improvement; so on June 28,2011 he was transported to Cincinnati Children’s Hospital for more treatments. BMT- On Aug.30,2011 Rocco was scheduled to begin the preparative regimen which,Rocco never made it, Rocco passed away on August 29,2011
Jaxon was diagnosed with Hepatoblastoma when he was 14 months old. Jaxon has a tracheostomy and needed ventilator support due to his under developed lungs while going through Chemo treatment. Jaxon is now 6 years old and thriving Cancer and Trach free!
Jaxon was diagnosed July 31,2007 with metastatic stage 4 hepatoblastoma that had spread to both lungs. After having numerous rounds of chemo, Jaxon has had 2 liver transplants in February of 2008, and the second one was successful. Jaxon has stage 4 chronic kidney disease, moderate to profound hearing loss, and foot drop due to the side effects from the chemotherapy. Jaxon is a survivor and continues to battle on!!
On February 23, 2009 we took our 2 1/2 year old daughter, Abigail, to the doctor for what we thought was dehydration. She vomited on Friday after supper, but ran around and played just fine. Saturday she vomited again, but again seemed okay after and had no fever. Sunday she was very tired and pale and listless. I pushed fluids and checked for wet diapers just as you are told to do as a parent. Monday morning I took her to the doctor. Our pediatrician sent us to Children’s hospital in Minneapolis for fluids and other tests to see what was going on with her and why she was so pale and listless. After a few hours in the ER and some testing done we were told we had a very sick little girl, but they were not sure what was wrong. Her body was not producing blood cells or if it was they were being destroyed immediately. As she lay on the bed in the ER she kept asking for milk and “guis” (juice) and Daddy and then said “I want you Mama”. If I had only known that was the last words she would speak I would have curled up with her and never let her go. I had no idea what lay ahead of us.
Abigail was put in the Pediatric Intensive Care Unit and was intubated and started receiving blood and platelets. It was also discovered that she had a very large blood clot in one of her major arteries. This, combined with her inability to clot blood was hard for the doctors to treat. On Tuesday the 24th they did a bone marrow biopsy and discovered she had a very rare and dangerous immune disorder called HLH (hemophagocytic lymphohistiocytosis), where your histiocytes (blood cells) go crazy and can attack your blood, skin, liver, central nervous system, etc. She was to begin an eight week treatment protocol with steroids, immunosuppressants and chemotherapy. Once she was done with that she would have to have a bone marrow transplant to be cured. The chemo seemed to be working, but on Wednesday the 25th after just one day of knowing what she had her heart stopped beating.
I had a pain in my leg and I went to the doctor in Elizabeth, CO. they said it was nothing then the radiologist said I needed to have an MRI. They said I had cancer and sent me to Presbyterian St Lukes. I stayed at Brent’s place for about 2 years did 1 1/2 years of chemo. I had a tumor right by my knee so I had a knee replacement a donor tibia a donor knee cap and a muscle rap from my calf around to the front of my bottom right calf. I won’t ever be able to have full rotation in my knee again.
Benjamin is a two-time survivor of Neuroblastoma. He was initially diagnosed with Stage IV in 2003 and underwent a very rigorous regimen of surgery, chemotherapy, radiation and bone marrow transplant. He was clean for 4 years when, in July of 2009 doctors noticed a small tumor had appeared behind his left lung. After two more rounds of surgery, radiation and chemotherapy Ben underwent the very painful 3F8 antibody treatment at Sloan-Kettering in New York.
On July 2nd, 2018 Ben Brewer left us and became an angel. We will miss him deeply.
Kennedy was the true inspiration to the Miracle Party in 2008. As she ended over a year of treatment for osteosarcoma I wanted to celebrate her END OF CHEMO by throwing a PARTY! It quickly turned into a party to include as many of our friends we met along the way and low and behold….THE MIRACLE PARTY WAS BORN! Kennedy is currently awaiting surgery to reconstruct her chest wall where 3 ribs were removed. She still has scans every 3 months. Kennedy is a Freshman at Rangeview and is currently on their volleyball team. Kennedy lost her best friend Taylor Rivera in April 2010 and wants nothing more to honor her at the 2011 Miracle Party along with her friends who are still battling and those in remission.
In August of 2001 my granddaughter Janice was diagnosed with cancer. She went through chemo and two surgeries. For two years she battled the cancer. By the grace of God her cancer has been in remission. She is 13 years old August 2010. My daughter Tashia was diagnosed with breast cancer. She has been through chemo and surgery. As of today, Tashia is still in chemo.In 1982 Tashia’s mother passed away from breast cancer. She was 24 years old.
Elizabeth was diagnosed with Ewings Sarcoma on Sept. 28th, 2009. She finished treatment in October of 2010. After numberous surgeries and 14 rounds of inpatient chemo, she was declared cancer free. Elizabeth has now been in remission for 21 months and continues to get healthier and stronger each day.
Kohl was just shy of his 8th birthday when he was at football practice and took a hit on his right arm and it began to swell. We took him the next day to see his pediatrician who sent us to get an extra and by 1:00 pm we had an appointment at Children’s Hospital and we found out he had Ewings Sarcoma a rare bone cancer in his right radius. He had 14 rounds of chemo and a bone transplant. It was a long struggle but he is doing great today but he is unable to play sports anymore.
Matt was sent to see an endocrinologist for possible growth hormone deficiency. After lots of tests they discovered he is growth hormone deficient, we were ready to start the shots. The last test they do is a MRI of the pituitary. This revealed a thickening of the pituitary stalk. Brain surgery was scheduled for 1/2/14. On 1/8/14 we were told he has cancer. He started treatment on 1/13/14.
Seth was DX with stage 4 PNET tumor when he was 20 months old. He was treated at Duke Brain Tumor Center and fought for 8 months before earning his wings. Seth was full of joy no matter what his obstacle or pain. He always had a belly laugh and a smile. He is my heart, my love, he is the courage I have inside, he is the reason I fight for childhood cancer kids. www.heartsofhope08.com
Chloe was diagnosed with Langerhans Cell Histiocytosis on May 11, 2010 at the age of 9 months. We were told that Chloe would need a years worth of Chemo and there would be alot of ups and downs. We would soon learn more than we wanted to know about this awful disease. Chloe had an ear infection that would not respond to antibiotics she then developed a fever that lasted daily for seven weeks. After multiple hospital stays an abdominal scan showed Chloe had 30+ lesions in her pelvis and upon further review of a brain mri it was discovered she had at least 2 lesions in her skull that had been overlooked. Chloe was born with histiocytosis but by the time it was discovered at nine months she had pelvis, upper leg, spleen, lung, ribs, sternum, arm, upper and lower jaw, and skull involvement. We started with vinblastine but Chloe did not respond so after 12 weeks she was switched to vincristine and ara-c. Chloe was unstable and made no progress on these chemo eithers. It was decided to switch Chloe to Cladribine, during this time Chloe developed Diabetes Insipidus. Diabetes Insipidus turned out to be a whole new ball game seperate from the Histio. Chloe ended up in ICU due to her sodium dumping. We were relieved when the news came that the Cladribine had worked and Chloe could be done Chemo. Although Chloe has been done Chemo for a year now she has been left with DI, body temperature regulation issues and CNS damage that has yet to have the extent of the damage determined. Chloe is an amazing, strong little girl that is doing great and we are so grateful, she is a true inspiration for everything she has endured and conquered in her short life time. I know God has great plans for her and we are proud to be part of her life. She has taught us all a lesson.
Conner is 4 with Ewings Sarcoma. Conner is an Air Force Military Child. Conner loves sports, his siblings & being a Wylie Bulldog. He loves going to the football games, watching his sister play soccer, & playing with his brother.
Conner is a super sweet, often soft spoken, funny, 4 year old (turned 5 in July). He says the funniest things, probably because his sister is 17 and brother is 19. Conner was very much our “miracle” baby to start with. My husband and I are High School sweethearts. We got married at 18, had first born at 21, second born at 23. We thought we were done, my husband had a “V”. Fast forward a few years and we didn’t feel “complete”. 10.5 years after the “V” my husband had a reversal. It was a success and within 2 months I was pregnant with Conner. Conner is our family’s blessing. Conner has taught the older two what true unconditional love is.
Happy to report on 12/6/13 Conner received his last round of chemo! HOPEFULLY FOREVER!
In these 9 months, 3 weeks since diagnosis Conner has endured a Bone Marrow Aspirate, a Biopsy, 3 surgeries (port placement, tumor biopsy/removal, & tumor resection/chest reconstruction), has gone under general anesthesia 7 times, 75 days of Chemo, 156 doses of the 6 different chemotherapy medicines – Vincristine, Topotecan, Cyclophosphomide, Ifosfamide, Etoposide, & Doxorubicin. 67 days being connected to IV fluids 24/7, 107 Clinic Visits, 42 CHoC visits, 7,874 miles driven for care, 14 times being neutropenic, 10 pain meds (morphine, oxycodone, valium and such), 92 Pokes (Blood draws, Port Accesses, Shots, Arterial lines, and IV’s), 1 Chest Tube, 24 Scans – (CT, PET, Bone, ECHO, EKG, MRI, Xray), 17 neulasta shots, 11 Blood Transfusions, 4 Platelet transfusions, 4 unexpected trips to the ER, 4 fevers that required a trip to the hospital, 26 Overnight hospital stays, 1 night in the PICU, an ambulance ride, and a care-flight helicopter.
It all began when i was 10 years old. It was about to be Thanksgiving then something really serious came up. But when people say that must’ve been awful and i say “some of it was but the people who were their for me made it a lot easier especially Amanda Jolynn peebles. SHE made my day everyday ,and i thank i met her everyday”. when i got the H.L.H , it was like god opened a door then, i would see that there are still good people on earth.
On Sep 3rd 2010, Isaiah collapsed in front of his parents and was rushed to the hospital. There were no prior symptoms (except a cough) but he suffered severe brain damage as a result of complications from lymphoma which wasn’t diagnosed until that day. He never regained consciousness and he took his last breath on Sep 10th in my arms.
Isaiah was a true superhero and would often be seen wearing costumes of his favorites, especially his batman costume. He also loved to dance to MJ songs. Isaiah had a contagious smile that would brighten any room and was truly loved by all who were lucky enough to have known him.
Diego is a 15 year old boy diagnosed with Epilepsy and Leukemia. He started having seizures when he was two, they were under control until he was diagnosed with Leukemia (ALL) on January of 2010. Since then, Diego has been going through chemotherapy and having a hard time with side effects. Because of steroids he got Avascular Necrosis in all his joints which gives him a lot of pain and lack of movement. He is now in the Maintenance Phase and is still a long road but we live our today knowing that God is taking care of tomorrow!!
Hi I’m Sinjin Andrukates and I started my journey in the cancer world in May of 2007 I was 13 years old. I had an 18 cm Burkitts Lymphoma tumor in my abdomen, 18 cm is about the size of a small basketball. Later that year after countless rounds of chemotherapy the doctors said I was in remission. but then I relapsed and had to fight the battle again and needed a bone marrow transplant. I had my transplant in May of 2008 by May of 2009 I was cancer free but I was then dignosed with Scleroderma. The scleroderma was brought on by something called graft verses host from my transplant. I am now 17 and 2012 is my last year of high school. I am one of the Senior editors of yearbook and in between doctor appointments enjoying high school. I have lost so many I care for on this journey and just recently lost a very good friend Aaron White while he was in transplant. I say cancer may take my body but never take my soul and my motto is Kick The “Can” Outta Cancer. I have a caringbridge site where you can follow my journey at www.caringbridge.org/visit/sinjinandrukates.
I am Living strong with courage.
Rileigh is 3 years post BMT from Children’s Hospital in Aurora. Rileigh received stem cells from cord blood donors; none of her family was a match. She also has a genetic disorder called Fanconi’s Anemia. Rileigh was the first successful BMT recipient who has this disorder at Children’s. Most patients with this disorder go to Minneapolis or Cleveland for their BMTs. Fanconi’s Anemia is a genetic disorder where patients get early on-set cancers. At this time, we don’t know which gene is causing Rileigh’s Fanconi’s Anemia, but research is happening world wide to find a cure.
Nate, and his brother and mother left their home on Oahu to visit Colorado. We were moving from Oahu to Germany. Nate had a cough the last week on the island which we thought was caused from the VOG. After landing in Colorado the cough continued. On June 8th, 2013 Nate and his mom went to urgent care for the cough. Nate was diagnosed that night with leukemia. Dad flew in. Our things were eventually shipped to Colorado where we are living while Nate receives treatment. The winter of 2013 brought lots of time in the hospital, but also Nate got to see his first snow and fell in love with skiing.