Diagnosed at age 13 months, Kenny has been a fighter since day one! His determination to to fight strong and stay strong during his treatments has been such an inspiration to everyone around him! This year he will celebrate his 5th birthday in November..but since January 2012, he has been celebrating his FIRST all over again! So very proud to call my son, and all his Histio brothers and sisters, my HEROES!!!!!!! And they deserve this title because they fight hard and even though some lost the fight they are still heroes to me!
I was diagnosed with Stage 4 Non-Hodgkins Lymphoma when I was 16 years old. I struggled through 7 rounds of chemo and almost 25 days of radiation therapy over the course of 9 months. During my battle I faced some very severe side effects and dealt with sickness and depression. However, I was also able to see some of the good parts of my life at the same time. Through support from friends and family and my faith in GOD I was able to make it through the hard times. I am now a Sophomore at Regis University studying to eventually become a catholic priest (God-willing). I also speak at different events to help fundraiser for cancer research or to inspire people who need to hear my story for some reason in their life.
Avery was diagnosed with infant leukemia at the age of 9 months. Infant leukemia is a very aggressive form of ALL. Avery received one year of high dose chemotherapy and one year of low dose chemotherapy. We are thrilled to say that this year, SEVEN years after diagnosis, Avery has been declared CANCER FREE!
We found out on may 2, 2013 that he had wilms tumor on his right kidney. They told us that he had a horse you kidney which means they were connected at the bottom. It was to big for them to remove it right then so he had to undergo chemo for 6 weeks before they could see if they could actually remove it. Six chemos went by and it was small enough to remove, his surgery was on july 2, 2013 and they removed his right kidney where the tumor was located and also had to remove some of the tumor that got into the blood vessel that carries blood to his heart. They removed both, when he started recovering he was in a lot of pain but was recovering fast. July 7th came he still in the hospital but turning 4 years old next day he got to go home. He still has three more sessions on chemo but he is doing great.
We were in Disneyworld, he had had a cough, but croup went around the kids in my family. I had a strange feeling though bout Alex. I took hum to urgent card in Orlando. The doctor refused a chest X-ray so I jumped on his.back and may have hurt him.until he agreed. There was a massive tumor pushing HUD heart and lungs off to the side. Us windpipe was almost completely closed, he had only a few days left to live. Sometimes their are no symptoms, like fever, bruising, fatigue. I’m just a regular mom who had a strong feeling and I listened. Alex fought like a warrior, his chemo was grueling and essentially we lived at the hospital for many months. We are so proud of his determination, his ability to fight so hard and once treatment was done he never looked back. We are incredibly blessed to have him and know we have much to celebrate.
My husband Chris and I were blessed with a beautiful baby boy named Liam on January 2, 2008. The meaning of his name is “Powerful Warrior” and little did we know what the future would bring for Liam and our family. When Liam turned 4 months old, he began spiking high fevers. His cyclical fevers came every month and lasted 5-7 days like clockwork. After 10 months of multiple doctor visits, blood tests, and specialists, not one doctor could explain why this was happening to Liam, including a pediatric hematologist/oncologist.
Liam’s fevers started to become more frequent, happening twice a month and lasting a bit longer each time. On March 24, 2009, Liam was admitted to Children’s Hospital in Aurora, CO. He stopped eating, was extremely lethargic, experienced excessive sweating, became very jaundiced, presented with an extremely distended abdomen, and was in obvious pain. Liam underwent various diagnositcs including x-rays, ultrasounds, lumbar puncture, and bone marrow biopsy. The results were devestating.
On March 26, 2009, 14 month old Liam Schulze was diagnosed with Hemophagocytic Lymphohistiocytosis or HLH. Liam had been fighting this disease for nearly 10 months before it became full blown, which was a miracle in itself. After some research, we decided to take Liam to Cincinnati Children’s Hospital since the expert in the field of HLH, Dr. Lisa Filipovich, was there. Liam was admitted on April 15, 2009. He would need a bone marrow transplant (BMT) to have any chance at survival. However, they did not predict it would be so difficult to find Liam a suitable bone marrow match. Out of approximately 13 million people worldwide, there was not one suitable match for our little Liam. As they continued to search and search, Liam was treated with chemotherapy and steroids among other medications. He had a rare HLA typing and therefore a sufficient bone marrow match was never found. As a result, Liam remained on chemo and steroid treatments for approximately 4 months
Danielle was diagnosed at age 3 and went through surgery, chemo and then radiation. Her tumor remains on her pancreas but has not grown since radiation. She has fought incredibly hard to beat cancer and has many side effects due to the type of cancer she had. She LOVES animals, especially dogs and hopes to live on a farm in Indiana so she can rescue as many animals as possible.
Max was first diagnosed with ALL December 20, 2005 at the age of 22 months. He endured many complications, but the cancer responded to treatment very well. We stayed at RMH for nine months before returning home to Ridgway. Max enjoyed a huge Off-Therapy Celebration after his last day of treatment April 18th, 2009. Fourteen months later, he relapsed on June 28, 2010. We returned to Denver (Aurora) and are going through induction while staying at Brent’s Place and searching for a good transplant match. The search results will determine our course of treatment plans. Max continues to be an inspiration through his bravery and fun spirit. He enjoys the Big City attractions as often as possible.
Gabriel was diagnosed with Medulloblastoma in Aug 2013. He went through 6 weeks of radiation, and 6 cycles of high dose chemo. His recent scans are clear, but he has a lot of side effects we are dealing with. Gabe is in good spirits, and loves his friends and family. His infectious laugh and smile will light up any room.
Jessa is a vibrantly sweet 11-year old with sun-kissed freckles and a smile that warms your heart. When she was only three, Jessa was diagnosed with leukemia. She was strong and battled through three years of treatment. At 11, her leukemia came back. It has been a tougher battle than last time, with much stronger high dose chemotherapy. She has 40 more week of treatments to complete the clinical trial that will give her the best chance for a life long cure.
Jackson is an HLH warrior who was diagnosed at about 10 weeks old. He started to develop a fever shortly after receiving his 8 weeks vaccines. The fever persisted for about 10 days. During this time he was seen by the doctors in the clinic, and was admitted in the hospital a couple of times over those few days. Each time his blood came back even worse than the previous time. On New Year’s Eve, we took him to the ER and this time his liver and spleen were now enlarged. He was a very sick little boy and was admitted directly to the PICU. They suspected that this might be the diagnosis, but hated to jump to conclusion. Jackson was diagnosed on January 5th and began with chemo immediately after the diagnosis. We were very fortunate that it didn’t have time to spread to his spine or brain. Jackson was admitted for his BMT on April 5th, 2011. He received his life saving transplant using cord blood on April 15th, 2011. At this time, he is doing fabulous. His donor cells are now at 100%. Jackson 5 years post transplant.
Taylor was diagnosed with Desmoplastic Small Round Cell Tumor in June 2007 when she was 11 years old. She fought a long courageous battle for three straight years without ever having the chance to go into remission. On April 26, 2010, when Tay was 14 she passed away. Tay will forever be loved and missed by her family and friends but we will continue to STAY strong!
I’ve looked into a mirror and seen a stranger before. It’s not that someone unknown was
present, but instead my eyes had simply failed to recognize my own uniqueness, that which sets
me apart from every other person. It’s funny though, because even though sometimes we forget
the ways in which we are unique, it is impossible to forget the unique qualities that a friend or
family member may carry. Take my brother James, for example. Yeah, he has red hair, he’s
fairly tall, shoot, he’s even quite athletic, but these are not unique traits. James had cancer
though. He had cancer, he fought cancer, and he won against cancer. Yes, you are right, many
others have had cancer as well, so, maybe his encounter with cancer isn’t unique after all.
Wrong. It’s not that James had cancer, it’s not even that he won against cancer, but instead
James’ uniqueness comes from the way in which he fought cancer, the way in which he won. He
had tears, but smiles as well. I heard him scream, “What the f#$%,” but I also heard him thank
God for each day. His big heart replaced the white blood cells that the chemo swallowed, and
with that heart, he visited other cancer patients, sharing love and joy with each of them. What’s
unique about James? Well, a picture is a thousand words, right?
Jake was diagnosed with HLH at the age of 19, he received a bone marrow transplant on 09-09-09. After his transplant a fungus settled in his lungs and quickly moved to his bloodstream, central nervous system, heart and brain. He passed away the day after his 20th birthday in 2010. Jake was an amazing young man, he played the piano and saxaphone, he was a shriner and a college student who cared about making a difference in the world. He was involved in Autism Speaks, had enlisted in the Army hoping to help our soldiers with post traumatic stress disorder and victims of abuse when he finished up his degree. Jake went blind after his transplant but even that wouldn’t stop him from continuing his upbeat attitude and making people laugh, he was an incredible son and friend who is missed everyday!
In Sep of 2006 Krystal was diagnosed with Hodgkins Lymphoma and started Chemo which she got through beautifully and with almost no complications. After a few months she was cancer free and we thought done with cancer forever. Two years later in Nov of 2008, Krystal relapsed and chemo started again. This time she also needed radiation and stem cell harvesting. This time treatment was more aggressive than the first time and she had a lot more hospitalizations. But after several weeks of Chemo, numerous blood and platelet transfusions, scary allergic reactions, painful biopsies, mediport placement, x-rays, CT scans, PET scans, bone scans, super painful GCSF injections, double picc line placements, long days of stem cell harvesting, multiple ER visits and hospital stays, several radiation treatments, and countless pokes Krystal completed her treatment and was declared cancer free! In May of 2011 graduated from Cherokee Trail High School, which is quite the accomplishment after missing 2 years out of her academic career! After almost 5 years of being cancer free, Krystal relapsed for the 2nd time in Feb 2014. At this point she was taken off study and she was put on a treatment plan of 6 rounds of Brentuximab, 2nd Stem Cell Harvesting and a life saving Bone Marrow Transplant. This 3rd time around was the hardest for Baby Girl, she reacted to pretty much everything and anything they gave her. But by the Grace of God she got through it and is now again free from Cancer. Krystal is an amazing young lady and we are so blessed to have her as our daughter. We are so proud of our “Baby Girl”!!!
Jonah was originally diagnosed July 16, 2002, 6 days before his third birthday. He had a bone marrow transplant on October 31 from his then four-year-old brother, Sam, who told the nurses who asked where his costume was going into the four-hour procedure that he “was a hero for Halloween.” Almost 11 years later to the day, Jonah relapsed on October 25, 2013. He had a stem cell transplant from his sister Emma in February 2014. He’s battled graft vs host, BK virus and had to have radiation this time, too. He’s missed his Freshman year of high school, but remains the most amazing spirit I know, quick-witted and totally snarky. My question, “What is the difference between Google and Google Plus?” His answer…”They added a proton.” Our life is full, rich and blessed. And we, too, are a thankful Wapiyapi family.
Amanda started with very sever aplastic anemia VSAA it is like leukemia but very rare. Amanda’s bone marrow quit making all 3 cell types red blood cells, white blood cells and platelets. She had to rounds of ATG( Anti-thymocyte globulin) that was 97% going to work .Well it didnt so she had to have a BMT. (bone marrow transplant) The first one failed so they did a doubble cord blood the 2nd time. Amanda was at childrens hospital from Oct. 2008 to March 2009 she finaly got to go home. Shortly after returned with GVH ( graft vs host) on her skin the cord blood had taken over a little to much. She then developed PTLD(Post-transplant lymphoproliferative disorder ) in June of 2009 this meant her b cells were reproducing at a very fast rate and only 20% of transplant patiens get this. The PTLD had turned into Diffuse large B-cell lymphoma only .04% of PTLD turns into lymphoma she had a mass on her brain stem and 3 in her lungs and 3 by her keddneys they treated this with more chemo and she was back home in 3 months. She came home againg but the stay was not long a few weeks and we were back at the hospital. Amanda was not eating well and was put on a NG tube because the IV-TPN was not working anymore. her body was tired and she was getting every sickness around her she had been fighting adno virus ( for us its like a common cold) since transplant she was in and out of the hospital it was one thing after another back in the hospital on July 1st 2010 and then she got PRES (Posterior reversible encephalopathy syndrome) in her brain and had a vitamin K diffecency and this caused her to go into a coma for 5 days she came out of the coma recovered from the press and was on her way to recovery and then her lungs started to show signs of infection her little body just couldn’t fight off anything else the adno and GVH had spread to her lungs she had a biopsy done on Aug 3
Taylor was diagnosed March of 2013. We had no symptoms or clues and just two days later we almost lost her in the picu. She’s had a huge battle, over nine months in patient, a collapsed lung, blood clot in her head, and too many blood and platelet transfusions to count. She just finished her treatment and will now be followed by a neurologist, neurosurgeon, and headache team because of the residual effects of chemotherapy. She’s my over-comer.
Michael was diagnosed at 13 with Stage 4 Ewing’s Sarcoma in his right pelvis and lungs. Underwent Chemotherapy and many surgeries. Went into remission after one year of treatment. Six (6) months later it was back and received more Chemotherapy, surgery and Stem Cell transplant. Two (2) years later it was back again. While having surgery to remove the latest tumor he suffered a major stroke and did not survive. We lost him on October 7, 2010. We are thankful for the 17 years we had with him and have many good memories. Michael was diagnosed at 13 with Stage 4 Ewing’s Sarcoma in his right pelvis and lungs. Underwent Chemotherapy and many surgeries. Went into remission after one year of treatment. Six (6) months later it was back and received more Chemotherapy, surgery and Stem Cell transplant. Two (2) years later it was back again. While having surgery to remove the latest tumor he suffered a major stroke and did not survive. We lost him on October 7, 2010. We are thankful for the 17 years we had with him and have many good memories.
I was Diagnosed at The age of 15 Years Old With AML (Acute Myelogenous Leukemia) on December 12th, 2000 and was given 3 Weeks To Live!!!!! I have now been IN REMISSION & CANCER FREE for 14 YEARS, 7 MONTHS & 13 DAYS!!!!! I will Celebrate My 31st Birthday on January 13th, 2016 and just 4 Days Later on January 17th, 2016 I will Happily & Proudly Celebrate 15 YEARS of being IN FULL REMISSION and CANCER FREE!!!!! I am now happily married to My Husband Patrick McClellan for 2 Years on September 28th Just 9 Days After This Year’s Miracle Party!!!!! We were married on Saturday, September 28th, 2013!!!!! My Husband and I will be Performing 2 Dance Routines at The Miracle Party this year as part of the Entertainment and we are so excited and we can’t wait!!!!! We are really, really, really, really, really looking forward to it!!!!! We are so honored, privileged, thankful, grateful, appreciative, lucky and proud to be given this chance and opportunity!!!!! We are so ready to Celebrate with Everyone at The Miracle Party This Year!!!!!
Taylor was diagnosed with Stage IV High Risk Neuroblastoma in August of 2008, she was just shy of 3 years old. She underwent several rounds of chemo, two port implants, surgical removal of the tumor, two bone marrow transplants, radiation therapy, and antibody therapy. Taylor ended up in the PICU on three separate occasions during her treatments. Yet, while Taylor’s treatments were extremely intensive and often very painful, her spirit and strength throughout it all kept the entire family going. Thanks to the amazing team of doctors and nurses at Children’s hospital, today Taylor is a healthy and happy 9 year old. We are truly thankful for how well Taylor responded to her treatments, and for all the amazing support of family and friends (as well as hospital staff) during her terrible ordeal.
My name is Julian Nangauta and was diagnosed as early as four months old with Aplastic Anemia. I relapsed in 2008 with MDS and had two bone marrow transplants at childrens hospital. I am currently in remission and got a chance to go on my make wish trip to Guam where I spent time with family and friends and do some ocean fishing. I love life and thank God and the doctors and nurses that helped me get this far being able to finally go back to school and try to live a normal life. Blessings to anyone going through treatment and living every day to the next. May all my friends that aren’t suffering anymore be happy and without pain up there in heaven, I love you and miss you.
Justin was diagnosed with high risk, stage IV neuroblastoma in Sept. 2006 at the age of three. Justin went through many rounds of high dose chemo, several surgeries, radiation, stem cell transplant and ch14.18 antibody over the next 18 months. Justin was cancer free and treatment free for 6 month before relapsing in the brain (May 2008, age 5). Justin once again went through intense therapy, surgeries, radiation and transferred to MSKCC in NYC to receive the 8H9 antibody and the 3f8 antibody, both of which are experimental. Justin was cancer free and treatment free for an additional 6 month before relapsing again in one of his ribs (Nov. 2010, age 7). The rib was removed and Justin went through more chemo and radiation. He began the high dose 3f8 study at MSKCC in January 2011. He reached HAMA right away and has been working on reducing the HAMA, so he can continue treatment. Recently an additional spot was found and we will rescan in the middle of October for verification of neuroblastoma. Justin is a 3 time cancer survivor and maybe 4!
Zaida turned 3 in September 2007. We learned she had cancer a month later on October 31st. After eight very difficult and scary days in the hospital, we learned it was peritoneal carcinomatosis, resembling ovarian cancer and mesothelioma (neither of which should happen to a 3-year-old). She is now almost 11 and still an energetic and bright girl, even after all she has been through.
Zaida has been a cancer patient for nearly 8 years! She had 3 years of various chemos and significant surgeries. After this, we had 22 months of remission, treatment-free! Zaida relapsed in April 2012, and had surgery and radiation (first time for radiation) over the summer. Then, she had 2 years of post-radiation chemo, and again went off-treatment this past October.
In December 2014, we learned that Zaida was having another relapse, and we must fight cancer again. Zaida had another lengthy surgery and hospital stay in April 2015 at MD Anderson. We’ve also learned that the cancer has spread to her chest, and we are now exploring more options.
Zaida has a sister Runa (age 13) who is wonderful and supportive! They both love Minecraft, My Little Pony: Friendship is Magic, Pokemon, The Legend of Zelda, Harry Potter, fairies, magic, and animals.
Haden was a healthy and happy newborn. He was reaching milestones like he should. When he turned 1 he started getting recurrent ear infections that antibiotics wouldn’t cure. He was also throwing up and some other issues. Around 20 months old we noticed a huge bump on the side of his head, doctors kept insisting that it was a swollen lymph node. A month later he had a bump appear on the left arm right by his elbow. He complained of pain. The doctor xrayed his arm and he told me to immediately go to the ER that it was a tumor. Our world shattered at that instant. Not knowing exactly what the beast was and why it would attack a baby! 6 days later we were told that it was LCH and he would need chemotherapy. The tumor invaded the whole left side of his head from the eye orbit all the way to the base of the skull. It was definitely a hard road but he has been off treatment since Nov. 09 and he is doing great! While he will never be cured and we will always have that in the back of our minds, we try to live every day to the fullest!