Our son Klaus is a gleaming example of a beautiful, active, “healthy” child living with a chronic cancer condition. He lives daily and shines bright with a very rare, orphan-sarcoma located in multiple locations in his lungs. The story of many orphan sarcoma’s such as PFHT is that at times, they can be very hard to properly diagnose, which is the story of our sweet son. Very soon, we will be marking off 5 years on the calendar that Klaus has been living with his disease and we give thanks for each and every day. We are so thankful to know what we NOW KNOW and we share this as knowledge, and inspiration for others who may follow in our son’s path. May our knowledge help others find the proper treatment for PFHT sooner. The only pain Klaus has endured has been from the invasive procedures and multiple surgeries which he has undergone to remove his disease. What started as a pea size lump in his lower gumline,, ended up spreading to his lymph nodes in his jaw and neck, lower left mandible, parts of his vascular system and all 4 lobes of his lungs. The details of his surgeries are just endless. The longest surgery was 12 1/2 hours–he even has a new set of prosthetic teeth which are just amazing! So for now,, we just LIVE LIFE,, dance our pants off at the Miracle Party, and spread awareness about the funding needed for research to find cures for the many cancers that effect too many sweet children. Our greatest gift received so far has been the welcomed hearts from the other families in this special cancer community. May our little Dragon continue to show us the light until he’s 103 years old!
Taylor was given the terrible news Dec. 2008 !! Our life was quickly turned upside down, 4th grade put on hold, 7 hour surgery, and the words “your daughter has CANCER!” would haunt us for the next 5 months .. Taylor hit the beast head on and flew thru treatment with grace and willpower! In the end SHE won and is now CANCER FREE for 8 and 1/2 years.
Taylor graduated High School on May of 2010 and is now a College student at Western State College!! Together she and I have learned life is too short to sweat the small stuff! Taylor continues to inspire me to live life to the fullest and never let anybody get you down. SHE IS MY HERO .. And I am her Mom
I have A beautiful Daughter Katie she is 14 yrs. old and was diagnosed with cancer when she was 5yrs. old. She had a tumor in her kidney so the best hospital in the world Children’s Hospital in Denver Colorado removed the tumor along with her kidney. Katie did 6 months of chemo and 7 days of radiation and today is a beautiful young lady. I thank the Lord and all the great people that help my little Katie Bug.
Sydney was a healthy happy 11 year old enjoying this summer with her friends, when she became dizzy and was rushed to the hospital where she underwent emergency surgery to save her life. She was diagnosed with with stage 3 anaplastic astrosytoma–our world was instantly changed forever. Sydney was flown to Children’s Hospital and underwent a second surgery to remove the rest of the tumor. She underwent 30 radiation treatments and will start 30 weeks of chemo on Monday Oct. 10th. Sydney got to go back to Montana for 3 weeks to see her dad and brother and enjoyed some good healing time. She is very brave and is ready to start her chemo treatments. Sydney will be in Denver until May to get her chemo treatments. She will get to go home to Montana for short visits on her days off. We are blessed to have the wonderful staff at Children’s Hospital to help us get through our journey.
Kayley DOB 10/10/01 was diagnosed with DIPG on 8/9/07 at the age of 5. She fought her battle with cancer for 5 months and 27 days before she earned her angel wings on 2/6/08 at the age of 6. She went thru the standard treatment of Radiation and oral chemo (Temador)for 6 weeks and then continued the Temador for one week every month after that. She also went from 45 to 90 pounds because of the steroids she had to take to reduce the swelling on her brain. Before cancer came into our lives she was a perfectly healthy, outrageously smart and ridiculously beautiful sweet little girl who loved all animals and never met a stranger. Her favorite colors were purple and pink and she loved to wear frilly dressed and get dirty and greasy while still being pretty.
Just shortly after her 8th birthday, between Christmas and New Years, Ellory was diagnosed with Acute Lymphoblastic Leukemia (ALL). Within 24 hours of her diagnosis, she had surgery to install a mediport and was receiving her first chemotherapy treatment. She remained in continuous treatment for over 2 and a half years, the regiment changing every 30 to 60 days. She endured about 850 of chemotherapy, 125 IV pokes, 102 doses of morphine, and 125 days in Children’s Hospital. But Ellory is the type of girl who showed up with a smile and stuck out her tongue in her hospital record picture. She was often asked to coach littler kids on how to be brave to get a blood draw and how to swallow pills, and how being the bald girl at school was no big deal. She often had a new joke for her doctors and nurses. If they took care of her once, they would come see her and check on her whenever they saw her name on the schedule. This girl can light up a room…even a room full of cancer patients and their worn out parents. She is a bright and shining star who has a long and positive future ahead of her. Now 10 years old, Ellory has completed her treatment and proves you CAN have joy, no matter what your circumstances.
At age 12 years old our Son Corbin noticed a bump on his head during the last week of May 2008, we thought it was something he developed in Roller Hockey, however while on vacation visiting family, Corbin complained of the bump hurting even worse than before. He also couldn’t remember of ever having an injury.
We took him to a Doctor in Milwaukie, Oregon before his planned 4 week visit with his biological Father in the Portland area.
The Doctor said that it was just a Hematoma and not to worry.
So Corbin went on to his visit with his biological Father.
After a week Corbin had an accident on a homemade mini motorcycle. Corbin was rushed to a local Hospital. The motorcycle’s chain didn’t have a chain guard and pulled Corbin’s jeans and skin into the chain itself after several staples in his leg, while in the ER Corbin complained to the Doctor that the bump on his head was hot. The Doctor said it might be a bone infection and that if it wasn’t better in a week he wanted to get x-rays done. The ER Doctor placed Corbin on antibiotics, unknown to his Biological Father the antibiotics that were prescribed for Corbin was allergic to. He had a horrible allergic reaction to the antibiotics but they did help the bump, it did go down but left an empty hole in his skull, where there was only his scalp and hair protecting his brain.
On 7/2/08 Corbin had an x-ray done that also showed this mass on top of Corbin’s brain that was growing into his forehead. On 7/11/2008 I received a call from his Father informing me that the Doctor said after looking at the x-ray’s he thinks it is a Tumor and or Cancer.
With Corbin being on a visit with his Father it made it difficult to get him home and at his normal Doctors office. On 7/12/08 Corbin came home to Idaho. After reviewing Corbin’s X-rays from an email our Family Doctor said he needs to be seen A.S.A.P in the ER for a CT Scan in Idaho.
Joel was diagnosed just after his first birthday. His tumor recurred ten months after treatment began. He was given just weeks or months to live, but two and a half years later, despite several additional tumor recurrences he is still alive and fighting cancer. His life is a miracle and we are so proud of him. www.joelevangreen.com
From 6/11/2008- my first Carepages post:
On Friday, June 6, we were told Delaney has cancer and have been at Children’s Hospital since. Yesterday we were told that she has a cancer with a short-name of ‘Rhabdo’. There’s approximately 400 – 500 cases in the US each year. ‘They’ don’t know what causes it or anything like that. They started chemo yesterday.
The good news: It’ a curable cancer, she will get through it, it hasn’t spread to major organs, bone marrow or bone. We have great friends and family who are supporting us through this.
The not so good news: She’ll have approx 12 months of chemo – no hair for 1 year. We’ll be in the hospital for another week or 2 as they started chemo today and she needs to stay here until the tumor is reduced enough to allow the pain to be tolerable and her to be mobile.
The overall goal is to reduce the tumor to operate on it, remove all the cancer and cure her. ‘They’ expect that it’ll be about 6 months before they can consider operating on the tumor.
Last posting on 12/9/2008:
Flying with Angels (12/9/2011)
It’s with the heaviest of hearts that I share that Delaney left us this morning at about 11:00 am. She waited until she knew we were ready, and then her spirit hovered until she knew we were protected with friends and family. We miss her beyond words.
I share the words that my dear friend, Mary, shared with me: I just wanted you to know how absolutely breathtaking the full moon rising looks and the sunset is blindingly brilliant. (She’s in Wisconsin, and my Longmont friends said our moon looked the same.) God is most certainly showing off for his newest angel! What a gorgeous first night in heaven awaits your girl!
Daniel is an outgoing and smart 3 year old little boy. In late May of 2011, he started limping, 1 week later his right forearm was swollen. X-rays showed no problems. Daniel then ran a low grade fever over the weekend after seeing and on that Monday his pediatrician sent us to the ER at Children’s Hospital Colorado. Within 24 hours he was diagnosed with Leukemia, and on that Wednesday he had his 1st bone marrow biopsy to confirm the diagnosis and to discover which form of Leukemia; it was ALL. Daniel began treatment immediately and was responding well to treatment and we settled in for the long 3 year treatment for ALL. On day 30 the genetics of his disease came in and we were informed that he has a chromosomal translocation t(17;19) and would need a bone marrow transplant in as soon as 6 months.
Daniel is still going along with treatment and making new friends at clinic and the hospital. He still smiles, plays, and does most things other 3 year olds do; just minus the crowds. Daniel is set to go to transplant in late October and we are hoping this will be the cure he so deserves.
My son was diagnosed on his 7th Birthday but we suspected that something was wrong prior to his diagnostic. We were very lucky that my son had an excellent Dr at Children’s Hospital. Since my son was healthy but for his cancer, we were able to get a port in the next day and the following day he started his chemo. He underwent chemo for 3.5 years and he has been doing extremely well since then. I am so proud of my son, he never complained, just went from one day to the next, endured the treatments, the pokes and so on. This is so amazing. My son enjoys racing remote control cars, flying his remote control airplane, skiing on the weekend, bicycling and swimming during the summer. We are very proud of our son and are very grateful for every day that we get to see his bright smile.
My name is Carter Gates and I am 11 years old. To begin my story I was diagnosed with T cell acute lymphoblastic leukemia on April 30, 2013. It was very scary. My treatment is for 3 1/2 years. I have been through a lot of pain but have never stopped fighting and smiling. There has been lots of suffering. I had radiation to my brain. I have to get poked by a butterfly needle in my chest which sends medicine through my heart. I have gone to the hospital more times than I can count for chemo, brain radiation, lumbar punctures (directly inject chemo into my spinal fluid) and lots of other issues. I have to get chemo treatments for 3 1/2 years. If I get a fever I have to go to the hospital. I live with very awful pain which is caused by nerve damage from the chemo (neuropathy). I only have a few months of treatment left! My outlook on life is I always have a smile on my face no matter what. I have the best attitude and I like to say “attitude is everything.”
The Miracle Party is really amazing. It is a night where I can have lots of fun and feel like a normal kid. Thank you Miracle Party Foundation for giving me a night to remember forever. You are making a difference in my life.
Kennedy – 9 Years
9 years ago, Kennedy was 2 years old. She had been sick for a couple months, but no one really knew what was going on with her. A virus, perhaps. Maybe an infection… Causing her to be tired. Causing her hands to cramp enough that she would cry out in pain. Finally, causing her pediatrician to send us to the oncology clinic at Vanderbilt Children’s Hospital “just to be safe”. But everything was “probably fine”.
9 years ago, I was sitting at my desk, typing on my computer, IMing with a friend, when my phone rang. I saw a Vanderbilt number and took a deep breath as I answered. My heart sank as I tried to comprehend what the doctor was saying… “Cancer… requires chemotherapy… immediate admission… no time to waste.” The rest was pretty much a fog. I remember choking back the tears and trying to swallow the lump in my throat as I asked, “Is she going to lose her hair?”
Leukemia. My two year old daughter had leukemia. How was that even possible? April 16th was on a Monday that year and they wanted us to check in on Wednesday to start chemo. “No,” I said, “I can’t. I have an OB appointment. I’m 8 months pregnant. I have 2 other kids. I need to figure out what we’re going to do with them. Time. I need more time.” They agreed to Friday morning, when they would surgically implant a central medicine line, a Hickman line, or “tubies” as we came to call them, into Kennedy’s chest. Chemotherapy would begin that night.
I picked Kennedy up off the floor and got in the car and drove. I wasn’t really sure where we were going, but somehow we ended up at my older daughter’s elementary school. I wandered in and told my friend who worked in the office that I needed to check Kassidy out. She asked if I was ok and I shook my head no. “Kennedy has Leukemia,” I heard myself say. And the first tear slipped down my cheek. And I just stared. I’m pretty sure she told me to sit down. She may have even taken Kennedy out of my arms. She told me I didn’t need to get Kassidy, but I had to do something. I needed something to make sense. Two year olds don’t get cancer. Right?? I mean… RIGHT??? Wrong.
And cancer took over our lives.
9 years ago we learned about platelets, about transfusions, about neutrophils. We learned what it meant when a doctor told a family to go home. There was nothing more to be done. Their son was 2. A funeral. And another. And another. And too many more to count. Too many tears. Too many tiny little lives gone. Families who will grieve forever. And those of us left? We hug our children tighter. We thank God they’re still here and at the same time we feel guilty. Why are our kids here? Why are theirs not? How can two children have the same cancer, be on the same chemo, have the same chances of survival, but a few months later one of those children is gone? We don’t understand. We may never understand.
9 years. And for so, so many the fight goes on. I am thankful Kennedy’s fight is over. I am thankful she is here. I am thankful we only go into “that” clinic once a year now. I am thankful for the many, many, many lifelong friends we have made in the last 9 years. But cancer sucks. I hate it. I hate everything about it. I hate that it makes me worry every time any of my children get sick. I hate that I think about platelets when they fall and scrape their knees. I hate that the word “relapse” forever hovers in the back corner of my mind. I hate the fact that I know that 46 new children are diagnosed with cancer every day. Because that means I have to give credit to cancer… whether it be good or bad; and I hate it.
9 years. I’m so proud of this kid. So thankful for her life. So proud of all she has accomplished and will accomplish in the future.
9 years. You’ve come a long way, baby!
And we have so enjoyed attending the Miracle Party. There’s the gold carpet walk, the music and lights and my family and friends. Thank you Miracle Party volunteers for all you do for us.
Cynthia was diagnosed with ALL on March 3, 2009after what was thought was tonsilitis. She had intense chemotherapy every week for 9 months. Then every month for nearly two more years. She is is remission and is an inspiration to all who have met her, and to some who haven’t. Throughout her journey, Cynthia was always smiling, and that is one reason she is known as “The Magic Child”.
I was diagnosed when I was 11 months old. I had surgical resection done but had a post – op bleed into my midbrain which caused me to have a left-sided hemiparesis. I continued to have seizures so they did another MRI which showed that it had metastasized into my brain and spinal cord. They did low dose chemo which failed to stop the growth so they decided to do high dose chemo with my own stem cells transplant. This not only stopped the growth but got rid of the tumor completely. This was definitely a miracle because they only gave me a 10 percent change of living. I have the left-sided hemiparesis and a hearing loss but I am alive and doing well at age 16!
Sesly was in foster care when she was 2 years old. Her childhood was complicated with domestic violence and poor conditions. While in her foster home at age 3 she was diagnosed with leukemia. Her foster family took care of her through her hospitalizations and her treatments. It was a long road to recovery. She not only gained a new forever family but also remission from leukemia. Today she is a bright and a beautiful lady. New to Colorado, Sesly is thankful for all her new friends and people she meets. She enjoys hiking, swimming, art and crafts and the outdoors. We all love her very much!
Mallory was diagnosed on Sept 13, 2006 with Acute Lymphocytic Leukemia at age 11, just 2 weeks into her 6th grade year. She slipped in science class and immediatly was bruised all along her thigh and running and low grade fever that continued for days. After a course of antibiotics and no changes, we did some blood work and were sent to TCH for further testing , after the results came back we heard the words no parent ever thinks they’ll hear…”Your Child has Cancer”… the Battle of her lifetime began. She completed 30 months of Chemotherapy, which consisted of 10months of weekly IV chemo and monthly spinal taps with a side of chemo injected and 20 months of daily oral and monthly IV chemo and high dose steroids. She completed therapy on Jan 18, 2009 just in time to start High School. Mallory is REMISSION and will be 17 years old in November and is a Junior at Eaglecrest HS.
2017 update: Mallory Graduated in May from The University of Colorado, Boulder with Honors, Magna Cum Laude, her degree is in Art History with a minor in Religious Studies. She will be attending University of Leicester in the UK starting in Sept 2017 to complete her masters in Museum Studies and pursue her dream of becoming an art museum curator.
Natalie was a very active 14 year old girl that played 15-20 hours of softball a week when she complained of a sore thoat. We took her to the doctor and after some blood work found out that she had Acute Lymphoblastic Leukemia. Our world calapsed before our eyes. After a very grueling two and a half years, just this July 26th, 2011 we got the most wonderful two words a parent could ever want…..”ALL CLEAR”. Natalie had her last bone marrow and spinal tap that day and we waited and waited for the news. When the nurse called to tell us everything was clear we were obviously overjoyed. We had prayed deligently for 2 1/2 years for God to heal our daughter and HE did!!! Look out world ~ here comes Natalie Paige Erwin!
Serenity was diagnosed with AML M7 at the end of August of 2012, she was 20 months old. She was covered in bruises, had petechia around her eyes and seemed like she was coming down with a virus. Our pediatrician ordered labs, and called us that night and told us that we were to go to Children’s Hospital ER and repeat the labs. He told us that they suspected she had leukemia. We got to the ER at around 10pm and were met by one of the Oncology fellows who told us that they were sure she had leukemia. A bone marrow aspiration and lumbar puncture showed that she had AML. She completed her 6 rounds of chemotherapy(mostly inpatient), complete with blood infections, Cdiff infections, pneumonia, 2 line replacements, 4 line repairs and 1 trip to the PICU. She achieved remission after her first round of chemo and went off treatment in March 2013.
Serenity was a new Miracle Child for MP 2013. She lost her battle on 5/2/14
Kallie was diagnosed with ALL in January of 2007, just one month shy of her 11th birthday. Her case was unusual in that her cancer appeared as a small lump under the skin inbetween her eyebrows. Before Christmas of 2006 she underwent plastic surgery to remove the lump and it was sent for pathology. Because this type of presentation is so rare it took three weeks to get presumptive results back and then it was thought to be a lymphoma, only after her bone marrow biopsy was it determined to be ALL.
Kallie underwent treatment at Children’s Hospital including spending time as in inpatient due to fevers and once for a surprise appendectomy. Throughout her treatment Kallie handled everything with a strong sense of grace. Her hair-loss simply gave her an excuse to expand the wig and hat portions of her wardrobe.
Kallie completed treatment in 2009 and has been sailing through all of her check-ups event-free. She is now a happy 15 year old entering a time in her life her parents are even more scared of….driving.
Kallie is enjoying high-school but looking forward to getting out on her own and enjoying college where she plans to major in film and creative arts. Kallie’s favorite part of the miracle party is walking the gold carpet which she sees as a dress rehersal for her future life when she plans to be walking a red carpet on her way to win awards for directing.
Kyra was diagnosed in October of 2008 after three days of (what we thought) were flu symptoms. After a CT scan, the tumor was found in her brain and, after further testing, cancer cells were found lining her spinal cord as well. Kyra was five years old…
Kyra has undergone three brain surgeries to determine the type of cancer she has as well as a year of chemotherapy. Unfortunately the doctors are still unable to determine the type. However, Kyra has frequent MRI’s and her latest scan shows almost no sign of the tumor!
Jadeyn was always getting sick as a baby. One day i took her in to the ER and told them im not taking her home until you can tell me why this is happening to her. 2 hrs later they came in the room to tell me that my baby girl had liver cancer. This changed our lives in so many ways. But God sent us a angel. One yr later my baby got a transplant. To this day the only thing that lets us know that this happened to us is her scars. Thank you for reading this. God bless all our kids. Lisa Adams
We moved to Colorado in June of 2007. In the following months Gaia’s health deteriorated rapidly until we ended up in Children’s Hospital in September where she was diagnosed with Acute Lymphoblastic Leukemia (ALL). Being new to Colorado, Gaia really didn’t have a chance to make friends at school as she only attended for a week and a half. It was a rough time battling the disease, the side effects of the chemo that landed her back in the hospital two more times, being home schooled and then having to get to know all the new faces, while losing her hair twice, wearing wigs and trying to have the strength to go from class to class. We lost both of her grandparents during that first year of treatments. Gaia managed to keep up with her classmates graduating on time in 2010. She went on to attend the Community College of Aurora and presently has a full time position at Wholefoods Market. Gaia wants to become an elementary school teacher, and plans to use her experience with cancer to encourage others to be strong and persevere against the odds. Gaia still has check ups at Children’s Hospital on a regular basis but each month puts her further away from her diagnosis date of September 20, 2007.