The Beginning of a Princess’ Story
Chandra is an 11 year old loving, caring, happy little angel. She has a 18 year old brother (Zach) a 16 year old sister (Jade) and a 23 year old step-sister (Jen). Her health issues started right after she was born. She was flown from Sterling, CO to Denver for Neurological issues and seizures. At the age of one, Chandra was diagnosed with Hypertrophic Cardiomyopathy (an enlarged heart). She was on medication after medication. She constantly was sick with pneumonia and bronchitis as well as chronic ear infections that led to her needing several sets of tubes being put in. She had her tonsils and her adenoids removed as well as her lingual tonsils. We were going to Denver several times a month.
Just a short time later we were referred to genetics where we then found out Chandra has Noonan Syndrome (https://en.m.wikipedia.org/wiki/Noonan_syndrome).
She fought like a ROCKSTAR for 6 years but her heart would not last. We were then put on the transplant list at Children’s Hospital in Aurora, CO. One of the requirements to be on this list was that you had to live within an hour of the hospital. We lived over 2 hours away in Sterling, CO. So, Chandra and myself had to leave my husband and my 2 other children to live at Brent’s Place near the hospital. They would come up on weekends to visit. We lived here for 6 months until flu season was outrageous and we then had to move to the Ronald McDonald House. We stayed here for another 6 months and then decided to rent a house so the kids had a place to run around and play as well as have their own rooms.
A month after we moved in (April 4, 2011 also her brothers birthday) we got “the call”. “We have a heart, get here as soon as you can !” I called my husband in Sterling. He got the kids to a sitter and he headed up here.
All went well with the transplant but other problems would pop up along the way. She was diagnosed with a Blood disorder (Von Wellebrand disease https://en.m.wikipedia.org/wiki/Von_Willebrand_disease), sleep apnea, hearing loss (so she wears hearing aids), warts on her face and body, excessive gum tissue (so she will need to have some removed eventually), decayed teeth due to medicines, allergies, cysts on her toe and now Cancer!
Chandra had started complaining of thigh pain on a Monday, and being parents of 3 children, we thought it would eventually go away. By Wednesday it was still there and intensified so I made a Dr’s appointment. They took xrays and we went home. On Wednesday night the doc called and said to take her in for a MRI Thursday because it looks like she has a fracture in her femur. Thursday morning Chandra woke up with a bump on her forehead, it just appeared over night! It turned out to be a tumor. After the MRI, we left the hospital and Chandra was hurting so bad, we went straight to the ER. After about 3 hrs of waiting, they wanted more tests done. She got admitted to the hospital and after a couple days, we were told she has PTLD (post transplant lympho disease).
Chandra has survived and has handled all this like a champ! She fishes, swims, walks her dog, plays with family and friends and just has a good time, when she is not to sick.
When she grows up she wants to be a Vet or a Teacher. She loves, and I mean LOVES her dog Chewy!
She has been so strong through everything and adapts to anything that comes her way.
She is a “Fighting Angel” even though her battle is not over.
Although she courageously continues to battle all her medical issues , she will require medical attention the rest of her life.
– See more at: https://www.miracleparty.org/chandra-barnes/#sthash.DpDiUbN4.dpuf
June of 2014 our youngest (at the time) walked into our room complaining of a headache and collapsed. When we rushed him to the emergency room the doctors diagnosed him with an inoperable brain tumor. The doctor said he wouldn’t make it past a week. Luckily a second opinion saved his life and another surgeon was able to completely remove Logan’s tumor. His journey to recovery has been tough but he’s amazing and has taken in every challenge given to him.
Please watch our sons MIRACULOUS story here… https://youtu.be/wgAik6bVUHU
Ari was diagnosed with Ependymoma at age 3. Once diagnosed, he was immediately scheduled for a craniotomy. He went through radiation treatment after recovering from the surgery. He’s now been in remission for almost 6 years! Ari is a wonderful, kind and caring child that teaches us lessons on courage, strength and genuine goodness each and every day. We love our Ari more than words can express!!
Ethan was diagnosed with Burkitts Lymphoma October 6th 2014. Ethan started out mid August with some stomach aches. Just starting 1st grade, we thought it was just a bug from school. A few weeks went by and the pain continued to worsen, he was sleeping a lot, didn’t want to go outside and play and his eating decreased a whole ton, if you know Ethan, he eats all the time so that was a huge red flag. One night the pain was so bad and he was screaming in his sleep so we took him to our local Children’s Hospital that is only about 20 minutes from us. They gave him Tylenol, took an x-ray and said it was constipation. We knew better as he is a regular kid but they said with 100% certainty that is what it was. After being on Mirilax for a week and the pain getting worse instead of better, we went to our family Dr. He gave us a referral to a GI. He did do one blood test to make sure it wasn’t an issue with Gluten but tested nothing else. We, called the GI to make an appointment and he couldn’t get us in for 4 weeks! A few nights after that Ethan found blood in his stool, started throwing up and was screaming in pain so we came out to the main Children’s Hospital in Aurora. Ethan’s oxygen fell very quick and seeing all the doctors rush in our room was very scary and made it real that there was really something wrong. They ordered blood work, XRay, Cat Scan, etc and did an overall exam. They found a lump just below Ethan’s pants line that was a cause to rush the tests and they quickly found the mass. Within a few hours we knew that life was changing and that Ethan had cancer. Over the next few days it was a lot of testing, tumor biopsy, spinal taps, bone marrow biopsy, and plenty of exams. Finally it was determined that Ethan had Burkitts Lymphoma Cancer in his abdomen. This is a very rare cancer and pretty scary. Good news was the cancer had not spread to his bone marrow or his spinal fluid, bad news was that this 4 inch tumor had grown in 24 hours to consume his whole torso, it wrapped around all of his organs, up and around his lungs and growing still very quickly. They diagnosed him as stage 3 and started chemo immediately.
Now Ethan has been in remission for a little over a year and is a happy 8 year old boy. He still deals with a very low immune system and gets sick all the time, has become allergic to so much and he has a lot of joint pains but these are all small things and can all be dealt with. We are just happy he is alive and here with us today.
Lilianna and her twin brother, James, was born on the Big Island of Hawaii. At two weeks old, Lilianna was diagnosed with an abdominal teratoma. She had surgery to remove the tumor but was too weak to undergo chemo. After a few months of no issues, the tumor started to grow again. Our family moved back to Colorado to start chemo and ended up having six rounds of therapy which lasted six months. She also had surgery to remove the tumor again but had some complications after the surgery. She needed another emergency surgery too because her intestines became obstructed after the previous surgery. Eventually she got stronger and ended up making a full recovery. By 8 months old she was officially done with treatment. She is now 9 years old and doesn’t even remember any of her treatment. She is a very active 4th grader and has had no issues from her cancer other than some slight hearing loss due to the chemotherapy.
Our son, Brandon, is an LCH hero. We noticed skin lesions when he was 2 weeks old and our pediatrician told us it was cradle cap. Within a few days it was all over his body; mainly on his scalp, torso and diaper areas. Our pediatrician then diagnosed him with eczema. We took him to four other doctors (dermatologists and allergists) to no avail, and were basically told I was a nervous mother. I heard of a pediatric dermatologist, Dr. Hansen, at Phoenix Children’s Hospital. There was a six-month waiting list to get in. I called DAILY to see if anyone canceled. We were seen within 2 weeks (during the doctor’s lunchtime, I think the receptionist just wanted me to quit calling!) By this time, Brandon had developed a lytic lesion, a hole in his left temporal lobe. Less than a minute after seeing him, Dr. Hansen diagnosed him with LCH. He told us had we waited the 6 months to be seen, it would have been fatal. We were scheduled to begin chemotherapy in 2 days. It was quite a whirlwind! Scans showed he had 3 lytic lesions and 5 shadows that would fully develop within a few days.
Brandon began treatment at 4 months old. He relapsed twice and completed 3 full treatments. At the time, the protocol was 6 months of treatment initially; that has now changed to a 1 year treatment. Brandon was part of the study that changed the protocol, so please make sure you/your child is part of that study to help the research of LCH/HLH!
Brandon also began to have symptoms of Diabetes Insipidus (DI). Our oncologist wanted to treat the pituitary gland with radiation. We called Dr. McClain, the leading LCH specialist in the nation, for a second opinion. He suggested Cytosar in addition to Vinblastine and steroids. At the time, this was an experimental treatment. Due to the success of Brandon’s results, this treatment is now part of the protocol for LCH involvement in the pituitary.
Brandon completed his last treatment at 33 months old. He is now 10 and LCH-free for 7+ years! He continues to be scanned yearly with physicals and is now part of the Survivor’s Clinic. He is academic, athletic (triathlons, biathlons, county record swimmer, biker, runner, soccer, basketball and football), artistic, loves to cook/bake and is an all around cool kid. He is our blessing!
Peyton started her journey with LCH skin involvement at 4 months old. She has been through two protocols and over 780 days of treatment. She just recently had her last treatment on July 15, 2015. She kicked histio’s butt and continues to be my warrior every day!
Peyton was able to give back to Children’s Hospital for all they have done and with help of family and friends donated 820 coloring books and crayons back to the kids still fighting.
On January 27 a bump appeared on Cheyenne’s neck. We immediately went to see the pediatrician and were sent directly to the ER. We were sent home that day with amoxicillin and told she had an infected thyroglossal duct cyst. By January 30 the bump had grown significantly and Cheyenne was having a hard time breathing. We went back to the ER where they did a CT scan and found a massive life threatening tumor that was obstructing her trachea to smaller than the diameter of a coffee straw. The team at the hospital in Colorado Springs approached us to say they had no way to resuscitate her in case her trachea collapsed and they needed to get her to Children’s Hospital in Denver immediately. They told us they could not transport heliox, the breathing treatment that was keeping her alive on the helicopter, and that we would not be able to travel with her, and they weren’t sure she would actually make it to Denver but they were sending a pediatric surgical team with her just in case. She was admitted directly to the ICU and by the next day we had our diagnosis. Her chemo treatment plan is 2 years.
In 2010 at the age of 5, we took Addison to the pediatrician for what we thought was an ear infection. He looked so sick upon arrival to the Dr that she had us do a blood test. We naively thought his paleness was maybe anemia and we could get him stronger vitamins. Two hours later, the Dr called us saying, “I hate to tell you this over the phone but time is of the essence. Your son has Leukemia”.
By the next morning we had bone marrow aspiration results which showed 98% cancerous marrow and 36% spilled into peripheral blood. Addison’s treatment was 38 months of chemo and 20 spinal taps with chemo replacing spinal fluid. For 4 years his immune system stayed even more compromised than a normal child with leukemia so every illness outbreak was terrifying.
5 years later, Addison is doing great and is now a public speaker for various organizations/fundraisers/tv and has 100 speeches under his belt. He finishes every speech with his mantra that helped get him through, “I do NOT have time for cancer!”
|Julian loved life, his brothers, his imaginary pets especially his frogs!
He liked being called King Julian. He believed the world we live in was Julian’s world.
He got cancer just before he turned 4, he wanted to grow up but only to be 5, so he could go to Kindergarten, which never happened.
He loved everything yellow, especially the sun and his yellow crocs.
He was shy , but had the best smile , a smile with dimples!
He loved his mama, Starbucks coffee and donut-holes.
When we went to Disney World on our make a wish trip, he turned to me and said “See Mama, wishes DO come true…”
He died fighting for his last breath. He was a tough little guy and is missed by thousands of people who had come to know him through Carepages…
Love you ‘lil man, all the way to China!
Madelyn was diagnosed in September 2010 with neuroblastoma. She was 2 years old. During her treatment we found that she wasn’t entirely responding to treatment. We then had to travel to San Francisco for a clinical trial. This treatment put her in a room by herself and we could only take care of her basic needs. That treatment ‘was MIBG therapy. It worked really well. She still had one spot. She did another trial in San Francisco. That medicine Madelyn called yucky medicine. So we traveled between Colorado and Denver for almost a year. That spot just wouldn’t go away. She then did 20 rounds of traditional radiation. The spot was still there. It was then decided to do a second abdominal surgery. Once the spot was pulled out she was finally declared NED in January 2013. To help keep her that way she did compassionate use antibodies with accutane. That was a 6 month treatment. She then did a trial with vorinostat and accutane for 12 months. That trial ended for her in July 2014. She has now been off treatment for 1 year.
Trinity Zamora is now going on her third year of remission this year. Trinity has been doing well with her leukemia. She is going to be in the fourth grade, hard to believe this all began the summer before kindergarten! In her spare time she loves karate and ranks as a blue belt, striving for her black belt. She is in swimming during the summer, and loves playing and having sleepovers with all her friends. Trinity also loves to spend time with her family, which is the most important thing to her. She has one little sister who’s name is Nevaeh and her little sister loves and admires Trinity. Trinity is such an amazing gift from God that we cherish everyday and is an inspiration to all that meets her. We love her and pray every day that we will always have another day to spend together. We love you Trinity and God loves you for you are his little angels here with us.
Sophia is a miracle, after having cancer myself I wasn’t supposed to have children. When I found out I was pregnant the doctors told me not to tell people because the chances of making it past 12 weeks were slim. 12 weeks came and my medical team had no clue what to do. At 18 weeks I started having complications that resulted in full blown bed-rest by 21 weeks. Sophia was induced due to more complications. Her first few months she was sick all the time and by 4 months old she had glasses. Sophia was going to have ear tubes put in at 4 months and at her pre-op physical the doctor noticed that something wasn’t right with her eye and head. We made an appointment for an ultra sound and then that phone call of urgency came that we needed to get to Children’s Hospital and she needed an MRI because the ultra sound found abnormalities on her brain. Sophia had her MRI and we waited at the hospital for someone to review it and come talk t o us. This was when I heard the words arachnoid cyst, first thing I thought of were spiders. We met with so many doctors that our heads would spin and the doctors wanted to wait until she was older to do surgery. 2 weeks went by since we saw the specialist at 3 different hospitals who all told us to wait, I was rushing my daughter to the hospital because in front of our eyes in the matter of hours her head tripled in size. They did another MRI and the cyst had grown so large that they needed to go in right away, until they found out she was exposed to chicken pox at day care and they couldn’t operate. We had to wait another 4 weeks before she could have surgery. Removing the cyst would be too risky so they next best thing they could do was put in a VP shunt. Our 24 hour stay turned into a week stay due to vitals and her just not doing well. When we finally went home I had her back in 5 times in two weeks, I knew something wasn’t right with my baby. Finally a spinal tap showed an i
Reese is a loving,outgoing and bright spirited little girl. She has a heart of gold and can light up a room with her smile. In May 2013 Reese became very sick and was hospitalized on May 20 for dehydration and on Ma 24 she had a seizure which led us to what was really wrong with our then 17 month old little baby. After ct and mri’s we were told devastating news that she had a brain tumor that needed to be removed in the next few hours. It was a very difficult time for our family. We are a family of six and Reese is the youngest. She has two sisters that are 9 Isabel & Brianna and a brother that is 8 and his name is James. Her dad is Jayson and we live in Sioux Falls, SD. She was released from the hospital on June 13 and June 15 we started our trip to Memphis, TN to St. Judes for treatment. Her treatment plan is 4 months of chemo, then a possible brain surgery and then proton radiation, followed by 6 months of chemo. It has been really difficult to be separated from the rest of the family. We miss home but we WILL beat this.
On October 7, 2004, our daughter was diagnosed with a rare, grapefruit-size, inoperable, benign brain tumor. She lost her eyesight, ability to stand, and talk at a doctor’s appointment that we thought would confirm a stomach flu. Our little girl had always been perfect. Who could imagine a brain tumor, much less one that was the size of a grapefruit?! We were told she should have lost those functions permanently, however, the losses were only temporary…long enough to alert medical staff to the crisis. More bad news…she would never be able to create new memory. Because Rachel was inoperable, a non-systemic chemotherapy, never seen or used at Children’s Hospital, became the weapon to destroy the tumor. Three times a week, for the remainder of 2004, our 1st grader went to the hospital to receive treatment. Several months later, Rachel became symptomatic again. MRI confirmed our worst fears, another brain tumor. This one, half the size of a pencil eraser, and once again inoperable, and not treatable non-systemically. Summer 2005 was spent in daily radiation. Today, Rachel is a 16 year old Junior in high school, smart, possesses a 4.6 GPA, strong, athletic, creative, a beautiful young woman. She plans to graduate high school with an International Baccalaureate Diploma and attend college and double major in medicine and art. Oh, and by the way…KNOWLEDGE equals NEW MEMORY
Molly was diagnosed with Alveolar Rhabdomyosarcoma Stage IV on October 7th, 2010 at the age of 21/2 and has been in remission since August 2011 after intensive chemotherapy and radiation treatment. Molly now 7 years old and is in 2nd Grade. She loves dancing, swimming and riding horses. She is a very happy, brave, strong-willed little girl that her whole family feels blessed to be around. She has been a true inspiration to all who know her.
Andrew was only 7 when diagnosed. Thanks to a successful treatment that has allowed him to grow into he teenager he is today. He loves music and fixing up his 54 Chevy. The picture is him doing a burnout in is Grandpas 66 Chevelle. Of course Grandpa is in the passenger seat loving every minute of it.
Miss Sandra Lynn Welfl was born on April 18, 2006 a healthy, happy 7lb, 11 oz girl. On the 4th of July, 2007 Sandra began her journey in battling the unthinkable. Sandra was diagnosed with Primitive Neuroectodermal Tumor or PNET. Sandra lost her battle on March 02, 2008 and became an ANGEL…
Sweet Sandra was told she had water on the brain on July 4, 2007 after complications after her brain surgery, an MRI was taken and a large brain tumor was detected. It was sitting at the back/base of her brain and pushing on her spinal cord. 2/3rds of her tumor was removed on 7/8/07 and her high intense chemotherapy treatments began.
After 5 months of aggressive treatments she was sent home December 6, 2007 with the hopes and dreams that all of the cancer was gone. She was in REMISSION!
God gave Sandra, Gina, David, Dillon and Jared a month and a half of good health but the fairytale was over on Jan. 31, 2008. Sandra’s tumor was back and bigger and more aggressive than ever. Radiation was the only option but it was guaranteed brain damage.
She was given by the medical staff 5-12 weeks to live. Sandra is surrounded by loving family and friends and we believe in the power of prayer. Please follow Sandra’s amazing story, as she is the most beautiful Princess in the World.
We were on top of the world before our lives were changed and shattered after our sweet daughter, Daisy became sick. She was only six years old. She was diagnosed with a cancerous brain tumor in April 2013. We were thrown into a unfamiliar world of medical terminology we did not understand, fear, uncertainty, busy Physicians, Surgeons, noisy machines and a hospital we would eventually call our second home. The road ahead of us seemed very scary. Our lives were forever changed. She had radiation to her entire brain and spine for six weeks and chemotherapy for nearly a year. She finished therapy in March 2014.
Eighteen months later, in September 2015 we were devastated to hear that her cancer had returned and metastasized to her spine during a routine scan. Our future with our beautiful, smart, silly daughter seemed uncertain. She is in treatment again and we cling to every ounce of hope knowing that every day is truly a gift.
Miracle Party is a time for Daisy to get away from treatments and be a little girl. She loves all the activities at the Party and loves attending with her family.
Taylor Christine Vossekuil was diagnosed with High Risk ALL Leukemia B Cell on 3/31/07. She was trying out for her HS Softball Team and had started complaining of terrible leg pain. I took her in for her sports physical and told the doctor of the terrible leg pain Taylor was experiencing .. they said it was probably just from all the soft ball practices she was going to. Throughout this entire time (2 weeks of tryouts/practices) Taylor didn’t miss a day .. she would come home exhausted and sit in the bathtub to help with her aching legs. On 3/31/07 Taylor came to work with me and collapsed while there. I rushed her to the ER and hours later after all kinds of blood work, we were told she had ALL Leukemia and were rushed to Merit Care in Fargo, ND. Taylor’s WBC count when the Leukemia was caught on 3/31/07 was over 180,000. We were told at Merit Care that Taylor had a 85% chance of beating her cancer. This was not the case as Taylor’s cancer never went into Remission and went at her with a vengeance. Taylor suffered from a Stroke from all the chemo in May 2007 and never fully recovered from that. She never spoke again normally, walked again normally, or had the use of her hands as she had before the stroke. She regressed and started having temper tantrums, it was frustrating for her because she didn’t understand what was going on with her. She used a wheelchair regularly after her stroke. Even though all these physical things changed for Taylor .. her Faith only got stronger. Taylor never quit believing, hoping and praying that she would beat her cancer. Taylor found something good in every day – no matter how terribly the day was for her. Taylor started collecting stuffed Frogs after she was diagnosed with Leukemia. She told me Frog to her meant “not to Fully Rely on God” but to “Forever Rely on God.” She told me the reason being was this: “When I die Mom, you are going to have to Forever Rely on God, Because there’s just no other way.” Taylor would say to me every
Genevieve was diagnosed with stage 4S Neuroblastoma at 6 months old. She had a malignant tumor off the adrenal gland and cancer in her liver. Chemotherapy began immediately and followed for the first year of her life. She was in remission for several years before being declared a cured patient in 2013. We now honor her journey and her battle with the release of gold balloons every year on her birthday. We like to go on 5K walks and raise funds whenever we can. This little six month old baby girl who learned how to crawl, walk in the cancer clinic, attached to her broviac line has blossomed into a beautiful little lady. She enjoys reading, drawing, and music! Her heart for others and for her family is so pure and a gift from God. She loves hard and prays deep. We love you Vivi! Keep singing a new song baby!