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The Wilson Family

1.  When was Mason diagnosed with cancer?

Mason was in his senior year of high school(class of 2017) when he had an ominous bone tumor growing in his right tibia. Unfortunately, no one realized what was happening & he did not get officially diagnosed until the month after graduation.

2.  What type of cancer diagnosis was he given?

Mason was officially diagnosed with osteosarcoma(bone cancer) & had a very large, painful & aggressive tumor. We had never heard of this horrible disease & later learned it primarily affects growing adolescents & the teen population. It’s incredibly rare with only a 5 in 1 million chance of occurrence for 20 year & under US population.

3.  How did his treatment progress?

Our son fought so bravely to survive & overcome his cancer. He endured grueling MAP chemotherapy(did not finish due to lack of chemotherapy response & progression) which his tumor showed poor necrosis for. It’s a horrific, outdated & unrefined protocol that only works for limited patients. If MAP fails, secondary treatments are salvage chemotherapies or clinical trials. There is no roadmap after the 30-40 year old MAP protocol which is extremely frightening for patients & families.

4.  What did receiving that devastating news feel like for your family?

Our entire family of 7 was in the hospital room when doctors first told Mason & us they feared he had cancer in his leg. It felt like a nuclear bomb exploded & transported us into the unknown realm of pediatric cancer. Complete disbelief & utter devastation surrounded us.
Mere minutes after hearing this life changing & unwelcome news, our brave & unconditionally loving first born son told me he was glad it was a him & not us the parents or his little brothers or sisters. In that unforgettable moment, my son’s soul & character was fully revealed. His love, his loyalty & his determination. I will never, ever forget what he said to me as long as I live.

5. What were some of the things that helped you get through the initial months of diagnosis and treatment?

Our far away wolfpack & our local communities lifted our family up with love & care. Auctions, meal trains, emotional, financial & loving support surrounded our family & most of all towards Mason who as battling for his life! Mason & our family truly lived one day, one moment at a time through his journey. We were with him each inpatient stay. All of us, some of us. He never spent a hospital night alone. The bonds we have for each other only strengthened in this time. We were intentional with each other & those times together will not ever be lost or wasted. My son taught us to make the most of each & every day given. We struggle to carry on each day to live our best lives in honor of our fallen family member who no longer can.

6.  What were some of your child’s favorite things to do, heroes, sources of comfort & joy?

Mason loved his family most of all. He endured the most stressful & painful surgeries & treatments with a positive & never give up attitude. He displayed a wisdom beyond his years & never once lashed out or showed bitterness for his unfair plight. Being home with us was his goal throughout his battle. The simple comfort of all of us together under one roof is a memory to cherish for a lifetime. That was everything to him & to us. To be one less forever is a daily agony.

He loved music, video games, his pets(Klee Kai dog Magic/sphynx cat Ezra), cars, eating good food, friends, family, experiencing mini getaways when breaks in treatment allowed.
Our son never got to ring the bell of completed treatment & was never NED(no evidence of disease). His surgeries & treatments were in efforts to slow or stall progression of his cancer. To our devastation, osteosarcoma was unrelenting & brutal.

7.  How did you find out about Rett’s Roost?

My osteosarcoma friend added me to a Facebook bereavement group for parents who have lost a child to cancer. There I read in comments about Rett’s Roost & started researching support for our bereaved family. So very grateful to have learned about sweet Everett’s legacy & his amazing & kind family.

8. What is your favorite memory or most positive outcome of attending a Rent’s Roost retreat?

We came away from our Rett’s Roost Retreat with renewed hope, love & purpose. To have met in person other families & siblings experiencing this most unimaginable loss has been a light in the darkest times of our lives. Very blessed to have attended & met such inspiring people we now call friends.

9.  What is the one thing you wish you could tell everyone about childhood cancer?

I wish I could tell each & every human being that childhood cancer can affect any baby, child, teen, or person at ANY time for ANY reason. There is no one immune from the possibility. Recognize life is full of unknowns & each day is a lucky gift to be appreciated & fully lived. Without fear, without recklessness! Fully & intentionally felt with open hearts. Our children have journeyed beyond us for now, but we will reunite. Love & the bonds we share do not die. It lives forever & the memories created will sustain us.

The Mandley Family

On June 20th, 2016, Lyndsey and Chris Mandley learned that their precious son, Carter, was diagnosed with cancer at just 9 innocent months old. Carter, who loved his firefly binky, special panda bear and watching Jake and the Neverland Pirates, was the brightest light in their world. The Mandley family were crushed to learn that Carter had Extra-renal Metastatic Rhabdoid tumors (ER-MRT), a diagnosis that bears an extremely low rate of survival. As if this news was not overwhelming enough, this type of cancer can be genetic and there was immediate fear that Mason and Everett, Carter’s elder siblings, might have to face the same devastating diagnosis as Carter.

Despite the odds being stacked against them, this courageous family took on the fight together against the cancer. After the first round of Carter’s chemotherapy regimen was completed, there was a moment of hope when they learned that the tumor in his abdomen had shrunk in half and his lungs that were previously cancer ridden, had cleared. However, tragic news soon followed that the cancer had spread to Carter’s brain. The prognosis for Carter became ominous, and yet, Lyndsey and Chris never lost faith. Morning, noon, and night they prayed for a miracle, begging God to save Carter. In between prayers, the entire family spent time with one another laughing, snuggling, and watching shows while Carter’s health quickly declined. Their precious Carter passed away on October 13, 2016 – just one month after his 1stbirthday.

Lyndsey and Chris want the world to know that childhood cancer is affecting countless numbers of families around the world. Since Carter’s diagnosis at nine months old, there have been significant amounts of children being diagnosed at alarming rates. Lyndsey pleads for more funding, more research, and an end to the trauma of childhood cancer. She has started The Buttercup Foundation in Carter’s honor to help childhood cancer families in need.

The Ross Family

What was your experience with cancer like?

Our experience with cancer was very brief. On January 4, 2017, after a usual afternoon nap, Kennedy just wasn’t her usual self. After a few alarming signs that evening, I took her to our local ER where we were later airlifted to Boston after finding a large mass in her brain. Kennedy underwent brain surgery the next morning, half of her head shaved, where long, curly raven black curls once bounced. Kennedy suffered a stroke during surgery and never regained consciousness. On January 18, 2017, we found out we were expecting a baby boy in May, and just a few hours later, Kennedy was diagnosed with an embryonal tumor with multilayered rosettes (etmr). Kennedy Sutton Ross died the next day, January 19, 2017, at 2.5 years old

How does your family remember your child?

From the day that Kennedy underwent brain surgery, her symbol became a sunflower. The sunflower symbol became bigger than ourselves. It’s comforting to know that others think of our daughter when they see sunflowers. We talk about Kennedy and mention her name daily. Sharing her life story and adventures to the world to illustrate how truly delicate life is has helped tremendously.

How has Retts Roost helped you in your journey through grief?

Rett’s Roost has opened the door to a lifelong community of supports. Fellow families that have been through the unimaginable who empathize with your pain when your words don’t exist.  They have done an amazing job in their own keeping Kennedy’s name alive. Healing is a journey that will last a lifetime, just like the connections and friendships I’ve made through such a caring organization.

The Kucelin Family

Bianka Kucelin will always be a shining light to all who have known her, beloved by family, friends and her whole community. She touched us all with her grace, joy, spunk, beauty and spirit. She loved to dance, play with her sister and friends, sing, go to shows, concerts, and plays, and to laugh. She was always kind, happy, and brave.

Bianka was diagnosed at age 4 with a malignant brain cancer called supratentorial neuroectodermal brain tumor or sPNET mid February 2014. She completed six months of high dose chemo treatment with stem cell transplant and enjoyed several cancer-free months with family and friends, but in May 2015 an MRI revealed the tumor had returned. Bianka started radiation treatment of June 9th, 2015 but the same day had a tumor bleed into her brain and was sent home on hospice. Bianka really wanted to go to Disney, on this Earth, how she said, and her desire for her dream to come true kept her alive and she recovered from the bleed by fully absorbing the blood in her brain in less than two weeks. We decided that we wanted to take Bianka to Disney World instead of continuing radiation and are so happy that her dream indeed came true.

Bianka spent her last few weeks surrounded by loved ones, meeting princesses, going on motorcycle rides, and feeling the beachy sand between her toes. She died peacefully at home with her family on July 29, 2015. Her incredible spirit has forever transformed all around her.

Bianka’s tumor tissue was donated for research to two organizations and research teams: Dr. Anna Janss’s team at Children’s Healthcare of Atlanta who was Bianka’s wonderful oncologist and Dr. Annie Huang’s team at the Hospital for Sick Children in Toronto. Hopefully Bianka’s tumor will bring some research discoveries and new therapies for this very malignant, rare, and deadly tumor.

Ana Kucelin (mother)
Klaudio Kucelin (father)
Kalie Bella Kucelin (4) sister
Bianka Kucelin 10/21/2009-7/29/2015

The Mortimer Family

Brady was born on June 23, 2009 in Manhattan, Kansas at Mercy Regional Hospital. A healthy and happy 7lbs. 8oz. baby boy. At 2 1/2 years old, Brady started complaining of headaches and eye pain followed by vomiting almost everyday. Katy, Bradys mom, took him to his primary care physician and she said it was just a virus. Time went on and his symptoms worsened. Bradys family was anxious and needed answers so, they were VERY persistent and demanded a CT scan. The news was horrific, they found a massive tumor in his brain.

That same day Brady and his mom were in an ambulance on the way to Children’s Mercy Hospital in Kansas City. Two days later, Brady underwent a very dangerous 8 hour long brain surgery where 98% of the tumor was removed. Brady had an amazing recovery with no long term effects, delays or complications. The next day the biopsy report came back, it was AT/RT cancer, one of the harder forms to treat. The family was so emotionally heartbroken, shocked, confused, filled with so many questions and decisions with Bradys treatment.

With Brady having a less than 20% chance of survival, the family contacted St. Jude Children’s Research Hospital in Memphis, TN and were quickly accepted. Shortly after arriving at St. Jude, an MRI was done of Brady’s brain and spine. Sadly, six tumors had grown, two of which were on his spine. Brady underwent two rounds of regular chemotherapy. Another MRI that followed found that two of the six tumors had grown. A different treatment of chemotherapy did nothing to stop the cancer. Brady was welcomed into heaven on August 4, 2012.

Brady’s brother Andrew was only 7, but he held Brady in his arms as he passed away. Andrew is dearly devoted to spreading the word about childhood cancer awareness and he will speak to large groups about his brother. He is an honor student and loves football and plays the piano.

Andrew and his mom, Katy, and dad, Jason, have spent the last three years honoring Brady by raising awareness about childhood cancer. They have created Brady’s Fund and a successful toy drive to bring hope and relief to the kids at St. Judes hospital.

You can help support their travel expenses to Rett’s Roost this summer here:
Cancer Families Fly Free

The Neal Family

We are a family of six. Jason and I (Shawnalee) have been married for 9 years and are the parents of 4 wonderful kids. Jordan (17), Cameron whom would be 15, Jason Jr (7), and Tiara (4). In april of 2010 our lives forever changed. Cameron was diagnosed with Anaplastic Ependymoma. Cameron was such a happy, vibrant and strong kid. There was no way he couldn’t beat brain cancer…. right? Cameron fought for 5 years, fighting through 5 brain surgeries, two 6 week stays for radiation, every chemo known to man, and approved and trial meds. In November 2014 his doctors gave us the worst news any child or parent could ever receive.

There was no more treatment. No other options. They told us our precious baby boy only had 3 to 6 months to live. They was wrong! Our big man fought almost another year. Cameron gained his Angel wings on his baby sister’s 4th birthday (9/14/15). He was comforted in our home by us and his oldest brother Jordan. This day changed our lives forever.

Since Cameron passed we don’t talk to people. It seems like no one understands. We go to work and come straight home to snuggle with our babies. Even our oldest son. He goes to school, lacrosse and work. It feels like we haven’t had any time to process Cameron’s loss. Tiara always has questions though. She greatly misses her Cammy Bear! “Mommy I miss Cammy,” “Why does Cammy have to be dead mom?” “If we go visit him….. will he really be there? I just wanna hug and kiss him mommy!” These are the daily questions of a 4 year old. How do you answer some of these? Jason Jr has completely disconnected. He never talks about Cam at all. If he hears Tiara crying he simply and quietly tells her, “I miss Cammy too sissy.”

This has been so hard for our family! We want to attend this retreat in hopes of meeting people who really understand what we go through as well to gain coping skills.

Thank you for taking your time to get to know our family a little.

Jason & Shawnalee Neal

The Otterman Family

Our little girl Simone was diagnosed at 10.5 months old with infant leukemia. This is a very rare (about 60-70 cases a year) form of leukemia with a poor prognosis. Despite her age and prognosis our little girl was a fighter. She handled hospitalization, chemotherapy and procedures like a champ and always had a smile on her face. She could always be counted on to bring a smile to every nurse, doctor and patient on our oncology floor.

At 26 months old, after almost 16 months of fighting, she  passed away suddenly and unexpectedly. Our little girl did not die from her cancer, she was cancer free when she passed. She actually died from complications and infection that are side effects of cancer.

We, as a family are struggling horribly now. We had a very rough 16 months of being separated as a family as one parent stayed inpatient with Simone and the other had to be home for Jade, our 7 year old. It was extremely tough on us all. Especially Jade, who was often not allowed to come onto the oncology floor to visit her little sister.

But now, with Simone passing, we are all just heartbroken, empty and questioning everything we ever believed in. And little Jade doesn’t understand what happened to her little sissy and her best friend.

We desperately hope to be able to attend this retreat to help us heal as a family, bond as a family and find ways to honor and remember our little Simone. She was the strongest, happiest and most inspiring little girl you could ever imagine.

You can help support their travel expenses to Rett’s Roost this summer here:
Cancer Families Fly Free

The Patterson Family

We have always remarked that our family was destined to be.  We met in the Army and through sheer luck, ended up in the same units through a five year tour, including more than two years together in Iraq and Afghanistan together.  After leaving the Army in 2008, we returned to Colorado to raise a family.  Blessed with our son Tristan in 2008 and our daughter Emma in 2010, our “plan” for our family appeared to reach completion with the birth of our third child, Jackson in 2013.

We counted our blessings and Jackson began growing into a happy and feisty baby boy.  Jackson was infamous with our family and friends as the baby who gave you “stink face” if he was unhappy with you. He was the only one in a family of five that had red hair. He was the baby of the family with a big sister and brother who adored him. His sister would hug and kiss him constantly throughout the day resulting in a lot of growls of displeasure from Jackson. “Never without my permission!”, we imagined him trying to say.  We used to joke that Jackson had an “old soul”.  He seemed to have a comprehension of the world around him far in excess of his young age.  Life was good.

In November 2014,when he was 11 months old,  we took Jackson to his pediatrician over concerns that his once cute “buddah belly” appeared to be growing even larger.  Jackson showed no outward signs of sickness. None. The day after we took Jackson to the Doctor, an abdominal ultrasound was performed.  Within 20 minutes, our doctor called and told us, “I’m sorry, Jackson has a tumor”.  Those words set into motion a whirlwind chain of events that would change our lives forever.

That day, we were sent to Children’s Hospital Colorado, where we met with the amazing staff in the Center for Cancer and Blood Disorders.  Jackson was admitted that afternoon so we could begin the work of identifying what we were up against.  We both stayed in the Hospital for that first week.  Jackson underwent scans, a biopsy and central line placement.  The scans showed that Jackson’s large primary liver tumor had already started to metastasized to his lungs.  Ultimately we were give then diagnosis of Malignant Rhabdoid tumor of the liver with pulmonary metastasis.  Jackson’s amazing doctor, Dr. Brian Greffe, didn’t pull any punches when delivering the news, telling us Jackson had “maybe a 10% chance” of beating the disease.  We were also advised that because of the low probability of survival, we could also choose to not pursue treatment.  We took a few minutes, allowed ourselves to process the news and then then told the doctor we would take any option that gave Jackson a fighting chance.

Jackson started one of the most intense chemotherapy regimens in pediatric medicine. One week in the hospital, two weeks out was the standard drill.  Our lives revolved around constant lab draws, platelet counts, and obsessing about Jacksons ANC. His life, our lives, changed suddenly and have never been the same. Life for our entire family was different despite trying to keep routines. Mom stayed with Jackson every time he was in the hospital. Dad had to stay home with Tristan and Emma rather  instead of going to work. In December 2014, after a few cycles of chemotherapy, Jackson had his second PET scan.  We braced ourselves for bad news, as the size of Jackson’s abdomen did not appear to have decreased.  The news was not what we had expected.  Jackson’s primary tumor showed almost no activity on the PET scan and many of the lung nodules appeared to be shrinking.  The treatment appeared to be working.  On February 5th, 2015, Jackson endured a six hour surgery in which the large primary tumor was successfully removed. Our “Jack Jack” appeared to have been given a new lease on life.  We allowed ourselves to believe that our miracle was actually going to happen.  Because of the aggressive nature of this cancer, his course of treatment and the chaos that ruled our lives,  had to continue.

In late Spring 2015, a PET scan revealed a small recurrent lesion on Jackson’s liver. The initial progress on his lung lesions also appeared to have stalled.  A different combination of Chemotherapy drugs was tried, to no avail. While our doctor researched other treatment options, including a possible trial at Saint Judes, we tried to stay optimistic.  Our family entered our local 4th of July parade and “Team Jackson” marched with family and friends to raise awareness of pediatric cancer.  Jackson was in high spirits and seemed to be doing so well. Within 48 hours of leading his team through the parade, Jackson’s health began to deteriorate.  Jackson was admitted to the hospital one last time.  After several days of inconclusive tests, Jackson was sent home, though he now required supplemental oxygen at all times.  At a follow-up clinic visit, Jackson’s doctor told us that because his case was so advanced, Jackson did not qualify for any clinical trials at Saint Judes.  There were no other options to cure our son.  In consultation with his doctor, we brought Jackson home on Hospice care on July 10th, 2015.  We tried to spend every possible second with Jack Jack. We tried to prolong every moment.  On July 23rd, Jackson died at home, with his Father, Mother, brother, sister, aunts and grandparents by his side.

Jackson was the baby in our immediate family; the second grandson on both sides of our families. The first Jackson, the only ginger and our Hero. Throughout a brutal course of treatment that would have brought most adults to their knees, he was such an amaing happy boy.  He was a warrior.

The Light Family

Our story begins in early September 2014. Our 3 year old daughter Alison spent the spring/summer of 2014 battling constipation.  The very regular issue for a 3 year old took a turn for the worse when we were visiting our family in Virginia for Labor Day weekend.  Ali was dealing with quite a bit of pain in her abdomen and bottom area.  By the end of our family visit, however, her stomach had become distended and she was not eating or going to the bathroom.  When we returned home September 2nd we knew that we needed to take her directly to her pediatrician. After another examination, it was recommended we get a “professional” enema.  Before leaving the office, we pointed out some swelling Ali had around her tailbone.  At that point it was quickly recommended that we go to Boston Children’s Hospital Emergency Department for further testing on the chronic constipation. That day, became one of the longest days of our lives. Quickly, doctors in the emergency department found a very large tumor mass in Ali’s  pelvic region.  After two days of tests and scans, Ali was diagnosed with Stage 4 Germ Cell Yolk Sac Tumors. The tumor was not just in her pelvic region, but had spread to her liver, lungs and lymph nodes as well.  We were getting answers to why Alison had such a miserable summer, never feeling “great”.  But the news was devastating.  This was happening to our family.  “Cancer” was happening to us!

After being assigned a full oncology team, we were able to discuss treatment. The good news was that chemotherapy was supposed to be very effective against this type of cancer and the plan was to wipe it out completely.  We got started right away on four, 21 one day cycles of chemo which did prove to be very effective. Every cycle shrunk her tumor and seemed to be working on the rest of the tumor burden in her body as well. Unfortunately, the tumor was so big it would take more than chemotherapy to get rid of it. Ali was next scheduled for surgery to remove  as much of the tumor as possible.  Once again, the 6 hour surgery was successful. Although Ali’s surgeon couldn’t remove every piece of the tumor, he was able to get the majority of it and leave the best of the nerves – She would still walk and have function of her bowel and bladder.  The seemingly successful surgery along with the cycles of chemotherapy allowed the doctors to be confident that the cancer was gone.  She would now be under surveillance, which meant we would have monthly clinic visits to check her tumor marker via labs and then every 3 months we would return for CT Scans and MRI’s.

Of course, we were ecstatic about this news. Unfortunately, it was short-lived. The surgery was done in December and by February her tumor marker showed signs of the tumor increasing in size. We were looking at a relapse. It was confirmed in late February that the tumor was back, and that Ali would need to start treatment again – a stronger more potent chemo.  Our team decided that she would go through four more cycles of chemotherapy. Once that was complete we would need to supplement the chemo treatment with local control, which meant one of three things would have to occur – another surgery, radiation or a stem cell transplant.  The second round of chemo proved to be as effective as the first with her markers constantly going down. The doctors opted not to do any local control, but to keep her tumor marker under close watch – at the first sign of her tumor marker rising they would move fast forward with the stem cell transplant.

I don’t know how to put into words to show how strong, resilient and upbeat Ali was through her entire journey, but her strength gave our whole family strength. I think that she is a changed girl. She went from being in pain for months to almost immediately feeling relief the day the chemo started and the having a huge tumor removed from her body. I think she was just happy to be pain-free and then rolled with the punches after that.  She is 4 now, and a brand new girl.  Ali’s last round of chemo was in May of this year. Her scans have been clean and her tumor marker has stayed in a safe zone since!  Of course, she will have to go through these scans and blood work every month for a long time to come, but we are thankful for every minute that our family gets to spend together. Her doctors were amazing, our community support is beyond belief, and our family has been by our side. We praise God for every moment we have, He walked with us and filled us up every day with the strength to get us here.

The Cavan Family

Healthy pregnancy, healthy birth, and healthy baby—his mama and dada, Deana and Jim, were overjoyed. For the first six months, life felt like it was meant to be. Rett was by no means an easy baby, but he was thriving, aware, and simply beautiful to look at. On October 28th life changed forever as a visit to the pediatrician for what seemed to be a stomach bug turned into every parent and child’s worst nightmare. Cancer, an extremely large solid tumor, was found on his liver. He’d start chemotherapy immediately. Malignant rhabdoid tumors are nothing to scoff at, in fact, they are extremely rare and aggressive and the prognosis is dire.

Rett and his mom and dad spent most of the next 4 months living at Boston Children’s Hospital. After two cycles of the strongest chemo they can give a child, the doctors felt ready to try removing the liver tumor, although it would not be easy because of its size. What was most baffling however was that while the chemo succeeded in killing 99% of the cancer in that primary tumor, it did nothing to stop rogue cancer cells that were suddenly found invading his lungs. This new metastatic disease slashed the probability of recovery in half.

Against the odds, Rett’s little liver regenerated and started functioning well enough for more chemo three long weeks after surgery. But during this time, his lungs filled with more cancer. After just one more unsuccessful cycle of chemo, the doctors in Boston could do no more. A three-day trip to St. Jude’s Children’s Hospital in TN with the hopes of entering a clinical trial proved that there were absolutely no more options, and not much time either. Rett got to experience one last adventure on his med-flight home complete with door to door ambulance rides (one of his favorite toys was his wind-up ambulance).

Three days later at home on February 22nd, after his closest family members all got to say goodbye, Everett crossed over to the spirit world during a magnificent sunset. The number 222 (the date he passed) is shown to those who are awakening to the presence and guidance from the angelic realm. Its vibration creates inspiration, big ideas, and the persistence needed to manifest dreams into reality. Gratefully, he left his parents feeling not just heartbroken, but also selfless, motivated, and bountiful—carriers of his benevolent torch in the form of Rett’s Roost.

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