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The Dougherty Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

Odin was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) on October 3, 2013 when he was two and a half years old. We noticed he was stumbling a bit, his right eye was crossing a little inward, and he was having a few more emotional outbursts than normal. However, his little sister had just been born not even six weeks prior, and we thought he was reacting to new changes. We went to the doctor, who sent us for an MRI the next day. It was then they told us there was nothing we could do, except maybe look for a clinical trial that would give us time to “come to terms” with his inevitable death.

How did their treatment progress? If you can, tell us a bit about their final days and end of life. 

We were accepted into a clinical trial through Duke Children’s Hospital and Odin started a typical round of radiation on Halloween. He finished with radiation and an experimental drug shortly before Christmas, and went on his Make A Wish trip to magical Disney. We went on a giant character hunt and let Odin be a little boy for awhile. After the holidays, he was on a few rounds of chemotherapy, but when his symptoms shifted in March, we discontinued the trial, as the chemo seemed to be doing more harm than good. We were told it could possibly be progression, and would know it when we saw it. Odin had weakness on the right side of his body and sixth-nerve palsy of his right eye. Other than anti-anxiety medication and some natural supplements, he was able to come off of other medicines, and was signed up for in-home hospice services. We spent the summer visiting family and taking Odin on adventures to the beach and the mountains. When fall came he was still stable, so Mom returned to work and we tried to settle into a routine. For the most part, Odin was Odin after diagnosis. Still very loving. However, while he was on steroids, he got so extremely angry. Even without steroids, there was a period of time after treatment where he got extremely anxious. He’d throw these huge tantrums where we’d have to hold him down so he didn’t hurt himself. Anti-anxiety meds helped a huge deal after that. He developed a fear of fire, even becoming concerned when cartoon characters faced it. We imagine it was either something he saw in his brain or experienced through radiation, but we’ll never know.

In March of 2015, we started seeing some small changes in mobility but we didn’t have any other viable treatment options for him. It wasn’t until April 11th that we saw definite signs of progression, and over the course of the weekend he lost the ability to walk. He passed away on April 29th, a month before his 4th birthday, and 18 months post-diagnosis. We were told for DIPG this was a significant amount of time. 

What did this devastating tragedy feel like for your family? What was early grief like?

Having a child is carrying a piece of your heart outside of your body. Losing a child is having to carry that empty space with you for always. It is a wound that never heals. Early grief was numbing and raw at the same time. We really struggled, especially for the first two years. The first year was a lot of shock, second year a lot of coping and searching. We tried counseling, retreats, medication. It’s also very lonely because even those with the best of intentions start to peel away outside of crisis mode. 

What helps you in your grief now? 

Bereavement retreats on a yearly basis have been essential. It’s one time when it’s absolutely OK to talk about our son where no one judges us or acts like  we should have “moved on” already. We’ve tried some self-wellness. Dad meditates, Mom does reiki. Mom tries to do some DIPG research fundraising. We both try to have meaningful activities and spend time with our other children. Priorities have really shifted. Family is more important. A lot of other things seem pretty trivial. We still struggle, but we’re now 5 years out and things seem a little less acute, though there isn’t a day that goes by that we do not think of him.

If you have other children, how did they handle the whole experience? If it has been over a year, how are they now?

Scotland was only about two and a half when Odin died, so she was a baby through most of it. The worst thing for her has probably been dealing with our anger and sadness. We’ve probably been a little too hard on her, and her sister. We have three girls, two born after Odin’s death. We talk openly about Odin and he is included as part of the family. When Scotland first started preschool, she would talk about him, and you’d never know when she’d mention she had a brother who died. They do fine, though sometimes it’s hard to figure out how they are processing the idea of “death.” Larkin, who is 4, is at the stage where she sometimes talks about him as if he’s living someplace else and can’t visit.  But, Odin’s a part of their story. They often say they miss them; Scotland is now at a point where she doesn’t have real memories of him.

What made your child with cancer unique? 

People always said he was an “old soul.” He had these great big brown eyes and a way of calm contemplation and taking in the world that was surprising for how small he was. He also had a great sense of humor though and could be extremely silly. And so very loving.

What were some of your child’s favorite things to do? Did they have heroes, sources of comfort & joy? Odin Baer loved cuddles, Curious George, music and dancing, all things Muppets, and playing outside with his sister Scotland and his friends.  His favorite movies were the Toy Story movies (he called them The Dinosaur Movies, because of the character Rex). He was often quiet and observant and his humor would sneak up on you. He called Batman “Fatman,” even after we corrected him, and even though his tent was the “Batcave.” He woke up each morning with a smile. When he couldn’t really walk anymore, he’d still call down the hall for Mom to come get him. One of the big things we remember is that he always would ROAR like a bear. He even taught his little sister, who was under two.  He gave kisses and hugs amply, had big brown eyes and a curiosity for the world. He loved everybody.

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

It can happen to any child. We had never heard of DIPG until our child was diagnosed. And it wasn’t anything we did or didn’t do. It just was. The worst straw drawn, ever. 

But, we had hope the whole time. We had to, to keep going. As my husband said at the time, “We have the rest of our lives to grieve.” So we tried to make every day count for Odin. 

How did you find out about Rett’s Roost?

I searched for bereavement retreats, and maybe saw something in an online group. I reached out, even though we live out of region, because we needed something as a family. 

What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?

Friends, connections, and knowing we’re not alone. I also discovered some therapies and techniques that can help me process when I’m alone. 

The Strong Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given?

During pregnancy there was no concerns that there would be anything abnormal. Caden was born at 2:30 in the afternoon on Saturday July 2nd 2017. He was two weeks early and weighed 10lbs 3oz. Caden had a skinless mass on the left side of his neck that went from his shoulder to just below his ear. Before tests were completed, doctors initially assessed it as a rare form of birthmark that could be removed with surgery. On Wednesday July 5th we found out how large the primary tumor really was. It was wrapped around the carotid artery, went up into his jaw, wrapped around his shoulder and went down below his ribcage. At just six days old we were told Caden had cancer and it was everywhere. Caden had the primary tumor, and metastases in his left lung, lymph nodes, in the left armpit, both adrenal glands, and multiple in his liver, the largest being the size of a grape. Caden was diagnosed with Atypical Teratoid Rhabdoid Tumor (AT/RT). ATRT is one of the most aggressive cancers and the most aggressive the pathologist had ever seen. ATRT is also known to start in the brain but Caden’s cancer had not and never spread to the brain. One of the Oncologist sat down with us and gave us two options. Start chemo right away or take Caden home and live out the remainder of his life. We started chemo that night.

How did their treatment progress?

In the beginning Caden’s cancer responded extremely well to chemotherapy. The tumor on his neck shrank rapidly. Caden’s cancer was unique from most, we had a visual of how the treatment was working because the cancer was on the outside of his body. We spent the first month of Caden’s life in the hospital before we were able to take him home for the first time. His first adventure outside the hospital was to the Jacksonville Zoo. It became a waiting game as Caden’s counts would drop and recover. His cancer was so aggressive that as soon as his counts would begin to rise we could see the cancer growing. It was always a race against the clock. Seeing the effectiveness of the treatment and Caden’s rapid recovery from chemo fortified our belief that Caden would beat this. All the metastases except for the largest in the liver and the adrenal glands disappeared. In September we were in the process of moving to New York and Caden was then treated in Albany. At about three months old is were we started to lose control. On October 17th the nurse had mixed up the chemotherapy and gave Caden three times as much chemo in a few minutes than he was supposed to get over the course of two days. All we could do was hope that Caden would pull through. The side effects were awful and some were permanent because of the mix up Caden was delayed a whole month. In between recovery Caden was finally able to have surgery to remove the tumor on his neck. We initially believed that was the only active cancer and we had planned to have another surgery to remove Caden’s adrenal gland when the Kidney Specialist was available. When we did more images on the adrenal glands we discovered that the tumor in his adrenal glands had grown and a spot remained in the liver. Instead of surgery we started chemotherapy again in hopes to kill the rest of the cancer. We completed the five days of chemo and were able to be home as a family for Thanksgiving. It was the only holiday Caden was able to be home and we felt everything was normal. Things would quickly turn for the worse in just a few weeks. We had finished two rounds of chemotherapy and the Oncologist could feel Caden’s liver, which meant chemotherapy was not working. Caden developed a fever and had a bad infection in his Broviac line. Our only option was a trial drug in Boston but Caden had to be six months old before he was able to qualify for the trial. Three weeks had elapsed since Caden’s last treatment and he still had another 10 days before he was six months old. We all agreed Caden didn’t have that long to wait, so we agreed on a preliminary chemo treatment. The preliminary chemo would actually delay us starting the trial till his body was clear of the drug. We were scheduled to start the trial on January 25th. Every day that passed became harder and harder for us to control his pain. We spent as much time as we could as a family of four not knowing what the next day would bring. The weekend before we were about to start the trial, our fears became reality. Caden hadn’t urinated all day so we called Caden’s Oncologist. He was very concerned and told us to go straight to Boston. Caden’s kidneys and liver had started to shut down. They tried a bunch of different things in hope to help Caden’s breathing and levels. We had to make the impossible decision to stop all treatment and just keep him comfortable. On January 25th at 11:00 PM Caden passed away in our arms.

What did this devastating tragedy feel like for your family? What was early grief like?

Everything felt unreal and everything happened so fast. Treatment was work then all of a sudden it was not and Caden was gone. There was nothing I could do to save my baby. There was no real treatment to help him fight. I felt completely powerless and defeated. Early grief we spend a lot of time outside and hiking mountains. I also spent a lot of time baking and cooking. Being able to talk to someone that has also lost a child and working through my grief with her is more helpful then she will ever know. I could talk to her about the hard stuff and she wouldn’t shy away.

What helps you in your grief now?

Grief is like a wave. As time passes the length between each wave becomes farther apart. But when that wave comes it can hurt and knock you over just like in the beginning. We still like to spend a lot of time outside and finding new adventures. We also like to remember Caden by hatching and releasing butterflies on his birthday every year.

If you have other children, how did they handle the whole experience? If it’s been over a year, how are they now?

At the time Adelynn was 2 years old. We have always been very open and honest with her. She knew that her brother was sick when he was born. When things started to spin out of control we worked with the team in Boston on the best ways to talk to her about Caden’s death. Adelynn was able to hold Caden and say goodbye to him at the hospital. Adelynn is now 5 and still talks about her brother often. Her Mimi made her a “Caden Bear” out of one of Caden’s PJs and she loves him. She still becomes very sad and misses him often.

What made Caden unique?

Caden was a gentle soul. He always had a smile and was so happy all the time. He loved anything that made crinkle noises. He had the most beautiful blue eyes and had a stork bite the shape of a V right in the middle of his forehead.

What is your favorite memory or most positive outcome of attending a Rett’s Roost Retreat?

I was beyond nervous to attend a retreat. I was not ready to open my heart to new people and I was scared. I had not opened up and shared Caden’s story out loud with anyone on a personal level. I just felt like family when I walked through the doors. It was so easy to talk to everyone there. They all wanted to hear about our son instead of being afraid to ask. I am blessed to have met the families that attended the retreat with us.

The Bottari Family

When was Seth diagnosed with cancer?

Seth was preliminary diagnosed at 5 months in December of 2016, but his diagnosis of AT/RT (Atypical teratoid rhabdoid tumor of the brain) was not confirmed until mid January 2017.  Seeing the dates now does not seem like a long time but it felt like an eternity in the moment.

How did his treatment progress?

Seth’s treatment was slow to start due to the amount of time it took to get a definitive diagnosis.  We spent 6 weeks from the time they told us he most likely has this really terrible and aggressive cancer to when we actually received confirmation and his treatment followed the same path.  If there was a bump in the road Seth hit it!  Beginning with the wrong type of central line being placed, to fevers, RSV, and other bumps along the way Seth didn’t begin treatment until February 3, 2017.

His type of treatment was aggressive and they told us it would be difficult and Seth would be in-patient for weeks on end.  He did defy all odds and made his way home pretty regularly but we also spent a fair share of time in the hospital. Seth was a trooper through it all and for the majority of the time had a smile on his face.

In early June 2017 we got amazing news that the treatment was working and the tumors in Seth’s brain had shrunk.  They were so elated with his reaction to treatment that they were going to begin preparing Seth for the stem cell transplant phase of treatment.

As parents we were so excited.  Our son was going to make it, and although the stem cell transplant process is hard and grueling on everyone involved it was going to keep Seth with us so we were ready to move full steam ahead.

But Seth’s cancer had different plans, during the testing needed to move toward stem cell transplant a large tumor was found on Seth’s right kidney; and it had grown during the time that Seth was receiving chemotherapy.  Why his brain responded and his kidney didn’t is something we may never know.

From the time we found out about this as parents we wanted to enjoy our time together as a family.  Keeping Seth as comfortable as possible for as long as we could have him with us.  However, the option to remove Seth’s right kidney was posed to us as potentially giving him another possible 18 months.  How could we possibly refuse that opportunity?  They weren’t even sure this was AT/RT so we went for it.  Seth’s right kidney was removed and he recovered nicely.

It was 2 weeks later that we were doing additional testing to determine next steps for Seth when an MRI revealed that the tumor had grown back in the same place to half the size it was previously, he had spots all over his lungs that were too numerous to count and a concerning spot on one of his vertebrae.

Devastating doesn’t even begin to describe how we felt.  We had his kidney removed to give him, give us, and our family more time and now we’re right back in the same devastating position.

At this time we took Seth home for as long as we could but ultimately decided to return to the hospital when things got worse because we didn’t want him to suffer.  We had a wonderful few days as a family having sleepovers at the hospital and just being together as a family of four.  Seth ultimately took his last breath on August 30th in my arms.

What did that devastating news feel like for your family?

Through the whole journey we were hit so many times with devastating news.  The initial mention of AT/RT – how can our perfectly beautiful and healthy baby boy have this terrible disease with no sign of anything.  How will we do this financially, emotionally, physically?  How will this effect Sadie?  Could she have it?  Do we have it?  So many things spiraled through our minds.

Then realizing that you couldn’t save your son.  A terrible feeling that no parent should ever have to experience.

And lastly having your infant son take his last breathe in your arms.  Something I would never wish on anyone but also something I wouldn’t change for a second. I was there to bring him into this world and I was there to ease and comfort him on his way out.

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

Our friends, family, and employers really rallied around us from the start and haven’t stopped.  In the beginning it was just spending time together, meal drop offs, and eventually it grew to financial support, ensuring that Sadie was well cared for when either of us couldn’t be with her, dropping everything at an instant when we had to take Seth to an appointment or the ER.

What were some of your child’s favorite things to do? Did he have super heroes, sources of comfort & joy?

Seth was so young through all of this that he couldn’t tell us what he wanted to do but he always wanted to be held and snuggled, he loved his swing and rocker, his eyes lit up when Sadie came to visit or when they could play together, he loved throwing his toys on the ground and making us pick them up over and over again, he listened to music with my husband, and his favorite toy was the syringe for his G tube.

What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?

By far, it is the lasting friendships formed and finally having people who understood what we were going through. People who had those same hard questions and terrible thoughts running through their minds.

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

Let’s be honest it sucks!!!  You never think you’re going to be the one effected by this terrible disease until you are and it’s heartbreaking and life altering.  But despite how awful all of it is, the diagnosis, the treatment, the sicknesses, the unbearable grief, there were a lot of good times and memories too.  The circumstances weren’t the best but we enjoyed time as a family as often as we could and made a second family with the staff on the 9N floor at Boston Children’s Hospital.  We really got to see how generous and loving people could truly be through what will hopefully be the worst experience of our lives that we carry with us each and every day.

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

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