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Our Families

Bella’s Joy

At 13 years old, in November of 2021, Bella had spinal fusion surgery. Several months later, her left shoulder began to hurt. Tracy, Bella’s mom, contacted the surgeon, who stated that shoulder pain should not result from the spinal surgery. Bella researched her pain online and told her doctors she suspected cancer, but they dismissed her concerns. As the pain worsened, Tracy arranged a follow-up appointment with the surgeon. After examining Bella’s shoulder and seeing how much pain she was in, the surgeon ordered an MRI of her back and neck to check if something had gone wrong with the surgery. The results showed no issues with the surgery.

Tracy was working on getting Bella in with a nerve specialist, as her pain was becoming unbearable. Bella’s school nurse noticed that her shoulder appeared disfigured and suggested they visit her pediatrician. The pediatrician asked if they had taken an X-ray, and Tracy mentioned that Bella had an MRI. At that point, they realized no images had been taken of Bella’s arm and shoulder. The pediatrician then referred them to an orthopedic specialist at Children’s in Weymouth, MA. When they arrived, Bella told the doctor that she suspected she had cancer, and the doctor reassured her that it was highly unlikely.

After waiting for almost two hours following the X-ray of her arm, the doctor returned and told Bella that she was correct—she did have cancer. The doctor immediately sent them to Boston for an MRI. That was the start of Bella’s cancer journey.

Receiving the news of a cancer diagnosis was devastating, but Tracy and Bella decided on the very first day that they would find a way to focus on something positive, and to take time to laugh, each and every day. They chose not to focus on the prognosis and asked not to know the stage of cancer or statistics of survival. Instead they would take each day one moment at a time and deal with what was right in front of them. This approach helped them to get through even the most difficult of days.

Bella’s treatments for osteosarcoma started almost immediately, and she never went into remission or had a break. Due to this, Bella did not have a chance to do a Make-A-Wish or some of the things they wished she could have done. Bella underwent chemotherapy treatments, radiation, and several surgeries. Throughout all of Bella’s treatments and surgeries, she always remained positive, and they always found ways to laugh. Bella’s two lung surgeries were the most difficult procedures she endured. Even through these painful and challenging surgeries, she was able to find light in the darkest of circumstances. After a very hard fought battle, Bella passed away on December 8, 2022 at the age of 15. 

Bella was unique, creative, and quirky. She identified as part of the LGBTQIA+ community and was passionate about social justice issues. She loved animals and often talked about her dream of someday running a program for kids going through treatments with support animals. Bella wanted to provide not just dogs, but also cats, ferrets, snakes, and other unique animals that would comfort and cheer up the kids. She loved to paint and often passed the time during chemo treatments painting and making jewelry. Bella and Tracy would also watch TV shows and movies to pass the time.

Bella loved making connections with other teens at the Jimmy Fund clinic. Despite COVID protocols limiting in-person activities for teens, Bella connected with as many teens as she could. She then decided to create a group chat for all the friends she made so they could meet each other. They became a great support system for one another as they went through treatments. Bella even invited all her friends to attend her homecoming dance with her. Three girls were able to go, and their parents connected at Bella’s house, supporting each other while the girls were at the dance. The child life specialists began calling her “the ambassador.” Bella was truly a special person in how she brought people together and stayed positive.

Tracy is trying to deal with her grief in a similar way that she and Bella walked through Bella’s cancer journey, one moment at a time. She is working on being patient with herself as she walks through each day. She has joined the Pediatric Parent and Family Advocacy Council at Dana-Farber and hopes to make a difference there by representing Bella’s voice. Tracy is also on the Board of a local nonprofit run by her best friend called Be; Community, which focuses on the LGBTQIA+ community and adults with differing abilities. Bella held a part-time job at the storefront of this organization while going through treatments. Bella would have been a large part of this organization, and Tracy hopes to represent her there as well. Tracy and her son, Thomas, talk about Bella often and take each birthday and anniversary as an opportunity to honor and remember Bella.

Tracy doesn’t know if there is any “good” advice to give someone in this situation, but she would remind them,

Be patient with oneself and understand that there is no right or wrong way to grieve. Every person is different and will grieve and process in different ways. For example, I don’t cry a lot, and I felt guilty about this for a long time, but it is simply how I process my grief. One cannot predict how they will react or respond, and there is no right path for everyone.

She also recommends Hope Floats, a grief support organization on the South Shore in MA, that was also helpful right after Bella passed.

Rett’s Roost has offered amazing supportive retreats for both Tracy and her son. Attending the week-long family retreat was incredibly beneficial, as it connected them with other families going through similar grief, helping them feel less alone. Specifically for her 12-year-old son, he was able to see that there were other kids and teens who had lost a sibling and watched their sibling go through cancer. He left feeling less isolated and more understood. The connections Tracy made at both the Open to Healing family retreat and the Forever Healing parent retreat have been very helpful. Another thing that Rett’s Roost has done for Tracy is connecting her with a dedicated grief support person, Beecher Grogan. Offering free sessions to meet with Beecher has been life-changing for Tracy.

The Ojeda Family

The Ojeda Family lost their son Jayden (aka Beanz) on October 6, 2019, which was also his 15th birthday, to osteosarcoma bone cancer. Jayden was the third out of four children in the family and was very close to his siblings, Sacaria, Jorge, and Jena. His mom, Alicia, describes him as the glue that held the family together. Jayden was a phenomenal, competitive soccer player, so when he started to complain of leg pain, his mom Alicia, thought it was just a regular sports injury. 

On March 30, 2017 Jayden fell while doing tricks with a soccer ball. He called his mom three times from school that day complaining of leg pain. Alicia picked him up from school and brought him to urgent care, thinking that maybe he had a small fracture. This is where their nightmare began. Once a fracture was ruled out, the family was sent for additional testing, ultimately leading to the diagnosis of osteosarcoma of his leg bone. Alicia remembers feeling like her soul had left her body when she heard the word cancer, but she felt very confident that her strong-willed son would prevail. 

Over the course of the next three years, Jayden went through so much. Even after 26 rounds of chemotherapy and limb salvage surgery on his left tibia, the cancer continued to metastasize. Jayden also underwent palliative radiation and oral chemotherapy medication, but ultimately his body could no longer fight, and he told his family that he’d live until he turned 15. True to his word, on his birthday, Jayden took his last breath. 

Since losing Jayden, the Ojeda’s world has been flipped upside down. Their lives have completely stopped, yet the world moves on. Alicia feels it is very difficult to function in life now, as a piece of her heart is in heaven. Three years later, the pain is worse than ever. Alicia says that, “Grief of a child doesn’t get easier; you just realize that your child is going to be gone forever.” 

Jayden loved love, he loved life, and most importantly he loved his family and made sure everyone knew that. He was the most caring, selfless, sweet teenager that you can possibly meet, always going out of his way to ask people “how are you?” or “how is your day going?” even when he was going through the worst days ever. Jayden’s favorite things other than his mom and siblings were soccer, Marvel and DC comics, raccoons, and the ukulele. He loved playing with the younger kids in the hospital and being the “Mayor” of his floor. Truly, he was a shining light. He told every kid with cancer he met, “to never give up, and to never lose hope.”

Osteosarcoma is considered a “rare” form of cancer and typically occurs in pediatric patients. Because of this, it receives very little funding for research and trials. The chemotherapies that are used today are the same ones that have been in use for the past 65 years. Jayden’s mom, Alicia, wants the world to know, “Pediatric cancer does not have a face until it is your child. I was not a pediatric cancer mom until suddenly I was, and I was not a bereaved pediatric cancer mom until I became one. These kids deserve more than 4% [of federal funding] and until we start to care about pediatric cancer as a society nothing is going to get done. We need to raise awareness for our children because they are our future and don’t deserve to suffer at the hands of antiquated cancer treatments. We owe it to the kids that have passed from this horrible beast and are not here to advocate for their peers.” 

The Ojeda’s traveled from Florida this summer to attend a bereavement retreat in Saco, ME. Alicia reported this was one of the best grief retreats she and her family had ever attended and were very grateful to make connections with other bereaved families.

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.