WHEN A BIRTHDAY CELEBRATION BECOMES SO MUCH MORE
By MIKE EDDLEMAN
Birthdays come and go. Punctuated by the brief celebration of another year in what is expected to be many in life, they are often ultimately marking time.
But sometimes a birthday transcends marking a milestone, truly becoming a celebration of life, and maybe an escape from the fear of an unknown future.
That was the unexpected reality that unfolded for Megan Beatty as she watched a simple celebration of her young daughter’s life lift her family above all the stress and heartache – at least for a time.
The party, thrown by strangers to celebrate Haley and her mother’s birthdays on Dec. 22, 2018, set Beatty on a path she continues to blaze today.
In May 2018, the family was hit with the diagnosis of Acute Lymphoblastic Leukemia, commonly referred to as ALL, for Haley, who had been battling a mysterious illness that left her with headaches, vomiting and other issues throughout her Kindergarten year.
The journey for families is more than just the debilitating news that a child has cancer. It reaches into every part of life, impacting family relationships, finances, personal well-being and more.
“This alters every component of life they knew before, requiring significant adjustments to their everyday life,” said Apollonia Ellis, a Pediatric Oncology Social Worker at Dell Children’s Hospital. “It impacts the family, other children in the home, interpersonal relationships, friendships, marriages, education, employment and it takes a toll on the family’s socioeconomic situation. We play a part in helping offer support with those external and internal stressors or barriers.”
After a whirlwind of diagnosis, surgery, treatments and one doctor visit after another, the Beatty family had just gone through a few difficult rounds of a stronger chemotherapy over Thanksgiving time. That’s when it happened.
“It was just so crazy busy, and I feel like a group of people reached out to me and said they heard Haley had a birthday coming up,” Beatty said. “I said I had one too, we have one the same week, and they got together and threw this giant magical birthday party for us and it was such a distraction. It was at a much-needed time. She was doing pretty bad at the time because she had lost so much weight from chemo.”
The experience so moved Beatty, she was instantly inspired to bring that same respite to others coping with similar struggles.
“I knew that day that it was so cool and that I wanted to do this for kids whenever Haley is at the end of this,” Beatty said.
In November, Haley had her most recent check up and she is cancer-free, but Beatty and her family are not blocking out their experience or shying away from helping others who are fighting a similar battle today.
“It was so spectacular that it completely blew us away,” Beatty said. “We had a venue donate their space to us, it was a beautiful place. We had such a huge support system, so we knew it would be big, and probably 150 people showed up. I’d never met these people before in my life, but they came in with Santa Claus, the Grinch, a clown, horses. There was a DJ, a buffet line of food and a beautiful wedding-type Christmas cake.”
The party was organized by Heroes For Kids out of Dallas, who reached out to local volunteers to make the event happen.
“I just kept thinking ‘where did these people come from,’” Beatty said. “None of them had experienced childhood cancer, it was just completely from the bottom of their heart.”
Seeing the impact on her daughter, who she said was robbed of a part of her childhood in her battle against cancer, was what made the party so special.
“It is just a great way for kids who are thrown into a very grown up situation, whose lives are completely changed, to just forget about what they’re going through and be a kid for a day,” Beatty said. “That’s the goal and that’s what touched me so much with Haley’s birthday. Looking at her and seeing her laugh at the clown and being excited to be on a horse. She was dancing in the middle of the stage and it was something she hadn’t done for months and it was beautiful to see.”
This kind of escape, even if only brief, is something Joell Beagle, a Pediatric Oncology Social Worker at Dell Children’s Hospital said is critically important.
“It’s really, really important for kids to remember that they’re not just a diagnosis, that they’re a whole person and that they have interests and things they’re passionate about, that they have different relationships with their family,” she said. “Being able to celebrate and just be a normal kid for those moments or days is hugely important. It lifts their spirits and reminds them that this is just a part of their experience, not their whole experience.”
A life-consuming diagnosis
The signs of something troubling began when Haley was in kindergarten, but answers were not easy to come by as the family searched.
“When your child is in that much pain, it just seems like something is wrong, so we were taking her to hospitals and doctors, pediatricians,” Beatty said. “She was constantly missing school, and finally one day we were out to eat somewhere and she told me she didn’t feel right. She was six years old and telling me ‘Mom, maybe I need to go on a diet and exercise’ and I just packed our dinner up and told my husband we were driving to Dell (Children’s Hospital) because we just weren’t getting answers.”
For months, Haley dealt with headaches, vomiting and other symptoms that never seemed to improve, but that trip to Dell Children’s Hospital finally at least began providing some answers, even if they were hard to take.
“Nothing really prepares you for the doctor coming in and saying ‘I need someone to stay with your kids and mom and dad I need you to come with me’” she said, recalling the moment they got the news. “You just know right then that something’s not right because they can’t say it in front of the kids. It went crazy from there, going straight from the ER to the ICU to brain surgery. I thought she was dying.”
About two weeks later, doctors confirmed to Beatty it was cancerous and that both radiation and chemotherapy would both be required to treat it. Everything else in life became a blur for the Beatty family.
“I’ve said it a million times to other parents. I feel like God gives us this natural trauma response,” Beatty said. “I feel like you go into survival mode, so it’s almost like you’re walking and living a moment five minutes at a time. The only thing you can focus on is getting to the end of it with your child alive. Everything else is just something you can’t think about.”
It impacts a lot of families, but life doesn’t stop after a cancer diagnosis.
“On average an ALL (Acute Lymphoblastic Leukemia) takes two and a half years to treat, so life continues to go on during that time. Children are still learning, parents are still working and holidays and birthdays still come, so the opportunities (such as parties) bring moments of joy to the children and families where so much has changed in such a short amount of time,” Ellis said. “Planning the celebrations, as awesome and fun as they are, can also be stressful for the parents so this can also help alleviate the stress for the caregivers when others take on this responsibility.”
That escape, the stress relief, found in these parties and other activities that seem so simple in everyday life become key.
“We do have patients that are here for months at a time, if not years at a time undergoing intense treatments, so being able to have a variety of opportunities where we can touch base with the families and provide them those little moments of joy is important,” Beagle said. “Sometimes it’s a gift card, sometimes it’s a holiday party. Sometimes it is opportunities just like this with these types of birthday parties where we can remind kids they are kids.”
The strain beyond the diagnosis
Battles with cancer conjure up images of doctors, nurses, feeding tubes and intense treatments, but those impacts outside the treatment rooms can be just as much of a strain.
“There are a lot of different things people don’t think about when it comes to helping families that are walking through a cancer diagnosis with their child,” Beagle said. “If you have a child with ALL, with Leukemia, and they have a two-year treatment plan and you have to go to a number of different clinic visits, and they are going to be hospitalized for different treatments and things like that, then it means that you have at least one parent, if not two parents, that are going to have to navigate that when it comes to their jobs.”
Many questions with no good answers are thrown at families when they are already frightened and stressed.
Will one of the parents need to give up a job in oder to be able to be there and available for that child for both scheduled and unscheduled appointments and hospitalizations? How does that impact a family’s finances? How does it impact the family’s siblings? How much time will they be able to spend with siblings, or what about the attention that is maybe turned to focus on that specific child because of their cancer diagnosis? It becomes difficult to pay attention to every child within the family, so how do you balance that?
That toll on the family is mitigated as much as possible through the social workers at the hospital and an army of volunteers and organizations that have the sole goal of helping families navigate.
“We come alongside them as social workers and say ‘look at the myriad resources we also have to offer,’” Beagle said. “All of these different community organizations, all these different people who want to come alongside and provide everything from birthday cakes to customized shoes to any number of different resources to make this time in their lives just a little bit lighter.”
The rate of childhood cancer in the U.S. is 3.4 percent for children age one to four, and 2.5 percent for those five to nine years old, so this struggle is not as rare as one might think.
“In my neighborhood alone in Liberty Hill there are three kids,” Beatty said. “It is insane how many kids. Whenever I was in the clinic and just looking around I thought, ‘They say this is so rare, but there are so many kids and so many families who are battling this.’”
The only way Beatty was able to understand the magnitude of such a diagnosis was to experience it.
“I didn’t know what all this meant,” she said of what families cope with in childhood cancer. “I was blind to childhood cancer before it hit my home. Once you’re in it, it is so hard to walk away after everything you have seen. We made so many friends. It is so strange because sometimes you are so much more connected to these families than your own family because you relate to them.”
Known today as Birthday Parties for Warriors, Beatty has – even in the face of COVID-19 and much-needed extra precautions – spent nearly 18 months focusing on how to give other families the uplifting experience that was shared with hers.
“Once Haley finished treatments, which was in August of 2019, I called the social workers at Dell and talked to them and they have been giving all the birthdays directly to me.”
It took a little time as she coped with her own emotions, but always with her were thoughts about those friends and connections she had made as Haley went through her treatments.
“When her treatment was over, I could really look back and reflect, and realize what we just went through,” Beatty said. “It really hits you all at once, and over a few months I was really a bit depressed and I decided I couldn’t just sit by and leave all those people behind we were with. I know it’s not going to war, but you feel like you just left those people behind and it is a weird feeling. I couldn’t walk away from the kids.”
Those families that can’t walk away serve as the backbone of the support structure they all need.
“We strongly rely on our resources to provide our families what they need,” Ellis said. “Without the foundations and our community partners, we wouldn’t have the means to address the needs for our families. When I say it is important, it is crucial.”
In the first party she planned, with dozens of volunteers at her side, Beatty was determined to go all out.
“Our very first child was dying,” Beatty said. “She was on hospice and I knew we had to do something spectacular for her. We got a princess horse and carriage, we did this giant parade for her.”
The party also came with a very special gift that set the tone for how much Beatty would be determined to make dreams come true for those she could help.
“The only thing she wanted was this American Girl Doll unicorn and it was sold out everywhere,” Beatty said, admitting she even called the manufacturer directly for help to no avail. “They did everything they could, but they couldn’t find one. It was all she wanted, and we had to get it.”
Beatty found the doll on E-Bay, and contacted the seller, sharing the story of why they needed the doll, and everything fell into place.
“She wrote me back and let me buy it for the original price,” Beatty said. “We only had a week so she quickly shipped it. The little girl died a couple of months after, but it was a great first party.”
Most recently they threw a party in Liberty Hill for a family and found the local generosity to be overflowing. Local businesses including Fratelli’s Pizza, Mojo’s, Squirrel Squared, Hashtag MakeReady and DigiTex were all eager to help in any way possible.
“There were a lot of people in Liberty Hill who came together, a lot of businesses,” Beatty said.
She has hosted six parties so far, with no plans to slow down, and the volunteers that join Beatty are one of her biggest inspirations.
“There are such good people out there that it makes me want to be good,” she said of how inspired she continues to be by others who give their time and talents. “It is incredibly uplifting and I’m always amazed by what people have in their hearts to give.”
The variety of volunteers she works with, Beatty affectionately refers to as the puzzle pieces.
“If I can’t figure out how to make something happen then I can call them and they always make it happen,” she said, laughing.
The staff at Dell Children’s said all of the volunteers and organizations that step up are incredible, and Beatty is no exception.
“She’s fantastic,” Ellis said of Beatty. “She swoops in on her white horse. We can’t do anything without our community partners so I sing her praises because she has been so very helpful.”
And in those short moments while Beatty can stand back during a party, see the joy in the families who are being given the same brief escape she enjoyed and reflect on her own experience, she is reminded why she can’t imagine not planning the next party.
“Seeing the reactions from the parents when they realize how much support they really do have, and how much love and prayers there are for them is really special,” she said. “I feel like that’s probably the best part of the birthdays, showing them they’re not alone. I feel like these parties have been such a healing process for me.”