Toddler Rings Bell In Brain Tumor Treatment After Generous Life-Saving Donation From Taylor Swift

“Filled with tears, pokes, surgeries, infusions, chemos, scans, fevers, late nights, uncertainty, sedation, radiation. But now there’s cheers. CHEERS to no more. No more destroying our girls body to try and save it. It’s over. Today we celebrate.”

Lilah was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), a very uncommon and aggressive type of brain cancer. These tumors make up only about 1–2% of brain tumors found in children. The National Cancer Institute reports that roughly 58 people in the United States are diagnosed with ATRT each year.

Back on October 17th, Lilah’s mom took to TikTok to share the sweetest video of her daughter thanking Swift for her donation.

Her mom captioned the post, referring to how Swift donated $100,000, “I cannot say thank you enough. I’m truly in shock. This means we don’t have to worry about anything other than Lilah.

“Truly such a blessing. Thank you @Taylor Swift.”

In the sweet footage, Lilah is heard saying, “Taylor Swift … is my friend.”

@standwithlilah

I cannot say thank you enough. I’m truly in shock. This means we don’t have to worry about anything other than Lilah. Truly such a blessing. Thank you @Taylor Swift

♬ original sound – The Smoots

Lilah’s GoFundMe had an initial goal of $100,000, but that amount was quickly surpassed after Taylor Swift’s fans joined in to support. In total, $357,194 was raised.

The crowdfunding page offered more insight into her daughter’s health, explaining, “A little backstory: On February 24th, my sister-in-law went into labor. While she was in labor her 18 month old daughter Lilah had a seizure while at home. She was rushed to the hospital where they did a scan and found a mass on her brain. Later that day she was transferred to a children’s hospital for an MRI where they found out that the mass was a stage 4 tumor.

“On March 3rd, Lilah had brain surgery to remove the tumor, which the surgery was very successful! The whole tumor was removed and Lilah is recovering very well, you would have never known that she had brain surgery!”

It continued, “Later in the week they found out that Lilah has been diagnosed with a very rare aggressive form of brain cancer. There were only 58 documented cases in the U.S. last year. She will be admitted to the hospital and she will have 3 months of chemo and 3 months of stem cell treatment. They will be living at the hospital for 4 weeks at a time while she is getting her treatments.

“All we are asking for is lots and lots of prayers for this strong little girl! Every donation is appreciated no matter the amount. If you would like to donate a different way please contact the creator. Help us lessen the burden on their expenses so they can focus on taking care of their baby girl, Lilah! If you are not able to donate, share with your friends and family as it would mean the world to us!”

In addition to chemo, Lilah also underwent six weeks of proton radiation.

Speaking to People about how grateful she was for her donation, Lilah’s mom said, “The donation is incredible — it helps us so much — but the fact that she took the time to watch, to care, to send that message… It means everything.”

In an earlier interview with People, Katelynn said, “With Lilah’s cancer, if you don’t treat it, there’s a 100 percent chance she’s going to die.

“Because it’s so rare, there aren’t many treatment options — there’s really only one protocol that’s been used for the past 25 years.”

The type of brain tumor Lilah battled is an Atypical Teratoid Rhabdoid Tumor (ATRT). According to the American Brain Tumor Association, it is an uncommon and aggressive brain or spinal cord cancer that mainly affects children under the age of three. These tumors typically grow rapidly, form large masses, and can spread throughout the central nervous system.

“Symptoms depend on the age of the patient as well as the size and location of the tumor. These may include nausea and vomiting, unusual sleepiness or change in activity level, loss of balance, lack of coordination, trouble walking, headache, seizures, and increased head size or bulging fontanelle (in infants),” the association explains.

“Treatment generally involves surgery to remove the tumor followed by intensive chemotherapy. Radiation is often utilized depending on the age of the patient and if the tumor has spread.”

We’re delighted to know that Swift’s efforts helped lead Lilah to finish treatment, and it’s possibly her generosity and understanding stems from both of her parents having their own battles with cancer.

RELATED: Both of Taylor Swift’s Parents Had Cancer— The ‘Shake It Off’ Singer-Songwriter Says It Taught Her To Focus On ‘Real Problems,’ Not Small Anxieties

Swift’s mom is a two-time cancer survivor following her first breast cancer diagnosis in 2015 and then again in 2019. She also dealt with a brain tumor doctors discovered while she was undergoing chemotherapy.

Also, her dad [reportedly] conquered prostate cancer.

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A post shared by Taylor Swift (@taylorswift)

Understanding Brain Cancer

According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85 to 90 percent of all primary central nervous system (CNS) tumors. The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the entirety of the nervous system, according to the American Cancer Society. Normal function of the brain and spinal cord can become difficult if there’s a tumor present that puts pressure on or spreads into nearby normal tissue.

There are many different types of brain cancer. Some types of brain and spinal cord tumors are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, but even these tumors can cause serious problems.

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Brain Tumor Symptoms

Symptoms of brain tumors are often caused by increased pressure in the skull. This pressure can be caused by tumor growth, swelling in the brain or blockage of cerebrospinal fluid (CSF), according to the American Cancer Society.

It is important to note that brain tumor symptoms are not exclusive to brain tumors, but you should still contact your doctor if anything seems off. General symptoms may include the following:

• Headache
• Nausea
• Vomiting
• Blurred vision
• Balance problems
• Personality or behavior changes
• Seizures
• Drowsiness or even coma

Understanding Childhood Cancer

Treatment advances in recent decades have lead to 84 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.

But according to the National Pediatric Cancer Foundation, more than 95% of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.

Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone’s Perlmutter Cancer Center, reminded us in an earlier interview that there is still reason for hope.

“There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that,” Dr. Raetz told SurvivorNet.

Still, navigating a child’s cancer diagnosis can be tricky, something Jayne Wexler knows all too well after watching her son battle acute lymphoblastic leukemia.

In a previous interview with SurvivorNet, Wexler explained that in addition to regular parent worries having a child with cancer means living with a whole new world of anxieties.

The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story

“My husband and I will always have fear,” she said. “I don’t think we can ever let go of that. Just when he was OK, then he relapsed, and then he had the bone marrow transplant, so there’s always some sort of worry.”

Wexler admits she tries to live for each and every day, but it’s understandable that this does not always come easy.

“And I do try you hear people say this we do have to live each day and be thankful for what we have,” Wexler said. “And it’s hard to remember that when you’re caught up, it’s very hard to just sort of enjoy the moment, because we just don’t know what’s going to happen in the future.”

Coping With A Child’s Cancer Diagnosis

Advocating for your health and your child’s health is essential to getting the necessary care before a condition worsens. Some cancers can have subtle symptoms, so don’t delay seeing your doctor. Luckily, the Fraley’s got their sweet girl into the right specialists just in time.

RELATED: Be Pushy, Be Your Own Advocate- Don’t Settle

Family members caring for a child diagnosed with cancer can be stressful. Family support not only eases the anxiety of the cancer patient, but the added support also helps their loved ones.

Caregivers of cancer warriors must also watch out for “caregiver burnout” where stress, anger, fatigue, and illness emerge from putting another person’s needs ahead of your own.

Caregivers who find themselves struggling to care for a cancer warrior should seek out a therapist, or a support group of their own either online or in person.

Dealing With Grief Related to Health Problems

As parents navigate the cancer journey with their young cancer warriors, it’s important to remember children’s bodies may react differently to treatments than adults because their bodies are still growing.

“They may receive more intense treatments…and they may respond differently to drugs that control symptoms in adults,” according to the National Cancer Institute so it’s important to ask plenty of questions to doctors throughout the cancer journey.

Remember, you’re not alone in this journey your child’s oncologist and care team are there to guide you and provide information and answers. Oncological social workers are a fantastic resource to help you sort out the financial aspects of cancer treatment, as well as other cancer-related issues. Skilled psychologists and counselors can be accessed to help you maintain good mental health through your child’s cancer journey, to the best of your ability.

And, don’t be afraid to reach out to your support system friends, relatives, etc. for help through this process. No one expects you to handle everything on your own.

Meanwhile, if you’re wondering what you can do to ensure your child is getting the best treatment possible, consider the following recommendations from the National Cancer Institute.

• “Build strong partnerships” Communicate openly and honestly with your child’s care team. You want to build a solid relationship with the people treating your child so you feel confident asking any questions and discussing your child’s treatment path.
• “Take advantage of the many specialists who can help your child” There are many people who can help you and your child after the diagnosis arrives. Don’t hesitate to ask for specialists to help you and your child learn about their disease, understand how it will be treated and cope with difficult emotions.

• “If you get information online, make sure the source is credible” Doing your own research is a great way to advocate for your child, but it’s important you’re looking at reliable sources such as (but not limited to) the National Cancer Institute, Mayo Clinic, Cleveland Clinic, National Comprehensive Cancer Network and American Society of Clinical Oncology, among others. Talk to doctors about what you’re finding and don’t hesitate to get multiple opinions regarding your child’s treatment path.
• “Make sure you understand what your child’s health care team tells you” You need to ask for clarification if something about your child’s diagnosis or treatment is confusing.
• “Keep your child’s pediatrician updated” Make sure your child’s cancer care team is sending updates to their regular pediatrician.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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