A lifeboat of the island (Owen’s Story)

A LIFEBOAT OFF THE ISLAND (Owen’s Story)


There are images you don’t forget when your child is diagnosed with a brain tumor. The look on your wife’s face as a doctor explains to her that, no, your son is not OK and won’t be going home from the hospital. The supernatural glow the tumor has when you look at that first image of his brain. The way a doctor idly twists a phone cord during a family meeting, sighs in a way that is so far from hopeful it doesn’t even feel in the same state as despair, and says, “So Second opinions…”
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Making Headway was a lifeboat off our lonely island of hopelessness. Our lives were changed irreversibly when Owen was diagnosed. But so, too, were they when NYU Neurosurgeon Dr. Jefrey Wisoff said he thought he could remove the tumor. And when the incredibly kind staff at Hassenfeld and Making Headway walked us through the resources at our disposal post-surgery. And when “Snowen” met Looney Lenny for the first time after surgery. And when we went to our first Family Fun Day on Father’s Day, 2009. And when we snapped a picture of Owen with Dr. Wisoff as he celebrated 10 years cancer-free.

We’re honored to be a part of the Making Headway community—a family of fighters, survivors, and angels. I’m not sure we would have made it off the island if not for them. “Thank you” seems inadequate to the task of expressing our gratitude.

Chloe

Chloë


It’s been nearly 16 years since Roselle Tunison first found herself in an ambulance with her 6-month-old daughter, Chloë. Chloë had experienced a brain hemorrhage, and she’d shortly be diagnosed with a brain tumor. It was the beginning of a grueling journey, with myriad ups and downs, that continues to this day. But fortunately, it was also the beginning of Roselle and her family’s relationship with Making Headway.
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When her kids were young, Roselle would need to bring not only Chloë but her twin brother, Johnny, on the lengthy trips from their Long Island home to the hospital in Manhattan. (First, Beth Israel and, later, NYU Langone Medical Center.)

“The playroom is what made it doable,” she says. “It was so welcoming and warm. I could connect with other mothers going through the same thing there. For the kids, waiting for the doctor was arts and crafts time.”

Making Headway supports families for as long as necessary, whether that means an afternoon or a lifetime. Roselle has many stories to tell about her warm interactions with Drs. Allen and Kothbauer (members of Making Headway’s medical advisory board) and the Making Headway team. There was the time she and Johnny were waiting for Chloë to awaken after yet another surgery. It had been a long, stressful day and they were both tired and hungry, but she didn’t want to leave the waiting room. Suddenly, Maya appeared, bearing cupcakes!

There were the many times “the yoga fairy,” Annie Hickman, was on hand to help the children spend their waiting time with fanciful activities. There was support from psychiatrist Dr. Hess and psychologists Dr. Greenleaf and Dr. Donnelly. And there was assistance from education specialists Patty Weiner and Sabina Bragg. Roselle remembers warmly the period when Bragg (a member of Making Headway’s Ongoing Care Team at the time) helped the teachers and administrators at Chloë’s middle school understand the child’s special challenges: “Most schools don’t know anything about kids with brain tumors. They don’t realize that certain behavior problems are typical, and they blame the parents or something else. Sabina joined in our phone calls and made sure I was being heard,” Roselle explains.

Chloë still has her struggles at school and at home. The road hasn’t been easy for the Tunisons. But Roselle credits Making Headway for making everything a whole lot better than it might have been.

“What really stands out about Making Headway is the warm, compassionate care. There are days when you feel like you’re just going to give up because nobody understands what you’re going through. Making Headway understands.”

Eve

Ben


Around the time when I was five years old, headaches and migraines were a big part of my day. You could say they were like an additional sibling to my sister, Laura, that I got to hang out with—but not as much fun. After many, many visits to various doctors to figure out what in the world was going on, my parents made the great decision to visit a neurologist in New York City. Little did any of us know that trip would result in being admitted to the hospital, after learning the cause of headaches was a tumor that had decided to become friends with the cerebellum of my brain.
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My memories of being in the hospital are spotty, but I remember a few pieces. At the time I had fairly long hair and I remember the fear I had that I may need to get it shaved off for my upcoming operation to remove the tumor. Fortunately, that fear ended up being a non-issue. I was able to retain my hair, but the operation did result in me having a scar on the back of my head to be self-conscious about. I remember the tremendous staff at NYU, the great care I was given, and how they always tried to make me laugh (especially Adam the clown). Most important, I remember, and always will remember, meeting Maya and Edward Manley, who supported my family and me during this time and long after. And how could I forget the awesome Beanie Babies that were given to me after being purchased in the hospital gift shop?

After successful surgery (thank you Dr. Jeffrey Wisoff) and treatment (thank you Dr. Jeffrey Allen), I was released from the hospital. With the location of my tumor being the cerebellum, physical therapy was required to relearn some everyday skills—to name a few: balancing, walking, and picking up and holding an object.

Fast forward a handful of years to age 31: I have a full-time career in golf administration, where I get to follow my passion every day, and my wife Jenna and I are awaiting the arrival of our first child. Most people would never know what I went through when I was younger, but I’ll never forget it, and am fortunate for every day. I have so much to be thankful of and so many to be thankful for, but I’d be remiss if I didn’t say thank you to Maya, Edward and the Making Headway Foundation for all that you’ve done for me and everyone else in need. That scar that I was once self-conscious about is now something I’m proud of, as it shows where I was and how far I’ve come.

Tati

Tatianna’s Story


It is an honor to share the story of Tatianna, a creative and driven nine-year-old who has survived two bouts of medulloblastoma, and whose family has also benefited directly from the kind assistance of the Making Headway Foundation.
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Tatianna first met Dr. Hidalgo (a pediatric neurosurgeon funded by Making Headway) several years ago, when she was referred to Hassenfeld Children’s Hospital for suspected precocious (premature) puberty. Upon conducting an MRI, Tatianna’s doctors had observed something suspicious on Tatianna’s pituitary gland and recommended that she see Dr. Hidalgo. Dr. Hidalgo instead identified a brain tumor on Tatianna’s cerebellum.

“This was completely coincidental, before she had any symptoms,” Dr. Hidalgo explains. “We caught this brain tumor at a state when it had not spread all over her system. I took her from the MRI, hospitalized her, and operated on her the very next day.” Although Tatianna’s recovery from surgery was smooth—she returned home just a couple of days following surgery—the chemotherapy that followed proved difficult for the then 8-year-old. The brain tumor recently recurred, and Dr. Hidalgo operated again successfully in February 2020. Today, she is undergoing her second bout of chemotherapy, which had been delayed slightly due to COVID-19.

After her initial medulloblastoma diagnosis, something special happened: Tatianna became the star of a documentary called Tati, an intimate, behind-the-scenes movie that follows her journey as she creates her own short film while undergoing treatment. “This documentary came about from a nexus of events that happened. It’s becoming this miracle in my life and I feel really grateful to be doing this,” says Amir Arison, the veteran director of the film.Angelight Films, a nonprofit that gives children with brain or spinal cord tumors the opportunity to express themselves by creating and even starring in their own short film, approached Arison to work with Tati on her short film. He readily agreed. See the results and this wonderful short film at tatithedocumentary.com.

Carolyn

Carolyn


Carolyn is a hard-working young woman who is currently a sophomore in high school. She is also a brain tumor survivor and lost her father when she was little. Many brain tumor survivors face difficult challenges as a result of surgeries, treatments, and missed time at school. Carolyn was experiencing difficulties after she finally returned to school, including problems with her schoolwork and anxiety about her social life. To help Carolyn, she was referred to Making Headway Education Specialist Sabina Bragg.
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Ms. Bragg worked with the family and realized that at the heart of Carolyn’s struggles there was a common theme: school instruction simply did not meet her unique needs. Ms. Bragg went to the school, conducted staff interviews, and observed Carolyn in several learning environments. Using this information, as well as a previous neuro-psychological evaluation, Ms. Bragg put together a comprehensive presentation for Carolyn’s instructional team at school. She worked with them to develop creative instructional approaches, such as the use of an iPhone to take audio notes instead of written notes, as note-taking was difficult for Carolyn. Ms. Bragg demonstrated how small group instructional tables would provide the special education support that would not only support Carolyn, but also the entire class. Ms. Bragg helped change the mindset in the school, enabling staff to understand that Carolyn’s problems were due to behavioral issues caused by her treatment, and were typical of a child with her complex medical background.

Carolyn continues to show how strong she is despite all that she has been through. Her mother is extremely happy with the progress that she has made and is grateful for Ms. Bragg’s assistance, passion, and expertise.

Alexis

Alexis


I don’t worry about the little, insignificant things anymore
By Alexis Zachem

I am THAT girl who had a brain tumor. Before you start pitying me, let me make one thing abundantly clear. I love being the girl who had a brain tumor. No, not for the attention I get for it, and definitely not for the surgery and recovery. I like who my tumor made me and what it made me realize about myself. Before I became a brain tumor girl I was average. Smart, but never the smartest. Skinny, but definitely not the skinniest. All I wanted was to distinguish myself from everyone around me. I thought I could do this by being the prettiest or smartest, but found myself disappointed that I fell short every time. At the end of freshman year, as I sat on the sidelines of a lacrosse game, I was hit in the nose by a ball traveling 75 miles per hour. I was rushed to the emergency room to have facial reconstruction.
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I thought to myself, what could get worse than this? I can’t have shattered nasal plates and a deviated septum because I need to be pretty. I can’t spend months inactive, because I need to work out to be skinny. One thing I’ve learned about life is it can always be worse. Right before my surgery, my doctor pulled my parents aside and gave them the news that had everyone entering the room in tears.

I HAD A BRAIN TUMOR! An innocent 15 year old who was too shy and insecure to hurt a fly! I vividly remember the feeling when they told me; that feeling of your heart dropping to the floor as your stomach tightens and throat closes. I thought it was the end. I would never live to go to college, drive a car, meet my husband or start a family. I couldn’t have been more wrong.

The way I see it, people face tragedy in two ways. You can be the victim or you can be the survivor. I am a survivor. I fought my tumor and I beat it. I had a 10-hour surgery, spent 5 nights in the ICU, went on dozens of medications and have 6 titanium plates in my skull and a 9-inch scar, but I won!

I don’t like it when others know what I went through. I don’t like being looked at differently because I fought a deadly illness. But I do love who my surgery made me. Now I am passionate about everything I do. I appreciate every moment of every day because I understand how precious life is.

I have raised over $50,000 for Making Headway through planning and executing an annual spina-thon. I started a social media campaign called  “brain freeze for brain cancer” that gained international attention and had thousands of shares. I mentor kids currently battling brain tumors, and help their families through the experience. I donate toys and clothes to the hospital. I have a blog, braintumorgirl.com, that helps kids understand what to expect when having brain surgery. Nothing makes me happier than doing these things.

My surgery gave me a new perspective on life. I don’t worry about the little, insignificant things anymore. I know how lucky I am to simply be alive and I use that to make everything I do productive.

Alexis is now studying neuroscience at Duke University. Her goal is to become a pediatric neurosurgeon or neurologist, and change the patient-doctor interface for kids undergoing brain surgery.

Mary’s Story

Mary’s Story


Mary was an 8-year-old girl, newly diagnosed with a pineoblastoma and associated hydrocephalus who had just undergone a surgical resection to remove the tumor from the pineal gland of her brain. Most children who undergo this type of surgery encounter a variety of side effects, including ones that affect both motor and mental functions. Neuropsychologist Dr. Kate McGee (whose position is funded by Making Headway) was asked to consult with the family due to concerns regarding her language, processing, and communication following her surgery.
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Through an assessment battery which was individually-tailored to account for Mary’s hearing loss, Dr. McGee was able to discern that she was, in fact, cognitively intact and did not have cognitive or expressive language deficits, despite initial concerns to the contrary. In fact, Mary was very bright, with important areas of neurocognitive strength that were being masked by her newly acquired hearing deficits. Furthermore, in attempting to compensate for her hearing loss, Mary was relying entirely on alternative strategies for communication. Dr. McGee’s consultation helped to inform Mary’s physical, occupational, and speech and language therapies, highlighting that in order to communicate effectively, Mary required direct eye contact to enhance her ability for lip reading. Thereafter, Mary was far better able to communicate interpersonally and express her needs with both her treatment team and her parents.

Fortunately, as her medical situation stabilized, discussion was able to shift to her return to school and associated educational needs in the context of her medical history and hearing impairment. Educational Coordinator at Hassenfeld, Julia Gomez, met with Mary’s family and communicated with her school to ensure appropriate support and accommodations were put in place in anticipation of her return to the classroom. With the support of Making Headway and the NYU Hassenfeld Center, Mary’s future looks bright.

Arnold

Arnold


Arnold was only five years old when he was diagnosed with a brain tumor. He received six weeks of radiation and eleven weeks of chemotherapy. The chemotherapy was cut short due to a variety of serious side effects include hearing loss and the onset of learning disabilities. When he returned to school, his teachers reported “things he knew before the surgery, he forgot after the surgery”. He also needed to re-learn basic motor skills. Over the years, Making Headway has worked with the family and the school to ensure that Arnold received the best possible education and the services that he needed to achieve his goal of graduating high school.
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Arnold is currently enrolled in a co-teaching integrated classroom in 8th grade. This class has both a general education and special education professional assigned to work with both classified and non-classified students. Arnold will have the same program next year when he transitions to high school. In addition to the integrated class, Arnold receives a series of special services, including: speech, language, and physical therapy; a 1:1 paraprofessional; and special testing accommodations (extended time, questions read to him, etc.).

Over the past year, Arnold has made tremendous progress. With the specialized resources he now receives, his results on both the math and reading state tests improved by over 50%. He is now achieving at grade level and on a Regents Diploma High School track. Every day is still a struggle, but Making Headway and Arnold are working hard to overcome any challenges and achieve his goals.

Bjorn

Bjorn


One of the biggest challenges I face as a {Making Headway funded} Research Nurse during the COVID-19 pandemic is ensuring all of our international patients who cannot safely travel to the United States receive the necessary care by local oncologists. Our most recent international enrollment, Bjorn from the Netherlands, had started the trial at the end of February, just a few weeks before the shutdown.
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Bjorn had been scheduled to come to NYU once every month for his follow-up visits, but when COVID-19 hit in early March he was no longer able to travel to New York to see Dr. Gardner and receive his medication. I can recall many anxious emails from this patient and his family after their flight to the city was canceled. They were desperate for the medicine and eager to find a solution. We quickly set up a plan to ensure the continuity of his care. I worked with his local oncologist and informed her about the study requirements and the clinic visits that would need to take place every month. I also collaborated with the local pharmacist on the drug shipments. Though we received approval to ship the study drug it was held in customs in Amsterdam for several days. After many phone calls and emails the drug was finally released. Since then, we have successfully shipped 5 cycles of ONC201 to the patient’s home country. In addition to the shipping challenge, Bjorn was admitted to the hospital on two separate occasions. The trial requires all hospitalizations be reported within 24 hours. I teamed up with the local team to have all documents translated into English and sent over within the designated timeframe. I continue to set up check-in calls with Bjorn, and all of our international patients, every 3-4 weeks. Although the time difference in these countries can make it challenging, we always find a way to make it work! Dr. Gardner and I have done our best to make this trial possible for many of our international patients during such trying times.

Susan

Susan


At age six, Susan was one of the brightest children in her class. Then she fell very ill. Tests revealed the presence of a large cell Anaplastic PNET—a malignant brain tumor. Suddenly, instead of experiencing the excitement of first grade, Susan was undergoing surgery to remove the tumor, then facing a long round of chemotherapy and radiation. While the treatment worked wonders on her cancer, the illness and its aftermath left their marks. Her hearing was compromised, the right side of her body was weakened (hemiparesis), and she was discovered to have developed a number of special learning needs.
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Susan’s neuropsychologist referred the child and her family to Making Headway, where they were introduced to Education Specialist Patricia Weiner, a member of our Ongoing Care Team. This was the start of a relationship that would last for many years. Ms. Weiner helped the anxious parents understand Susan’s changing needs, the services available to address these needs, and how best to obtain those services. She joined the family in working with teachers and special educators, as well as physical, occupational, language, hearing, and vision therapists.

From elementary through high school, Ms. Weiner continued to assist Susan’s family at dozens of meetings at school and with the Department of Education. She repeatedly observed in Susan’s classrooms to ensure that her needs were being met. Susan’s family remained very involved as well. Over the course of Susan’s schooling, over 200 educators played a role in helping her achieve success. Susan was still a bright and determined child, and with the help and support of all these adults she was able to compensate for many of her impairments.

Not long ago, Susan graduated high school with honors, and today she is attending community college. She’s doing quite well, but Making Headway Foundation will always be there for her if she needs us.