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.

Ellen

Ellen


Ellen was diagnosed with pilocytic astrocytoma (optic tumor) in 2005 at the age of 10 months. Her treatment included multiple surgeries, intensive chemotherapy, and radiation therapy. She suffers from multipole late effected as a result of her diagnosis and treatment, including diabetes, ACTH deficiency, growth hormone deficiency, kidney disease, neurocognitive dysfunction, and serious visual challenge. During elementary school, she demonstrated significant delays in reading comprehension, math, writing, and attention.
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Over the years, Making Headway has worked with the family to ensure a number of special resources are provided, including vision support, physical therapy, small group classes, counselling, and assistive technological tools. As Ellen moved into middle school, it became more evident that a specialized school would be required to meet her physical and educational needs. The family had to start considering Ellen’s long-term goals, including what life would look like after high school. Making Headway helped the family identify schools with hybrid programs that could offer academic learning with the latest technological tools (Ellen is legally blind) as well as life preparedness training so that she can achieve the highest level of independence as she enters adulthood.

Like many children who survive a brain tumor, their needs are constantly changing. The Making Headway On-Going Care Team understands the need to provide what is needed today, while developing a flexible and long-term plan. Children like Ellen would never have a chance to succeed, if not for the dedication and support of her family, her teachers, and everyone who supports the Making Headway Foundation.

Henry

Henry


Henry’s brain tumor was discovered just before his fourth birthday and it required intensive treatment. Unfortunately, the very treatment that saved his life also left Henry with a host of challenges, including memory deficits, difficulties with executive functioning, language and motor skills problems, and more. When he reached second grade, Henry was introduced to Making Headway, where he and his family met Education Specialist Dr. Susan Leslie.
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Once Dr. Leslie had helped the family understand the various services that could make a significant difference for their son, they concluded that their local school district would not be able to provide what he needed. With Dr. Leslie’s help, they explored neighboring districts, and the family moved in time for Henry to begin third grade at a new school. At that point, Dr. Leslie became an integral part of Henry’s school team, helping them develop strategies and accommodations that would foster his school success.

Henry is currently in ninth grade and doing remarkably well. With the help of continued language and academic support services, he is working at grade level. On track for an academic diploma, Henry has every intention of attending college. In the meantime, Dr. Leslie continues to be there for him, meeting with his family and the school team regularly to review and adjust his educational plan.

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.

You’ve Come a long way baby (Jake’s Story)

You’ve Come a long way baby (Jake’s Story)


YOU’VE COME A LONG WAY, BABY. The slogan—from a cigarette ad in the 70s—is now, thank goodness, very much outdated. But it can be used in a different context. Our son, Jake, has come a long way from when he was a 3-month-old baby in 1990 with a rare malignant brain tumor, to where he is today as a 30-year-old man. Yes, he has never spoken, and he is significantly developmentally delayed, but he has overcome many obstacles that most take for granted. Plus, he is the happiest person we have ever met.
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We will never forget meeting the late Dr. Fred Epstein, Jake’s surgeon. Leaning back in his chair with his cowboy boots on his desk, Fred confidently told us that he would likely be able to remove Jake’s tumor. Meeting Dr. Jeffrey Allen was also unforgettable. He laid out the facts. Jeff, despite all his experience, had only treated three kids with Jake’s tumor: one had passed, one was ok, and the other was somewhere in between. (Making Headway originated when Dr. Epstein, along with Dr. Allen, began the Institute for Neurology and Neurosurgery.) Jake was often a patient at NYU Hospital. The halls and rooms then were dingy. But that was where we met Maya Manley. She warmly greeted us and then suggested that we attend a meeting. That was the beginning of our partnership with Maya and Ed.

Over the past 30 years, advances have been made in the treatment of pediatric brain and spinal cords tumors—but baby, we still have a long way to go. Today, there are more than 28,000 children living with a brain or spinal cord tumor. Over 2,500 children are diagnosed every year (seven every day), and they are currently the leading cause of death among all childhood cancers! Pediatric brain and spinal cord tumor achievements have not kept pace with other areas of oncology, where great strides have been made.

Every day when we are with Jake, we are reminded how lucky we are! We want many more children and their families to feel as lucky (and even luckier). While Jake was never able to go to college, how great is it that among the myriad things that Making Headway funds, we grant college scholarships for brain tumor survivors. Who knows, maybe one of them will become a leading scientist or philanthropist in this fight. In the meantime, help us now, by contributing to Making Headway. It would be the best possible 30th birthday present for Jake (and us).

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.

Survivors Reunited (Julia & Christine’s Story)

Survivors Reunited (Julia & Christine’s Story)


When I was four and a half months old, I was diagnosed with a low-grade optic pathway glioma. My parents took me to NYU hospital were they met Dr. Epstein and Dr. Wisoff. They were confident that my tumor would be able to be treated through surgery and then chemotherapy. Eighteen and a half months later, with the grace of God and medicine I was able to overcome my brain tumor. Unfortunately, I did suffer vision loss in my right eye and am visually impaired in my left eye.
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Growing up in school was a challenge, to say the least, for me. The other children did not understand what it was like for me to have a disability. They would tease me about my vision and surgical scars to the point where I was bullied all the way through middle school. There were times that the teachers did not know what to do or how to help me to succeed in my work. At times, it felt impossible to get through school, but my family lifted me up, were always there for me, and told me to never give up. Years later, while I was at Caldwell University, my life had changed for the better. I began to pursue my degree in communications and vocal performance. It was at Caldwell that the most amazing thing happened…

Julia and Christine Together Again We were both in the same school where we had met one night in the music wing of the college. What we did not know was that we had met before, twenty-two years ago. One day, we just began talking and I mentioned to her that I was visually impaired from a brain tumor. At that point, Christine informed me that she had a brain tumor as a baby, as well. I asked her where she went for treatment, she said, “NYU.” I asked, “Do you know Dr. Allen?” She nodded her head and asked, “Maya?” We began to cry and called our parents. My mother was at work when I asked, “Hey Mom, do you know a Christine from when I was at NYU?” She responded, “Yes! You girls were roommates in chemotherapy…! She was having a bagel and you were having your bottle!” I said, “Oh my god! We both go to Caldwell U!” It just felt like something out of a movie! I mean, how often does a miracle happen in a lifetime? I survived a brain tumor that was almost impossible to overcome and I made a great friend who knows what this feels like. I really do believe that God puts you through things for a reason.

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.

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.