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.
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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).

Arianna

Arianna’s Story


Arianna is 10 years old girl who was diagnosed with medulloblastoma several years ago. After her diagnosis, she was initially seen by (the Making Headway Funded) Educational Coordinator at NYU, Julia Gomez, for screening during a post-treatment follow-up visit. During the time of Arianna’s initial diagnosis, in 2018, Julia had swiftly coordinated meetings between the parents and the school team to get home instruction set up immediately. This allowed Arianna, a strong student who was upset by the idea of missing out on schooling, to continue with her studies with a program designed specifically to work around her medical appointments and the experienced side effects. With this support, Arianna was able to grow academically at the same rate as her peers and re-integrate into her gifted and talented program as soon as her medical providers allowed.
Read More/Less

More recently, Arianna’s parents had begun to notice some impact from her treatment including slowing processing speed, trouble completing tasks independently, and difficulty keeping up with her workload (all common issues facing brain tumor survivors). With Julia’s help, Arianna received full neuropsychological re-evaluation with Dr. Sara Powell, whose position is also partially funded by Making Headway. The results indicated that she had generally tolerated the treatment quite well though subtle difficulties were identified that would make learning and school somewhat more challenging. Specifically, Arianna demonstrated subtle weaknesses in attention, processing speed, poor vigilance (trouble sustaining mental stamina over time), and need for repetition of information to commit information to memory. Recommendations were made to the school, but their staff were reluctant to implement the services recommended by the evaluation. The importance of having someone like Julia, who is an expert in brain-behavior relationships and the implications of medical treatments, is crucial in making the case for academic and emotional support. Effects of radiation treatment can emerge over the years, becoming more pronounced as time goes on, and thus quick intervention is crucial to identify the related areas of decline as they appear. Swift intervention can provide a child with appropriate services to mitigate any school failure and decrease in self-esteem.

After obtaining the re-evaluation results, Julia went to work to help advocate for the need for additional services. Julia walked the family through the process of getting an individualized educational program with appropriate support and wrote a letter to the Department of Education. Unfortunately, the school initially pushed back on several of the services the team thought were necessary. Julia engaged in many educational meetings with the school social worker in order to explain how Arianna’s difficulties perfectly aligned with expected treatment effects of radiation. While Julia was able to get many supports in place (specialized instruction, occupational therapy, etc.), the school remained hesitant about implementing other services. Julia brought in Dr. Powell to help and they explained, from both the medical and educational perspectives, the critical need for these services. Ultimately, the school team agreed to the recommendations set out in the neuropsychological evaluation. Arianna was recently seen for follow up with Dr. Powell for a check in and is doing quite well. She has made excellent use of the supports and no longer feels stressed and upset by school. Thanks to her own hard work, the efforts of her parents, and the dedication of two members of the Making Headway Ongoing Care Team, Arianna is managing her workload and her mood has improved drastically.

A Journey of Hope (Johanna’s Story)

A Journey of Hope (Johanna’s Story)


I remember well the first time we met Maya in the playroom at the Institute for Neurology and Neurosurgery at Beth Israel North. Our local pediatric neurosurgeon out on Long Island had referred my youngest daughter, Johanna, for consultation with Dr. Jeffrey Allen and the late Dr. Fred Epstein. We were newly seasoned parents; Johanna having had six brain surgeries before she turned a year old, the first one to resect a brainstem mass when she was a 12-week old infant. She needed a shunt placed before she was four months old.
Read More/Less

That first year, November 1996-97, was a blur as we balanced raising three older children (3, 6 and 9) and caring for our critically ill baby. But New Year 1998 rang in with a bang as we rushed Johanna to the ER with signs of pressure building, only to find out that she had multiple bleeds in her brain. After undergoing an MRI, she was diagnosed with multiple cavernous angiomas—benign lesions that multiply, hemorrhage, and grow. The only cure was surgical resection of troublesome lesions—an approach that would lead to multiple craniotomies, complications, strokes, and seizures for our little girl.

Meeting Maya Manley was a godsend for my husband and me and all our four kids. (We kind of traveled as a pack.) She introduced us to other families and took all our kids under her capable care as we met with the doctors to discuss this new diagnosis and surgical plans. Our kids—my son and his three younger sisters—all loved Maya. She made them feel welcomed and important and she was interested in their lives outside the whirl of hospital stays and surgeries. Maya helped us all feel better about this crazy new life we now lived and creatively helped us to forget about the trials by offering a cup of tea, an attentive ear, and chocolate!

Years later and after a diagnosis of a rare genetic disease—CCM3—we divided our time and Johanna’s care between NYU and a local hospital on Long Island. The kids loved our trips to NYC the best. The patients and families, nurses and some doctors came and went, but one of the constant joys in this walk has been Maya’s smiling face in the playroom and the wonderful support we’ve received from Making Headway Foundation.

Founders and friends, Maya and Edward Manley, are among the most gracious and caring people I have ever met. Through the years, our family has participated in field trips like the cruise, theater performances, parties and fundraisers, which all helped to connect us to others who were on a similar journey. The families, the Manleys, the staff, and volunteers of Making Headway all made us feel normal and welcomed, reminding us that we were not alone.

Over twenty years and a hundred surgeries later, Making Headway is still making a difference in our lives. As the gap widens between Johanna’s chronological and developmental age, there are a few things that remain the same. Maya’s fun projects and caring presence (and chocolate!) are among our sweetest consolations. And then there is always—Maya’s smile.

Standing Up (Michael’s Story)

Michael’s Story


My parents told me I swung my four-year-old feet to the side of the bed. I watched my legs dangle, while they held my IV tubes to follow me. Although I had been recuperating from emergency surgery (due to a complication during my radiation therapy), it was time to see if I could walk by myself. My parents said I had become weaker, trembling as they supported me, but I stood up.
Read More/Less

hope and help. Someone had once given me a little card with the poem “Footprints in the Sand.” I read it, probably like anyone reads it for the first time, and was surprised by the ending— because you do not see it coming when you read it for the first time. As a glioblastoma brain tumor survivor, I have many challenges. We all need to be carried sometimes, but on occasion, we have the ability to stand up and carry others.

Making Headway exists because it has understood this all along. When I trace my cancer journey, I see how Making Headway has been there to comfort, to educate, to encourage, and to celebrate everyone walking this particular journey. To make progress, you need to walk forward, but to make headway, you need others.

I have remained in remission since my treatment in 2005. However, I have suffered cognitive and physical deficits, including mild hemiparesis, from the trauma of this diagnosis. By surviving, my responsibility is to reveal my purpose, with gratitude. Now eighteen, I am so appreciative and excited to be attending college. I have much to accomplish, so I am using my inner strength and gratitude to ensure that I can land on my feet—because when I do stand up, my diligence delivers, my tenacity triumphs, and I rise to overcome my challenges. Grateful for how Making Headway has carried me through, I smile knowing that sometimes I can feel sand under my feet.

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.
Read More/Less

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.

Molly

Molly


Molly was a bright young elementary school student who excelled academically and was well-liked by her teachers and other students. One day she began feeling very sick and her family rushed her to the doctor. Molly had a brain tumor and required complex neurosurgery.
Read More/Less

Molly was lucky that the doctors were able to successfully remove her tumor, and she made further progress with the help of chemotherapy and radiation. However, Molly was left with permanent side-effects that impacted her speech, hearing, and cognitive abilities. Her school was not equipped with appropriate programs or services to provide for what she needed. Her family realized they would have to find her another school, and they were referred to Making Headway Education Specialist Patricia Weiner, who has been helping Molly ever since.

Finding the right school in a huge city can be daunting in any situation, let alone one in which there are so many special education considerations. As Molly recuperated, she was provided with home instruction. In the meantime, after spending some time learning about Molly’s issues and the family’s preferences, Ms. Weiner began researching schools and programs, eventually finding one that suited everyone’s needs. Then, she worked with the school, attending meetings and advocating for Molly, to ensure the appropriate services were in place.

As Molly grew, Ms. Weiner continued to ensure she received all the complex services, accommodations and equipment she needed. In Molly’s case, this included a one-on-one health paraprofessional; hearing and vision education services; physical, occupational, speech and language therapy; assistive physical education; a special type of hearing aid; large print books, and special homework preparation. Ms. Weiner even identified a service coordinator who could help Molly obtain a half-fare Metrocard and door-to-door school transportation.

The result? Not only did Molly graduate from High School, but she was the proud recipient of a New York State Regents Diploma, a major accomplishment for any child with special health care needs. She is now attending a special post-high school transition program, and Making Headway has arranged for another expert consultant to help her explore college options and find one that is just right for her.

Martin

Martin


Martin’s brain tumor, diagnosed when he was just two years old, resulted in brain damage that led to a variety of learning disabilities. When he reached elementary school age, Making Headway education specialist Dr. Susan Leslie, and other members of our Ongoing Care Team, worked closely with Martin’s family to ensure he would get the best education possible.
Read More/Less

Dr. Leslie quickly became an integral part of Martin’s local public school team. Over the years, she helped his educators carve out a streamlined program for the boy that emphasized basic academics as well as independence, safety, and life skills.

When Martin turned 18, Dr. Leslie identified a residential program for him that focused on functional life skills and job training, and his local school district agreed to finance his stay there until the age of 21. Martin has just completed his first year at the program, and has transitioned very well. He has made friends, learned how to manage public transportation on his own, and is enjoying the independence of living apart from his parents. He is also exploring a variety of future employment opportunities.

Martin has made great strides toward overcoming his disability, and he and his family are pleased to be able to envision a happy, independent future for him.

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…”
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.

Eve

Eve (written by her mom)


"I would like to thank you and let you know how much I appreciate how seriously you took Eve‘s case from the first moment we spoke, and for your dedicated efforts to align us with an advocacy team. Susan Luger and Associates {Making Headway’s Educational Advocates in NYC} reached out to me within hours of our last conversation. It was immeasurably reassuring to speak with representatives there who conveyed concern and the desire to expedite Eve’s case. Our follow-up consultation, attended by several of their associates, was professional, insightful, and immensely validating."
Read More/Less

“Our meeting was attended by RIta Ashdale, who became Eve’s advocate. She was phenomenal. Rita spent countless hours on the phone with me in order to educate me on Eve’s rights, specific educational needs as interpreted by her neurocognitive and psychological evaluations, and the numerous ways in which Eve’s academics had been gravely neglected. Her preparation for Eve’s IEP meeting was unbelievable, and her performance therein rendered the school personnel lacking greatly for explanations as to their treatment toward Eve, or appropriate measures to remedy her situation. The resultant agreement made between ourselves and the school is that they will refer her to the CBST so that she may receive a private school education in a nurturing setting.

“After struggling with the DOE for nearly 5 years on Eve’s behalf, we felt defeated and nearly gave up hope. When Eve learned that she would not have to continue at the school, however, and will attend a place that will support her in the future, a heavy weight was visibly lifted from her. Eve has been elated ever since and resembles much more the carefree and happy child I used to see.

“I struggle to fully express how grateful I am to you and the Making Headway Foundation, who have continually offered such beautiful programs and support to children that have suffered so much. Eve feels like she has been given a second chance at a future, and beams when I tell her that she is supported by a team of people that revere her and all the children who have likewise battled brain and spinal tumors.”

[Written by Eve’s Mom to Making Headway after her family received comprehensive educational advocacy support. For more family stories, visit https://makingheadway.org/children/]

The support we need (Cairo’s Story)

The support we need (Cairo’s Story)


When my son Cairo was diagnosed with learning difficulties I was overwhelmed. Trying to navigate “the system” and receive help for my son left me confused and feeling helpless. I knew my son could receive services provided by the Department of Education, even though I chose to send him to a private school. But when services began I didn’t know if he was receiving all that he needed in order to have a successful educational experience. I had no one to speak to or ask questions of. I felt like I was imposing on my son’s school because they are not a school designed for special education.
Read More/Less

When I became connected with Making Headway’s Education Advocate Patty Weiner, I felt a weight lift off my shoulders. Patty has been an invaluable resource. She has a tremendous amount of experience and connections and has helped me not only with the DOE (obtaining testing for my son and understanding the results) but also with my son’s school. Whereas in the past I would sit back and hope that the services my son were receiving were “good enough,” I now know that I have someone looking out for my son’s best interests and who will make sure that he is receiving all the services he is entitled to. I can’t thank Making Headway enough for providing this valuable resource to our family. —Kelley Archer

Nancy

Nancy


Nancy has a condition called Neurofibromatosis 1, which often causes tumors on the optic nerve, and Nancy is no exception. Tumors grew in her eyes early on, and following treatment she was left with learning disabilities as well as an array of physical problems, from speech and visual impairment to scoliosis. To complicate matters, Nancy’s family has had to move three times, each time landing her in a new school district. It was a great relief to Nancy’s family when they were referred to Making Headway.
Read More/Less

Through Making Headway, Nancy was able to work with Education Specialist Patricia Weiner, who provided the girl and her family with support and guidance. Ms. Weiner helped Nancy’s teachers and school administrators in each school and district understand her unique needs, and advocated to ensure she received appropriate services every time. An important feature of these services is large print textbooks and other resources to support her visual impairment.

With this strong, knowledgeable support, Nancy made it successfully through elementary school. She recently entered high school, where she continues to get the support she needs, and is doing very well.

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.
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.”

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.
Read More/Less

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.

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.
Read More/Less

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.