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.

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.

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.

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.

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.

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.

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).

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.”

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.
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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.

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.