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.
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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.

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.
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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.

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.

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.

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.
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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

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.

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.

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.

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.

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.