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.

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.

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

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.
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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.

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.

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.

Bjorn

Bjorn


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

Susan

Susan


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

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

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

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.

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.