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 The slogan—from a cigarette ad in the 70s—is now, thank goodness, very much outdated.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).

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.

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.

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.

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

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.

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."
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“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/]

Henry

Henry


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

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

A 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.
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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.

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.”