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.

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.

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.

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.

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.

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.

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.”