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…”
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.

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.
Read More/Less

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.”

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.
Read More/Less

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.

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.
Read More/Less

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.
Read More/Less

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.

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.
Read More/Less

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.