Sarah was energetic, creative, imaginative and original. She did things her way and loved to be in motion. She had a million ideas all the time. She loved to be with people. She never wanted to be alone, even when she slept.
Three months before diagnosis she began having fears about going to sleep. She was afraid of burglars, zombies, of throwing up but most of all she was afraid of dying. As she started second grade in 2014, she became increasingly clumsy and uncoordinated. She also over-filled her mouth and gagged on her food regularly. Then in October she fell over as she bent down to pick a toy up off the floor. After hearing her symptoms, the pediatrician’s office made us an appointment for the next day. The doctor sent us to a neurologist that afternoon and an MRI was scheduled for the following day. While Sarah was recovering from the anesthesia, the neurologist at Children’s National Medical Center was on the phone asking us if we wanted to come to the hospital that evening or wait until the next morning. Sarah had a mass in her brain and he needed to talk to us in person. Boom, like that we were in the cancer universe.
He gave us the specific diagnosis the next morning-DIPG, diffuse intrinsic pontine glioma. It’s a death sentence for all but the tiniest miraculous fraction of children. The other 99.9 percent die within 2 years of diagnosis and most die within 6-12 months. All treatments are considered palliative. They can control symptoms and prolong life but are not curative. We decided to undergo radiation therapy and not to participate in any clinical trials. Sarah was adamant about not having surgery and we did not want to spend her precious time in hospitals getting chemo and lab tests that would not change the outcome by much. We wanted to make whatever time she had left as full of happiness and joy as possible. Many people helped us with our happiness mission. A fairy tale party on a farm was organized within a week of her diagnosis by friends of friends. The people hosting the party didn’t know Sarah but knew they wanted to help. We signed her up for Montgomery Kids Hospice shortly after her diagnosis both because we were not sure how much time she would have, and because she could get treatment while enrolled. The home visits by the nurses and the social worker really helped all of us. Their volunteers and chaplain were also great.
She began radiation treatments at Johns Hopkins in early November. Some kids’ symptoms diminish or disappear during radiation. Sarah’s got worse. Her left leg became weaker, she was less stable, her left arm became weak, the left side of her mouth leaked, her vision went double at times, her hearing and speech were impaired and she started having headaches when changing position or laughing. Some kids stop taking steroids during or after radiation. Sarah was still taking steroids to manage the inflammation in her brain and they were affecting her mood as well as her appetite. It would be July before she was able to end the steroids. In the cold, dark days of Winter Sarah focused on the positive and was our model when we felt despair. She always had hope and fully enjoyed what she could still do. Sarah completed radiation treatment on December 31, 2014 and rang the bell in the radiation center. We had a little party at home with a friend and started 2015 with Sarah using a wheelchair to get around.
Right after radiation, she was not feeling well and wasn’t interested in having new people visit, but we needed some down time and she needed someone else besides Mom and Dad entertaining her. A friend of ours knew a woman whose son had a brain tumor. The mother and son came over to visit and helped us tremendously. Her son gave us good ideas for how to make hospital days more fun and his mom even drove us to a radiation treatment. She also connected us with Chai Lifeline, a service organization for Jewish kids with cancer or life-threatening conditions. As Sarah started to feel a bit better, she developed a friendship with the social worker from Montgomery Hospice. Sarah started to look forward to her visits.
We had to bribe Sarah to agree to meet the Chai Lifeline volunteers at first. It helped that her volunteer enjoyed being silly, playing games, and singing Maroon 5 songs. Of course, Sarah loved the visits and starting asking every day when she would be coming back.
In March 2015, Sarah began getting a drug called Avastin through an IV at Childrens National Medical Center. About the same time, she started taking an anti-depressant to counter her anxiety, which was at least partly steroid-induced but also related to her situation. Just because she wasn’t talking about being sick and dying didn’t mean she wasn’t thinking about it. The two drugs worked wonders for her. Her headaches went away almost entirely and she became her cheerful, funny self with lots of ideas and wanted to get out and do things again.
Sarah had an amazing summer. She went on outings and to the pool, and we went to a family camp in Maine for four days. Her cousins from Switzerland also came to visit for 3 weeks in July. Her older cousin saw the humongous Olaf snowman that was one of several given to Sarah at the holidays in 2014. Her cousin loves Olaf and so Sarah loved Olaf and the Olaf Squad was born. Julia took the humongous Olaf home with her and Sarah took the next biggest one to Camp Simcha with her in August. And the snowball that is Olaf started to roll down the hill.
Camp Simcha was Sarah’s first time sleep away camp and the experience was so positive for Sarah it’s hard to describe. She had someone paying her attention just about all the time and lots of choice about what she could do each day. She had lots of girls to socialize with, both her age and older, kind of like the big sisters she had always wanted but with only the best aspects of big sisters. Olaf went with Sarah most places at camp and she began to collect many Olafs of different sizes as well as Olaf toys, books and clothing. She loved all of it. She loved the attention.
Sarah went back to school in August and was relieved to learn that she would be in third grade, despite having missed all of the last year. She didn’t go for the whole day, but started with recess and stayed for the afternoon including her favorite art class. Her ninth birthday in October was a week long celebration with a visit from a mobile petting zoo, a party at Chuck E Cheese, a living room dance party, a visit to a beauty salon, and a party for her whole class hosted by the mother of one of her classmates.
Late in 2015 we could see that she was obviously weaker and she spoke more slowly than during the summer. She had to concentrate to speak clearly. The length and complexity of her conversations decreased. Her MRI in late October showed growth of the tumor and her doctors prepared us for a rapid decline. A month later she was pretty much the same and had spent a weekend in Nova Scotia visiting family. She had also gone to a sleepover at the home of her Chai Lifeline friend and was over the moon with joy about that.
She was cleared to go on a four-day trip to Orlando with Ohr Meir Foundation and Chai Lifeline in early December 2015. She went on the plane without us for the first time. At Disney World she went on a roller coaster for big kids. She had grown out of a childhood fear and had accomplished an important goal for herself. That trip to Florida was the highpoint of her life we believe.
Her fatigue and weakness increased slowly as 2016 began. She did not return to school after winter break. She began having difficulty with utensils and chewing. She moved to softer foods and let us help her eat. She started taking naps during the day and spent more time in bed watching videos with her cats.
She did return to school for her class’s Valentines’ Day party because she wanted to see her friends and she knew there would be candy. She didn’t talk much that day and she was exhausted by the time she got back home, but she was determined to be there. That was her last visit to her school.
She became unable to talk in late February and then lost the ability to hold her torso up. Next she lost the ability to hold her head up. She slept much of the day and couldn’t swallow very well. She also became unable to use her right hand very much so her ability to manipulate her tablet computer was diminished. By then she was too tired to watch videos for long.
We told her it was okay for her to leave us. We told her we would miss her but we would be okay and we understood that she had to go away from us. We told her we would always love her and knew that she loved us. She seemed to lose consciousness on the evening of April 2nd and didn’t regain it before dying the next morning. Our funny, happy, dynamo of a girl was still and silent.
Now she is our legend and we wish for others to hear her story and learn from it. Learn to see the goodness in their children and the preciousness of each moment with them. Learn that love is the way to live. Learn how DIPG starts and how to stop it for good.
Submitted by Sarah’s Parents, Kathy & Sam