Sydney Bjornberg
As many of you know, I run my marathons in honor of individuals or organizations. For the Oklahoma City Memorial Marathon I will be running in honor of a special 12 year old girl named Sydney Bjornberg. Please read her story from her mother Michelle.
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As parents our children are our greatest joy and inspirations. In a moment, our world can change when a family is given devastating news that they are in a battle with an enemy.
On May 21, 2012, a vibrant, beautiful, smart, funny eleven year old girl named Sydney Bjornberg was diagnosed with a rare, terminal brain tumor – diffuse intrinsic pontine glioma (DIPG). Sydney was a healthy, normal 11 year old who loved swimming, riding her bicycle, snow skiing, playing with her brother and hanging out with her friends. DIPG slowly took away all the things Sydney loved to do. The everyday activities we so easily take for granted like walking, reading, even brushing her teeth became arduous tasks. Her life became compromised by this very dark monster.
Bravely, Sydney fought this DIPG tumor for thirteen months until, like all the other 200 or so children in the United States that are diagnosed with DIPG, she died on June 26, 2013. Sydney's life was tragically shortened even though her parents and doctors did "all they could do" with the resources they had. The" treatment" plan for this rare and deadly cancer is about the same for all children diagnosed with DIPG and it goes something like this: intense radiation, steroids, chemotherapy, possibly an entrance into a new medical trial to try the latest chemo drug until MRI results show growth of the tumor and then death. By using the methods described above the only hope is to keep the tumor from growing thus giving the child more time. However due to the aggressive nature of DIPG even with medical intervention the average life expectancy is 7-9 months. The tumor is enmeshed in the brain steam and it is inoperable. Because the brain stem is the oldest part of the brain and the circuit board to our body's movement and function, many pediatric brain cancer specialists believe that a cure for DIPG is the gateway to curing many other types of cancer.
Over the last three years, doctors in cities like Boston, Houston, Dallas and Cincinnati have begun research efforts to find a cure for DIPG, knowing no child should have to live with this diagnosis as a death sentence. The Forever and Always Believe Foundation was established, with support from Wipe Out Kids Cancer, to support and fund this research.
A few key facts about DIPG:
· DIPG is a very rare pediatric brain tumor located in the pons (middle) of the brain stem. The pons controls breathing, swallowing, as well as movement in the face, head, arms and legs.
· The cause of DIPG is unclear however researchers believe DIPG could be caused by chromosomal and genetic abnormalities.
· DIPG impacts approximately 200 children per year in the US between the ages of 4 and 12
· The tumor is inoperable because it integrates into the nerves that control the “thinking” part of our brain.
· Surgery is not an option and the only temporary treatment is radiation.
· The average life expectancy upon diagnosis is 7 to 9 month. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
· In 30 years no treatment has been able to extend a child’s life beyond 1 to 2 years.
· Sparing the child’s cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. All while the child is fully aware of their decline often until their last day.
Consider the Following:
· Lung cancer has a survival rate of 80% if caught in the early stages to less than 5% if caught in stage 5.
· Breast cancer has typically an 80 -90% survival rate.
· Leukemia has a 48% survival rate.
· Less than 10% of DIPG children will live longer than 18 months from diagnosis. Survival is even more rarer.
· 5 to 10 of every 100 brain tumors is a DIPG.
· Cancer is the #1 cause of disease related death for children.
