A New State of Mind

“So here we are… St. Jude’s, Memphis Tennessee.  Our temporary home state and our new treatment state of mind.”  Cristina Bravin, a Farmingdale resident and mother of two wrote on her CaringBridge website after arriving at one of the most renowned researched pediatric facilities, St. Jude Research Hospital.  Her five-year old daughter, Valentina, had been diagnosed with Diffuse Intrinsic Pontine Glioma, an untreatable tumor located in the middle of the brain stem.

 Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons of the brain stem, which is the bottom, most portion of the brain connecting the cerebrum with the spinal cord.  The brain stem contains all of the “wires” converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.

In April 2011, Cristina and her husband, Erik noticed a slight change in Valentina’s eyes as well as her mood.  She would blink only one eye at random and at times appeared to be a little cross-eyed.  They also noticed that she seemed to lose interest quickly in activities and almost seemed depressed.  After a visit to an ophthalmologist for an eye exam, the doctor noticed that Valentina was having difficulty turning her right eye outward and stated that an MRI of the brain was necessary.  The doctor explained Valentina had Right or Abducens Nerve Palsy, and an MRI was scheduled for July 21, 2011.

After arriving at Cohen‘s Children‘s Hopsital in New Hyde Park, New York, Cristina and Erik received the shocking news of Valentina’s DIPG diagnosis.  Due to the sensitive location of the brain, the doctors had originally informed the Bravin’s that they would not be able to surgically remove the tumor.  They told them the odds were not good and standard care of radiation and chemotherapy could help buy Valentina some time and “quality of life.”  With that, Cristina and Erik began a frantic search for answers, better doctors, and a better way to treat their beautiful daughter and save her life.

When family and friends heard the devastating news, they began reaching out via e-mail, phone, text, and mail.  Cristina and Erik were unable to answer every call or message because they were focusing all their energy on selecting a treatment for Valentina as well as keeping up with everyday tasks.  As a result, Cristina set up a website through a nonprofit organization, CaringBridge, to post journal entries and keep loved ones informed during this significant health challenge.

Cristina began posting journal entries, which included details of Valentina’s progress as well as recommendations from hospitals and doctors all over the country.  Doctor’s had said they would review Valentina’s scans and call back.  Cristina described the process, “sort of like an NFL draft…whom ever presents us with the best deal can expect us to sign a contract.”

Valentina was put on the steroid, Dexamethasone which led her to go on an eating binge and gain weight.  She visited several hospitals and received 30 radiation treatments from August 18, 2011 until October 3, 2011 at MD Anderson Cancer Center in Texas.  After completing 30 radiation treatments, the Bravin’s said goodbye to their wonderful crew of radiation techs and favorite anesthesiologist duo.  After the treatment ended, Valentina followed MD Anderson tradition and rang the brass bell to signify her accomplishment.  Valentina kept asking when they were going to go home and Cristina replied “just a few more days.“  On October 12, 2011, the Bravin family arrived home and both Valentina and her younger brother, Gianluca, were excited to be in their old, familiar surroundings.  After a follow-up MRI on November 8, 2011, the report stated that the radiation did its job with no permanent side effects.

Unfortunately, the most recent MRI report of January 2012 indicated disease progression as well as spreading into the cervical spinal cord and other local areas of the brain and auditory canal.  The family was completely blindsided and Cristina stated, “The shocking MRI results set us back emotionally…it was certainly a hard pill to swallow.  But, it is just that – a set back.  We firmly believe we can overcome this.”  Cristina and Erik’s perseverance and positive attitudes shine through as they continue to search for answers and do everything in their power to save Valentina.  Despite these traumatic circumstances, Valentina remains cheerful as always.

After a bad reaction to an attempted treatment on February 15, 2012 at Memorial Sloan Kettering in New York City, the Bravin’s decided to take a break and reevaluate their options.  They decided to look into the St. Jude Protocol Phase I Study of Platelet Derived Growth Factor Receptor (PDGFR) Inhibitor Crenolanib.  It seems as though Valentina was a perfect candidate and Cristina and Erik decided to give it a try.  “She is a brave little girl and we are thankful to have the opportunity to be here,” Cristina said of Valentina’s arrival into St. Jude.

The entire journey has been extremely overwhelming but luckily Valentina has been a trooper through it all.  “My sassy little 5 year old swallows eight pills a day without giving me a problem.  I’m in her face, loading her eye with drops and ointment every hour and she rarely complains.  I am VERY thankful for that,”  Cristina explained. St. Jude has hopefully given this incredible family hope and a new state of mind.  “For now, we need to dig deep, have patience and try to reassure Valentina that things are going to be okay.”

Help Save A Life

Diffuse Intrinsic Pontine Glioma is a new and very special cause that the Delta Chi Chapter of Alpha Sigma Alpha is trying to raise money for because one of the sorority sister’s family friends has recently been diagnosed with it– a five-year-old little girl named Valentina. This disease is a brain tumor located near the brain stem, thus the doctors cannot surgically remove it. As you can imagine, the effect this diagnosis that the family received was shocking. Alpha Sigma Alpha is trying to raise money for this family to find ways to help this little girl beat the tumor.  In early October 2011, the sisters of Alpha Sigma Alpha put together a car wash to help raise money and support for little Valentina.  With the help of generous Bloomsburg townspeople as well as students from the University, they successfully raised $84.50, which they donated through the CaringBridge Website.  Valentina’s parents Erik and Cristina are very grateful for donations to help further research DIPG and help find a cure for Valentina.  Alpha Sigma Alpha continues to get involved to help raise awareness and support Valentina’s cause and have a lot of big plans for the upcoming semester.

 

St. Jude 2011 Commercial

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