Danielle's Story
Danielle is the sweet, loving, happy little 7 year old daughter of Bellevue Dayton Firefighters Robby and Jennifer Duke.
Danielle has never really complained about anything until early February 2016. She started to complain of headaches. Her pediatrician recommended Danielle go for a CT scan and MRI as a precaution. On May 4, 2016 she was taken for a MRI. The insurance initially denied coverage because they thought it was unnecessary. After some battling back and forth the insurance approved the MRI just the day before.
After the MRI, Jen, Robby, and Danielle sat in the waiting room for an hour and a half waiting for the results. Staff notifed them that it would be at least another 45 minutes before they would find out anything. That is when the worrying really set in. Finally after the long wait they were taken to Radiology doctor. He gave the family the news. They found a tumor in Danielle's brain that was blocking the flow of her Cerbral Spinal Fluid. This was causing a build up of pressure in Danielle's head that caused her headaches. Danielle was immediately admitted to Children's Hospital and the Neurology team was going to meet with the family shortly.
The family was told Danielle would need surgery to reroute the CSF and that should fix the swelling in her brain. The surgery called for a small puncture hole through her membrane on the other side of her brain stem. The surgery was scheduled for May 6, 2016.
A second surgery was scheduled May 9, 2016 to attempt to remove the tumor and perform a biopsy. This surgery lasted approximately 8 hours. The surgeon informed Jen and Robbie that they were unable to remove the entire tumor because it is attached to her brain stem and cerebellum. Danielle would now need MRI's every 3 months for at least a year to monitor the tumor and to make sure it does not grow.
Danielle spent 3 days in the PICU. She was unable to speak other than grunting due to damage to her brain cells from surgery. She was also unable to stand on her own, walk, and had problems sitting up. The doctors said this could last weeks or up to 6 months and there was a possiblity she could never get those functions back. Danielle had to go through rehabilitation and the family had to find new ways to communicate with Danielle. Danielle was frustrated and tired. After 2 weeks, Danielle slowly began to regain her speech. It took 24 days for her to regain her strength and she still continued therapy 2 days a week at Drake Reheb Hospital.
Danielle had a wonderful summer after being released. Recovery seemed to go much faster when she came home. She was happy to see her dog and play with her friends again. In August, Danielle entered the 2nd grade. She still has some issues with comprehension since her brain was still healing.
Danielle went for her 3 month MRI in early October. Jen and Robby were faced with more devastating news. The Neuro Oncologist informed them that Danielle's tumor has grown significantly and very quickly over the last 3 months. The Oncologist suggest 12 weeks of chemotherapy. On October 25th she had a port placed and the next day Danielle started her first chemo treatment.
After Danielle's 3rd treatment her immune system was compromised. She could hardly get out of bed for a week. Danielle had to stop taking one of her chemo medications due to a bad reaction. This has set her treatments back and has extended the time longer. Danielle is now also losing her hair, it is coming out in hand fulls. She does not get another MRI until mid January to see if the chemotherapy has slowed the growth of the tumor.
Update on Danielle:
January 26th was her MRI. the MRI showed the tumor is stable. Doctors were concerned with a little enlargement of her ventricles in her brain, but Danielle currently had a cold that could cause some pressure. Plan is to wait another 2 months and have another MRI. For the last 2 weeks, January 28th and February 2nd, Danielle's level have been to low for her to get any chemotherapy treatments.
Danielle has never really complained about anything until early February 2016. She started to complain of headaches. Her pediatrician recommended Danielle go for a CT scan and MRI as a precaution. On May 4, 2016 she was taken for a MRI. The insurance initially denied coverage because they thought it was unnecessary. After some battling back and forth the insurance approved the MRI just the day before.
After the MRI, Jen, Robby, and Danielle sat in the waiting room for an hour and a half waiting for the results. Staff notifed them that it would be at least another 45 minutes before they would find out anything. That is when the worrying really set in. Finally after the long wait they were taken to Radiology doctor. He gave the family the news. They found a tumor in Danielle's brain that was blocking the flow of her Cerbral Spinal Fluid. This was causing a build up of pressure in Danielle's head that caused her headaches. Danielle was immediately admitted to Children's Hospital and the Neurology team was going to meet with the family shortly.
The family was told Danielle would need surgery to reroute the CSF and that should fix the swelling in her brain. The surgery called for a small puncture hole through her membrane on the other side of her brain stem. The surgery was scheduled for May 6, 2016.
A second surgery was scheduled May 9, 2016 to attempt to remove the tumor and perform a biopsy. This surgery lasted approximately 8 hours. The surgeon informed Jen and Robbie that they were unable to remove the entire tumor because it is attached to her brain stem and cerebellum. Danielle would now need MRI's every 3 months for at least a year to monitor the tumor and to make sure it does not grow.
Danielle spent 3 days in the PICU. She was unable to speak other than grunting due to damage to her brain cells from surgery. She was also unable to stand on her own, walk, and had problems sitting up. The doctors said this could last weeks or up to 6 months and there was a possiblity she could never get those functions back. Danielle had to go through rehabilitation and the family had to find new ways to communicate with Danielle. Danielle was frustrated and tired. After 2 weeks, Danielle slowly began to regain her speech. It took 24 days for her to regain her strength and she still continued therapy 2 days a week at Drake Reheb Hospital.
Danielle had a wonderful summer after being released. Recovery seemed to go much faster when she came home. She was happy to see her dog and play with her friends again. In August, Danielle entered the 2nd grade. She still has some issues with comprehension since her brain was still healing.
Danielle went for her 3 month MRI in early October. Jen and Robby were faced with more devastating news. The Neuro Oncologist informed them that Danielle's tumor has grown significantly and very quickly over the last 3 months. The Oncologist suggest 12 weeks of chemotherapy. On October 25th she had a port placed and the next day Danielle started her first chemo treatment.
After Danielle's 3rd treatment her immune system was compromised. She could hardly get out of bed for a week. Danielle had to stop taking one of her chemo medications due to a bad reaction. This has set her treatments back and has extended the time longer. Danielle is now also losing her hair, it is coming out in hand fulls. She does not get another MRI until mid January to see if the chemotherapy has slowed the growth of the tumor.
Update on Danielle:
January 26th was her MRI. the MRI showed the tumor is stable. Doctors were concerned with a little enlargement of her ventricles in her brain, but Danielle currently had a cold that could cause some pressure. Plan is to wait another 2 months and have another MRI. For the last 2 weeks, January 28th and February 2nd, Danielle's level have been to low for her to get any chemotherapy treatments.