Welcome to the Brown's CaringBridge site. It has been created to keep friends and family updated about Delaney.
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Our story began about 7 weeks ago when we started noticing that Delaney had a slight limp. At first we thought nothing of it. We thought maybe her and Tyler were horsing around and she possibly hurt her leg or even slept on it the wrong way the night before. Little did we know that this was the beginning of our worst nightmare.
During the next several weeks we took Delaney to our pediatrician, to an orthopaedic doctor, to a pediatric orthopaedic doctor, and finally we arrived at Morristown Memorial Hospital where pediatric oncologists began testing her.
The doctors did blood work and an MRI that lasted hours (she had to be anesthetized). The blood test was not normal and the MRI showed activity in her bone marrow. The doctors suspected leukemia. We were in shock. Dr Miller (our pediatric oncologist) came in to talk to us. She said that Delaney had all the symptoms of acute lymphoblastic leukemia (ALL). At that point my world crumbled. All I heard was "two and one-half years of intense treatment", while Bobby heard "Delaney will graduate from high school, get married, and have a family of her own".
The doctors then took a bone marrow sample and performed a spinal tap. After waiting hours for the results, the doctor informed us that there was no sign of leukemia. We couldn't believe it; we had prepared for the worst.
Delaney was released from the hospital and we went home. Four days later, on Saturday, Delaney and Mommy both got a virus, and by Tuesday Delaney was again refusing to walk. The doctors told us to return to the hospital for more testing. They redid the bone marrow test, this time taking a sample from both hips as well as a bone chip. We waited anxiously all day for the results. Although the test results were inconclusive, the doctors were pretty sure she had leukemia or neuroblastoma (a rare childhood cancer). The next day they did a CAT scan of her body, looking for tumors. If they did not find a tumor, Dr Mahmoud said it would be leukemia. The presence of a tumor would indicate neuroblastoma. About an hour later Dr. Mahmoud came in and confirmed our worst nightmare: our little girl had a tumor on her kidney and was diagnosed with neuroblastoma stage 4.
What do we do now? There are only 650 cases of neuroblastoma diagnosed each year in the US. Although the doctors at Morristown Memorial were wonderful, they only treated 3-4 cases of this disease each year.
With the help of my sister Bevin and my Dad (doing research on the internet), we found that Memorial Sloan-Kettering treated more cases of this disease than any other hospital in the country. They have a whole team of doctors and nurses that only treat neuroblastoma.
On Monday Feb 16, 2009 we will go there where the fight for Delaney's life will begin. Keep us in your prayers. On June 12th -exactly 4 months since I was diagnosed I was declared NED. I went on to do radiation, low-dose chemo, and 3F8. As of December 2009 I am still NED...... On March 18th, 2010 Delaney experienced a small relapse on her skull. From March untill September of 2010 we continued to do chemo. As of October we started the Phase I Neuroblastoma Vaccine. She has finished the Neurblastoma Vaccine as of October 2011, and continues to be cancer free. We continue to have faith that she will be CURED forever.