JULIA'S JOURNEY
Julia was sick much of the early part of 2015, with symptoms that began as early-morning vomiting, fatigue and some complaints of minor headaches. After several trips to the pediatrician and a referral to a gastroenterologist, we began noticing that Julia’s smile was crooked and she was not using her left arm as much. She also had less energy and often looked tired. She missed a few days of school here and there on the days she vomited. Overall, she was not herself and our concern continued to grow as her symptoms did not exactly fit any of the illnesses for which the GI doctor wanted to test. On March 3, 2015, we rushed her to the Emergency Department at Children’s Hospital of Philadelphia (CHOP) after the school nurse called to say she was complaining of a headache and was having difficulty swallowing acetaminophen. The fifteen-minute drive to CHOP was terrifying; Julia was slumped over to one side and was very lethargic and could barely respond to questions. She was carried into the ED by her Dad where she was seen almost immediately. She was very agitated and the initial thought was that she was dehydrated given her recent history of vomiting. Unfortunately, we had a terrible feeling that was not the case. After fluids did not help, she was taken for a CAT scan and within minutes of Julia returning to our room, an ER doctor pulled us outside and confirmed our worst fears. Julia had a large tumor on the right frontal cortex of her brain.
Although a difficult diagnosis to grasp, we were told very encouraging news from the beginning. Julia’s neurosurgeon, Jay Storm, met with us in the ED soon after diagnosis and told us that Julia would be having surgery “during this hospital admission.” How did we send our daughter to school that morning and now we were talking brain surgery within the next day? Dr. Storm explained to us that he would be performing a procedure that evening to drain the fluid from the cystic part of the tumor which was worsening many of her symptoms. While she was under general anesthesia for this surgery, they would also be doing an MRI of her brain so that Dr. Storm could plan the surgery for the next morning to remove the tumor. Once this initial procedure was performed, Julia experienced some lessening of her symptoms and rested more comfortably overnight. When we explained to her that the doctors discovered what had been making her sick over the past several weeks and that they were going to do surgery to take out the tumor, she responded with an emphatic “Yay!” Julia has always been a very tough child and it was now evident that she had been feeling much worse then any of us knew.
The next morning Julia was put under general anesthesia again, and Dr. Storm removed the entire tumor over a 5 hour operation. Another MRI, post surgery, confirmed a total gross resection of a baseball-sized mass from inside Julia’s skull. We were told that based on the analysis of the tumor on the operating table, the doctors believed the tumor was a Juvenile Pilocytic Astrocytoma (JPA) or a Pleomorphic Xanthoastrocytoma (PXA). Both tumors are classified as non-cancerous and require surgery, but not chemotherapy or radiation, for treatment. Although, the tumor was considered non-cancerous, it was explained to us that Julia would be followed by a neuro-oncologist, Dr. Peter Phillips. We also learned that the location of the tumor was ideal and allowed Dr. Storm to operate and remove it successfully. Several doctors told us it was the “best case scenario.” We would have to wait up to 7 days to get the final diagnosis from the pathology lab, but Dr. Storm gave us very encouraging news about her prognosis, even stating that she would be back to all of her normal activities within a few weeks. We were so happy to hear this news, but Julia was not out of the woods yet.
The night following Julia’s surgery was also terrifying. Julia would be lucid and talking coherently one moment and then would be hallucinating and repeating words several times in the next moment. We were told by the nurses that it is difficult to define typical symptoms post surgery as it depends on where the tumor was located. The doctors ordered a CAT scan in the middle of the night to rule out a brain bleed. Thankfully, the CAT scan showed no evidence of a brain bleed. In the morning, the doctors ordered an EEG to determine if Julia was experiencing atypical seizures. Seizures are common symptoms of brain tumors and can also be a result of the trauma to the brain from brain surgery. Again, we got great news that there was no evidence of seizure activity. The hallucinations could have been caused by the steroids Julia was given to reduce the swelling from her surgery, the various medications used to sedate her and put her under anesthesia for the surgeries and MRI’s, the lack of sleep (Julia did not sleep more than 30 minutes straight the entire time she was in the hospital), or her brain moving back into place after the tumor was removed. Eventually, her symptoms dissipated and Julia has no known deficits from the tumor or the surgery. She needed some physical therapy for a few weeks and she continues with follow up MRI’s, even two years post surgery. Words cannot summarize our gratitude for the doctors, nurses and the rest of the staff at CHOP who treated Julia and who care for sick kids day after day, and our feelings that her full recovery was a miracle!
Although a difficult diagnosis to grasp, we were told very encouraging news from the beginning. Julia’s neurosurgeon, Jay Storm, met with us in the ED soon after diagnosis and told us that Julia would be having surgery “during this hospital admission.” How did we send our daughter to school that morning and now we were talking brain surgery within the next day? Dr. Storm explained to us that he would be performing a procedure that evening to drain the fluid from the cystic part of the tumor which was worsening many of her symptoms. While she was under general anesthesia for this surgery, they would also be doing an MRI of her brain so that Dr. Storm could plan the surgery for the next morning to remove the tumor. Once this initial procedure was performed, Julia experienced some lessening of her symptoms and rested more comfortably overnight. When we explained to her that the doctors discovered what had been making her sick over the past several weeks and that they were going to do surgery to take out the tumor, she responded with an emphatic “Yay!” Julia has always been a very tough child and it was now evident that she had been feeling much worse then any of us knew.
The next morning Julia was put under general anesthesia again, and Dr. Storm removed the entire tumor over a 5 hour operation. Another MRI, post surgery, confirmed a total gross resection of a baseball-sized mass from inside Julia’s skull. We were told that based on the analysis of the tumor on the operating table, the doctors believed the tumor was a Juvenile Pilocytic Astrocytoma (JPA) or a Pleomorphic Xanthoastrocytoma (PXA). Both tumors are classified as non-cancerous and require surgery, but not chemotherapy or radiation, for treatment. Although, the tumor was considered non-cancerous, it was explained to us that Julia would be followed by a neuro-oncologist, Dr. Peter Phillips. We also learned that the location of the tumor was ideal and allowed Dr. Storm to operate and remove it successfully. Several doctors told us it was the “best case scenario.” We would have to wait up to 7 days to get the final diagnosis from the pathology lab, but Dr. Storm gave us very encouraging news about her prognosis, even stating that she would be back to all of her normal activities within a few weeks. We were so happy to hear this news, but Julia was not out of the woods yet.
The night following Julia’s surgery was also terrifying. Julia would be lucid and talking coherently one moment and then would be hallucinating and repeating words several times in the next moment. We were told by the nurses that it is difficult to define typical symptoms post surgery as it depends on where the tumor was located. The doctors ordered a CAT scan in the middle of the night to rule out a brain bleed. Thankfully, the CAT scan showed no evidence of a brain bleed. In the morning, the doctors ordered an EEG to determine if Julia was experiencing atypical seizures. Seizures are common symptoms of brain tumors and can also be a result of the trauma to the brain from brain surgery. Again, we got great news that there was no evidence of seizure activity. The hallucinations could have been caused by the steroids Julia was given to reduce the swelling from her surgery, the various medications used to sedate her and put her under anesthesia for the surgeries and MRI’s, the lack of sleep (Julia did not sleep more than 30 minutes straight the entire time she was in the hospital), or her brain moving back into place after the tumor was removed. Eventually, her symptoms dissipated and Julia has no known deficits from the tumor or the surgery. She needed some physical therapy for a few weeks and she continues with follow up MRI’s, even two years post surgery. Words cannot summarize our gratitude for the doctors, nurses and the rest of the staff at CHOP who treated Julia and who care for sick kids day after day, and our feelings that her full recovery was a miracle!
