When It All Started
Just after his birth he had a kidney reflux diagnosed in utero by ultrasound, so he spent a few extra days in the hospital to be monitored for any urinary tract infections. We went home in 5 days on a prophylactic prescription of bactrim. At 3 months of age, his reflux had progressed into a total blockage and required surgical repair. In a 7 hour operation they removed his ureter and reimplanted it onto a new place on his bladder. The surgery was a complete success and was recently found to have absolutely normal kidney function in BOTH of his kidneys. Joshua has always been a large child, currently weighing in at 60 lbs. and 3 1/2 feet tall!! He had way more than his share of ear infections as time went on and had frequent bouts of croup. In Mid February we noticed his arm was very red and hot. It looked as though he had been bitten by an insect or spider on his hand. We applied ice and informed the doctor. The next day his arm was swollen all the way up to his shoulder and very red. Took him to the doctor to find out that he had cellulitis of the arm. At this time we asked him if this infection could make him really tired because he was much sleepier than usual. He didn't know and thought that maybe he was going through a growth spurt, AGAIN. So home we went again on antibiotics. Over the course of the next 6 weeks he had 3 ear infections and croup, each time we inquired about the sleeping. We also noticed a change in his behavior. On Friday, February 28, 1998, took Joshua into the doctors because he looked sad, had a slight fever and appeared clumsy. At the doctors he noted the same thing only very mildly. He thought that maybe, since had just been given the chicken pox vaccination, he had developed a mild case of varicella encephalitis. He told me to take him home and watch him very, very closely and if there were any changes for the worst call immediately. So home we went again. On Saturday the low grade temp persisted and he was very irritable, I figured another ear infection was brewing. We took the kids to a large place similar to a McDonalds Play land. Joshua stood in the corner, uninterested in the activities and appeared to trip a couple of times. This time his father likewise noticed and commented on the tripping. On Sunday, he was a 1000% better and had a GREAT Day!! We called the doc on Monday to let him know that all seemed to be going well, and we casually mentioned the clumsiness. He asked to see him immediately. We again repeated that all seemed to be fine today and yesterday. He wanted to see him again immediately anyway. So we left work to pick him up. When we arrived the day care mother informed me that he was hitting the kids all day, had fallen out of his high chair with no explanation as to how and he was bumping on his butt down the stairs. I called the doctor immediately and said that instead of seeing him he was scheduling a CT scan and LP the next morning. So we took him home. He played until 8:00 and then life bottomed out from under us. That night he SCREAMED all night. He was unable to lie down flat and the next morning began to vomit and complained of a headache. We rushed him to the ER. By the time we were triaged, he had a right foot drop and was unable to walk for more than a few feet without falling. An MRI revealed a HUGE tumor in his right frontal, parietal and temporal lobes. The tumor was so big that it had thinned his skull and they were unable to use the holder during the surgery because the screws would have crushed his skull. He was rushed to the PICU and taken within 3 hours to the operating room to drain a huge cyst and place a intraventricular pressure monitor. He was highly agitated and had to be sedated heavily for the next 2 days. On March 6, 1998, he underwent a 15 hour craniotomy to remove the massive tumor. He remained in the ICU for the next 3 weeks. He developed surgical meningitis which took an additional week to recover from. We then were given the even worst news. His tumor was called ependymoblastoma. And although the tumor had not spread to his spine or spinal fluid, this is a very, very rare and highly malignant tumor. The chances of survival were only 5-10% with current treatment regimes. The next step was to embark upon a very aggressive and intense chemotherapy protocol, that had recently been developed in New York City. Despite Their requests to obtain treatment in NYC, the doctors here in Syracuse agreed to do the study so we could remain home with our daughter and family. Joshua was part of the HeadStart II protocol. He was in arm A. He had a 5 day inpatient stay in which he received Cytoxan, Etoposide, and Cisplatin. Prior to the Cytoxan he received very high doses of a drug called Mesna to protect his bladder from the damage Cytoxan can do to it. Prior to each dose of Cisplatin he was given a drug called Amifostine. This was to prevent damage to his kidneys and heart. This drug made him very sick. He was required to be in an "upside" position due to blood pressure drops. It also caused instant vomiting as soon as the drip was started. He then would get the high dose cisplatin which also caused severe nausea and vomiting. He underwent 5 rounds of this chemo regime. Because it was so intense he was an inpatient for most of the 7 months of treatment due to electrolyte imbalances, fevers, line infections, C-diff. and an anal abscess. The longest he was home was 7 days at any given point throughout the 7 months of treatment. Following the first round of chemo Joshua had his stem cells collected for a stem cell transplant that he would have following the completion of the 5 rounds of induction chemo. On September 1 he was admitted for his stem cell transplant. On September 30th he was released. He had a relatively uneventful transplant and other than the severe mouth sores, it wasn't any harder than the induction rounds. He received Theitepa, Carboplatin, and Etoposide. He had several days of fever which were treated with high doses of antibiotics and amphotericine-B. He was on IV morphine for about 6 days and then he was up and moving without looking back! 42 days following the stem cell transplant he had localized radiation to the tumor bed. The initial goal was to completely destroy the remaining tumor prior to the stem cell transplant. However, on an MRI right before the transplant, it was determined that there was still viable tumor remaining and so he would require radiation following his transplant. He tolerated the radiation with no difficulties at all. He had daily general anesthesia, which he also had no problems.