Collin is a sweet, loving, happy, easygoing little boy. He is our second miracle; it took us two years of medical intervention and the ups and downs of fertility treatments to have our daughter, who blessed our lives with her arrival in 2004. We were all set to go through the fertility treatment roller coaster again, but found out we were pregnant on our own. Collin blessed our lives again when he was born a week before Christmas 2008. Our daughter wanted a sister, but the first time she laid eyes on Collin in the hospital, she told me she loved him more than if he was a girl. Collin adores his big sister, who nicknamed him her "princey fellow" (she loves princesses, and every princess must have a prince).
We have a wonderful pediatrician, and according to his findings at all of Collin's regular check ups, Collin was developing normally. Other than the usual bugs he picked up from his sister when she brougt them home from Kindergarten, he was a healthy little boy. Then, at Collin's 15 month check up, his pediatrician noticed a slight weight loss. I thought he had started becoming pickier about eating, but lots of toddlers go through a picky phase. The slight weight loss could easily be explained: he was an active toddler, and his sister is tall and slim, so he was probably following in her footsteps. The doctor also asked if he was saying any words; other than the occasional "mama" or "dada," he wasn't really talking too much, but he could certainly understand and follow directions, and perhaps it was possible that his older sister (and his parents too) were good at figuring out what he wanted and talking for him. I had also heard many times that boys often speak later than girls, so there was yet another possible explanation. Collin had started walking before he turned one, but at 16 months he still fell a lot. But we thought maybe it was because he was so active and moved fast, and sometimes would trip over his own feet. When the pediatrician examined Collin's eyes, he noticed that Collin would turn his chin over his right shoulder and look at things out of the left corner of his eyes. I naively thought it was a cute way Collin had of looking at us, but his doctor wanted to have him evaluated by a Physical Therapist (to rule out shorter neck muscles on one side, aka torticollis) and a Pediatric Ophthalmologist (to see if maybe his eyes weren't lining up right).
So, I called the one pediatric ophthalmologist in the area that I knew of. The earliest appointment his office had was May 12. I took it, but I didn't want to wait that long, so I called my eye doctor and asked if he could recommend anyone else. He gave me another doctor's name, so I called and got Collin in the following Monday, March 29. The ophthalmologist was wonderful. He did a complete examination, and said he felt it was either Spasmus Nutans, a benign condition that would eventually resolve on it's own, or possibly a benign Sixth Nerve Palsy. He recommended watching Collin very closely, and depending on the progression of the symptoms, he may order an MRI in the future. He didn't feel it was necessary to do one right away because to put a toddler through an MRI wasn't a minor procedure and would require anesthesia, and the chances that there would be anything like a tumor were so minuscule. He wanted to see us in another three weeks. When I researched the two possible diagnoses he had given us, I emailed him about the other things the pediatrician had noticed, and also let him know that my brother had died at the age of 23 from an anuerysm, which was one of many possible causes of Sixth Nerve Palsy. He didn't feel Collin had any symptoms of an aneurysm, but said he'd order the MRI if it would make me feel better. I didn't want to put my baby through a big medical procedure if the doctor didn't feel it was necessary, so I chose to wait. It is a decision I will always regret. I can't help but wonder if three weeks would have made any significant difference in how large the tumor was or how much the cancer spread.
The following weekend was Easter weekend. That Friday morning, Collin threw up once, and wasn't himself all day. He started throwing up more that evening, and it continued all night. Saturday afternoon, it stopped for a while, so I thought we were done; then when it started again, I called the pediatrician covering for the weekend. He told me to bring Collin to the Harrisburg Hospital ER. He ended up being admitted for dehydration, and he and I spent the weekend there. He was discharged Monday, but still had occasional episodes of vomiting over the next two days. At his follow up appointment with his pediatrician, the doctor felt that the stomach bug may have re-aggravated Collin's underlying reflux condition, but felt it would just be temporary.
Over the next two weeks, Collin became harder and harder to feed. At first I thought he was becoming pickier, but over time it became almost impossible to get him to eat anything. He became fussier, more clingy, and just wanted to nurse all the time. He had a few more episodes of vomiting as well. I took him back to the pediatrician on Monday April 19. Based on my description of the difficulty getting Collin to eat, he felt the reflux had caused Collin to develop a food aversion, and decided to refer Collin to a pediatric gastroenterologist and feeding clinic at Hersey Medical Center.
On Wednesday April 21 we had the second appointment with the ophthalmologist. He had not been planning on dilating Collin's eyes again, but when I mentioned the vomiting, he asked us to let him take another look. Afterwards, he told us he saw some pressure on the optic nerve that hadn't been there three weeks before, and he wanted an MRI to be done in the next 48 hours. I left his office scared out of my mind, because based on my earlier research, I knew what he was looking for. The MRI was arranged for 3 pm the following day at Hershey Medical Center. After the appointment, Collin threw up again a few times. We took him to the ER that night to see if they could do the MRI then, but they told us they didn't have all of the necessary staff overnight, and sent us home since he wasn't dehydrated.
The next morning, Collin starting vomiting again, and it continued all day. He couldn't even keep down the tiniest amount of breast milk (which is the easiest thing for a body to digest) and he was so pale and lethargic. His little body would just heave and wretch until he'd throw up stomach bile, time after time. I again called the pediatrician, but he was afraid that if we took Collin back to the ER he would end up missing the MRI, and he emphasized how important it was that the MRI be done that day. I called my mom in Texas, and told her she and my dad had to get here as soon as possible, because I thought Collin was going to die. I held my sweet baby and cried until it was time to leave for the hospital.
The anesthesiologist let me hold him on my lap while he fought against the gas that would put him to sleep. Bill and I cried, and then surrendered our baby to the people who were going to figure out once and for all what was so wrong. Part way through the MRI, a nurse came out and asked us a few questions about the vomiting and other symptoms. I told him that if they were not able to give us an answer that night, we would take Collin back up to the ER, because I knew there was something very wrong and I was not taking him back home in that condition. He nodded, and then told us they had to extend the scan to his spine, so it would take a little longer. Soon after that, he returned and took us to a small room to wait. We knew it was bad because normally after an MRI, you have to wait for a radiologist and doctor to read the results and get back to you. Eventually two radiologists came in and delivered the news: they had found a large tumor in Collin's brain. They would be admitting him directly up to the Pediatric Intensive Care Unit, and the neurosurgeon would be up to talk to us. They let us make some phone calls while Collin was coming out of anesthesia, so we began calling family and friends to deliver the devastating news.
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