Friday, April 30

Collin seemed to be focusing his eyes a little better; now it seemed like he was actually looking at us for a few moments at a time instead of through us. A nurse came to do the ultrasound for the placement of the PICC line. Since we were there and watching so closely, she untied Collin's restraints. He then found the bottle of ultrasound gel, which he picked up and began to play with. He used both hands to hold and play with the bottle of gel, and seeing him using his right hand, which he hadn't been using much, was an encouraging sign. Bill played Collin's favorite music videos on his iPhone, and for once it didn't agitate him; instead he used both hands to hold onto the phone as he watched the videos. He even gave the phone back to Bill when I asked him if he could, which meant to me that he was understanding us. I felt so encouraged to see him finally enjoy something.

Friday afternoon they tried for over an hour to place the PICC line. They tried placing it in both arms, and had no luck because Collin's veins were too small. So instead he ended up with a femoral line placed in his groin, but they'd be able to use it to take blood as well as administer medications, so he would be more comfortable and not have to be pricked with needles anymore.

Collin's white blood cell count was elevated, so they sent samples of blood, urine, and CSF to check for infection.

Collin was groggy and seemed to be moaning again. I just wanted to be able to hold my little man, and he seemed to want to be held, but because his hands were restrained and the EVD had to remain level with his ear, it was impossible for me to hold him.

Thursday, April 29

About an hour after they had rushed Collin back to the PICU to place the drain, they told us we could see him. The sight shocked me; his head had a large dressing on it, and there was now a thin tube coming out from under that dressing. The tube was connected to a piece of equipment, the drain, that collected the CSF that drained out of Collin's head. The drain had to be kept exactly level with Collin's ear, and the nurses did use a level to make sure it was where it needed to be. They explained that the drain was at zero, and that eventually they would challenge it by slowly raising the level higher; that way they could see the amount of pressure that was needed to drain the fluid out of Collin's head. Collin's hands were also tied to the bed now, to prevent him from grabbing the drain and pulling it out. I completely understood the necessity, but that didn't make it any easier to accept the fact that I couldn't hold my baby anymore. Collin's neurosurgeon felt that there was a 60/40 chance that Collin would end up needing a shunt, so that surgery was tentatively scheduled for the following Monday.

Since they were having more and more trouble with drawing Collin's blood for lab work (his arms were getting bruised from all the needle sticks, and they were getting less and less blood from him because they'd used most of his veins), they also talked to us about placing a peripherally inserted central catheter, or PICC line. It would be a larger IV line that would be placed in a larger vein, and they wouldn't have to treat him like a pincushion anymore. They would do an ultrasound so they would know where in his arm to insert the catheter, and they would sedate him a little so the procedure wouldn't hurt. They planned on placing the PICC line the next day.

Wednesday, April 28

Wednesday Collin's blood pressure seemed a bit high at times, and he was moaning more. He was also still rubbing at his face and head. We figured he'd been through a lot, so we tried to keep him as comfortable as possible with the help of Morphine. That afternoon we were moved out of the IMC into a regular room. That was exciting; finally we had a private little room that had it's own bathroom. We were able to unpack some things and feel a bit more settled in. That night I again laid next to Collin in his bed, and just nursed him and held him. He settled into a peaceful sleep for over an hour. But suddenly, out of the blue, he woke up screaming, and nothing we could do seemed to comfort him. Since the NJ tube had been placed the day before, we had gone through four pumps for it; each pump seemed to have different things that went wrong. Our nurse decided to have X-Ray come up and take another look to make sure the tube was still in the right place; we began to wonder if the tube was either kinked or in the wrong place, thereby causing Collin discomfort and the pumps not to work right. But the X-Ray showed the tube was fine, so our nurse called Neurosurgery to have them check Collin because of his agitation. They came up and assessed him, and at around 2 am, they decided to take him right away for another CT scan. I held Collin as they pushed me in a wheelchair down to the radiology department. When we got off the elevator, I felt like I couldn't breathe, because this was the very place we were first told our baby had a brain tumor. They wheeled me into the room where the scan would be done, and Bill and I placed Collin on the bed part of the machine and donned lead aprons. We watched them do the scan, and then when it was over, I held Collin as they wheeled us back up to the room. Pretty quickly after we got back to the room, the neurosurgery residents returned to tell us they were taking Collin back to the PICU immediately to place an EVD; the scan showed that his CSF had not been draining, so there was fluid pressure building up in his head (aka hydrocephalus). Now we knew why he was agitated and still rubbing at his face and head; he was still in pain, the level of which would have brought an adult to their knees. They quickly took Collin to the PICU, and we re-packed our belongings. Since we couldn't be with him until after they were done placing the drain, we took most of our stuff and stowed it in the car, because there wasn't anywhere else to keep it. Then, terrified, we waited until we could be with Collin.

Tuesday, April 27

This was the day we were to get back the biopsy results. Our oncologist met with us that afternoon to tell us that Collin did indeed have Medulloblastoma, and she gave us a brief overview of what his treatment plan for chemotherapy would involve. He is too young for radiation; the goal is to treat him the best way possible while preserving his best chance at having a normal life, and at his age radiation would cause too much damage to his body, IQ, etc. Instead he will be put through five rounds of aggressive chemotherapy which will take place over six months, 80-90% of which he will spend in the hospital. The final round of chemotherapy will involve a stem cell rescue, where they will take his own stem cells out of his blood, wash them of any cancer cells, and then replace them into his body after the aggressive chemo destroys everything else. He will lose his hair, and endure the mouth sores, nausea, vomiting, etc. that go along with chemo. His immune system will be obliterated, so he will stay in the hospital where they can monitor him closely for any infection.

Collin had been harder and harder to feed at home, especially over the last few weeks. This child, who ate more at Thanksgiving than the rest of us, wouldn't even eat his favorite foods anymore. We now realized it was because of the location of the tumor; what I thought was picky eating was actually because he was having more and more trouble swallowing. That, combined with the vomiting (also due to the tumor) resulted in weight loss. Now due to the condition he was in after the tumor resection, he was still unable to eat by mouth, so the decision was made to place a feeding tube. They decided to use a nasojejunal, or NJ tube. It is a thin, very flexible tube that is inserted into the nose, down the esophagus, and through the stomach into the small intestine.

The tube was placed early Tuesday evening. I held Collin's hands as they stuck the tube up his nose and down into his belly. Then, to make sure it was placed correctly, a portable X-Ray machine had to be brought to the room to take a picture to make sure the tube was in the right spot. It wasn't, so they had to take it out, re-insert it, and take another X-Ray. Luckily, the second time it was where it needed to be.

Monday, April 26

Early Monday afternoon, we were moved into a semi private room in the Pediatric Intermediate Care Unit (PIMCU or IMC). Collin seemed to be moving around a little more on his own, and grabbing at things. He began some physical and occupational therapy, which would help him be able to hold his head up on his own, track with his eyes, start using his right side more (he had been favoring his right side and moving his right arm and leg less since the surgery), etc. Later that afternoon he managed to turn himself onto his stomach. I repositioned him in the crib because I thought maybe he was uncomfortable, but then he tried to get up again. I realized he was trying to get to me, so I held him. That evening I had planned on sitting in the rocker and holding and nursing Collin as long as I could; when the night nurse realized this, she got us a junior bed so I could lay next to him and nurse him and comfort him. It made things slightly more normal for us, and we managed to get a few hours of rest.

Sunday, April 25

Collin was on Morphine for his pain, so he was still pretty groggy most of the time. Every time he got a dose of Morphine, his oxygen saturation level (O2 sat) would drop because his breathing slowed so much, and he'd have to be put on oxygen. At times the nurse would have to stick a tube in his mouth or down his throat or nose to suction mucus out. His eyes were not lining up right; his right eye would look straight ahead and his left eye would drift up or out to the left, completely independent of each other. He would stare with kind of a blank look on his face, and it felt like he was looking right through us. We were told this was due to swelling in Collin's brain from the surgery, but that it should resolve over time. The MRI done the day after the surgery showed that the whole tumor had indeed been removed, but that there was some extra cerebral spinal fluid (CSF) in his head, so they were going to monitor things closely. Collin would moan on and off, and was rubbing at his face and head with his left hand. We asked the doctors and nurses why he was rubbing his face and head; he had done the same thing at home and I now knew it was his way of trying to tell me his head hurt. They explained that Morphine can make a person's face feel itchy, so that was probably why he was rubbing at his nose all the time. I fed him some tiny ice chips, which he seemed to make an effort to chew as they melted in his mouth and moistened his dry lips. Then I used a small syringe to feed him some of the breast milk I had been pumping so I didn't lose my supply while he was unable to nurse. Finally that afternoon I was able to hold him for a while, and he nursed for a short time. Again I held my baby and cried, but this time they were tears of joy. Later that day, we were moved into one of the end rooms in the PICU, which was nice because we weren't so out in the open in the middle of the big room. That night the nurse asked if I could hold Collin's hand while she drew some labs. As I watched her stick him with a needle multiple times in an effort to draw the blood she needed, I cried for all the pain he was being forced to endure.

Saturday, April 24

Collin was still groggy from the surgery the night before, and then they had to sedate and intubate him again to do another MRI to make sure the whole tumor had been removed. Our daughter came to the hospital that day, and we talked to her about what kinds of things she would see and hear when we took her into the PICU to see Collin. She asked great questions, and then said, "Can I see Collin now?" We took her back to his crib, and got a tall seat for her to climb onto so she could see Collin and hold his hand and talk to him. He did open his eyes for a moment and seemed to realize she was there.

That night, Bill and I took turns sitting by Collin's crib. I was again taking a nap in the family waiting room when I was awakened by crying. I knew right away that some other poor family had just experienced the unthinkable. Not wanting to intrude on their pain, I just laid there with a feeling of sick dread and pretended to still be asleep. I dozed off again, but woke up when they came in to get their things. Once they were gone from the room, I went into the PICU to be with Bill and Collin, and realized that the baby of the young parents we had spoken to earlier that day had just passed away, and they were there saying goodbye. I avoided them, because my baby was still alive, and I had no idea what to say to them, and then I felt guilty.

Friday, April 23

The next morning, Bill went home to be with our daughter and get her on the school bus. I was sitting next to Collin's crib in the PICU holding him when the neurosurgeon made his rounds. I asked him if he had been able to look at the pictures of Collin's spine. He told me there were some areas of contrast at the base of his spine, which meant the cancer had spread. I felt like I couldn't breathe. I called Bill and told him the news. After getting our daughter on the bus, he came back to the hospital.


We stayed by Collin's side all day. We expected the surgery to take place around two in the afternoon. As the day went on, Collin became more and more agitated and harder and harder to comfort. I wasn't allowed to nurse him because his stomach had to be empty for the anesthesia. By that time he hadn't had anything in his stomach for over twenty four hours since he had been vomiting all day Thursday, and nursing him practically around the clock was the only thing that had brought him any comfort for the last few weeks at home. It was horrible not to be able to soothe him at all. Then the start of his surgery kept being pushed back later and later because the neurosurgeries before his went longer than expected. At some point that day my parents arrived from Houston, and Bill's parents were there with us as well. Our oncologist came by to meet with us that afternoon. She told us that about three weeks after the removal of the tumor Collin would be put on an aggressive course of chemotherapy that would take place over the next six months. I just kept thinking to myself, "I can't believe my baby has cancer." She explained that they felt the tumor would turn out to be one of two kinds of cancer, one of which responds better to chemo than the other, but they wouldn't know for sure until the pathology report came back, which wouldn't be until Tuesday of the following week...my birthday.

Collin had a longer tail of hair on the back of his head that Bill always teasingly threatened to cut off. I realized that the back of his head would be shaved for the surgery, so the nurse helped me cut the lock of hair and wrapped in silk tape so I could keep it. That was Collin's first haircut. Finally, we got word that it was time for Collin to go to the OR for his surgery. Bill and I, along with my parents, walked alongside the crib as they took Collin down to the second floor. We walked with him as far as they'd let us, but then it was time to let him go. I kissed him all over his face and told him I loved him; then I watched as they carried him down the hall, crying and reaching his hand back to me. When the door closed and I couldn't see him anymore, I fell apart.

We were the only people in the surgical waiting area that night. The surgical information board said Collin went into the OR at 6:48 pm. At around 10:15 pm the waiting area phone rang, and they said that Collin was fine and the neurosurgeon would be up within an hour to talk to us. We expected the surgery to take longer, so we hoped that the shorter surgery was a good sign. The neurosurgeon came to the waiting area a little while later, and told us that he had been able to get the entire tumor out, and he had no reason to believe that Collin would suffer any long term neurological damage as a result of the surgery. He didn't feel Collin needed an EVD or shunt at that point. He also told us that out of the two tumors they expected it to be, the pathologist seemed fairly certain that it was Medulloblastoma, the one that would respond better to chemo, but of course they wouldn't know for sure until the biopsy results were back on April 27. But, the news made us feel a tiny bit better about the spread to spine. The tumor was the size of a small purple plum; the fact that it was so aggressive, coupled with Collin's very young age, increase the...seriousness of it, because he's too young to have radiation. I asked if Collin was born with it, but the neurosurgeon said it had probably only been there for three to six months. We asked how many of these tumors he sees a year, he said about twenty, but only two or three of those are in kids under the age of three. Ironically, Collin's tumor resection was the second one in a young child that day. When he was done talking with us, he gave me a little bag with the rest of the hair they had shaved off the back of Collin's head.

We returned to the PICU to wait for Collin. When we saw him, his face was all swollen, and his head was wrapped in gauze. He was groggy from the anesthesia, and would be that way for a while, so the nurse encouraged Bill and I to go to the family waiting room and try to get a few hours of sleep; even though I didn't want to leave Collin's side, we were beyond exhausted, so we went to take a nap. The family waiting room is a room with about eight couches, and parents of children in the PICU and NICU can sleep there at night. I very quickly fell asleep. But at around 4:00 am, I was awakened by the sound of a male voice talking on the phone, and as I heard what he was saying and realized what was going on, I felt sick and panicky. I was trying my best to stay positive for Collin, but the baby that had been in the crib next to him, the baby that I had been watching the night before as I sat by Collin's crib as he slept, had just passed away. I ran to be by Collin's side, and cried. The thing I now feared most had just happened to the baby in the next bed. The nurse tried to comfort me, but I was so scared, and I just wanted to be home and wake up from the nightmare that was now my life.

Thursday Night, April 22

We carried Collin up to the Pediatric Intensive Care Unit after the MRI. The PICU is a large room with about six beds in the center of it and some other more isolated rooms on either end; one nurse is assigned to each bed. As we walked to the crib that would be Collin's, we passed by other sick kids, most of them babies. Having never been in a PICU before, I was not prepared for the sights and sounds we would experience and I was scared, but I tried to just focus on Collin. Eventually the neurosurgeon came to talk to us; he let us know that he would be performing the surgery to remove the tumor from Collin's brain the following afternoon. He told us that based on the MRI it didn't look like the tumor was attached to the brain stem at all, which meant he was optimistic he could get the whole tumor out. There was the possibility that after the tumor was removed, he would have to either place a temporary external ventricular drain (EVD) or a permanent shunt that would enable Collin's cerebral spinal fluid (CSF) to drain out of his head so that it didn't keep accumulating and cause increased cranial pressure, or hydrocephalus. He had not yet looked at the pictures of Collin's spine, but would let us know the following day what they showed. He expected the surgery would take four to six hours, and he told us where we could wait so that he could come and talk to us after the surgery. That night, I sat next to Collin's crib and dozed when I could. I was terrified to leave Collin's side; I didn't want him to be afraid if he woke up and didn't see me. I remember watching the little baby in the crib next to Collin's, and feeling sad for him that his parents weren't able to be there with him around the clock.

A Devastating Diagnosis

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.