About Trey

This is a quick recount of my journey into a rare childhood cancer called Neuroblastoma, Stage IV, an affliction that affects only about 650 kids a year in the U.S, or so I'm told. I'm 21 months old, which unfortunately means the tumor, which started in my left Adrenal Gland, and has metastisized to a small tumor behind my right eye, and into the bone marrow, will not regress on it's own, an option only reserved for those who detect this cancer before they are 18 months old. But I wouldn't expect the easy route anyway. Let me flash back to October 26th, 2006, the day of my arrival into this world.

My mom, Melissa Capriolo carried me for the full term, and then some. She and my dad, Mike Love, arrived at Phoenixville Hospital that morning, and within a couple of hours, I was out! Unfortunately, a couple hours after that, I would be swept away from them, and my first connection with Children's Hospital would be made. Dr. Kellog and the rest of the Phonixville Hospital NICU staff worked hard to relieve my little heart, as it was beating out of control, upwards of 280 bpm, which as I understand it, is way too fast! This is a condition called S.V.T. or SupraVentricularTachycardia. My heart had an extra electrical connection, which caused it to beat too fast. Dr. Kellog was in close contact with Dr. Gleason, a CHOP Cardiologist, and they were able to control my heart rate with a drug called Digoxin. My heart condition almost gave my parents a heart attack, but after six days in the NICU, they brought me home. I would follow up with Dr. Gleason, and later my diagnosis would be changed to Wolfe Parkinson White Syndrome, or WPW. I would spend my first night at CHOP, where they would monitor me as they changed my medication from Digoxin to Propranolol. And they lived happily ever after... until..

Well, There's definately more to this story. On July 10th, 2008 I was playing with Blake and Sydney, Mommy's family that she nannied for. I appeared, suddenly, with a black eye. Mommy called Daddy and said "Does it make me a bad mother, that I don't know where Trey got this Black eye?" Of course Daddy said "No, That's totally normal." But, mommy definately knew that I never made a peep, and even though I am a tough kid, that's still a little wierd.

I remember everyone saying for the next couple of weeks, "When is this black eye going to go away." On Monday, July 28th, Mommy finally decided to make an appointment with the pediatrician, just to check it out. That night Mommy was so worried and told Daddy, she was so scared it was cancer or something like that. Daddy told her she was crazy. And we all went to bed.

Tuesday morning we went to see Dr. Schetman at KidsFirst Paoli. She looked at my eye, and then started to give me a physical. She found the mass in my abdomen pretty quickly. She told my mom that I needed lab work done, left the room, and then came back and said "You guy's should just go to CHOP emergency, just to be sure." Well as you probably already know, things got pretty bad right about then. Daddy and G.G. came to meet us, and we took off for the hospital. As soon as we got there, Dr. Bear, an E.R. resident, and Dr.Pawel, the attending physician started to throw around words like Cancer, Lieukemia and "doesn't look good." Dr. Bear also made a ridiculous comment about how my eyes didn't always look in the same direction. Go ahead and let four or five people hold you down, shine lights in your eys and talk about how they might have to sedate you, then you see if your eye's don't get a little disoriented. Poor judgement in my opinion, by a doctor who seemed less concerned with getting it right, and more concerned with trying to seem smart, especially when we were only hours removed from finding out there was anything wrong at all. Doctor's were poking me and prodding me. I was happy when they left. Nurse Steve put in an I.V. and drew blood. It was a real good thing for him. He was one of the only people in the E. R. who wasn't treating me like a side of beef! Plus I think Mommy and G.G. got a little crush, if you know what I mean, and I think you do! Within an hour they knew I didn't have Lieukemia, and Dr. Olson walked in. "There's definately a mass in the abdomen." "It could be benign, though," Mommy said. "I wouldn't expect that," Dr Olson said. "There's a good chance that this could be Neuroblastoma, and Trey will have to have a CAT scan." In the mean time I had an ultrasound, a chest x-ray and we started heading up to the CAT-scan. When we got there, we were told that we couldn't have the CAT-scan , because I didn't drink the solution and the radiologists just didn't want to. Well, this is when we started to see what Dr. Olson was all about. He really went to bat for us, and he wanted that test TODAY! So, after what I'm sure was a big argument, we were told I would get the scan tonight. Well, this meant I would have to drink this nasty stuff, which daddy tried to forcefeed me with a syringe, not even happening. So what's next... The Dreaded NG Tube, the bane of the existance of every little boy and girl on 3 South. They put the tube in my NOSE! Down my throat and into my tummy. Well I just coughed that thing right back up! I was screaming bloody murder as my mommy and daddy held me down, and here it comes again! They got it in, got the solution in my belly, then I pulled it out. Just for good measure I puked it all up about 10 minutes later. Three hours later we did it all over again, but that meant that I could have my CAT-scan...at 2:00 in the morning. They gave me a drug called Versed, pronounced ver-sed, which is like baby xanax, and I actually perked up for a few minutes so this time they gave me pentibarbitol which actually knocked me out pretty good. I guess everything went pretty well, because I didn't wake up until the next day. Daddy said we didn't go to bed until like 3:00am. I heard them say that a very nice lady named Dr. Jen Hwang came and talked to Mommy and Daddy. I think she slipped me a mickey becuse I slept like a baby that night.

The next day we woke up and Mommy was sad. The Opthomologist, Dr. Nick Mahoney, who looks kind of like Adrian Brody, came in to check my eye. I had actually met him yesterday, but I couldn't remember. He was funny and he kept shining lights in my eyes. He said my eye looked good and he didn't think my vision was being affected. Daddy asked him if he had seen the results of the CAT-scan, and he did. He told mommy and daddy thaat I had a small tumor behind my right eye, and that is what caused the black eye.

It's really lucky that I got this black eye at all. My cancer started from my right adrenal gland, and then metastisized to a small tumor behind my eye... doesn't sound very lucky, but if I hadn't got the black eye, my parents may have never known anything was wrong.

Actually, up until that point, we were hoping that the black eye was just a side effect caused by protiens given off by the tumor in my abdomen. Dr. Neal Upsal, a Fellow in the E.R. explained this phenomenon to us as we were waiting. Looking back I can see that he was trying to keep us hopeful and positive. He is a new Fellow here, still very wet behind the ears, as evidenced by his demeanor. Most, if not all of the Docs here are brutally honest. That's not to say that they are cold, just that they've seen it all and they don't want to give you false hope. They prepare you for the worst, and for good reason. Dr. Upsal can't be faulted for his kindness though. We absolutely needed something to hope for that day, and he was trying to give it to us.

Never-the-less, Dr. Mahoney explained to us that this particular reaction would have most likely appeared in both eyes, which in itself is not common, but it happens.

Dr. Mahoney was finishing his exam, and taking pictures, which we would later learn would be used for research, due to the fact that this was such a textbook case of Neuroblastoma, with the eye symptoms and how distented my belly was. Dr Nick's visit was cut short, when the EKG cart was wheeled in. They obviously needed to be sure that my heart would be able to withstand anasthesia and surgery. The Delta waves could still be seen on my EKG. Just to be sure, they ordered an Echocardiogram, or an Echo. They wheeled in another cart and did the test. The doctors all felt that I could handle the procedure.

I would have a biopsy of my tumor and also a bone marrow biopsy. During this procedure I would also get a central line, called a med-comp. This is different from other types of central lines. Most other kids on this floor get a Broviak. The difference is that mine needs to have thicker tubes, for pheresis, the process of harvesting stem cells.

After that the parade of doctors began. Dr Olson and Dr. Jubelirer arrived amidst the excitement. Nurse Practitioner Colleen was another new face that we would come to know well through this. Dr. Olson sat and explained that they were still pretty sure that it was NB. (We are going to call it that for now on.) They told us that the treatment would be determined when they figured out the stage of the cancer. Mommy asked, point blank, "Which stage do you think it is?" Dr. Jubelirer told us that they would have to think that it was Stage IV, which would be the worst one. Mommy left the room after that. I think she was crying. I sat with Daddy... I think he was crying too. The doctors left us alone, and Daddy was talking, but there was noone there. I think he was asking God to help us. I think Mommy was too. After that they came and got us. They were taking us to the Operating Room. Mommy, Daddy, G.G., Mom-Mom, G-G-Mom, Aunt Wendy, and Aunt Theresa were all there. Mommy and Daddy went back with me to the room where they would give me anasthesia. We were in there for a long time, even though I don't really remember.The Anesthesiologist came in and gave me something that made me sleepy. I don't remember what happened after that, but I think Mommy and Daddy went out to wait with everyone else. Everyone was waiting for so long and a nice nurse kept coming over and giving them updates. Finally after an hour, Dr. Matthei came out and let everyone know I was doing fine and that his portion of the Biopsy and the Central Line were finished, and Dr. Olson was still inside doing the Bone Marrow Biopsy. Shortly after that Dr. Olson came out and let them know that it was a success. The nice nurse eventually took mommy and daddy back to sit with me as I came out of sedation. Nurse Jen also picked out a really cool blankie that was hand made by Quilts for Kids, and it has fishies and froggies on it. And everyone knows I like my fishies and G.G. likes her froggies. After a little while we were allowed to go back to the room upstairs. There was a whole bunch of people there. Daddy made a list of all the people who came so we could thank them so much for all of their love and support.

*At this point we knew pretty clearly, that Trey had Cancer. Dr. Olson had declared it in the Emergency Room, and had warned us of having false hope that it could be a benign tumor. Neuroblastoma Stage IV, was for sure, with what we knew after being here for less than 24 hrs. Dr olson had been direct, and concise throughout, and his diagnosis was right on so far, but he was very compassionate as well. They don't pull any punches around here, and so far it seems like they're never wrong.

One of Dr. Olson's visits along the way, was at atime that we were still hoping that we may have a different variation of Stage IV and that the cancer hadn't spread to the bone marrow. Dr. Olson told us that he wouldn't trust to hope for that. He knew that we were dealing with a very aggressive tumor, and we had a long road to travel, in order to cure this cancer. They were still waiting for more test results, and some things won't be known for weeks, but the doctors are treating this like it's the worst case scenario on all fronts.*

For the next couple of days I was really tired. I think I slept the whole day Thursday, and I can't even remember how many visitors I had. I kept getting lots of cool stuff though. All these people I hardly even knew were bringing me balloons, which I would point at and say "BALL!" and I love to watch people act sily and beat themselves over the head with them! I got all brand new stuffed animals, and there were so many that I couldn't even fit them on my bed! Daddy and Aunt Erin painted a big picture on my window. It said "Hope Faith and Love." It had a sun, and a big tree with long branches with my name in it. Daddy told me that the tree was me, and that I would grow up big and strong like the tree. Lots of other people helped draw on the window too. Uncle Billy drew a cool elephant and a turtle with a circle and a line through it, since Dr. Olson said amphibians and reptiles carry a lot of bacteria and I should stay away from them.

I'm having a test tomorrow called an MIBG test. They've been giving me doses of SSKI, for the next five days to protect my liver from theradiation, and the solution. A technician named Ilene, from Nuclear Medicine, came in at about 2:45 and gave me a shot of a solution that would glow on the test and tell the doctors where all the cancer is in my body. I also found out about a test which I would have to take Monday, caled a GFR, which would check for Renal function.(Kidney) One concern is that there would be added stress due to where the tumor is located, which is constricting the function of the arteries moving blood to and from the Kidney. They told us we wouldn't neccesarily have to wait to start chemo, but they're dotting their I's and crossing their T's. Everybody said that was one reason they had so much hope. We were in the best place, and we have the best doctors. I guess I'm just lucky that I have a family who loves me so much and one of the best hospitals in the world. I didn't eat much that day, but at the end of the day, I ate some mac and cheese, and took a tiny little sip of water, and I could tell mommy and daddy were so happy!

On Friday morning, I woke up and felt a little better. I was still really sleepy, and I wasn't allowed to eat or drink anything until after th MIBG test. Our nurse Andrea took us to Sedation at around 9:30. They were using Versed, Phenibarbitol and Fentinol, which is synthetic morphine.I was out like a light at 10:00. Ilene was the tech for the test, and we had the second really nice male nurse, named Mike. Ilene and Mike did a great job with the test. Daddy, Mommy, G.G. and Pop-Pop stayed in the room while the test was being done. Daddy said he could see the tumor behind my eye, light up on the screen, and the one in my abdomen must be big because it was hard to tell where it was and where it wasn't. Daddy also said the screen glowed on my legs, around my knees. Ilene told us that the test can pick up other things, like urine, but daddy could see that the cancer was there, in my bone marrow. When I woke up, we went back to the room, and a woman came to do a hearing test. It was a test of Acoustic emissions. I had an excellent response in both ears. We had lots of visitors again and I still wasn't hungry. A lot of people were going into a meeting with the doctors to talk about my diagnosis. A lot of other people stayed with me in the room.

* We went into the family meeting expecting the worst. Dr. Olson and Dr. Jubelirer had been setting us up for the worst news all week. The only thing I had to be positive about was the fact that they had told me that they had already given us most of the bad news. When we went in we all sat down around the table. I sat directly across from Dr. Olson. They told us all about how NB was a solid tumor, stemming from the adrenal gland. This is a condition that has been present since Trey was still in the cellular form, in utero, after conception. They assured us that it wasn't due to either of us being a carrier of a specific gene, but rather a genetic mutation that allowed the cancerous cells to grow unchecked, until it finally became the tumor in his abdomen. They believe the tumor most likely started growing a few months ago, and that there were no warning signs that we should have picked up on. Even if we would have brought Trey in when the black eye first appeared, it would have likely still been at Stage IV.The doctors told us that the histology (maturity) of the cells, along with other factors, were still to be determined, and it would take a few weeks to gather all of the neccesary information to determine exactly the depth of the situation. None of these things, however, would effect the treatment. The standard treatment would include 5-6, 21-28 day cycles of chemotherapy, harvesting of the stem cells (Aforesis) after Round 2, surgery (debulking) after Round 5, a stem cell transplant (using his own stem cells) and maintainance chemo/radiation after the process is complete. This method would give us a 33 percent cure rate. This number was much better than we were expecting, and we all felt like these were odds we could beat! The docs then went into the alternative treatment option, which, much like the original plan would include the same amount of chemo, but certain drugs (Cyclophosphomide and Topetecan) would be used in the first two cycles (The induction phase) that would normally be reserved for relapses. The other difference would be that, randomly, by the flip of a coin, Trey could be selected to have a second stem cell transplant. This is a new technique which has yielded better success in small, single-institution trials, here at CHOP, and at other hospitals, but wider clinical trials haven't yet been performed. This is the first nationwide trial, with the Children's Oncology Group. The docs were hesitant to say whether the alternative would be better for Trey. Ethically, they can't tell us it's better, because there isn't enough proof yet, but they told us that they wouldn't have presented it if they didn't believe in it. They also assured us that Trey would not just be some science experiment, and that if the study wasn't working, they would do something else. Dr. Jubelirer said that this could yield a cure rate more like 40-50 percent. Of course we knew what we were going to do, and we thanked God for giving us another choice.