|
Philadelphia… Children’s Hospital of Pennsylvania CLICK HERE FOR PICTURES
Saturday, October 16, 2004
The week started off a little frightening. Over the weekend, Joseph’s pain seemed to have gotten worse. He wanted to be carried around, his chest hurt to laugh or cough and we began to see tumor bulging in his chest. We were so happy to begin this treatment!
We drove to Philly and arrived at our hotel on Sunday night. Monday morning, Joseph developed a slight fever and needed a blood transfusion. Not a problem....he got juiced up and then admitted. Our boys were able to hang out in the room since no medicine had been administered yet. The entire room was covered in plastic. The floor, walls, pillows, the phone, everything...plastic. We began our training of do’s and don’ts while our child is radioactive. Vin and I needed to wear gown, gloves and booties at all times while in his room. The lead walls did not completely cover his entire bed, so we were able to reach around to give him food and medicine. The nurses only came into the room if absolutely necessary. When the nurses did enter the room, they would get shot with Joseph’s “shoot the cans” gun. Hey...he needed some kind of entertainment. He’s not used to NOT having Child Life people or nurses to come in and play with him. We were IT for entertainment.
The catheter was placed on Tuesday at 6:30 a.m. in the O. R.. The Nuclear Medicine was delivered and administered in the afternoon. The infusion itself was uneventful. It came in a shielded box with an IV syringe pump that went through his port. As soon as the medicine started flowing, everyone quickly evacuated the room and I had to get behind the lead wall. The numbers on my meter immediately started climbing. We were upset at first about the separation, but got used to it as time went on. He was feeling good during and after the infusion. He complained a little bit about pain in his back, chest and his belly. Tylenol seemed to keep him comfortable. He was on nausea medicine because he didn’t want to eat, but overall, I think it went well.
Michael and Stephen had a nice little area down the hall from Joseph’s room to set up their school work. They set up their lap top and spread out their notebooks. They chipped away at homework and in between took breaks in the playroom or watched a movie. They deserve a “patients” award for being so patient with all that we needed to do with Joseph. On Wednesday, Vin took a break from the hospital and took the boys to the Ben Franklin Museum. On Thursday, I took the boys to see Liberty Square. Maybe they’ll get extra credit in History Class (ha ha). We would have liked to have spent more time seeing Philadelphia, but our sole reason for being there was for treatment not vacation.
Joseph’s radiation levels were OK yesterday (Friday) to be discharged from the hospital. So, we drove home last night. Today, Josephs level of pain seems less. He's riding his bike, jumping off the couch (pretending to be Spider Man) and running around in the yard. Amazing! Thank you God for minimizing his pain.
For the next several weeks, Joseph’s blood counts will drop to a dangerous low. He will be closely monitored at least twice a week for disease evaluation and blood levels. In six weeks he will have a scan to see how the MIBG treatment is working. It seems like such a long time to wait. I’ll keep you posted when there is new news to report.
Holly
See Boston journal - October 2004
Back to Philly…
December 17, 2004
We arrived in Philadelphia on Sunday night (Dec. 12th) at our little house near the Art Museum. The boys immediately found comfort with the computer and DVD player. We settled in and prepared for our stay in the city once again. We checked into clinic on Monday, where Joseph was examined and accessed and then we were admitted to the “plastic room.” Again, Joseph would be surrounded by lead walls and everything we touched was covered in plastic. He didn’t seem to mind playing Gameboy through a plastic bag. Tuesday morning we were off to the OR for catheter placement and the infusion began in the afternoon. He had a little nausea and minor jaw pain, but remained in a good mood, playful, and as active as a five year old could be in a hospital bed. He loved to make paper chains to hang across the lead walls. Vin and I alternated nights at the hospital. It was so nice to be able to go back to a house this time. The boys kept busy with school work and enjoyed getting out for a Philly Cheese Steak. They’ve been good sports about this whole thing. I think they were entertained with watching me try to find my way around the city and trying to park our van. Our street is so narrow that we need to fold in the mirrors and squeeze into parking spots big enough for a volkswagon.
The week went by and Joseph was discharged today (Friday). We decided to skip sitting in traffic through NY and Conn., so we’ll head home tomorrow.
What’s next: Joseph already has low counts, so I expect he will get blood in Boston on Monday. From there he will be closely monitored in clinic and will probably receive several blood transfusions. The doc’s expect that he will need to use his stem cells to help his marrow recover from the double MIBG treatment. Like before, in six weeks, Joseph will have scans for a full disease evaluation. We hope he will recover quickly for when we get the call from Texas that his vaccine is ready. And then we are off to Texas...
We wish you a happy holiday season and thanks for checking in.
Holly
See Boston journal - December 2004
|
