Learning to make lemonade....: Jacob's first visit to Arnold Palmer Children's Hospital

Jacob received his first infusion in Tallahassee at the Tallahassee Memorial Kids Corner yesterday morning. He was sick afterward and slept most of the day, but felt better last night and went to school this morning.

Our house has been busier than a circus on an opening night, which means that things are pretty normal J. I know I’m way past due on updating the blog, and since the trip to Arnold Palmer Children's Hospital in Orlando was now two weeks ago, I might as well start with that.

Our trip to Orlando went very well considering the anxiety that I had prior to the trip. It wasn't a bad drive until we were about 20 minutes outside of the city and in the middle of crazy five 'o clock traffic. I will admit that I got us lost (only briefly!) after getting off of the interstate, but we found our way after a few corrected wrong turns. Downtown Orlando is very beautiful, but there are a lot of one-ways, and with the tall huge buildings everywhere, it is hard to know which direction is which. Mental note: Print the map next time in large print so Jacob can help me if needed! We found the Ronald McDonald House and checked in with no big problems. We arrived right at dinner time and a local firefighter ladder was there outside smoking chicken for dinner for all of the families. I was relieved that we wouldn't have to go out for dinner given the possibility of getting lost again :). The chicken was delicious and our room was comfortable with awesome decorations. There was a bug jungle painted on the walls with other bug-themed things throughout the small room. I'm surprised Gavin wasn't scared of the beetles that were as big as him painted on the walls, but he seemed unphased. Management brought us a roll-away bed since the two beds in the room are only twins and Gavin is so big now he and I can't sleep comfortably in a twin bed. I take that back, Gavin probably could! Jacob watched TV in the common area and Gavin and I played in the playroom. We all attempted to go to bed around 11:00, but that was difficult with Gavin refusing to sleep. Since we co-sleep at home, Gavin was completely put out that he had to sleep in a different bed than me, even though I had it pulled up to the foot of mine with my head at the wrong end, still holding him. Because Jacob slept for a lot of the ride down, he wasn't tired and wanted to hang out on his iPod with his music blasting through the ear phones. I was a bit frustrated because I was completely exhausted... silly BOYS!! I got up at 6:00 am, got ready, started to pack up and clean the room. The boys got ready, we had breakfast and headed over to the hospital. It was a short walk and our van was already in the hospital parking garage from the night before.

Arnold Palmer Children’s Hospital is very nice. There are kid-friendly areas all over the hospital with Disney characters and things to play on. We even enjoyed an outside play area while waiting for Jacob's labs to be processed. It was nice to see and visit with Dr. Smith and Mrs. Michelle. As usual, an intake was done on Jacob and Dr. Smith did an exam. We discussed Jacob's surgery being moved to a different doctor on a different date. The only thing Dr. Smith seemed concerned about was Jacob's balance changing. Other than that she said Jacob's bloodwork and neuro exam were good. We plan for Jacob to do another cycle of Avastin (12 weeks), have an MRI at Arnold Palmer at the end of November, take a break from chemo the month of December and travel to NIH in January for Jacob to have surgery on the abdominal tumor. After Jacob's surgery we will return to Dr. Smith and re-evaluate the Avastin and possibly add or move on to Rapamycin.

The infusion lab at Arnold Palmer is very different than Shands. They have a large room with a big “Tree of Life” in the middle of the nurses’ station. It reminded me more of a children's hospital floor than a lab. Each chair has it's own room with a curtain for the front but with walls on the other three sides. Jacob's RN for the morning, was a male nurse named Scott. Scott liked the Rays and I think Jacob liked having a dude to chat with for a change. Their procedures are a bit different than Shands. Scott had Jacob wear a mask and he had on a mask, gloves and a gown to keep everything sterile while accessing Jacob's port. After Jacob had his labs drawn we took a walk down to the gift shop and went outside to play for a bit and look around. It was hot and Jacob was wanting to play Xbox so we headed back upstairs after a shot adventure. Child Life brought in a separate unit with a TV and gaming system, which was nice because Gavin could watch TV while Jacob played games. Jacob had the super nice Child Life coach hunting for a football game he wanted to play, only for him to have to trade out Jacob's controller for one that wasn't "dead" when he returned with the game. Child Life also brought Gavin a really cool tool set to play with and I loaded the boys up with snacks and drinks. The next few hours went by pretty fast. I would be lying if I said Gavin was well behaved during our wait. Not sleeping well the night before, he was grumpy and I was ready to head home.
When the Avastin arrived Scott was at lunch and another nurse hooked Jacob's meds up. She was super tall and graduated from FSU. Once again with the full-on sterile gear. We were told the Avastin protocol was for Jacob to have his vitals taken every 15 minutes. That was different too. Jacob got his meds over a 45 minute period because it had been a month since his last infusion. I signed some papers, Jacob had his port access removed and we were on our way. Jacob was dying for McDonald's so we left the hospital and made our way down South Orange Avenue until we saw one. Have you ever eaten at a McDonald's Bistro? It’s just weird if you ask me, but Jacob was very impressed with the huge saltwater fish tank, fire place (in Florida, really?), and cherry wood tables. The menu has a hundred things to chose from, but who would go to McDonalds to eat a grilled chicken pesto wrap that is most likely grilled on the same flat as a greasy Big Mac?! Not that I’m knocking the Big Mac. It’s delicious. Just saying. Jacob and Gavin and I ate the usually gut rot. After a stop at Starbucks we were on I-4 headed home. The ride home was a bit stressful for me. It poured rain most of the way and I didn't think about needing gas since the van usually makes it to Gainesville and back on a full tank. Our round trip to Orlando was four hours longer. Duh. I needed gas. Jacob rested and Gavin slept almost the entire way home. We didn't make it home in time to get Brie from school, but TD picked her up and we were all back home in our Buckingham Palace for dinner. Another city, hospital, and medical trip conquered!
Sorry the below pictures aren't great - my iPod Touch doesn't take very crisp photos.