Everyone who has ever been to Florida in July and August knows how oppressive the heat there can be. Everyday, up to 100 degrees and humid. The afternoon thunderstorms last generally a few minutes and cool things down a bit. Just a bit. Our second trip planned to visit Mickey was the first week of August, 2000. When we planned the trip about six months earlier, we hadn’t any idea of what condition I would be in. Hopefully, the DLI treatment would have worked and the trip would be a welcome celebration of good health and happiness. This wasn’t the case though, as you know, and it would be a rough go for me. We needed this trip and my boys needed a break. It was on.
We would be flying into Orlando and staying in Disney at the Grand Floridian hotel for four days and finishing the last three at Aunt Michele’s for a visit. The boys would be flying for the first time and were so excited to see Mickey and Company. Our last trip, if you remember, was so hard. Joey was still in womb and Nick just 2. My diagnoses of Leukemia the day we left put a huge damper on the whole trip. Here we were again. Four years in the future and back in the same boat. And I was sick. Really sick.
The flight was uneventful other than the boys really enjoying the experience. They thought it was so cool. We had a shuttle to the hotel and got to our rooms a tired bunch but ready for fun. It would be a great week! The first day out we enjoyed breakfast with the characters. Nick and Joe loved it. Mickey Mouse pancakes and Whipped cream! Mmm! It was off then to see the sights and ride the rides. After about an hour, the heat started to drain me. I was having fevers daily for a while now and the heat was not helping the situation. I still was having a tough time eating with the awful sores inside my mouth. I had lost a lot of weight too, the Interferon was taking a huge toll on my body. I toughed it out for about three or four hours before we had to go back to the room so I could rest. Dinner would be in another themed restaurant where Joey met his match…the Queen of Hearts! She scared the hell out of him! Pretty funny. We took some family photos and retired early. The next day was like 1000 degrees! The heat and humidity were just too much for me. My memory of that day was of leaning on the double stroller we had rented to help us navigate the boys around the park. The rental stroller was wide, sat two, and luckily, strong enough to carry my body weight. I was thinking, “Please just let me get through this day for my boys”. I was literally passing out behind the stroller. Hanging on for dear life. I couldn’t make it anymore. Lor alerted the Park security who got me to the Disney Park Infirmary as quickly as possible. What else could go wrong. I was dehydrated and weak from the heat and really not up to the task. My condition was deteriorating day by day. They gave me fluids and contacted my doctors in Philly to coordinate and be aware of the situation at hand. This process played out for the next three days. Get up, breakfast, hit the park, do rides, see the sights, hang in as long as possible and head back to the Infirmary for more fluids and medication. Lor and the boys were wonderful. We did our best to have a great time. I felt so bad inside, my grief was well hidden yet overwhelming. I couldn’t stop thinking that this could be our last vacation together. I knew my blood counts were out of control. I knew that the Interferon was just a temporary fix and was not working at all. I had to keep going and give my boys a time with me that they would always remember. “Alright guys…Let’s go have Dinner with Goofy and Pluto”!
Uncle Ed and Aunt Michele picked us up on Thursday morning to head over to Lake Mary to spend the weekend by the pool and let the boys relax with their boys Aj and Max. I would get some much needed rest and a respite from the heat. Lori would get time to hang out with her friends and enjoy a few days of normalcy. She needed that badly. Poor Michele and Ed had to entertain us while we were in a worse situation than the last time we visited. We all made the best of “It is what it is” and enjoyed our time together as did our boys.
It was time to head back. The week went so fast considering all of my issues but I needed to get back home. I had follow up bloodwork that needed to be done and the side effects of the Interferon were getting unbearable. We made the trek back home and I felt so fortunate to have made the trip with my family. Memories that I hope my boys would cherish forever. I still had a ton of fight in me though. It was the fourth month of being on Interferon injections. Two more months to go after August to be eligible for the new drug study. Still no acceptance yet. I’m so scared.
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