Wednesday, September 14, 2011

Trip Of A Lifetime.........

Hi Everyone,

We're back from Disney and the trip could not have gone better. All the kids had a blast and most importantly Julia remained well. From the minute we landed we were treated like royalty. The wish foundation really does make these trips unforgettable. We had front of the line passes at the Disney parks and never had to wait in line for character greetings. All the characters knew Julia was a wish child and made it extra special for her. She got to have a private meeting with Cinderella, Princess Aurora, and Ariel. It was so emotional.....I had the first melt down of the trip! To see her so happy and excited after all she's been through and quite honestly wondering many times if we'd ever even get her there was overwhelming. We have spent many years holding Julia back and this trip was quite the opposite. We let her experience it all and looking back I can't believe we did. For those of you who know her well she is fearless and she showed us that even in Disney. She rode all the roller coasters including space mountain even though the signs clearly stated if you have any medical conditions you should not ride. She went on space mountain with Elio and Anthony and the two of them came off the ride white as ghosts and ready to vomit and then there was Julia laughing her head off and saying again, again. I took her on this wicked roller coaster at Animal Kingdom that was in a mountain, in the dark, went backwards, and had a 80 ft drop. I was so scared my heart was pounding and I looked over at Julia and she was so excited. I kept trying to hold her as once the roller coaster took off I realized it may not have been a very good idea and she kept pulling away from me telling me "mom, stop holding me". It took my stomach hours to get over the ride. She insisted on going again and there was no way I could do it again, and Elio.....well forget it he's terrified. So we convinced Anthony to go......poor kid came off crying and sick to his stomach. Again Julia wanted to go but now we were left with no one to go with her. Of course Julia said she would go alone. She begged me to let her go. So I walked her to the front of the line put her on the coaster and off she went. It was the longest 45 seconds of my life......I can't believe I let her go alone. If we let her she would have kept going and going. The bigger the coaster the more she wanted to go. I took her on the Star Wars ride.....I had to shut my eyes and thought I was going to vomit right on the ride....not my daughter (the youngest on the ride) she was front row and loving it. This kid really is fearless.

Than we boarded the lovely Disney Dream and set sail for Bahamas. The ship was beautiful and full of characters. They have this huge water slide called the Aqua Duck and of course Julia went right for it. She wasn't old enough to ride alone but she tried very hard to convince the guy she could do it alone. Anthony wouldn't go without one of us and than there was Julia who desperately wanted to ride alone. She made Elio wait in line for over an hour and they were 30 minutes late for dinner the first night because she had to get on the water slide. Julia celebrated her 6th birthday our first night on the cruise. They gave her a special cake and all sang happy birthday to her. She felt like a princess. Happy Birthday to my beautiful, strong baby girl! The cruise also made this trip very special for Julia and our family. We arrived in our rooms and there was a huge fruit and cheese and cracker tray welcoming us aboard. That night there were a selection of cookies for a bedtime snack. Than we received a royal invitation to a private party. We got there and it was our very own private party with Mickey. The kids were beside themselves. They got to spend 45 minutes with Mickey dancing and singing. There was also a professional photographer there taking pictures. Than the day in Castaway Cay (Disney's private island), we got tickets in our room for complimentary rentals and snorkeling. On the last night there was a giant signed Mickey with a card and all the pictures the photographer took at the private party. There was also 3 Disney nap snacks for the kids. Hats off to the Disney cruise line for making this a very unforgettable and special trip for our family.

We are so grateful to Children's Wish for giving us this experience. It gave us memories we will hold in our hearts forever. It made us stop and realize what we've been through and really thank god for how far we've come. There will never be another trip like this one. This trip was exactly what we all needed. One week away from the medical world. It was so nice that for 1 week we did not have to think about infusions, chemo, bloodwork, clinic appts, nothing. We were just a "normal" family on vacation. I wish it could be like that all the time. Of course you all now Julia and it would be too good to be true if it ended like this.....last night we had to rush Julia to Sick Kids for high fevers. We spent all night there and they have no idea where the fevers are coming from. We had gone to clinic Monday (remind me never to go to the hospital the day after coming home from vacation, it was a real slap in the face....welcome to reality), and her bloodwork was a little off. Her counts had dropped quite a bit from 8 days prior. I spoke with her oncologist and she wasn't sure what to make of it. Could it be something brewing or was her EBV back?? They ran the EBV test Monday and we will have results by the end of the week. She started school Tuesday (the first day since April), and when she got home became very unwell (fever, lethargic, and complaining of leg pain). Her counts had dropped even lower last night in emerge and she is now border line neutropenic...again. She will have to go back tomorrow if the fever persists for more cultures and to re check counts. Although the fever is still there she is feeling better today and more herself. As shitty as this was to happen only 2 days home I thank her for waiting till we were home to get sick. I can't imagine what we would have done if this happened while we were away.

I will post pictures of our trip once I sort through the 700 pictures we took. I haven't had much time for anything (except taking care of Julia), since being home. I will keep you all posted on Julia.

I want to thank everyone who bought raffle tickets for tomorrows draw and wish you all the best of luck. Mary will update the blog with the winners once Julia draws the tickets.


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