Tuesday January 9, 2001
After we returned home from Alex's one year checkup at Duke, we stayed put for a whopping eight days before flying to the Bay Area to attend the wedding of a client of mine and visit with all of our friends. While we were there we stayed at the house of Dave, Corinne & Amelia Roberts. As most of you who read these updates know, Dave was diagnosed with ALL last year and is in the middle of a lengthy chemotherapy regimen. He's currently doing well and has even returned to his job as a Firefighter.
We only got to spend a little time with the Roberts, as they were leaving for their own trip to Disneyland the following day. They were nice enough to let us stay at their house for the weekend which was a welcome change from staying in a hotel room. Three weeks on the road for Alex's one year checkup took its toll on us both financially and physically.
We spent the next few days traveling around the Bay Area visiting almost every single person we had met while we lived there and eating non-stop! <grin> We had dinner with our friends Mike & Kathy Wright and Jill & Jim Lauffer, lunch with our friends Jeff & Liz Bishop and their daughter Katy, dinner with our Pastor Ken Jensen and his wife Betty, breakfast with Krista (one of Alex's favorite nurses) and her husband Aaron, spent an afternoon at Oakland Childrens Hospital and visited with our old neighbors. Of course we also attended the wedding of Michael Galli (of Redjellyfish.com) and his wife Ann which was a blast. Alex spent almost the entire reception out on the dance floor! Of course whenever Andrea or I tried to dance with her she would run away into the crowd. Already embarrassed to be seen with her parents!
The funniest part of the reception was when Alex sat down next to a 13 year old boy who was sitting on the stairs. She put her hand on his leg, looked up at him, smiled & said "Hi" while batting her eyelashes. The next morning she was talking in her sleep and Andrea heard her giggle and say "cute boys". I've now decided that Alex will enter a nunnery when she turns 5 and won't be allowed out until she's 30!!!
After flying back from San Francisco we spent seven whole days at home before flying down to Andrea's parents for Thanksgiving. We took Alex to Disneyland as a dry run for her "Make a Wish" trip to Disney World and Andrea's cousin Kari signed us in for free (Thanks Kari!). Alex had a great time and of course "Small World" was her favorite ride (can't get that darn song out of my head!). The funny thing is that her favorite character was Captain Hook from Peter Pan. She likes the bad boys! Yet another reason for the nunnery!
After Thanksgiving Andrea and I figured out with the exception of January & April, we had flown every month of this year. We decided that we would try to leave the house as little as possible in December. It was definitely time for some downtime and we prayed hard for continued good health for Alex. Alex's blood test the week before Christmas came back perfectly normal and we were able to relax a little bit knowing that we were going to have a great Christmas. Andrea spent a lot of time and effort decorating our house and it was great to see Alex's face when she saw her Christmas tree for the first time.
As some of you might know it's been a long time since Andrea and I have had a "normal" Christmas. Christmas 1996: Andrea was pregnant with our first daughter Sydney (who died in utero) and was on and off bed rest. Christmas 1997: Andrea was pregnant with Alex and again on and off bed rest. Christmas 1998: Arrived 6 weeks after Alex was diagnosed with leukemia and immediately after her first round of chemo. Christmas 1999: We were living in North Carolina while Alex was recovering from her cord blood transplant. This year we were home, together and healthy for the first Christmas in 5 years!
Andrea's parents, her sister Wendy & brother-in-law Ray came up for Christmas, so we had a full house. Alex has a great nickname for Ray. She knows how to say Ray, but for some reason she prefers to call him "Uncle Grape". We had a great Christmas together and Alex got so many presents it took her 3 days to open them all. Really she's not spoiled!
Christmas went by too quickly and we spent a quiet New Year's at home thinking about the year 2000. We are extremely thankful for all the support we've received over the last two years. It's been quite a rollercoaster and there have been times when we didn't think we had the strength to keep going. Without the support of literally hundreds of people I don't know how we would have survived. After midnight I went in and prayed over Alex. As some of you may know I'm not nearly as religious as Andrea and my faith has definitely wavered over the past two years. Yet I still believe that God is looking out for Alex and keeping her with us. I just wish I knew what the overall plan is going to be. It's hard to live with so much uncertainty, but I guess that uncertainty is what life is all about.
After New Year's we flew to Disney World for Alex's "Make a Wish" trip which is where this update is being written from. The Make a Wish Foundation paid for all of the travel arrangements including a limo from our house to the airport. Our Make a Wish volunteers (Lisa & Walter) met us at the airport and brought even more presents for Alex. We then flew from Seattle to Dallas to Orlando on American Airlines who had a huge cake, muffins & danish waiting for us at the airport in Seattle and bumped us up to first class on both flights.
When we arrived in Florida we were met by a volunteer (Jay) from Give Kids the World, which is a resort for children with life-threatening illnesses. Make a Wish arranged for us to stay at the GKTW resort for five nights in a two bedroom villa. The resort is incredible with a pool, game room, ice cream parlor and tons of other stuff for the kids to do. We haven't had a chance to spend a lot of time at the resort yet, because we've been too busy at Walt Disney World. Sunday we had an early (by three days) birthday party for Alex at the Sandcastle Club in the Beach Club Resort. Attending were both Andrea's parents and my parents; Craig, Kym & Maddy (one of Alex's transplant buddies) and the following January 1998 Playgroup members:
After the party we headed over to Epcot and spent the rest of the afternoon walking around the park. We had dinner at the Garden Grill which features down-home cooking (fried catfish & cornbread stuffing) and Disney characters (Chip 'n Dale, Pluto & Mickey Mouse). The kids had a great time and the parents got a chance to relax and get to know each other face to face. After dinner we headed out to watch the Tapestry of Nations parade and the Illuminations light show and fireworks. By the end of the day we were completely exhausted so we all headed home with plans to meet the following morning at GKTW for breakfast.
"OH $#%@!" Those were the first words out of Andrea's mouth Monday morning when the phone rang and we discovered that it was 9 am and everyone was at the front desk waiting for us. Seems our clock radio alarm didn't work too well and with us still on West Coast time we overslept. If you know Andrea, you know that she hates to be late. Of course I think we've been on time maybe twice in the past two years, but she does hate to be late!
After getting ourselves together we headed over to the Magic Kingdom to spend the day with everyone. We managed to fit in six rides (Dumbo, Small World, Peter Pan, Pooh Bear, the Disney Train & the Toon Town Rollercoaster) over the course of the afternoon. You have to imagine the reaction of the ride operators when they asked us how many in our party and we said 16! Luckily Alex's GKTW button allowed us to go to the front of the line at least a couple of times. The kids also got to spend a lot of private quality time with a bunch of Disney Characters including Winnie the Pooh, Tigger, Eeyore, Minnie Mouse, Donald Duck, Pluto, Goofy & Cinderella and two of her mice. They would only allow two adults in with the four kids, so Andrea and I got to experience what having quadruplets must be like! I was real tempted to tell everyone that they were quads and that "isn't it amazing what medical technology can do!" As you can see from the photo here they don't exactly look alike! <grin> In summation all I can say is we had them for about 30 minutes and managed to return all of them to their parents safe and sound! I cannot imagine how my parents survived having four children. 30 minutes with four 3 years old and we were ready for a nap!
The January '98 members that attended decided that this will be an annual birthday party for all of the J98 kids. Next year we'll probably have it between January 11th & 14th. Make your reservations and start saving today! Hopefully next year Alex will be yet another year into her permanent remission.
As always we want to thank everyone who has given us their support and love over the past two years with special thanks to the following people/organizations:
and of course everyone who attended Alex's birthday party!
Andrea, Todd and Alex
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