Hello from the Hilton

Good morning! Little Miss Christi is still soundly sleeping and I’m too anxious to read so I’ll sit here in our hotel room and ponder yesterday’s craziness.

After blood was drawn yesterday we took off for school; however, I pulled over by the side of the road not for Christi to get carsick this time, but because she saw some baby lambs in a meadow days earlier. I knew I had to get to work, but to listen for a few minutes to oohs and giggles coming from a little girl with a very uncertain future just had to be done!

I called the hospital before my first class came in and started shaking as soon as I learned of the dangerously low numbers. I knew Dr. Maris and Pat were right and I had to get her to Philadelphia Friday night as I said I would a week ago. I called Paw Paw told him what flights I wanted and put him on booking it- little did I know it would take hours of his time, but thank God Joe put his negotiation skills to work, stuck to his guns, and got the airlines to allow me to use the credit they said months ago we had from a previously cancelled flight. My next call was to CHOP to tell them her counts and to see if her platelets needed to be transfused before we flew out. (It wasn’t quite 9:00 AM and she said she’d call Dr. Maris – later I learned he’s in California and she said he sounded very tired when she called him. Ooooohh, I’m not looking forward to Wednesday’s doctor visit! Smile.) Perhaps if you’re awakened at 5:00 AM, you’d think your patient could get to CHOP before 5:00 PM, but little did Dr. Maris know I had a literacy meeting on campus late that afternoon that I really couldn’t miss and still try to be a part of the state’s new endeavor.

I (alone) was planning to meet Traci and Jenn for dinner after I was finished on campus anyway, but I frantically called them told them what was up and asked if someone could meet me on campus and baby-sit Christi for my one hour meeting instead and then we’d zip right to the airport. Thankfully, they agreed and Jenn was waiting for us before I arrived at Ohio State.

I was a bit frazzled, but made it to the airport in plenty of time, parked in the long term lot and caught the shuttle van to the airport. As soon as the van drove away I said to Christi, “Oh no, sweetheart. I left your jogging stroller in the back of our van. I can get you around the hospital and the airports in a wheelchair, but what are we going to do without it?” She said she was feeling fine and she could walk (Oh, I hope that proves true and if she’s up and about it really puts a damper on any sight-seeing she may want to do.)

Booking our flights so late typically results in additional security screening checks so it came as no surprise when I was “selected”. Christi, the amazing trooper, just started pulling my bags off of the conveyer belt and walking them over to be opened and inspected. The sweet TSA man going through out suitcases joked, “If you didn’t have so many books, it wouldn’t take us so long to get through security.” I’m assuming he hasn’t spent much time in the ER at CHOP where you’re thankful to have a big stack of books to read and I’m also assuming he didn’t have my current Professor for class because this week we asked what our next reading assignment was he held up one the biggest of our five books and said finish this.

Our flight was uneventful and Christi drew the entire time in her Metropolitan sketch book Neetza and Caroline brought her from NYC, while I read. It was easy to catch the shuttle from the airport here to the hotel. Soon my phone was ringing. It was Tim who said, “I just happened to be in the area and wondered if you needed a ride or anything.” (Yeah, right!!! What a sweetheart! This Angel worked all day, coached his daughters’ softball game and now was driving around the airport trying to help us, unbelievable!) He was happy to learn Christi was feeling so well and he offered to bring his daughters into the city to play. While Christi would LOVE nothing more, I explained Christi doesn’t have a good immune system right now and it’d probably not be a good idea. I did ask him if he could take us and our Columbus neuroblastoma friends, back to the airport about noon on Wednesday and he responded, “You bet!” If all goes as planned, we are scheduled to fly back with the beautiful Eden Adams and her sweet mom and wonderful dad in Eden's great uncle’s little plane. Eden (Her site’s in Christi’s Clubhouse.) recently relapsed and is coming on Wednesday to have her first visit with the incredible Dr. Maris! What a blessing to have her wonderful mom call me last week and offer us a ride back with Rourke's uncle!! We pray that Eden’s fever soon breaks and that she’s able to get out here on Wednesday and we pray that Christi doesn’t get a fever and land herself inpatient.

Christi was just up and said, “I didn’t flush so you could take a look. I wiped some blood.” (That indicates very low platelets.) Needless to say, now she’s in the shower; she’ll eat breakfast I brought her and we’ll be getting the shuttle back to the airport and then catching the train into the city and walking over to CHOP. She shall end the month exactly the way she started it- in CHOP’s Emergency Room and getting platelets. Here’s wishing you a great day!