Reflecting on Philly

“It’s not even 11 o’clock yet; you’ll make that flight.” Those were Liz Scott’s famous last words as she so kindly dropped us off at the airport yesterday. I knew we were early, but we either had to wait at the hospital or at the airport and the airport seemed one step closer to home in my mind so we went there. With three (THREE, yes 3) earlier flights scheduled to take off prior to ours, I assumed that we’d get on one of them. What I didn’t imagine was that all three (THREE, yes 3) would be cancelled due to poor weather. With over five hours to wait, I asked Christi what she wanted to do. Eating was her top priority so we did! Then we found the perfect little corner, complete with an electrical outlet so that we could plug in my battery less computer. Christi played hours worth of computer games, read and did American Girl puzzle books while I finished all of my reading for my classes and enjoyed her company immensely. She is so delightful!

Our plane was a bit late arriving in Detroit where we were scheduled to make a connection. While hustling to the gate Christi said, “Mom, your phone is ringing.” I said, “Christi, I don’t have time to get us some food, use the restroom and make our flight. I’ll get to it later.” Well, arriving at our gate and learning that the airport was not officially closed, but no flights were allowed to land or depart because of yet another horrible summer storm, I checked my phone and it was my mom saying, “We’re at the Detroit airport just about ready to get on our plane.” What???? Most likely Christi and I rushed right past her as they were at gate 7 getting ready to go visit Joe’s brother and we arrived just across the hall. Neither one of us knew the other was even to be at the Detroit airport last night!! Of course after our hustle we were now at gate 71 and trying to decide if we should go back and visit with them or if we’d miss our connection if we did. I got Christi her dinner and then when she finished I decided, “Why not?!! This opportunity will never present itself again and if I miss my flight I’ll take their car keys and drive home; it’s only two hours!” Christi was thrilled! Since it had just been the two of us for hours on end she was thrilled Grandma Nonee had a deck of cards on her and they sat on the floor and played cards. I’m glad we did because not too long after that we were all buckled up in our seats on the airplane where we just sat for two hours before we could actually take off. I kept thinking our plane had to be the very last one to take off last night; yet, when mom called today I learned that they sat there an hour longer than we did. Yikes! I’m grateful we’re all safely at our destinations now and so thankful Aunt Marty was able to keep Shayla an additional night. (Still Shayla didn’t want to leave today; the little Princess had so much fun in her five days with the Kings!)

Yesterday morning started off with quite a scare. The wonderful Tim was waiting outside the Ronald House gates for us and he delivered us to the hospital. Once inside I sat Christi down with her bag of Cheerios for breakfast and when I went to get her the bottle of water I just bought at the Ronald House I realized I didn’t have my bag. It "only" contained my driver’s license (important for trying to board an airplane in a matter of hours), all of my money, and my car keys to allow us to drive two hours home from Columbus, not to mention the Philly Tasty Cakes Tim had just given us and which came in quite handy while we were buckled on that plane last night!!. Christi said she was 80% certain she left it in Mr. Grant’s van since she was carrying it and of course his phone number was in my cell phone – in my purse! I registered Christi and told the lady asking for my insurance card, “Really, I do have insurance. I promise. I just lost my purse.” She asked if I wanted to call someone and I didn’t know Tim’s number. I left Christi and ran to a computer where I posted a desperate plea to Tim- thankfully a faithful blog follower who brought my purse right back to the hospital without even making me feel like a total idiot! He is amazing! What a sweetheart!

As soon as the scan was over we hopped into the elevator to head up to Dr. Maris and who was in the elevator but the great doctor, Dr. Maris! He chattened then told us he’d see us in a little bit. An hour and a half later, he came to get us smiling and saying, “What did you do to your eye, Christi?” (as it was still black and blue yesterday from Sunday’s crash into Aunt Marty’s wall.) I said, “She gave her parents quite a scare with it is what she did!” He said, “She did me too when I saw her in the elevator and I pulled up her scan right away and there’s nothing there, so…….what did you do to your eye, Christi?”

There were some older girls in the playroom drawing so she wanted to head back and not stay with Dr. Maris after her exam was over and that was just fine with me. Here’s how the 35 minute conversation went:

“What did you see on the scan?” he asked me. “I text messaged Shayne ‘overall subtle improvement’ but it’s still there.” He said, “Yes. It all looks better though, especially her liver, but we’ve now reached a fork in the road.”

He told me that he couldn’t say that one treatment was better than another and that we don’t exactly live around the block. I told him that I wanted him to determine what treatment was best for Christi- not based upon how difficult it would be for our family. He said something like when there are treatments with not enough know about them to say that one is better than another, he considers convenience. He went on to say that quality of life is very important right now for Christi and what she experienced all winter and spring was not a good quality of life for her, nor anything but horrendous sacrifice for the other three members of our family. He said he wanted to do the BSO-LPAN because he knew it’d get us home for a long period of time. Dr. Maris reminded me that the study doesn’t call for tests/scans to see the effectiveness of the drugs until day 60 and we tested Christi quite early at day 26. We still may see a small bit of improvement. He said he wanted to do test in case it didn’t work and there were new spots discovered they could jump right into something for her. He said that since nothing new was lighting up he was comfortable waiting about two or three weeks to get her blood counts up to qualify for another clinical trial.

He kept trying to get me to tell him what treatment we wanted next and I was determined not to tip my hand. If he makes a decision which is later determined not to work I’ll never see him again. I have to live the rest of my life with myself!! He said, “Come on. Now you thought about it. You talked with Shayne about this. What did you think was going to happen today? Did you think I was going to send you home on something? What did you think the scan was going to be like?” Finally, I answered, “I hoped the scan would have been a little bit better and yet I would not have been surprised to see a couple of new spots. Shayne and I haven’t spent many nights in the same state over the past six months and we really have not talked about this. We know Fenritnide is one of the few things she hasn’t yet tried and the west coast docs typically follow BSO with it, but that’s all I’ve thought.”

He told me that she doesn’t have the platelet count to qualify for Fenritnide and there aren’t even any open spots for her yet; however, she is reserved already in the next slot (dosing level four) but they don’t know how many weeks until that opens. (Gooooo, Dr. Maris! Always thinking ahead!) He’s hoping her disease just simmers and doesn’t take off until it does open. He thinks this is a drug that will help preserve her quality of life. (It’s all oral chemos which do not cause low blood counts and typically the kids feel ok on it and it does not cause hair loss- like the suntan lotion, hee hee.) He went over other options and re-stated that it’s good she still has options, even if he cannot say anything has shown much success because it has not. He told me that before she begins she’ll need to come back for a full work up of tests, but for right now to take her home and enjoy her and enjoy the time off from treatment for a couple of weeks. We’ll continue to go to the hospital for blood draws and wait on her counts and for a slot to open up in a clinical trial for her while our prayers will continue without ceasing.

SMALL WORLD: The girls were THRILLED about going to Girl Scout camp today. (This was going to be the night the fourth graders got to stay over night in their sleeping bags and tents!!) At 3:00 however my phone rang and I assumed the heat was too much for Christi and that she was ill. No, not at all! She was having a fabulous time, but a horrible storm was blowing in and could I come and pick up the girls? I was in class and Shayne was also more than an hour from home meeting with a client. Thankfully, the sweet Girl Scout leader came to our rescue by saying she’d take them home until I could get them. When she gave me directions, it was to my old neck of the woods!! I hadn’t been to St. Stephens for a very long time; it was great as I drove around pointing out the sights to the girls and they were in their own little world chatting in the backseat trying to ignore their old happy mother.