July 11th Can't Get Here Fast Enough

We are down to the one-week mark before the July 11th date with Mt. Sinai in New York. Bucky and I are more depressed every day; the day can't get here fast enough to suit us. Bucky heard from his sister Linda and her husband Jack tonight. As medical professionals, they were shocked to hear that nothing has been done to deal with the aneurysm yet -- in their dealings with children with cancer, an aneurysm was always dealt with immediately -- it is more life-threatening than the cancer. Both Bucky and I have had individual appointments with our family doctor the last two weeks, and each has apprised him of Kim's problem. He told Bucky today that we have some very, very serious decisions to make next week that will determine Kim's entire future. We are nervous wrecks that we are gambling with her life. Needless to say, we are doing everything we can to keep her blood pressure low and keep her comfortable. When I called to make the requested two-week appointment with the interventional radiologist in DE, Dr. Albani, I was told she was on vacation that week. I told the scheduler that we had an appointment with Dr. Olin in NYC on 7/11 and she told me to wait till Kim sees Dr. Olin before making an appointment with Dr. Albani. I also left two messages with Dr. Albani's office, asking if it is safe for Kim to take the 3-hour trip to NYC by car or if she should be transported by ambulance so she can be monitored on a very tense day, and as of today, 7/3, I have not gotten a response.

Every day Kim is more depressed as well. Today I woke her at 10:00 by phone; we picked her up and visited her cousin in Middletown; at 2:30 we were on our way to have lunch, and she asked to go home to sleep instead. She is exhausted. Kim brought her IPod with her for the ride to Middletown today. She had her ear buds in and with our radio on in the front seats, we could still hear her music blaring. When we stopped for gas, we asked her if she had the buds plugged in all the way because we could hear the music so loudly. She told us she can't hear out of her left ear so she needs her right ear to compensate for it. When she walks, she seems to be doing better than when she first left the hospital; however, she is off balance, so she needs the cane to catch her when she loses her balance. The delay in medical attention has Bucky and I on edge. We have no energy. We feel like doing absolutely nothing. We are listening to our bodies tell us to take it easy. The next couple of weeks will be very tense for us.

Through all of this, humor is still an important part of our lives. At Karen's today, we were able to joke about the fact that no one will argue with Kim (we're all trying to avoid raising her blood pressure), so she's able to get away with whatever she wants. She also said she can say, "Oh, I just had a stroke," and get sympathy whenever she wants. All in good humor. Oh, and the cane is great for reaching out and grabbing someone, particularly Karen's two boys, whose necks fit pretty well within the handle of the cane. The fact is, none of us wants to do anything that will make things worse. So we are keeping her as happy as we can.

Tomorrow is the 4th of July. Independence Day. Big Whoopie. We are going to celebrate like we always do, and that will keep us busy. We are bringing Kim over to our house to enjoy the day; she told me today she's not sure she wants to go to the Fireworks at Swift Park tomorrow night. I suspect she'll be too tired to go. I wish I had the power to do something to make this situation better, quicker, get my daughter back on her feet again. We feel very helpless and useless in a world where Mom and Dad are supposed to make everything right.