"Looking" for a miracle

Getting to and from Atlanta was uneventful, other than a four-hour delay on the tarmac coming home. The altitude did not seem to have any effect on the eye. What a great long weekend I got to spend with my high school friend Sheila and her family (Barry, Austin and Devin). We jam-packed everything we could into the short three days. We saw a movie (The Lucky One), went on a 90-minute electric car tour of Atlanta showing the city where Gone With the Wind originated, went in the CNN building, and walked through Centennial Olympic Park. We did a tour of the Coke Museum where we sampled Cokes from all over the world and obtained a sugar rush, and realized we were famished and needed food, so we stopped at Bahama Breeze for dinner and enjoyed some outdoor Jamaican music and food on the patio. The next day we saw Sheila's sister and her son, and then went to the Georgia Aquarium. While we were enjoying the fish and a dolphin show, Barry was preparing for an evening happy hour/party at the house. I got to meet a lot of wonderful neighbors and even got a hands-on healing by her energy-healing neighbor Carol. What a great treat to get away without the kids and with no worries. Sheila's been waiting for 20 years for me to come out there and so she bought me a ticket. The kids loved receiving miniature bottles of Coke compliments of the Kennedy-Luppowitz family as well as the tee-shirt and sweatshirt.

After returning home, I had several doctor's appointments. Today is day 23 of a high-dose Prednisone. Unfortunately, according to the photos I've been taking and what subjective vision I see, there is no significant improvement, if any, but I do see changes. I feel like there is a wall of pebbles on the right side of my eye. I return to the doctor this Friday for further photos and evaluation.

I finally spoke with the doctors in Philly, who have used this high-dose steroid method before, yet it had never been used for VHL or an optic nerve tumor. They were generally using it for inflammation and fluid in the eye. They would not give me any percentages of whether or not this would work, as they said every case is individualized. They did tell me, in my situation, it appears that the damage I'm having that is changing my vision so rapidly is due to the fluid that the tumor has produced, as well as swelling. That's why I describe my vision as like being under water, because I'm looking through a layer of murky fluid. When I asked if they can aspirate the fluid out, they said no because the fluid is within the cells, and it would damage the cells, but to be patient because my problem takes longer than 2-3 weeks to repair. It could take up to two months, in fact. My local doctor wanted me to fly out so they can visually see my eye, but they felt there was no need since he's sending them weekly photos, and they will see me if this treatment doesn't work. As for anything else in the works, they know of nothing within our country or elsewhere.

So, this is where all of you come in. I need to be the next miracle and everybody please say your prayers that this will happen.

Although my eye has changed, my brain tumors are stable. I just had an MRI on my abdomen and pelvis on Thursday, which also showed no change in any pancreas cysts or kidney cancer. Woo hoo! Thank God, because I put the idea of starting the search for a live kidney transplant on hold while I've been dealing with the eye issues. If this eye tumor would just stop growing and producing fluid, maybe I can get a few more years and technology will advance.

Speaking of technology, I now have an iPhone 4G with Siri -- a new friend. It has voice recognition, which is cool, and it can look things up for me.

This past weekend I was lucky enough to go to the Genessee Theatre to see SafetySuit and Daughtry for a concert compliments of my sorority sisters, Patti and Nancy. We had awesome seats and even got to go on SafetySuit's touring bus and hang out with the band. We took some photos, got a signed CD, and had lots of laughs with DiTy, Nancy, Alyssa, Patti, and Katie. (Alyssa is married to the manager of SafetySuit.) We started the evening at the Gillespie house for cocktails and appetizers.

Hope you all had a great and lovely Mother's Day. This was actually one of my better ones. My kids chose not to bicker, which was amazing. We made a day of fun, playing games in the backyard and hanging out as a family. We ordered a BBQ grill as my gift. Alyssa made the most beautiful card that made me want to cry. The sweetest part says, "Even though my mom can't do things that other mothers can, I will always love her." It was just such a good day.

We started our countdown for the end of school. Only 12 more days of freedom until the kids are out. Yikes! Wish me luck for Friday's eye appointment.

Toughing out another week

After being discharged from Northwestern on Friday, I accompanied Alyssa to a Brownie campout at Camp Timberlee in Wisconsin on Saturday! It sounds like a crazy thing to do, but it was really important to Alyssa and we made some fun memories together. Other than the cold (30's) and rain, we all had a good time. However, I feel like I am still in recovery mode from that...

Today I had photos taken of my eye to see whether I was having any positive or negative results from the Prednisone drug. Apparently, I posed well because the technician said he got some great photos and he spent over an hour taking them! After viewing the photos, the doctor called me this evening and said he feels that my eye looks the same or maybe even a little better. He sees blood in the area, as well as a lot of inflammation. He is not concerned that my vision seems blurrier to me right now. He feels all the changes and flashing lights just means that the drug is having a shocking effect on my eye. Hopefully, this will improve as the blood dissipates and the swelling goes down. Presently, I take 80 mg./day of Prednisone. This is much lower than the 1000 mg I had in the hospital, yet it is making me feel very different, i.e. restless, interrupted sleep, nervous energy & sweaty. The eye doctor is not worried about the short-term effects this will have on my body because he is more interested in saving my eye. On the other hand, my internist is concerned with this high dose and feels it is causing kidney damage and putting stress on my body - my blood pressure is high and my blood sugars are high. My kidney function labs are really bad as well. For now, I am going to take this drug week to week and will follow up with both my eye doctor and medical doctor next Tuesday and Wednesday re: further plans.

Because the doctors do not believe it is dangerous for me to fly, I am leaving for Atlanta tomorrow as scheduled to visit my friend, Sheila. We will just play it by ear regarding our activities and do as much as my body can tolerate. Hopefully, I will feel good. I'd love to see where the Olympics were held. I am very excited to get away, but am not looking forward to the heat. It is supposed to be VERY hot there - about 88-degrees!