December 13, 2007

Eye Appointment

Hi Everyone,

I’m afraid there’s not much to report after Evan’s appointment with the retina specialist on Tuesday. After two and a half hours of testing, he basically just confirmed what we already knew - that the fluid collecting behind Evan’s retina is coming from a leaking blood vessel. The only new information we got was that the problem is most likely being caused by the high doses of the anti-inflammatory steroid (Decadron) that Evan has been taking for the last four months.

The only good news about that is that Evan’s oncologist has been gradually lowering his dose of Decadron, and we’re hoping he will be off of it completely in about three weeks. The eye doctor expects Evan’s vision problem to go away on its own within a few months after he stops taking the medication. If not, the treatment would be some type of eye injections or a laser eye surgery.

We’re not too happy about having to wait for months to see if it goes away on its own. But evidently the treatment options are pretty major, and probably pretty expensive, so they don’t just jump into these procedures unless they absolutely have to. So, once again, the name of the game is “wait and see.” You would think we’d be used to that answer by now, but it doesn’t seem to be getting any easier.

Hopefully we’ll have better news the next time you hear from us. Until then, we hope you all have a wonderful Christmas!!!

Love,
Margot

December 9, 2007

Our Trip to Southern California

Our first day at Disneyland!















Dear Friends and Family,

We hope you all had a happy Thanksgiving, and that you're enjoying the Christmas season! Thanks to all of you who sent messages to us while we were gone - it was fun to come home and find all your greetings waiting for us.

We had a great trip to Southern California. It was so nice to get away! Evan never felt very well, but he was a good sport and made the best of it. In all, we spent one day at SeaWorld and two days at Disneyland. Fortunately, we were able to space out the amusement park days so Evan and I could rest for a day or two in between. (Having fun was exhausting!)

On our "days off" we played on the beach, went to the movies, and took a few well-deserved naps. The best part of the trip was having my parents, my sister, and my brother and his family, there to share the first three days with us. We had Thanksgiving dinner with everyone on Thursday night, and spent Friday at Disneyland all together. It was great fun! (Thanks for making the trip down you guys!)

The big discovery for the week was that Lindsay (our 5 year-old) is a roller-coaster hound! The faster the better. Her favorite rides were Space Mountain in Disneyland, and Mulholland Madness in California Adventure. I think she went on each of them 4 or 5 times. She'd throw her hands in the air and start screaming as soon as the ride started moving. It was hilarious!

Ryan had a great time on the rides as well, but I think his favorite part was the motorized scooter we rented for Evan to get around on. Evan let him take it for a spin a few times, and Ryan thought that was the greatest thing ever. (If only they sold them in the souvenir shops.)

As far as Evan's health goes - the vacation ended almost as soon as we got home. Evan started taking chemotherapy again last Monday, as well as all the other drugs that go with it. Within just two or three days he started feeling more tired and a little queasy again. No fun! But the biggest annoyance has been with his vision.

Just prior to our trip, Evan started seeing little dark spots out of his right eye. At first they would come and go, but while we were in California one large dark spot appeared and has been there ever since. It makes the vision out of his right eye dark and blurry. It's driving him absolutely crazy.

We met with an Ophthalmologist on Friday and he found that fluid is collecting just behind Evan's retina. Now we have an appointment with a Retina Specialist this Tuesday to find out what they can do to treat it. (I didn't even know there was such a thing as a Retina Specialist!)

Anyway, we would sure appreciate your prayers that they will be able to treat and eliminate this problem for Evan. Out of everything he's had to go through and all the side-effects he's had to deal with, this has become, by far, the most frustrating issue for him. It's just one problem too many!

I'll let you know what we find out from the specialist on Tuesday. Thanks for all your thoughts and prayers!

Love,
Margot