An Update as 5/27/13

This past week we enjoyed some lovely time with family. Our niece Rebekah graduated from Eckerd College in Florida with a degree in Marine Biology. That created the perfect opportunity for us all to gather for a relaxing week at the beach. We stayed in the charming little village of Passe a Grille.

I am especially grateful that Delta Airlines was as flexible and accommodating as they were because of the number of times our travel plans changed from when we originally booked the trip in January. First we had to push our trip back from Thursday to Friday when Bob was scheduled to get a second dose of Rituxan on Friday. Then because of a prolonged negotiation with our insurance company over payment for the medication, Bob's infusion didn't get started until midday, which caused us to miss our Friday evening flight and to go instead on Saturday morning. We also changed our flight to return on Thursday so that Bob could have his next infusion on Friday. Then midweek it was determined that it might be best to wait until our consultation with the doctors at Mayo Clinic before having more infusions. That meant we could stay at the beach until Saturday. So we changed our flights once again! And because it was for medical reasons (and Bob is a good negotiator) the good people at Delta did not charge us any change fees for all that craziness!

When we returned home, we got to spend a day and a half with Evan, Michelle, and our dear grand baby Everest. 

Through busy days and restful days alike, Bob has continued to have two to four small seizures a day. It takes several weeks for the Rituxan to take effect, so we are hoping it will do the tricksoon. We are eager to get to Mayo next week and hopeful that they can help us find some long-term solutions. In the meantime, we are enjoying the many blessings of life.

On this day of Memory, I hope that you took a moment for gratitude for those you love as well. It is good day to be thankful.

Megan

An Update as of 5-14-13

We are blessed to have wonderful doctors on our team! Bryn has, of course, been the star of our team. And thanks to a willingness to fit us into an already busy schedule, we were able to meet with our team captain, our neurologist, Dr. Blair Marsteller, while Bryn was in town to stay with Bob while I was at a conference. During that meeting, it became evident that Bob was going to need another round of one of the chemo drugs he was on in the fall. Dr. Marsteller made arrangements for Bob to be admitted to the hospital on Thursday and he also recruited a new member of our team, Dr. Kim Slesinger, an oncologist, to administer that medication. He also made use of our time in the hospital to once again start a round of the IV Steroids that Bob responded to well this winter, as well as to order other tests such as a CT Scan, a spinal tap, and more bloodwork to send to the world expert, Dr. Dalmau, in Spain. Dr. Marsteller also recruited yet another smart doctor to our team. We will be traveling to see Dr. Pittock, a neurologist at the Mayo Clinic in Rochester, MN, in early June. Dr. Pittock specializes in autoimmune neurology, one of only a few in this new specialty.

Bob has been doing better since starting on this new round of treatments.   The frequency and duration of his “episodes” has been reduced significantly. We are hopeful that there are answers to be found and that we have the right team in place to find them.

Thank you for your continued prayers and concern.

-Megan

Update:

Happily, Bob was only hospitalized for 2 days to receive the necessary dosage of Rituxin that he needed. In typical Bob and Megan style, life gave them a wonderful weekend of celebration as Megan was awarded the 2012 Thomas Ashley Graves, Jr. Award from The College of William and Mary during graduation on Sunday. Saturday evening, they attended a black tie event where Megan was also recognized for her esteemed work in education. As Bob said in an e-mail to family this weekend, "This was Megan's big day. Enjoy the pictures; trust me: I am sending you the best of too many!"

-Michelle





 

An Update as of 5/9/13

Hey Everybody,

I wanted to let you know that Bob is back in the hospital again. He was admitted this morning in order to begin another round of treatment with Rituxan. He is also having Solumedrol while he is here as well as lots of tests to see what's going on. That's because despite his being on strong steroids, his brain has been inflammed up again. While this has been discouraging, we are hopeful that the new round of medication is what he needs now to support his healing.

We are blessed to have our friend Doug McCready visiting from Columbus. That has been a great comfort. It is amazing that he happened to be here right when all this happened.

Thank you for hanging in there with us through this long journey.

Megan