An Update as 7/17/13

Dr. Pittock, our neurologist at Mayo, told us that it might take up to four weeks for the steroids Bob is taking to take full effect. So we have been holding onto hope that they just needed more time. Bob had his fourth infusion yesterday and while we have had a few seizure-free days that have raised our hopes, the partial seizures he has been having have not disappeared altogether as we wish they would. We were warned back in the fall at UVA that it is difficult to get a brain that is in the habit of seizing to stop seizing and that certainly has been our experience since April. It has also been hard to see a pattern for what precipitates these events. We were so pleased on Sunday when Bob had a seizure-free day despite a busy day swimming with our grandson Everest, playing Frisbee golf with Evan and his two friends Eric and AJ, and then working into the evening to install a ceiling fan. And then today he had three “episodes” on what was a relatively quiet day.

We have nevertheless not given up hope and are learning to be productive and happy even as things are now. So, one way or another, we are encouraged by our prospects and possibilities. Please continue to keep us in your hopes, dreams, and prayers.

-Megan

An Update as of 6/25/13

Life has been full and rich with family time since we left the Mayo Clinic on June 14. We were home only three days, busy catching up with things that needed attending to and repacking our suitcases. We then headed to Columbus, OH, where we presented a workshop at the Ohio Connect for Success conference on Wednesday afternoon, and then enjoyed family time on Thursday and Friday before heading to the Chautauqua Institution, where we are vacationing with a extended family group of 17, including our 11-month-old grandson Everest, and our 5-month-old great niece Cora.

In our final wrap up with our two neurologists at Mayo, the decision was made to stay with the plan of 12 weeks of aggressive immune suppression to “test the concept” that Bob’s current difficulties are the result of an ongoing immune response or whether they are instead being caused by the scar tissue that is in his brain. When we return to Mayo at the end of these 12 weeks, Bob will retake the memory assessment he had on this visit. If there is substantial improvement (at least 30%), then we will conclude that the immune suppression is having a positive effect. If there is no real improvement, then the conclusion will be that the damage has been done and that we will instead turn to achieving better seizure control and developing compensation strategies for Bob’s current deficits. So we have a lot riding on the next 12 weeks. Our neurologist is skeptical that this trial will be successful, and has estimated that we have only about a 20% chance that the deficits are reversible, but we are steadfastly holding onto the hope that things can improve.  

Although there are certainly moments of discouragement, there are also beautiful moments that renew our spirits. We had one such moment while we were home. After Bob had worked hard for several hours mowing the lawn and cleaning out the beds, he called me to join him on the dock. He was tired so we laid down on our backs and gazed at the sky. Although it was a cloudy day, there was no rain in sight. And yet, as we looked up in astonishment, a rainbow appeared sideways as if part of a halo over the earth.

This was especially significant because we chose the rainbow as the theme for the wedding 37 years ago, proclaiming that it was “a sign of the covenant.” We looked at one another and said “everything is going to be all right.”

An Update as o6/13/13f

After two months of too much seizure activity, it was a relief to land here at the Mayo Clinic last week and to have four good days with no seizures at all. It was as if even the air here contained a special healing magic. But then on Friday, Bob had one small seizure. This was followed by four on Saturday, five on Sunday, and six on Monday. Clearly things have not been going in the direction we had hoped. But at least we are here in the company of world experts who can be involved in puzzling through this mystery. On Monday, Bob was hooked up to a continuous EEG to gather data about the electrical activity in his brain.

This was to have been a two-day test, but on Monday evening he had a particularly long-lasting seizure. This episode was exasperated by a fire alarm in our hotel, with all of the noise of the alarms, flashing lights and sirens (it turned out to have been a fire in the elevator engine room). We were all evacuated and Bob and I kept walking away from the noise and took refuge in a small park in a nearby residential area. There were two young boys playing on the playground who kept looking over at Bob, with his head all wrapped up with gauze. So he went to chat with them to allay any fears they might have. He asked them what they were playing and they said they were playing Zombies. He asked what Zombies were and they confessed “We think that YOU are a Zombie!”  Bob assured them that if he WAS a Zombie, he was a friendly Zombie and that they didn’t need to be afraid. We got  chuckle out of that.

All of that noise and excitement was not good for Bob’s inflamed brain and we ended up going to the ER Monday night. The next day he was hospitalized to receive some strong steroid treatments and to continue the monitoring. Three days in, things have still not settled down to the extent that we’d like, so it may be time to consider even more aggressive treatments.

We’ll keep you posted. As always, we are so grateful for your continued love, prayers, and concern.

An Update as of 6/8/13

This is Bob, here, sending in an update from the Mayo Clinic in Rochester, Minnesota. I’ve been giving the world’s experts in my mysterious condition a real puzzle and even stumping them as to what is actually going on. The word is not all good and not all bad from the tests they have run, which will now continue on into next week. There has been and is some permanent damage to certain parts of my brain, especially the parts involving memory. It is not fully known, however, as to how much of that is recoverable and/or can be picked up by other parts of my brain. This is clearly a marathon and not a sprint. Fortunately, I have a lot of experience with marathons. The next few months will be crucial, with more tests and treatments. Life goes on – that’s the good thing – yet not the way anyone expected or would have desired. What a strange and curious time. Everyone’s hopes and prayers for a full recovery are appreciated. I love and value the community that is holding me and my family up in your thoughts and prayers and the work we all have yet to do together as a wide, extended community of hope.

That said, I want to share a wonderful serendipity. Early this morning I was feeling a little scared and sad about the challenges I have been facing so, while Megan was still sleeping, I went out for a walk to clear my head. The people at the front desk gave me a map and pointed me in the direction of Silver Lake Park, where they said I would find plenty of trails and inspiration. Setting out, I took pictures of landmarks along the way to make sure I would be able to get back to the hotel safely.

Much to my surprise and delight, I arrived at the park just as the gun was about to go off for the start of a 5K race that was devoted to raising consciousness about and money for cancer survivors. Showing up at just that moment was really amazing. I have not run an actual race, something that has been very important to me for many, many years, since the start of this whole ordeal as the end of last August. So seeing the race all set up, with all the people and balloons and support personnel, really started my adrenaline flowing. I immediately knew: I was doing this race.

The race was designed with two groups of participants: runners and walkers. I joined in with the walkers and I walked around the entire lake, never getting lost or dehydrated because the route was clearly marked with several water stops along the way. To my delight, I didn’t even come in last! This was the first race I have participated in since the start of this whole ordeal at the end of last August, and it felt great to be out on a course again. By the time I got back to the hotel, I had gone about 5 miles and then, later in the day, Megan and I went back over to the lake in our car, to walk around it again. She thoroughly enjoyed being outside, in nature, with the gifts of God so clearly at hand.

How could anyone plan something like that? To show up at a random place, at a random time, right when a perfectly designed race was about to start? Amazing! It’s enough to make you think that the anxiety and stress of this ordeal notwithstanding, everything is going to be all right.

 

An Update as of 6/4/13

We had a good first day at Mayo. Because it was drizzling rain, we decided to take the underground walkway to the clinic. It was a short walk from our hotel and we never even had to go outside. We were surprised, as we got off the elevator in the basement of our hotel, to find the walkway as busy and as crowded as any morning rush hour train! We took the plunge and joined the stream of people flowing briskly toward this medical mecca, the sick and the well together. 

When we arrived at our appointment, the waiting room of about 60 chairs was already filling up, even at 7:15 in the morning, with a long line forming down the middle.  Four women at computers worked to check people in at the front of the room. When it was our turn, we handed over the three sets of medical records we'd brought with us, along with five CDs of images, and we were given a pager.

When we got to see the doctor, he spent nearly an hour with us, efficiently asking questions and gathering information to piece together the storyline of the past 9 months. Bryn joined us on speaker phone and made an invaluable contribution. One thing that stood out to me in that conversation was that he said that people who he sees with this condition have rarely been diagnosed as quickly and had treatment begun as early in the disease process, and that Bob's current level of functioning and even his being alive is attributable to that, thanks to Bryn's tenaciousness. 

When it got to the recommendations part of the conversation, lots of information was coming at us pretty rapidly. Thanks to tenacity and good fortune, over the next three days Bob will have bloodwork done, a PET Scan, an EEG, an MRI, and three other appointments with doctors. Like our last hospitalization, they are being very efficient in gathering the necessary information to make informed adjustments to his treatment.

Dr. Pittock acknowledged that we don't know and can't know at this point about the level of reversability of Bob's current deficits, but we all remain hopeful that if we can get the inflammation to settle down, his brain can heal.

Thank you for staying with us on this long journey. We are grateful for your prayers.

Megan

An Update as of 6-3-13

We have arrived safely in Rochester and have settled into our hotel, which is just a block from the Mayo Clinic. We don’t know how long we will be here, but we have our first appointment with our new doctor, Dr. Sean Pittock, at 7:30 tomorrow morning. We are so hopeful that the next chapter in this long yet curiously promising journey will bring new insights, strategies, and healing.

We had a beautiful little moment of encouragement as we pulled into Rochester. Music has become very important to Bob during this healing process. That is apparently not uncommon among people with brain disorders and doctors speculate that it is because music resonates so deeply in the brain. Bob has found plenty of new music that he enjoys, but nothing resonates quite so deeply as Paul Simon’s Graceland CD. In preparation for our trip, Bob spent a long time yesterday transferring some of the new music he’d bought to our phones and laptops. On the flight to Minneapolis, he relaxed listening to that music. But as we approached Rochester in the rental car, Bob confided with a twinkle in his eye that there was one album he had not listened to on the plane, and I knew without asking that it was Graceland. He said that he was saving that for getting to Rochester.

The sound system in our rental car is newer than the one in our car, and Bob realized that he could play the songs from his phone through the car radio if he just had the right cable. So the next thing I knew, he had programmed the GPS to navigate to Best Buy, where he, indeed, found the cable he needed. As soon as he was back in the car, he had the first song on Graceland blaring through the radio. It was also about dinnertime, so as we left Best Buy, I navigated to Chipotle for a couple of quick salads before heading to the hotel. It was only two tenths of a mile between the two stores, so we were just starting to rock out when we pulled into our parking space at Chipotle. As I turned off the engine and we got out of the car, I did a double take, because amazingly the very same song was playing in the outdoor dining area of the restaurant! That song, The Boy in the Bubble, includes a line that says “These are the days of miracle and wonder, and don’t cry baby, don’t cry, don’t cry.” It felt like a personalized welcome to Bob, saying this is a place of healing for you. And so the adventure begins!

-Megan

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