Grace’s epileptologist, Dr. Doescher is moving on to new opportunities where he will no longer be providing patient care. While we are happy for him he will be greatly missed. He has played a crucial role in not only Grace’s life but also ours. We have both written a blog post to help ourselves process through this change so here is our first He Said, She Said entry.
Last Wednesday we promised to send a Christmas card to Grace’s beloved Dr. Doescher. Dr. Doescher has been a prominent member of Team Grace a few months short of thirteen years. And by prominent I mean this is the man we picked to be in charge of Grace’s epilepsy. This is the man who was more than Grace’s doctor – often he was the man who put a struggling Kevin and I back on our feet by assuring us that we were doing right by Grace. We believed him and we walked out of that room and kept going with renewed energy. Often in the silence that comes after Grace’s appointments as I process all we’ve heard and Kevin waits for me to process (because he would like to talk about it right away) one of the first things we would jointly reflect on is what we refer to as the “Dr. Doescher Pep Talk.”
Last Wednesday as we met with him he gave us five things to think about – rules to live by with Grace’s epilepsy. The first one was to keep tuning Grace’s brain waves, we will always have to be vigilant. The last one was to trust our instincts. The pep talk also included a reminder that we should celebrate everything…behaviors, side-eye, eye contact, smiling.
We told him that lately, Grace has been using her talker to request taking a selfie. We told him that when we got back from Canada she picked out the Canadian flag on her talker in conversation with her teacher. He grinned as he listened and he told us how much those stories brought him joy.
We sometimes lose perspective that little things like that in actuality are a really big deal.
He referred to Grace as a ship and told us to continue to take her out and let her sail. He believes she is capable still of learning and growing even more. (I’m not sure when the ship metaphors started, I don’t remember them from when she was really little, but they always bring a great visual.)
We’ve been so lucky to have the same person leading the way for so long. There are very few people on this journey that have had the same kind of staying power in Grace’s life (and ours). What I wanted to tell him that day (but couldn’t because I was crying) is this. We can’t tell Grace’s story without him – we’d be doing it a disservice. He is in chapter after chapter. I wanted to tell him thank you for his unwavering belief in a girl with a rough kind of epilepsy, for his passion for quality of life, and for helping us understand that Grace will tell us if we listen. And just to lighten it up a little bit, because I’m crying now, I wish I’d complimented him on his sock game. I’m pretty sure I never did, but I should have.
He’s going on to something new and brave. I’m excited for him but know we will miss his presence. While we were with him he joked that we probably had his voice in our heads…and we do. I also have all the lessons tucked away in my head and heart. All the dreams he has voiced for Grace. All the conviction that it’s not a life without seizures that’s the goal when your brain looks and acts like Grace’s. It’s about getting out there and living with the least impact from seizures. It’s powerful stuff he’s passed on as he cared for her.
You can be assured I will definitely honor his request and send him a Christmas card.
When we learned about a month ago that Grace’s Epileptologist Dr. Doescher was leaving it was a hit in the midst of a tough month when things just didn’t seem to be going right. I’ve been pondering a number of things while trying to process changes, expectations, and fear of the unknown future. The following is a culmination of my thoughts somehow tied together.
The end of an era occurred last week, Grace’s Epileptologist is moving on to new opportunities. He has been with us for thirteen years which is a long time but also not long enough.
When Grace was diagnosed, we were at Blank Children’s Hospital seeing a local neurologist who brought a textbook with him on a super rare form of epilepsy when he came to talk to us, he said we would be lucky if she lived for ten years. He wanted us to go to see a specialist at Minnesota Epilepsy Group, the next day we were to be discharged after seeing the neurologist and travel to Children’s Hospital of Minnesota. We were left in the hands of the residents who struggled to figure out how to discharge Grace for the next six hours. When the neurologist came back to the floor at 6pm that night and we were still there needless to say he was not pleased. We were discharged and traveled on from one hospital to another four hours away. A little after 10pm on a Friday night we arrived and met with Dr. Ritter who was the doctor that the local neurologist wanted us to see. He reviewed the EEG, MRI, and documentation and told us that evening that he didn’t think it was the super rare form with life-threatening complications but just a rare form of epilepsy known as infantile spasms; suddenly our four-month-old no longer had an expiration date. Not only was Dr. Ritter there for us at midnight or later but he asked if we had a place to stay, we didn’t, and he made a call to a staff member to get us a room at a neighboring apartment building with a few rooms reserved for families.
The next week we came home with a treatment plan in hand for our local neurologist to follow; we started the plan and unfortunately did not see the results we hoped for. A number of additional medications were added but in four months we exhausted all of the medical options our local neurologist was able to provide. We too were exhausted as there were side effects, difficulties acquiring medications, awhile attempting to maintain our employment and sanity.
In October of 2006, we traveled back to Children’s Hospital of Minnesota – St. Paul for a revaluation and to transfer care. While we planned for a week-long stay which turned to sixteen days, Grace was a mess with a cocktail of medications, and we needed to clean up her treatment plan. We were unable to feed Grace due to the side effects and she had an NG tube through her nose down to her stomach that allowed us to feed her and give her medications. By this time, she had the NG tube for nine weeks at Children’s Hospital of Minnesota the max for an NG tube is six weeks and so Grace received her G-tube a more permanent feeding tube from the abdomen directly into the stomach; which we still use today.
During our stay, we overlapped the rotations of the three pediatric epileptologists (at the time) and at the end of the stay, we were able to choose who we wanted to follow with. We asked nursing staff if they had recommendations and I recall that whoever we talked to said Dr. Ritter is so dedicated he will probably die on the unit (he fortunately retired and we have been told is doing well), Dr. Frost will eventually retire and go fishing or golfing luckily he is still actively practicing and was a champion to ensure that a new neuroscience center was built at Children’s Hospital of Minnesota which includes one of the largest pediatric epilepsy units in the county. And then there was Dr. Doesher, he trained with Drs. Ritter and Frost and went off to practice in Wisconsin and then returned. He was the “young guy” and had the most flexibility in his schedule. There was not a bad apple in the bunch, and we would have been happy with any of them. I recall having a conversation with Dr. Doescher trying to determine how long he would be there; we didn’t want someone that was going to be gone in six months or a year. After all, in the previous 4 to 5 months we already surpassed our local specialist’s expertise, we needed stability and footings in the roller coaster ride we were on. We were in this for the long haul and we wanted someone who would willing to jump down in the hole with us.
I enjoyed the television show the West Wing when it was on, so much so that I’ve been listening to a podcast that goes through the series episode by episode dissecting each show. In season two a character underwent a traumatic event which resulted in post-traumatic stress. Through this character’s recovery, there was a series of events which indicated that he was likely going to be fired. His boss Leo McGarry (played by John Spencer) in an effort of solidarity told him a story…
This guy’s walking down a street when he falls in a hole. The walls are so steep, he can’t get out. A doctor passes by, and the guy shouts up, “Hey you, can you help me out?” The doctor writes a prescription, throws it down in the hole and moves on. Then a priest comes along, and the guy shouts up “Father, I’m down in this hole, can you help me out?” The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by. “Hey Joe, it’s me, can you help me out?” And the friend jumps in the hole. Our guy says, “Are you stupid? Now we’re both down here.” The friend says, “Yeah, but I’ve been down here before, and I know the way out.”
My point of sharing this…we needed someone to jump down in the hole with us, Dr. Doescher did just that.
Relationships with our providers especially Dr. Doesher have helped us make it as far as we have. We often would refer to our appointments as Dr. Doescher pep talks which remind us that we are doing well and to keep on keeping on. A little reminder goes along ways.
Our last appointment with Dr. Doescher could have gone on for hours. We shared stories, tears, laughter, and somehow found time to come up with the next steps in Grace’s treatment plan. An appointment we were not necessarily looking forward to but one that gave us some closure. We wish Dr. Doescher well on his new journey.