This is the fifth post in a short series chronicling our search for treatment for food and environmental allergies and asthma. You can read Part 1, The Fall I Gave Up on Food Allergies here Part 2, Looking for Treatments here, Part 3, Getting the Boys on Board here, and Part 4, Making a Decision here.
In the months since we’d decided to place Zachary in Dr. Li’s capable hands, I had spent many hours continuing to read about her work and to prepare for our own face-to-face meeting with her.
As we made the trip to New York, I found myself wondering about what we were about to undertake.
Would this be worth it?
Were we crazy?
Would she even take Zachary on as a patient?
If she did, would *anyone* understand this journey we willingly chose?
As I wondered, I reminded myself of all of the reading I had done to understand this treatment myself and the multiple conversations our family had to make this decision. I remembered our allergist’s response – and my teary relief in hearing it – to my mention of Dr. Li and her work (“Oh YES. I heard her speak at a convention, I think she’s really on to something good. If you can see her, I’ll do whatever you need to be a team player, I think it could benefit Zach greatly.”) Mentally reviewing it all, I knew we had made the best decision for Zachary and our family.
The day before our initial appointment with Dr. Li, we spent some touristy time in Manhattan and we took a short walk from our hotel to her office so that we knew exactly where to go and how long it would take us to get there the following day. There was no way I would chance keeping her waiting!
I was excited and anxious (another parent of a Dr. Li patient coined the appropriate term “nervcited”). I felt like I was preparing to meet a real-life rock star.
When we finally got to our appointment, I was a ball of nerves. On the verge of happy tears, hopeful tears, a little shaky, all while hoping desperately that I would remember to consult each and every note I had written so none of my questions would go unanswered. As with any doctor who cares about her patients deeply, she was running late, so we spent some time in reflection of the road that had led us to that quiet office in the middle of Midtown.
And then she knocked on the door, entering with a big smile – this tiny woman whose humble presence filled the room. We got to spend nearly an hour and a half with her; the whole time, my palms were sweatier than they had ever been.
I’ll never forget, as we were poring over Zachary’s recent blood draw results and comparing them to previous draws. We were both so intent on the papers laid out in front of us; she wanting to be sure she missed not even the slightest detail. In it all, she saw a trend that I had seen and been pretty disappointed about privately. As she was making the connection, she laid her hand on my forearm and said, “That must have been hard for you to see.”
I was all in.
For someone in her position – at the forefront of revolutionizing the allergic world – to take one moment to acknowledge the emotional weight of a silly blood test result for a mom like me, that was all I needed to know. She paid attention and cared. More than a researcher, more than a doctor, she cared as a fellow human.
To make that connection outside of all of the reading I had done on her scientific findings, to see that rare doctor/patient connection was huge to me. Not only that, there was a sense that as we were combing through numbers and as she did a physical exam of Zachary, that she was connecting not only the science of her research to his allergic status but also her instincts were guiding her in the art of his treatment.
We walked away from that appointment with a three-year treatment plan. We check in with her via phone consultations at her discretion, at first it was once per month and we “graduated” fairly quickly to bi-monthly phone calls.
Her goal for Zachary to start with is to reduce his internal inflammation, so that is our goal as well. He follows a strict regimen each day, but nearly six months in he doesn’t complain because he has his end goal in mind. He doesn’t want to miss out anymore, so he is banking on Dr. Li’s directive of working hard to follow what she tells him to do in order to resolve his allergies and asthma.
As we left the office, Adam said to me, “You looked like you were talking to Bono the entire appointment.”
I suppose I did. Bono, The Queen, and The Pope all rolled into one person.