It’s a cold and rainy welcome back to reality for the McYongs. After four long nights (but who is counting?) of jet lag for the Princess, she is back to her usual routine of sleep. Unfortunately, the little cough she picked up in Hong Kong blossomed into a full cold once we got home. She seems to be oh-so-slowly getting better and our pediatrician wasn’t too concerned when he listened to her lungs on Friday. We are still a little bit on the paranoid side after October’s bout of pneumocystis pneumonia, but Addison is on a prophylaxis dose of antibiotics to prevent recurrence.
Addison’s first blood tests in seven weeks presented us with a couple of surprises. Her Tacrolimus levels have gone from 1.6 to 6.1, so her meds are being reduced after we bumped them up a little for the trip. Her kidney numbers show a little improvement. Her neutrophils and WBC are still down, but could be attributed to her cold. And her hemoglobin has skyrocketed again, which means we are reducing those rusty-nail iron supplements. Now we are prepping for the next big thing – another biopsy on February 19.
The glow from our trip to Australia hasn’t faded completely. There were many fantastic things we got to see and experience, but when it comes to our “special circumstances”, two things really stand out. Vacationing in a summer destination in the middle of our nasty cold and flu winter season was a lovely break from my ramped-up germophobia. It was wonderful not to hear any hacking and snotting coming from random strangers in grocery stores, at the coffee shop, waiting in line-ups, on the crowded sidewalks. And the other high point was the absence of medical crap. No blood tests, no emails or phone calls to or from Addison’s transplant nurses and doctors, no visits with any medical professionals (well except for the nurse at the resort who checked out the ugly centipede bites), no letters from various health agencies involved in Addison’s care, no trips to the hospital. WOW. I actually didn’t even think about any of that for several weeks. It’s the simple things in life that are the best.
I know most of our family and friends – at least those of you who are regular readers of our blog – wholeheartedly support our choices to make Addison’s life as normal as possible, but I know a few skeptics out there question our need to show Addison the world and give her a taste of one of our passions – travel. We are the first to admit there are risks when we take our immune-compromised child on the road. We have to consider things most people don’t even think about…What is the medical system like there? Where is the closest hospital? Where in the country do they do transplants? Can we get insurance? And there are several places on my bucket list we probably won’t ever be able to take our daughter, including a trek around Nepal or another visit to Antarctica. Let me be clear – we would never go against the recommendation of her primary care doctors. We want our Princess to have a long and healthy life, but we also want her to LIVE. There is something so transformative about immersing yourself in a completely new environment and culture. By travel, we make the world smaller and bigger at the same time. Headlines in the news which were once quickly forgotten become familiar places with personal memories. We have the time and space to enjoy the little moments, to relish the big adventures and to savour every sight, sound, taste and smell. And now we get to do it all with Addison. These are the things we will long cherish regardless of what the future holds.
“…travel, at heart, is just a quick way to keeping our minds mobile and awake…if travel is like love, it is, in the end, mostly because it’s a heightened state of awareness, in which we are mindful, receptive, undimmed by familiarity and ready to be transformed. That is why the best trips, like the best love affairs, never really end.”
And that is why we will keep traveling.
Elaine, Aaron and Addison