Alexander’s most recent cardiology clinic gave us a scare. The truth is, given the complexity of Alex’s condition, we have been blessed with great clinic results, and we’ve become accustomed to the type of clinic visit that feel more like keeping in touch with the cardiology team than anything else. We get there early, run around for his various tests, meet with his clinic nurse, and then have a short discussion with his cardiologist. It usually ends with a “thumbs up” from Dr. D, and those ever encouraging words “see you in a year”.
This time was a little different. During the meeting with his cardiologist she revealed that the Echocardiogram indicated a loss of heart function since his last clinic. Nothing to panic about yet, it appeared to be a small reduction, but we would need an MRI to quantify it, and depending on what the MRI showed us, we would have to discuss our treatment options in a few months.
One of the strange things about all of this is that when Michelle and I found out about the reduction in heart function we were scared, but neither of us was shocked. Not because he’s had symptoms, he hasn’t. Alex continues to thrive and has shown no side-effects at all. I think the reason we both felt disappointment (but not surprise) is that an eventual loss of heart function was part of Alex’s initial long term prognosis; this isn’t a deviation from the plan. We’ve always known that his condition is progressive, but it was still very hard to hear that we may now be facing the next stage of his journey.
It was a long couple of months waiting for the MRI. When the day came, Alexander was ready, and he did great once again. A couple tense weeks went by, and then the phone call came from Sick Kids. It was Alex’s cardiologist calling to let us know to what level his heart function had degraded.
“The MRI results show slightly reduced function when compared to a normal heart, but the numbers are almost identical to his MRI from three years ago. There is no indication of any degradation. The echo must have looked worse than it was; this is why we do the MRI’s!” I asked her to repeat herself at least twice. “No degradation, no indication we’re at the start of a downward progression. We’ll schedule another MRI for 6-9 months out just to be sure, but it’s good news as far as I’m concerned.” Wow.
Of course, we were extremely relieved. After a few days sorting out our thoughts, Michelle and I sat down to discuss the summer; plans had been on hold pending the test results. Usually we try to book a few days away somewhere close, like Niagara Falls or Huntsville. Far enough that it feels like a mini-vacation, but close enough that if we needed medical care for Alexander for some reason, we could get there quickly. Last summer, we actually made it all the way to Grande Prairie Alberta to see the kids’ Aunt and Uncle. Feeling adventurous based on our recent good news, we began to discuss a few locations we had previously only discussed hypothetically in that “maybe someday” kind of way. “How about the east cost? I’ve always wanted to see PEI. What about London, Paris, or Edinburgh?” we half joked. “What about Hawaii?”
The fact that we didn’t immediately laugh it off was a big step for us. Michelle and I used to love to travel, and it’s been a long time since we’ve gone somewhere far. We took Sydney to Scotland when she was only two, and it was amazing. We saw some incredible sights, and met a wonderful friend on a day tour who was also on vacation, and whom we’ve kept in touch with ever since. We actually hadn’t been on a “beach” vacation since our honeymoon. We love our family trips to Florida, we’re so grateful to have the opportunity to go, and we have an amazing time – but it feels different than flying somewhere far away, and over the ocean. We began to do some research, in particular relating to the quality of health care available should we need it. The discussion about travel has come up a few times with Alexander’s team at Sick Kids. They’ve always been very encouraging, but the message has been quite clear. “It’s highly unlikely anything will go wrong, but if it does, you want access to 1st world healthcare.” It’s for this reason that we’ve put off the idea of a family trip to the Caribbean, somewhere Michelle and I have enjoyed in the past. Our research was encouraging. While much of Hawaii is quite remote, Honolulu is a large modern city, and it even has a children’s hospital with a cardiac centre! We decided that if we were going, we’d restrict our destinations to the island of Oahu. Within a few weeks the trip was booked, and after a long flight we spent nearly two amazing weeks on Waikiki Beach, and on the North Shore of Oahu. No health scares, just pure enjoyment and relaxation. The kids ran along the beach, snorkeled, took a submarine ride, went to two Luaus, and came home with fantastic tans. Alexander even volunteered to participate in a Hawaiian “dance-off” on stage, because “I may never get another chance.” We saw the Waimea Valley, lounged by the pool, ate amazing local seafood, and even managed to reconnect with the friend we last saw on a tour bus leaving Inverness in Scotland almost ten years ago (did I mention she was from Honolulu?). It was an unforgettable trip.
This is a happy story, but there’s also a lesson here. Something occurred to me while I was watching the kids play on the beach. It’s the kind of realization made possible by the absence of distraction, the presence of peace of mind, and perhaps a Mai Tai or two. I realized that this was not a situation where Alex was sick, and became well enough to travel. The MRI results had not shown an improvement, they’d shown that he was the same. Nothing about his health had changed; only our perspective. So why then, were we brave enough to take this trip after hearing the results, but not before? It’s an interesting question, and one that I’m still struggling to answer. I think that deep down, there is the unspoken realization that one day the call will come from Sick Kids, and it won’t be the same call we received back in June. It will be to let us know there is a reduction in heart function, and we need to discuss our options. There is still some urgency to make sure we don’t take our time for granted. It would be so easy to look at the period of time after our last clinic and be angry that we worried needlessly about the possibility of bad news, but the truth is I find myself very grateful for the reminder. If it had just been another typical clinic for Alex, I know we wouldn’t have gone on our trip, even though Alex’s health would have been exactly the same.
This is not just a lesson for heart parents, it’s for everyone. I realize that for a multitude of reasons, it’s simply impossible for everyone to just up and leave for Hawaii, but I also know that everyone has been putting something off as well. Maybe it’s that road trip to Florida, maybe it’s a camping trip, or a fishing weekend, or a staycation in Toronto. Maybe it’s a baseball game, a day at the aquarium, or a board game you’ve been meaning to play as a family but just haven’t got around to it yet. Maybe it’s half an hour shooting hoops with your kid on the driveway. My advice? Go do it. Today, if possible. They tell us at Sick Kids that the reason they do what they do is to provide every kid with the opportunity to live a life that is as happy and “normal” as possible, for as much time as they can give us. Many of you won’t have had the same experiences as us, but the reality is that a long and happy life is all any of us really want for our kids; heart-healthy or not.
Seize the moment, for loved ones may never be in better health than they are today. Go enjoy life. If not now, when?
