I realize have taken my liberties over the last several months to discuss topics beyond the progress of our family and, specifically, Calum through his cancer journey. I started this blog as a place to harbor my original updates, but also as a place where I could explore writing in some other capacities, as I have found it greatly therapeutic. While I have intentionally strayed from focusing so much on Calum, it occurs to me that many of you who may not have the opportunity to speak to or see us as regularly, are probably wondering how the heck it’s all been going lately, so this post will return to my original purpose of writing and serve as a true update on the family.
Calum, in the grand scheme of life, is doing wonderfully. He is sweet as ever and, through an outsider’s eyes, looks totally healthy. He runs, plays, and possesses the usual quirkiness of any other four-and-a-half-year-old. From the moment he wakes up in the morning, he slips two plastic swords down the back of his shirt where they remain for the entirety of the day, outside of when he is “training”, at which point he uncoordinatedly removes the swords from his shirt to slice through stuffed animals and couches. He spends, not exaggerating, the entire day talking about swords and the other weapons that are used by the Ninja Turtles. His swords are referred to by their proper name of “Katana swords”, belonging to the man himself, Leonardo; then there are Michelangelo’s nun-chucks, Donatello’s bow staff, and Raphael’s sais. He occasionally breaks his non-stop weapon wind-stream to ask for snacks. It makes me crazy, but I do love to see his imagination working twelve feverish hours of the day to recreate scenes from his beloved show.
Calum’s day-to-day is pretty average and, outside of administering his medications, there are days I almost forget about his Leukemia. I’ll take as many of those as I can get because there are still some more emotional reminders of what he is going through. On a basic level, we visit the hospital once a month for a stronger intravenous chemo called Vincristine and once every three months for a spinal tap. The day of his treatment at the hospital each month, he also begins five days of oral steroids. Steroid week is always a drag and is met with many emotions for Calum (and me). When steroid week ends, we can usually expect about three weeks of “normal”. There are mornings like today, however, when things are tougher. A couple of times a month, Calum will rise out of bed a little earlier than usual and make a bee-line for the bathroom where he will vomit. Oddly, he doesn’t call out for help, and I am usually awakened by the sound of the toilet seat being flung upward. I jump out of bed to rub his back, wipe his face and grab him some water. He will look up and say “I did a throw up again.” It breaks my heart, but then we retreat to bed to rest for a bit and, within about a half-hour, he is recovered. It amazes me that he spends almost no time dwelling on his malaise. It’s not him trying to be tough, it just genuinely does not upset him and, usually, I try to follow that lead. As much as I hate watching him get sick, it is better for us all to keep it matter of fact.
There are other things we still have to worry about with his immune system, too. For instance, right now, he has a cold that has moved through the family (except Mike) and, while Faye and I have been able to recover from it entirely, he is still blowing his nose and coughing a bit. It worries Mike and I when a virus lingers, because we fear it could turn into something more serious that could land him in the hospital and delay chemo. This factor will be an ongoing hurdle next year when he returns to school and we have less control over germ exposure.
Luckily, at this point, there is nothing more serious to report and we are still on track for Calum’s eventual recovery and cure when he finishes treatment in March of 2020. Though he has been in remission almost a year and a half, we will have to wait five years POST treatment for him to officially be considered “cured”. Thinking about the big picture can still feel very heavy and daunting; despite the fact that we anticipate great results. When I feel the weight of the situation, I try to reel myself back into the moment and remember that, for right now, everything is totally manageable.
Faye just closed out week one of potty-training, which has been a literal take on the fecal-tornado we’ve been enduring at home this year. Faye has caught on pretty quickly, however; she has already figured out how to use the potty as a bedtime delay, and she only has accidents when she gets overly excited, which is hereditary on her maternal side.
To reiterate a past post I wrote about Faye, she has been the cornerstone of helping our family thrive during the last year. I’ve been handed a unique lens to look at life through, which has allowed me to appreciate every aspect of the fire inside Faye. She continues to bring humor and determination (for better or worse) to each day. The other day she asked me for some pistachios to snack on, so I went ahead and shelled a few for her. She took one look at the perfectly peeled pistachios which I displayed for her, she whacked them out of my hand and asked for them “in a bowl” and “with the shell on”. I obliged and observed her try to pry a pistachio from its shell and, when her two-year-old dexterity failed her, she began pounding those friggin shells as hard as she could on the floor until she cracked one open. THAT is who I am bringing with me to the hypothetical desert island, folks.
Each afternoon, when he gets the go-ahead, Calum runs to greet Faye when she wakes from nap and, admittedly, so do I because even though the peace and quiet of naptime will end when she rises, the games will begin.
Mike and I
Mike is great. He is coming off a couple solid months of studying for an exam he had to take for work, which he recently passed – phew! He is now able to breathe a little easier and we are really looking forward to enjoying the summer with the kids, especially given Calum’s health which is in such a more stable place than last year at this time. The test had been looming for a while and there was a lot of pressure attached to it so, while it doesn’t rank on the list of the most important things in life, small wins like Mike doing well on the test feel a little like coming back from behind in a big game. It’s awesome.
I am great, too. I am sometimes restless though and frequently find myself wondering how to extract, not only the most out of each day, but also out of life. Knowing how quickly things can change is a blessing and a curse, but it is a reminder of the fact that we need to do what makes us happy now rather than waiting around for it.