Coming home

January 14, 2017

It had been two and a half weeks since receiving our son’s diagnosis, and we had stayed in two hospitals, moved in and out of a city apartment and, finally, back home. It was a whirlwind of transitions, but every week was a little easier emotionally.

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Our son and daughter reunited on our first night home from the hospital.

Coming home was nice because we were all under one roof again, but it was also and stressful, and very eerie. When we left, we had been in the throes of Christmas, and returning from those unanticipated weeks away was like we had been in a time warp. My mother had taken down our Christmas decorations for us and there was a cold and empty feeling about a house that hadn’t been lived in. I was disoriented returning to a life I didn’t want. It was dreamlike, and we suddenly had the responsibility of what Calum’s nurses had been doing for us just hours earlier. Mike and I were now in charge of administering all the oral medications, changing the dressing around his temporary port which included very strict instructions on keeping everything 100% sterile. We needed to be hyper-aware of any signs of fever or infection, which would have been our worst enemy since Calum’s immune system was functioning so far below normal. I compare it to taking a newborn home from the hospital for the first time (except with higher stakes). When you’re in the hospital, everyone is helping you. You rest, and a nurse hands you the baby when it needs to feed. Then you get home and realize, “Holy buttered biscuits, this baby has been pooping and peeing for three days?! Am I now expected to change these diapers?!” On top of that, we were also caring for Faye, of course, who had all the usual needs of a 14-month-old.

The hospital, after the initial shock wore off, was unexpectedly comforting place to be. There was a revolving door of doctors and nurses to answer questions and help us, and there was a lot of action for Calum. It was basically all the types of pediatric hospital entertainment you have seen on TV; clowns, musicians, therapists, candy carts, toy deliveries, everything. We were distracted and we were in the middle of New York so we ate lots of good takeout and, quite quickly, Calum started to look and feel better. The memories of living at the hospital are actually not dark, and we had been filled with so much hope for Calum’s outlook, we almost forgot where we were. It was a little like dorm life, which I’d always loved, but I was drinking much better wine (after the first week…I almost couldn’t eat or drink anything for the first week). There were, however, some doses of horrific realities. One night as I strolled to the pantry for water, I stopped in my tracks noticing about 15 members of a family gathered outside a hospital room, all crying. I realized abruptly that a child was dying, and my heart began to pound through my chest as my eyes poured out tears. This was not where anyone wanted to be.

After a couple days back home we gained some more confidence, which was only elevated by a phone call with some blessed news. I mentioned earlier that we were waiting on results of genetic testing that could potentially change Calum’s risk category; he was originally diagnosed “standard risk”, but some genetic factors can affect a patient’s response to treatment making them either “high risk” or, alternatively, “low risk”. The doctor called to confirm that Calum was officially a low risk patient! This would not change his treatment path, but it did change his prognosis, giving him even better odds of a full recovery. We were beyond grateful to be facing the greatest odds we could ask for, given the situation. It seemed we were dealing with the best, worst-case scenario, for which I continue to be eternally grateful.

Caring for Calum from home entailed two hospital visits a week – Tuesdays would be check-ups and Thursdays would be check-ups and chemo. People were always asking how he was doing after getting chemo, and it was hard to say for sure. He seemed most tired and affected the afternoon of treatment and the next morning, but he wasn’t ever bedridden. He just rested more and watched a little extra TV.  I felt like the luckiest parent in the world to have such an amazing boy.

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