Guest Blog with Mike Fitzgerald
When our 2-year-old son Jackson was diagnosed with cancer, it was the worst news we had ever received.
As new cancer parents, there are so many unknowns… and the last thing you want is another family in the only space you’ve got – your hospital room – sharing all your personal, intimate actions and emotions.
Most nights we were fortunate not to have to share a room, but when we did it definitely added to our stress and anxieties.
Jackson was terrified when my wife or I weren’t with him, so we were basically confined to his room for the 48-hour shifts we traded off at Children’s. It took three weeks before he was OK being left for a few minutes so I could go use the microwave or get a cup of coffee. I would have done anything for a 5-minute shower in the morning!
When we did have to share a room it was often with a patient of a totally different age than our son. We felt bad when it was a teenager and we were disruptive to them. Every time the door to our room would open, Jackson thought something bad was going to happen and he’d get upset and cry.
And that door opens all the time.
If you think about it, in a 24-hour period your hospital room door probably opens at least twice an hour with someone visiting or coming in to check vitals, deliver food or medication, take blood, etc. So that door opens and closes at least 48 times a day.
Now double that if you’re sharing a room with someone – 96 times a day!
The doors are heavy and loud, and at night the hospital doesn’t sleep so there’s constant noise and chatter when you’re trying to rest. Children can generally go back to sleep but for adults it’s not always that easy.
Everyone who has to “live” at Children’s is uprooted from their homes. It’s inconvenient, scary and yet necessary to be there. We knew we weren’t in a hotel, and we never begrudged Children’s when we did have to share a room. But having your own space is so important to the health and well-being of both patients and their families!
Until you’ve lived through what we did – been up for 7 or 8 days straight, exhausted, worried, living in your same clothes in this “war room” – you probably can’t understand why something like having to share a room would be such a big deal. But it is.
Fortunately, we’re an outpatient family now, so we only come in for weekly clinic visits. But when I look at the progress of the new building each week, I think how great the single room design of the new cancer unit is going to be for families that go through what we did.