One day at a time

My blog title today is in reference to the biggest cliché of living with cancer.  I have now heard upwards of a hundred times, “You just have to take it one day at a time.”  Of course, just because it’s completely clichéd doesn’t mean it’s not true.  And trust me, it is true.  There is no way to know what things will be like from one day to the next, making it pointless to project to tomorrow or next week.  We have to live entirely in the moment, enjoying each good day as much as we can and struggling through the bad days, hour by hour.

Our trip home ended up being decidedly short-lived.  We made it four days before heading back to the hospital last Friday evening. Our time at home was sweet.  We enjoyed our lush little garden, slept in a proper bed, ate beautiful meals brought over by friends, played our old games and took a few short walks around the neighbourhood.

Friday evening I took Gavin’s temperature as I do every couple of hours.  I had been warned by our doctors and nurses that the moment Gavin showed a fever of 37.8 we were not to hesitate but to come in.  He felt hot to the touch but I kept getting conflicting reads from our thermometer, and so Craig and I hesitated a little while before finally deciding to leave.  Once we’d made the decision I quickly packed a few things and we headed out.

Once at the hospital we were told to go to emerg where they would fast-track our registration and decide whether or not to admit us.  In emerg everything quickly fell apart, with Gavin eventually spiking a fever of 39.7 degrees and going into febrile seizures.  I’m still too near to the situation to write about it without feeling a sense of mounting panic.

We barely slept at all in emerg, and the night is a long blur of anxiety and long talks with various doctors and nurses.  The only positive of the night was our trip to CT at 2:00 in the morning, although it didn’t feel like it at the time.  CT took a lot longer than usual and I waited outside the door in the chilly deserted hall for forty long minutes, saying my ritual prayers, trying to meditate and send Beanie healing thoughts.  Finally, Craig and Bean came out and we returned to the emergency department to await our transfer back up to 8A.  Although none of this was fun, we did learn that the blood clot in Gavin’s brain has grown much smaller, so that was wonderful news!  Neurosurgery also did not express concerns about the functioning of his shunt, another relief.

At some point in the night the emerg doctors administered ibuprofen, and Gavin’s temperature plummeted straight back to a normal place.  We were sent upstairs at 6:00 in the morning and checked into isolation.  Because we have no idea what is causing the fever, Gavin must stay in his room, and every medical visitor must gown up and don masks before entering.  Luckily Craig and I can come and go as we please, but it’s still hard as Beanie doesn’t understand why we can’t take him out for a walk and gets upset when we have to say no.

We’ve now been back on the inside for two full days, and for most of it the fever has raged on.  We had hoped to control the fever with ibuprofen, but discovered that this drug disrupts platelet function (who knew?) and for this reason is never administered on the cancer ward.  (As I was told by a very stern oncologist, clearly irritated with the ER docs.) Despite his very high temperatures, Gavin has still been alert and relatively happy, still talking away, playing with toys and being most demanding.  His blood counts have still shown little improvement, he essentially doesn’t have any white blood cells, which is what has made him so open to infection.  He received two transfusions yesterday and has been consistently on major antibiotics administered via IV.

Craig opted to stay at the hospital last night and I made the two block walk to Auntie Loz’s house to attempt to sleep.  To my surprise, I slept a solid eight hours and returned to the hospital bearing coffees in the morning.  Unfortunately, Craig’s night was not so peaceful.  Gavin’s fever spiked again at midnight, this time peaking at 39.8, and Craig spent two long hours packing ice bags around the sleeping Beanie in an attempt to bring the fever down.  His hard work paid off when the temp finally returned to a normal place at 2:00 am.

Today we tried to keep Gavin happy and entertained.  I scrubbed down a load of toys from the playroom and we set up camp on a blanket on the floor and had fun.  From about noon onwards he has been afebrile, and still is, I hope! Fingers crossed, knock on wood, and all that jazz. My darling husband very selflessly offered to stay the night again and I am too weak to say no.  I had been so hopeful about our visit home and felt such crushing disappointment returning so soon and plummeting back to that dark and anxious place.

My motto for tomorrow: Keep calm and carry on.