119) A light at the end of the tunnel

I don’t even remember the order of things anymore. I had to go and dig through some group messages to remember what happened on what day. Here’s the best assembly of events from my foggy memory & what’s on my phone.

January 10^th was a Friday. We were back at our satellite clinic for bloodwork that day. His hemoglobin counts, and platelets were okay that day, but his neutrophils had dropped. SickKids told us that chemo was still on hold, and that they’d want to see us on the Wednesday of the following week. E was fine at the clinic, but after returning home, he started to develop a bright red rash particularly on his cheeks, but also over his body. Despite this rash, he did not develop a fever with it.

January 15^th, a Wednesday was our scheduled visit to SickKids to meet with E’s oncology team. The rash from 5 days ago had faded, and was no longer presented any visual symptoms. Unlike a lumbar puncture, we didn’t have to be there early early, so we took J to school, and then made our way downtown. Getting out of the car on the P4 level, we just happened to step into a code red, which means fire. All of the building elevators, including the ones to the parking garage were held. Getting impatient, I made the executive decision to take the stairs. My wife & E walked up the stairs under their own power, and I folded the stroller & lugged it up to the main level. By this time, the atrium elevators were again working, and we were whisked up to the 8^th floor. We signed in & then went to the phlebotomy room with E, where, instead of being accessed through his port, had blood drawn through a vein. We didn’t have too much time to chase E around the waiting room before we were called to see the oncologist. By this time, the initial blood results were back. Hemoglobin & platelets were about the same, and his neutrophils were slightly down. Our oncologist re-iterated that she didn’t think that E had relapsed, but she did want us at our satellite clinic on January 21^st for bloodwork. If, by that time, E’s counts hadn’t fully recovered, we’d be back at SickKids the following day (January 22^nd) so E could get a BMA done alongside a lumbar puncture.

On Tuesday January 21^st, we went to our satellite clinic. Before anything was started, we were told that one of the viral tests of E’s blood from SickKids had come back, and he had tested positive for parvovirus. One of the variants of parvovirus, B19, is commonly known as slapcheek, slapped cheek, and Fifth disease. This parvovirus diagnosis would explain the red cheeks & rash from 10 days ago. Blood was drawn, and E got to rummage through the treasure chest. The oncology clinics have a box of toys, games, books, etc. that the kids can choose from after having blood drawn, received chemo, or some other procedure. It’s nice that they get to choose a little reward each time, for their bravery. Receiving partial results from our nurse practitioner, (hemoglobin & platelets in the normal range) we went home to wait. SickKids called around 4:00pm, with the rest of the results, and the news that E’s counts had made a complete recovery. There was no need to drive downtown for a bone marrow aspirate the next day! The chemo hold was over, and we were to start him on a half-dose of his 6MP, and a quarter-dose of his methotrexate. His lumbar puncture would revert to his regularly scheduled date in February.

Almost immediately, I felt that a 200 pound weight had been lifted off my back. The stress and anxiety from this stretch of E being unwell doesn’t stop on a dime, but it should start to taper off over the next little while. It’s been an awful start to 2020, but hopefully we’re getting the garbage out of the way first, and the rest of the year will be better.