138) 27

27. Twenty seven. XXVII. That’s how many days E has left in his treatment. I’m excited, worried, happy, angry, and nervous all at the same time.

I’ll circle back around to that another time.

I haven’t posted an update in a while, and E seems to be doing well. He had bloodwork on July 8^th, and it showed his counts were up, so there was a little adjustment in his medication. If I remember correctly, his methotrexate was bumped from 10mg per week to 12.5mg per week. Methotrexate comes in little pills. We dissolve them in water & squirt the methotrexate-yellow water into E’s mouth with a syringe.

On Wednesday July 29^th, E had his last lumbar puncture. Thanks to COVID-19, it was also the first ever lumbar puncture he received when I was not there with him. Usually my wife and I go together, but due to COVID-19 restrictions, there is only one parent/guardian allowed with a child at SickKids. Of course, with the problems we’ve been having with his port, there was no blood return, and my wife & him had to wait for the TPA to dissolve some of the clot before they could take him. According to my wife, he put up a bit of a fight when they began to sedate him. He wasn’t happy, and was calling people “stupid” (unfortunately his new favourite word), and it took a bit longer for him to be out. Also according to my wife, he slept pretty much the full hour after, he woke up in a good mood, and just wanted to munch on some cookies. I had driven them down to SickKids to drop them off and returned home, so I again drove down to pick them up.

 

Last lumbar puncture attire

On Tuesday August 11^th, I once again drove down to SickKids to take E for a COVID-19 test. Not because we suspected he had it, but because he was supposed to get his port out the next day, which is a minor surgery, which meant he needed a clear COVID-19 test before the anesthesiologists would sedate him. It was a pretty quick down-and-back trip.Later that day, the phone rang, and we were told that E’s surgery for the 12^th would have to be bumped to the 13^th, because another patient had a higher need. Completely understandable. E’s procedure is technically an elective one, so if someone else needs the spot more than he does, go ahead and bump us. Thankfully, they said they would honour the results from the COVID-19 test on the 13^th, and we did not have to come back down for another swab.

On Thursday August 13^th, I drove my wife & E downtown to SickKids. I had been debating about staying downtown and finding a park or a café to sit while I waited. We arrived at about 8:30am, and his surgery was scheduled for 12:00 noon. In the end, I decided against staying, not wanting to potentially expose myself to the virus. I drove home & decided to get some hours in on a big project I had been toiling on for work. Literally 10 minutes before E was supposed to go in, my wife was informed that he was again going to be bumped. Not a whole day – just until 4:00pm, because another patient had a higher need. My wife stayed, but if I had have been there, I would have left & asked to be rescheduled for another day. E needed to fast (obviously) before this, and a 4:00pm surgery time would put him at about 20 hours without food. You can’t explain that to a 4 year old, and expect them to understand why you’re not feeding them. My wife told me he just eventually stopped asking her for food. They hooked him up to an IV bag, and started a saline drip, which I believe had a bit of sugar in it to keep his energy levels up. The higher need surgery ended up running a bit long, and they didn’t end up taking E in until almost 5:00pm. His procedure lasted a bit longer than expected because the tube connected to his jugular had some tissue grow around it. I guess normally, they can just make an incision at the site of the port, and pull it out, but they had to make another incision on his neck to get the tube unstuck. That is probably why we’ve been having problems with blood return for the last 8 – 10 months. I had my wife ask, but they wouldn’t let us keep the port. They did however, give him a cool Hot Wheels racetrack for being a good boy about waiting so long. My wife finally got to see him again around 7:00pm. According to her, he had some problems waking up, and when he did wake up, he was C-R-A-N-K-Y. I drove down to pick them up, and made it there by about 9:00pm and we were home by about 9:45pm. All in all, it was an exhausting day all around.

 

E muncing cookies after his port removal

E's port and neck incisions, after about 2 weeks of healing