Month: July 2024

John is still at Princess Margaret and we don’t have a firm date for his coming home. He’s looking better though.

Monday he received a blood transfusion to help make him stronger, as his hemoglobin was still low. Based on the scans from the weekend, the doctors decided he did not need a liver stent.

Tuesday he was taken back to Toronto General for an endoscopy (investigating the inflammation in his upper GI tract from what I understand) then returned to Princess Margaret (through those fascinating tunnels of course). They also did a test for C. difficile which came back negative (good news).

He is still getting IV antibiotics for the pneumonia and they’re continuing to monitor his low hemoglobin and high bilirubin. His fever seems to have settled down (more good news).

It would be really nice if he could come home before our daughter’s 9th birthday on Saturday, but the doctors seem reluctant to make any promises.

Thank you for continuing to pray for John and our family, and for all the love and support!

Friday

They could not get me a bed at Princess Margaret on Friday, so they took me to Toronto General Hospital through the secret tunnels connecting the hospitals below street level. They were pretty cool. Then I was dumped into their overcrowded ER department to wait for a bed.

Leanne and Harry arrived shortly after I did. I didn’t bring any overnight supplies, most importantly my glasses (I am blind without them) so Leanne went all the way home to get them and a few other things. She spent around 12 hours of her day travelling between Cambridge and Toronto. On the second trip she brought Harry along, because what kid doesn’t like riding trains and exploring tunnels?

Saturday

I spent almost 24 hours in the hallways of Toronto General. I had a chest x-ray, another CT scan and of course countless blood draws. Eventually a bed opened up back at Princess Margaret on Saturday afternoon, so I got to ride through the tunnels again.

It sounds like they have decided I do not need a liver stent, however the chest scan showed that apparently I have pneumonia. I am continuing to receive antibiotics which should help treat the infection in my lungs.

I wouldn’t mind having a quieter roommate, however once you’ve spent the night sleeping in the hallway of an emergency department, you would be surprised what you can tolerate.

Thanks for continuing to pray for me during this ordeal. I don’t know yet when I will get to come home, but it could be Tuesday at earliest.

Tuesday/Wednesday

I did have a CT scan Tuesday which did not show any internal bleeding. The rest of the night went ok. I had another fever though.

Since the doctors ruled out any serious issues they decided they couldn’t keep me any longer and sent me home. But of course they wanted me back Friday and Monday.

Thursday

I finally had some time to get some work done without constant interruptions. I had two fevers which I treated with Tylenol as instructed.

Friday

I arrived at the blood lab at 10:40am. Then I went upstairs at 11:30am for my check-in with the nurse.

They did not like my bloodwork.

My liver enzyme levels keep increasing so they think there could be a blockage in one of my liver ducts.

So I don’t get to go home.

Sounds like I will be stuck here until Tuesday or longer.

I feel fine but apparently I am pretty busted up inside.

To fix the possible duct blockage they will first just try antibiotics. If that doesn’t work they will try to put in a stent.

Please pray for me and my family. So far this trial has been one surprise after another.

Day 1 of my new drug trial: Leanne and I left home Monday morning at 5:10, caught the express train at 6:05, and arrived at Princess Margaret by 7:30 for blood and urine samples. Then we waited around for my 10:00 appointment.

I checked in at the appointed time and got my room right away. The nurse took some vitals but my heart rate was too high. They gave me IV fluids to help lower my heart rate which delayed treatment several hours.

All day it was nothing but answering the same questions asked by nurses, doctors, and various other support people. Eventually they decided to give me the treatment at 3:32pm. I felt no effect from the drugs. I then was subjected to countless more blood draws and ECGs.

They eventually let me go to sleep but kept waking me up every hour for vitals which showed I had a slight fever. I still felt fine.

I made it through Monday night and was awakened by the head of oncology doing my vitals. I did pass but the nurse still repeated them a few minutes later. The oncology trial head was the first to let me know that now my hemoglobin was too low. It was as if I had lost 3 bags of blood and no one knows where it went.

A few hours later, my day nurse arrived and confirmed that I had an ultrasound appointment for 10:30am. No big deal but they wouldn’t let me eat or drink prior. They wanted to look for any parts in my liver and tumours that may be connected to something else that could be affecting my liver enzyme count.

I passed the ultrasound. My liver is ok (except, you know, the cancer). I eventually got food, including ice cream for dessert.

The entire hemoglobin team has been discussing my case and they have even reached out to the drug manufacturer to see if anyone else has had the same symptoms. The latest doctor mentioned possibly doing a CT scan.

I was supposed to go home today (Tuesday) but it sounds like I am stuck here until they solve the mystery of the missing blood.

Thank you for praying! My weekend of IV fluids seems to have fixed my pancreas enzyme levels. I went from levels that were 10X normal on Thursday to normal by Monday morning. It sounds like I will be getting into the trial with a possible start date of next week, however, I am still waiting for an official confirmation.

I am still struggling with appetite but I don’t seem to be losing any more weight. I think it’s been almost 2 weeks now where I have been holding steady in the mid 130’s.

Please keep praying.

Leanne and I eventually made it to Princess Margaret yesterday…on separate trains. (We will have to monitor the frequency of 1pm Blue Jays games in the future as they tend to fill up both parking lots at Aldershot GO station.) The study nurse went through the consent form, asked me a ton of health questions, and proceeded to have her colleagues administer a few more tests. We then raced across the street to Toronto General Hospital for my CT scan.

About an hour later, I received a phone call from the study oncologist while on the train headed home (with my wife this time). She said that my pancreas enzyme levels were very, very high and would likely prevent me from participating in the study. She and my oncologist in Kitchener have no idea why the levels are so high, especially when I am not having the typical related symptoms. To try and reduce the levels of these enzymes, I am having 3 days of IV fluids at home. They used my port which means my arms are free which is really great. I will get a blood test on Monday locally and find out the results on Tuesday. If the levels do not show improvement I will not be part of the study.

Again, please pray for God’s will regarding this study. On the one hand, considering how new and small it is, the side effect risks could be high and unknown. On the other hand, maybe it does have high potential to do some good. God knows what is best for me!

Regardless of the trial, please pray that my pancreas enzyme levels go down. I’ve been told to go to the ER if I start having abdominal pain and vomiting. I haven’t had time to look it up yet but I don’t think there is anything good about pancreatitis.

 

Here is a nice little song from Weird Al in case you want to learn more about pancreases.

 

This morning, Leanne and I are off to Toronto again to have some tests done and paperwork signed for a new Phase 1 trial in which I may be eligible to participate.

This was a bit unexpected. At my last meeting with my oncologist in June, he told me he wants to take me off my current treatment and try something else. He mentioned contacting Princess Margaret Cancer Centre again as one of a few options he would pursue for me. A few days later I was meeting with the trial doctors at Princess Margaret discussing this trial.

The trial involves an immunotherapy drug given via IV once every 3 weeks. That will be a welcome change from my last Phase 1 trial at Princess Margaret and all my other treatments which have been once every 2 weeks. The big catch with this trial is the risk of deadly diarrhea; one person in the trial died from complications related to diarrhea. Apparently some people on the trial have no diarrhea at all, so I am going to be hopeful that I am one of those very blessed individuals. The “deadly diarrhea” did have me pause a bit before jumping ahead but I am getting very close to exhausting my treatment options. And I know I’ll be in good hands at Princess Margaret even if unwelcome side effects occur.

I keep mentioning my lack of appetite. Sadly, that issue is getting worse. I keep having setback after setback. I weigh around 135 lbs now. For context I am 6’1″. I keep thinking I am making progress but after what I think has been a good consistent run of eating, the scale disappoints me. I am really hoping once my last round of chemotherapy has finally left my system I will regain some of my appetite. 

Please pray for us as Leanne and I travel back and forth to Toronto. We take the train so it is at least quite a relaxing journey. Pray for God’s will regarding the trial at Princess Margaret, and that my acceptance in this trial will not be contingent on my weight. As Leanne and I continue struggling to find foods I will eat, pray that I will be able to gain some weight.

 

P.S. Thanks for continuing to pray for us and taking the time to send us encouraging notes now and then. Occasionally Leanne and I hear from people who are having trouble contacting us when replying to the blog email, so here are our direct email addresses:

 

• • theclarks@jtclark.ca (This goes to both of us)
  • john@jtclark.ca
  • leanne@jtclark.ca