Category: Updates

I’m sure many readers of our blog have already heard the news of John’s peaceful passing home going. You can read his obituary and funeral details here. The funeral will also be livestreamed on our church website www.benton.church.

Tuesday night, we had a PSW come to stay overnight and look after John so that I could get some rest. She woke me up in the wee hours of Wednesday morning to tell me that he had stopped breathing. I am so thankful that I had such a kind, compassionate individual here to make his death as peaceful a process as possible. He wasn’t in any pain. And from now on, he no longer will be.

Thank you for praying for us and supporting us over the almost 6 year long journey this has been. Calling it a battle does not seem an exaggeration. Near the end, he said to me, “When all of this is over and I’m gone, just take some time to rest.” So on that note, I’ll end with the words of another song that I love, by Keith & Kristyn Getty, Jordan Kauflin and Matt Merker:

“Are you weary, heavy laden? Come and lay your burdens down. Jesus calls you. Jesus draws you. Rest in Him.”

It’s been two weeks since our last post here and a lot has happened.

Last Friday John started taking the chemo pill, but unfortunately it led to some intolerable side effects. As you know if you’ve been following this blog for awhile, he’s used to spending a lot of time on the toilet while on chemo, but this time was much more difficult as he needed help to get up and go to the bathroom several times per day. It was exhausting him so much and putting him at risk for dehydration, so after discussing it with the palliative care and oncology teams, he stopped taking the pill after only 4 days. It was basically a last resort, but the oncologist said that if it’s detracting from his quality of life, John should stop taking it.

The water pills do seem to be helping as his abdomen is no longer as distended. He finally got an appointment to get a permanent drain put in this week, but the nurse practitioner ended up canceling it. At this point he can hardly get out of bed, let alone out of the house to go to an appointment.

We have a hospital bed in our bedroom now and the nurses are going to start coming to check on him everyday instead of every other day. He might be starting to get a pressure sore on his tailbone so they want to keep a close eye on that.

The main problem facing us now is that John’s liver seems to be reaching its capacity. He’s jaundiced and more sleepy than usual. The nurse practitioner who visits us knows that John is the type of person who likes to plan ahead and have as much information as possible, so she was very frank with us. Her best guess is that he might only have days left to live. “Maybe many days,” she said, but likely not weeks, and certainly not months. We may not know exactly how long he has left, but God knows.

Hymns always comfort me. One that John and I both love is:

“What a Friend we have in Jesus, all our sins and griefs to bear! / What a privilege to carry everything to God in prayer!”

As some of you have reminded me, it’s never too late to ask God for a miracle. Thank you for reminding us that you care and are praying! Please pray that John wouldn’t have too much pain. Pray for strength for me as I look after him and the kids. Pray for Harry, Daisy, Maggie and Poppy, that they would be able to enjoy some meaningful, memorable times with their Dad in these uncertain days.

We finally have updates on a few things. Since we last talked about drainage we’ll start there. I still have yet to be drained. It sounds like we’re going to talk to a specialist about getting some CT-guided drainage. My palliative care team was supposed to be getting in contact with them this week but we’re still waiting to hear back about that. Meanwhile, the painkillers seem to be working for me. I’m also on two different water pills to try to alleviate some of the fluid build-up.

We have also finally received word from my oncologist in a roundabout way. I now actually have a potential start date for a new treatment. Again, I have yet to speak directly to my oncologist which is a little disappointing but I’ve been approved for compassionate care (ie. free drugs) and they will be delivering the drugs next week. Somehow I’ve been approved to try a chemo pill without actually talking to an oncologist.

The palliative care team has been taking really good care of me. The nurses have been visiting us pretty much every other day.

There seem to be several problems we’re trying to solve at once: the build-up of fluid, the pain, and of course the cancer that has spread to my liver. But it looks like I’ve got a good care (and prayer) team behind me.

Just a quick update to say that John and I are home again, after only 12 hours in the hospital. We’re still waiting on answers, as the ER doctor was unable to find a good spot to drain the fluid in John’s abdomen. Knowing that the nurse practitioner will be coming to see us next week, he sent John home with a prescription for painkillers (hydromorphone). We got home in time for me to feed the kids breakfast and then lie down on the couch for a nap. John is also catching up on his rest now in the comfort of his favourite recliner (it sure beats the hospital stretcher).

We’re still waiting to hear back from John’s Kitchener oncologist about the other pills he had wanted to try. Meanwhile, over the past 3 weeks we’ve been visited often by nurses, a nurse practitioner and a doctor from the Cambridge palliative care team. They’re doing everything they can to treat his symptoms in the comfort of our home.

Excluding the 2 nights I was home after the initial study tests, I spent 11 nights in the hospital.

I’ve had more tests than I can even remember and some that I was sure were unnecessary based on my symptoms and was proven correct.

Anyway, basically I am never going back to Princess Margaret again. I have been removed from the study as they are worried future treatments will require similar length hospital stays.

Since I will not be on treatment, the next conversation with the Toronto oncologist was palliative care. It sounded incredibly complicated having having to deal with my local hospitals and home care. I assume they will figure it out.

My Toronto oncologist has suggested I have less than 3 months to live. (Note: This same oncologist said the same thing 9 months ago.)

All hope is not quite lost though. God can still heal me and there is still a potentially new (non-trial) drug from Japan that my Kitchener oncologist has been trying to get for me. He said it would be a good backup if the Toronto trial didn’t work. Studies have shown that this can add 3-4 months lifespan for someone with my diagnosis. I hope to speak to him ASAP.

Note: To any of my clients reading this, I am rapidly preparing everything I can to make sure my death does not impact your businesses. This is VERY important to me.

Having left the hospital, I have so fewer interruptions that I can get some work done. Four kids is nothing compared to the craziness of the hospital.

Prayer requests seem a little more difficult this time.

I think most importantly, pray for my family, to deal with my potentially soon death and to take care of me when I start needing more assistance.

I don’t think it would be a bad idea to pray for a miracle.

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.