Amylase and Lipase

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.

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2 Replies to “Amylase and Lipase”

  1. Continuing to pray, as you folks journey on. Your determination has been a testimony to God’s faithfulness through incredible trials. God is with you in the Storm. Praying you would know His, strength, and comfort and peace today, and that your church family is continuing in prayer.

    Praying for each one of you, John, Leanne, Harrison, Poppy, Magnolia, Daisy, as well as extended family providing support.

  2. Such encouraging news John. We prayed for you at prayer meeting last night and will continue to do so for the next steps.

My pancreas

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.


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3 Replies to “My pancreas”

  1. We are praying for you and your family. Thanking God for sustaining you & praying that he will continue to do so!! Praying those enzyme levels drop this weekend.

    I need to know, did you JUST find that song today or do you usually learn your biology lessons from Weird Al….

    1. Our appreciation for Weird Al’s sense of humour goes way back. Haha. And of course I used that song when we did our human body unit. How could I not? 😉

  2. Thanks for this latest update on the trial and your pancreas situation. so specific prayer requests can be made known.
    We are praying for your levels to go down and for God’s will regarding the trial and /or other treatments.
    As you say, only He knows what is best .
    May God sustain you and your family during these times.

Princess Margaret

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:


    • (This goes to both of us)
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Little Update

Radiation in London is done now and I am back on chemo at Grand River in Kitchener. We won’t really know until my next CT scan if the radiation treatment was successful or not. Thankfully I didn’t experience many side effects, just fatigue and some very minor aches around the radiation target area.

I’m still having some a lot of trouble with my appetite. Basically I have no desire to eat anything. I get hungry but have no desire to eat. I rate foods as tolerable or intolerable. My tolerable list is extremely short and changes constantly. I haven’t enjoyed eating anything in quite awhile now. Leanne and I are working really hard to solve this problem but I am not gaining much weight. We have some medical options we are pursuing as well. I promised my oncologist I will be 150 lbs by our next appointment near the end of June but I am becoming doubtful I will reach that goal as I am in the low 140s now.

I really do miss eating. On our trip to California I was eating kids meals. 

My CEA level is still slowly climbing, which is not surprising since nothing has really changed to affect it.  Hopefully next month’s level will show some signs of decline or stability as that test would include my radiation treatments.

My oncologist prescribed me some pills to help with fatigue and after a bit of experimentation with the dosage I think it is working. 

Prayer Requests

I need to get my weight and appetite under control.

Staying alive longer would be nice.

I am very thankful I was able to go on such a great trip with my mother and family. I had such a good time with the kids, especially my sweet little Magnolia. I couldn’t keep up with Leanne and the older kids but Magnolia and I seemed to have a similar amount of stamina.

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One Reply to “Little Update”

  1. It was so good that you enjoyed your trip with your family.
    We are praying for you as you continue treatment and for your eating situation to improve.
    May God bless and keep you as you wait on Him day to day.


My latest CT scan wasn’t too surprising. There were again signs of continued tumour growth in my liver and lungs and it looks like there is a new nodule on my pancreas.

The current chemotherapy may still be helping to slow down the growth so it makes sense to continue on this treatment at least for a few more cycles.

To help combat my biggest liver tumour I will be having 5 days of radiation treatment in London starting May 10. Hopefully this will reduce the size of my biggest liver tumour which may also help my current chemotherapy to be able to attack this tumour better as well.

Prayer requests:

  • Please pray that the radiation will help and for Leanne as she takes me to London for each of the treatments.
  • My oncologist has given me a new prescription to help with fatigue. Please pray that it works.
  • We will be leaving for a vacation with most of the kids this week on May 1. Please pray for our safety and that my health won’t cause any significant challenges or expenses on our trip.
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Treatment update

The results of my last CT scan (January) were mixed. There was a slight reduction of growth on my larger tumours but possibly signs of growth on a few smaller tumours.

Since that scan I have had 3 more CEA results. The first one showed yet another fairly significant drop (early February) but my late February result was a little higher followed by my latest CEA result of a few days ago which was also a little higher.

See a chart showing all of my CEA results since my initial diagnosis.

I have yet another CT scan coming up this week that should shed some more light on these results. My oncologist seems to have a lot of ideas of what we can try next but as far as standard treatment goes, there are very few options left and they are not very effective.

This new chemo treatment is definitely making me feel more tired in the days after treatment which is different than what I experienced with my other treatments. The rash is pretty maintainable, it usually leaves my face alone. I miss all my hair.

Lately I have been having trouble with my appetite. It is becoming very difficult to find foods that are remotely appealing to me. This has affected my weight a bit but we are working on it.

Thank you for your continued prayers.

Please continue to pray for us. It would be nice if my current, familiar treatment would start working like it did in the beginning again but I’m not sure how likely that is.

Pray for more treatment options.

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2 Replies to “Treatment update”

  1. Thanks for sharing, John, this latest update. We are praying that the current treatment will start to perform better or another option will become available for you.
    We pray, too for Leanne and all your kids that the God of Hope will give all of you all you need in these days as you walk with Him.
    In Christ,

    Janet and Marty

  2. We are praying for you that the current treatment will be more effective and that other good options will be available for you.

    We also pray for Leanne and the kids as they journey with you.
    May God bless you and keep you strong.

    In Christ,
    Marty and Janet

Latest treatment is working

I received a second good CEA (tumour marker) test result yesterday that seems to indicate that my cancer’s growth has slowed down. After my first 2 treatments the growth rate decreased by 25% and after another 2 more treatments the growth has decreased by 35%. My level is still VERY high but it is moving in the right direction again. I should be having a CT scan at the end of this month to confirm these indicators and I hope to see a possible reduction in tumour size.

I am still relatively side-effect free from the new treatment. I still have a rash but it’s quite manageable. The constipation from my anti-nausea medication seems to counter-act the diarrhea I would normally get from Irinotecan. I have been feeling a little fatigue during the week after treatment—not enough to affect my normal routine but I am noticing it. The pressure in my abdomen is still there sometimes but I don’t really have any pain. Oh and I had to shave my head once again as my hair was falling out with the slightest touch.

I have now had a cancer diagnosis for 5 years. I don’t search out statistics deliberately but I did happen to stumble across one when looking into one of my medications and it said that 87% of colorectal cancer patients do not make it to 5 years.

I’m just happy to be alive.

Please pray that I will continue to beat the odds, Lord willing.


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2 Replies to “Latest treatment is working”

  1. Hi John and Leanne,
    Praise God that John’s treatment is working. I continue to have you and your family in my thoughts and prayers daily. May God’s peace, joy, and blessings infuse your lives even in challenging times. I find solace in God’s promise to protect, counsel and watch over you Psalm 32; 7-8

  2. John and Leanne

    Thanks for sharing this encouraging update, great news .Praying that God will continue to sustain you and give you strength as you trust in Him.


It took a bit of work but I finally started a new chemotherapy treatment last Friday.

Since I don’t have private health insurance I had to apply for compassionate coverage from the drug manufacturer. Thankfully I was approved and that process only delayed my treatment by a week.

The new drug is Cetuximab which is apparently similar to Panitumumab which I was on for 4 years with good results. I was told to expect similar side affects like sensitivity to the sun and they basically guaranteed that I would get a rash.

I also received a referral to a radiation trial in London. My appointment is next week.

Prayer requests:

Thank God that there are still treatment options available for me and that I was able to be approved for compassionate coverage of the new drug.

Pray that this treatment works and as before blows away my doctor’s expectations of how long it will keep working!

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3 Replies to “Cetuximab”

  1. Praise the Lord for answered prayer of a new treatment and for coverage for the drug. He sustains us and renews our hope.
    And now prayers for you, for successful result as you continue fighting your cancer.

    1. Exciting to see God answering prayer. We will continue to place you & your sweet family into Gods hands with prayer.

Do I really need a liver?

I received the results of my latest CT scan today.

The results were not good. The current experimental treatment I have been receiving in Toronto is not working, so I will no longer be participating in that study. The CT scan showed significant growth on my liver which, if it continues, will cause my liver to totally fail and kill me.

I will be going back to my oncologist in Cambridge to see if he has any more options for me.

I get the sense that I don’t have too much more time left.

Fascinatingly, I still don’t really have any pain. The pressure in my abdomen has increased to the occasional ache but it’s still nothing a Tylenol can’t cure.

Of course I am not giving up yet, nor will I ever, but this is certainly a significant setback.

I’ve known this day was coming for five years now. I don’t like it but there’s not a lot I can do to prevent it. In fact, I think I’m doing all I can. I don’t know of anything else to do besides pray. Please join me in doing so.

Please pray for my family, who are not thrilled with the idea of me leaving them.

Please pray that my oncologist will be able to offer me some more treatment options and that these treatment options will work.

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4 Replies to “Do I really need a liver?”

  1. I have been following your posts and praying for you for a long time now and have rarely commented because I don’t really know your family although I may have seen the wife and kids at some homeschool events years ago but we never knew each other.

    I am just so sorry that you’re going through this. It must be so hard and you have been so strong and courageous in the face of some of life’s harshest dealings. I’m thankful for having been able to read your story and I have been inspired and humbled and moved and encouraged.

    I don’t feel like anything I say will be that good but I also don’t want to say nothing.

    Those who believe in Jesus’ saving work paying for our sins have heaven and eternity with God to look forward to after this life of trial and trouble. It feels like some get dealt a heavier burden and I feel for what all your family has been experiencing these years of facing life threatening illness and physical suffering and watching your kids watch your suffering, but in my view you have set an absolutely beautiful example and have been the kind of role model we all wish we were for our kids of faith and holding on to Jesus and what matters.

    May God continue to keep you and your entire family in His loving hands and hold you up when your strength is gone, and be the Father for your children if they lose their earthly one. God will not forsake or abandon your family and they will be safe in His care even if He takes you home earlier than most.

    After all this time praying for you and reading your posts, I wish I could meet you and your family even just once.

  2. John, we are certain this news comes as another blow to you. But our God is strong and still does miracles. We will not stop praying for you and your family.
    May you sense His strong direction in the steps ahead.

  3. John, I have been praying for you for five years, every day and I will continue to do so. Keep strong y friend and know that you are loved.

  4. Know that the prayers of many are surrounding you and your beautiful family. May you each feel His perfect peace as you wait for the next step. Believing for a miracle…..

August update

It’s been almost a month since I started my new treatments at Princess Margaret in Toronto. I probably should have mentioned earlier that, yes, I made it into the trial. I am officially being experimented on, or something like that.

I made it through the liver biopsy I mentioned in my last post. The doctor overseeing the procedure didn’t think it necessary to knock me out so I was wide awake while the fellow fished around inside my abdomen, extracting 10+ samples of my tumour. The doctor had to make a second hole to get enough samples. The wound was VERY unimpressive. I had conjured up a much more impressive image of the fishing holes in my head during the procedure. I think I liked my last biopsy better when they knocked me out and went down my throat.

I’ve been in Toronto countless times this past month. Even had two overnight visits so they could monitor me. My visits are gradually getting fewer though.

So far I am having basically 0 symptoms. I had a little fever on my first infusion but nothing since.

I take 4 pills every day for 2 weeks and then I get 1 week off.

Every two weeks I have an IV infusion to deliver the other part of my treatment. It only takes an hour to do the IV but it takes hours of waiting before I even get a chair in the infusion room. They give me an IV dose of Benadryl first and then finally they hold me  an hour for observation afterwards. I hate the Benadryl as it makes me VERY tired which makes it impossible to work. Princess Margaret is so big/busy that they hand you a restaurant style pager when you check in for treatment and they page you when your chair is ready.

After the first few Toronto trips I started taking the GO train from Kitchener to Union Station. From there it’s just a quick subway ride to Queen’s Park and a 1 minute walk to Princess Margaret. 

I actually am really enjoying the train. Once out of Toronto it’s a pretty scenic ride. I usually travel at less popular times of day so I usually have an entire train car almost to myself.

I wish every city had a subway system. So much better than the bus.

Leanne and I were getting so good at public trasportation in Toronto that we decided to try our skills in NYC. We caught a Broadway show while we were there too!

We won’t know if this new treatment is doing anything until my next CT scan or CEA level. My next scan is Aug 24th and I meet with my doctor a few days later.

I still have pressure in my lower abdomen from my expanded liver. I think it’s getting VERY gradually more noticeable but it’s so gradual I barely notice a change. Still no pain, yet.

Please continue to pray for us.

God has been taking care of us so wonderfully these years.

Please pray for this treatment to work.

Pray for my continued tolerance of public transit. I have a feeling my enthusiasm for the train may diminish a bit once the weather gets a little colder.



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One Reply to “August update”

  1. Continuing to pray for you John and Leanne as she supports you. Praying for your treatment to be effective and for strength for you and your family and safe travels back and forth to the hospital.
    We admire your incredible faith and hope in God.