Author: Leanne Clark

Posted on by Leanne Clark

Home

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.”

Posted on by Leanne Clark

September 13 update

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.

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Home Again

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).

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Waiting

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.

One worrisome symptom was a rash that flared up last weekend, but 5 days on steroids made it fade away. It was probably a delayed reaction to the immunotherapy, the doctor said.
John has had a build-up of fluid in his abdomen and feet ever since he got home from the hospital. The palliative care doctor who came to our house Thursday said that they could do a paracentesis, a procedure where they use a needle to remove excess fluid from his peritoneal cavity, which she described as basically the inner bucket that holds all your guts. The fluid build-up is likely due to all the IV fluids he got in the hospital, combined with his impaired liver function from the cancer.

The hospital here in Cambridge could do the paracentesis next week, but the palliative care doctor told John that if it gets unbearable over the weekend they could do it in the emergency department instead. By the end of the day Friday, it was definitely getting unbearable, so shortly after 6:30pm we arrived at Cambridge Memorial Hospital and presented to the ER. He got moved to a room with a stretcher and a warm blanket after about an hour, and they did some blood work and hooked him up to some monitors. As of 10:45pm we are still waiting to see a doctor.
While I’m just sitting here I thought I would take this opportunity to update you all and to thank you for all the encouragement and help we have received over the past few weeks. It truly means a lot to know you are praying for us.
I know you’ll continue to pray for us as we wait.
—
“O my soul, put your hope in God,
My help, my Rock, I will praise Him.
Sing, O sing through the raging storm,
You’re still my God, my salvation.”
— chorus from Lord From Sorrows Deep I Call (Psalm 42) by Matt Papa & Matt Boswell
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Still in hospital

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!

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First treatment

One week and a day after his chemotherapy treatment, John is finally starting to feel better. Due to the diarrhea, nausea, and loss of appetite caused by the chemo, he has lost 23 lbs. this week. The doctor sent him to the ER Thursday night to get rehydrated with some IV fluids. He was able to come home the same night and is gradually starting to eat more and actually keep it down.

Here are some specific requests as you continue to pray for us:

  • that John would be able to eat and regain his strength
  • that we would find the right balance of medications and nutrition to alleviate his side effects (diarrhea, nausea, loss of appetite, fatigue)
  • that the cancer cells in his body would continue to be destroyed

It’s been an exhausting week for me too, so thank you to everyone who has sent messages of encouragement, hymns and prayers. I haven’t had time to respond to all of you but listening to some of the songs you’ve shared has been keeping me grounded. Something our pastor, Gary McNitt, said last Sunday has stuck with me too: “A soul that is stabilized by God can overcome anything.”

John’s next chemo day is September 24. Hopefully this week he can get back to working at his desk and playing Mario Kart with the kids. (It might sound silly but that’s what they’ve been missing the most!) And hopefully the next treatment won’t be quite so brutal.

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January update

Happy New Year, everyone! May you find many reasons for joy and hope this year.

After about a month off, John is back on chemo again. His first treatment was on Friday, January 8. He lost his appetite (and 10 lbs.) over the weekend, but so far the other side effects haven’t kicked in yet. Basically he just slept a lot.

I gave him his first Grastofil injection today to help keep his white blood cell count up. Six more to go before the next chemo day on the 22nd. Being back on Grastofil means he can probably proceed with treatment uninterrupted until he and the doctor decide it’s time to take a break again. He’ll have another CT scan in about three months to re-evaluate.

Please continue to pray that the chemo will be effective, that God will give the doctors wisdom in their decision making, and that I will have the strength to take care of our family on the days when John is not feeling the best.

Keep praying for the baby too. My last ultrasound the week after Christmas showed she was growing normally, kicking and moving around, and she had a normal heartbeat, so we are very thankful for that. I found out earlier in December that I have gestational diabetes for the first time in my life, so I’ve had to monitor my blood glucose daily and follow a special diet, which so far has helped keep my numbers on target without the need for insulin shots — another thing I’m thankful for.

I’ll close with a little story to brighten your day. Sometimes I use Bible verses for the kids to practice their handwriting, and I stuck a copy of Philippians 4:13 on our fridge back when Harry was memorizing it. It’s been there for months. The other morning, he saw that I was tired and I must have seemed frazzled because he pointed to it and said, “Mom, just remember, whenever you feel weak, read this verse.” I just thought I’d share these words of wisdom from an 8-year-old for anyone else who could use the reminder today.

“I have learned the secret of living in every situation… I can do everything through Christ, who gives me strength.” Philippians‬ ‭4:12-13‬ ‭NLT‬‬

“When peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot Thou hast taught me to say, ‘It is well, it is well with my soul.’” Horatio G. Spafford

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Uncertainty and Emmanuel

John asked me to write a brief update to let you all know how he’s doing. He feels great and has been able to work lots of hours lately. The reason for that, however, is that his most recent blood test showed he did not have enough neutrophils to go ahead with his last chemo treatment on November 26.

The oncologist decided to give him a short break from chemo to allow his bone marrow time to make more neutrophils (bacteria-attacking white blood cells). This will also give his surgical wound more time to heal. John is going back to show it to the surgeon on Monday, then he sees the oncologist again on Wednesday. He has another chemo treatment scheduled for Thursday, December 10, but that will be dependent on the status of his wound and whether he has enough neutrophils. If not they might postpone treatment till January and he will likely need Grastofil injections again.

Thank you for continuing to pray for our family. I realize that we are all living with some degree of uncertainty right now and facing the prospect of a different kind of Christmas than usual, so I want to share something that encouraged me this week.

Our church had sent us an Advent box with activities to do at home with the kids. Last week the theme was Hope, and one of the activities was to have them draw a picture of themselves in a scary situation (e.g. alone in a dark bedroom with a monster’s eyes peeking under the closet door). Then we talked about how Jesus is always with us and how the name Emmanuel, which we sing in a familiar Christmas carol, actually means “God with us.” Finally, the kids were asked to add one more thing to their drawing: Jesus standing right there beside them. To me, that was such a comforting reminder! Whatever our future holds, Jesus will be right there with us. Emmanuel.

“So do not be afraid. I am with you. Do not be terrified. I am your God. I will make you strong and help you. I will hold you safe in my hands. I always do what is right.”

‭‭Isaiah‬ ‭41:10‬ ‭NIRV‬‬

Magnolia, Harry and Daisy
Magnolia, Harry and Daisy

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Home Again

I have more good news to report: John came home from the hospital this afternoon! He has two drainage bags still attached to his abdomen, but they look practically empty. Eventually, his home care nurse will remove them. In the meantime she’ll be checking on him daily.

Thank you again for all your prayers and support!

Posted on by Leanne Clark

Great News!

The surgeon who checked in on John this morning was concerned that his abscess had not been drained yet. He said that Monday was way too long to wait and he would definitely push for it today.

Just to give a bit of background, when they insert the tubes through his skin to drain the infected fluid from his abdomen, they use medical imaging for guidance. Apparently the CT scan machine that they normally use was undergoing maintenance, but by using ultrasound instead, they were able to do the procedure this morning. Thank You, Lord! What an answer to prayer. John came back to his room to find lunch waiting for him: jello, broth and orange juice.

It may take a few days for the abscess to be fully drained. By this evening, John said that his pain had already started to subside a little. We still haven’t heard when exactly he will be able to come home, but at least we are one step closer to that happening.

I know our church was lifting us up in prayer last night at the weekly prayer meeting, and many others were praying as well, so thank you! I’m so grateful to the brothers and sisters in Christ who have brought us meals and helped in practical ways (you know who you are). Thank you for being the hands and feet of Jesus.

Today was Maggie’s birthday, by the way. Daisy’s was last week, and thankfully John was still at home then. Although he didn’t get to be with us in person today, he still joined in watching her open her present and blow out her candles via FaceTime. She was a very happy three-year-old. All in all, it was a very good day.