50 days after Car T

By December 4th I had been home for over 5 days after my release from Juravinski in Hamilton. Things seemed to be going reasonably well. I was on the stationary bike slow paddling , engaging in conversation with people and even ventured out for supper at my mother-in-law's. December 4th started out decently. Now I will share my wife's prayer request that went out on WhatsApp.

Scott and I would appreciate your prayers as he gave us a bit of a scare this afternoon. As the nurses were doing his dressing change at our house it appeared that he had a mini stroke. When the ambulance tendons had him in the ambulance he was starting to respond again. After a CT scan and blood work he spoke with the doctor and his oncologist and they feel it was actually a seizure related to the car t side effects. He is back to his usual joking self. He remembers being consoled in the house and yelling when taken into the ambulance because it was so cold. The anti-seizure medication that he was weaned off of a week ago will be reintroduced and he will stay in the hospital in Kitchener for at least the weekend so they can monitor him. "

Now I will jump to the stay at Kitchener Hospital Dec 4 to 8 and my WhatsApp text.

"Well I have had all kinds of tests over the last several days. I appreciate their determination to be thorough and cautious and as much as possible arrive at the root cause of my episode last Thursday. I have had a EEG of the brain, ECG on heart, MRI on brain, MRI on spine, chest xray and various physical and cognitive tests.
One doctor described recovering from Car T brain related side effects like recovering from a concussion. I know I have certain sensitivities to things so I can agree with that. I have met with many medical people it seems, but today I met with Dr Myers, a neurologist. She is still waiting for the EEG of the brain but at this point is leaning towards either a fainting episode of some sort or a seizure. Her thought at this point is to wean me slowly off of the seizure medicine this time. We will see what the EEG says, probably know results tomorrow. In the meantime I am enjoying fine dining here. Appreciate prayers for my new room neighbor, he was told yesterday that he likely has 30 days if he isn't treated for leukemia. Also appreciate prayers for my last room neighbor in Hamilton who had a similar diagnosis."

On release date of December 8th I was told that the EEG of my brain was consistent with the MRI as far as Car T residual effects but that they still felt it was some sort of fainting episode. My heart test was clear so also thankful for that.

So how does one navigate the emotions of an up and down Journey. Is it always as simple as saying I will rejoice in trials and fear not because God is in control?

Personally I think it's a journey and a process and I think there are many Bible stories that illustrate this. It's easy for the why questions to come up, why me when things seem to be going well, why a bizarre fainting episode. I can say that many times over the last few months I have felt a little gloomy at times, but it's that gloominess or perhaps even fear that can Propel us to God. It seems no day is the same as I recover at home. Some days I wake up motivated and other days I wonder what was all going on in my subconscious overnight. It seems that what we do with these things is what matters most. So many times I am encouraged by digging into God's word or hearing from other people. It's not easy to do what you know is the right thing to do but at the end of the day God is our source, our strength. I think of many of the old hymns and they were written out of great anguish. The Psalms in the Bible were not written with an automatic quick turning to God. They take us through David's feelings of feelings neglected. I am so thankful that these things are included in the Bible and give us permission to be human for that is what we are. I am so glad that Satan's temptation of Jesus is included in the Bible. It demonstrates to us who we should turn to for our source of strength.

My calendar going forward seems quite busy with blood work monitoring, tests and a very intense vaccination schedule starting the end of January. Thankful for God that goes before us.

27 days after Car T

Oct 28 was the day I somewhat naively went to the hospital for my cell reinfusion. In early October I had gone to Juravinski Hospital in Hamilton to have my T cells taken out. The process involved being hooked up to a machine that drew blood out of me through a port, that in my case was installed in early October. The machine extracts what it wants and your remaining blood goes back into you. Just like on a hospital show the bag is put in a cooler and sent to its destination, in this case a lab in California. They're the cells were modified to recognize the cancer cells in my body. Healthy T cells recognize and fight foreign cells like viruses and cancer. I always find God's timing fascinating. Since having lymphoma from 2011, stem cell was always the next step if chemo no longer worked and I was in process for stem cell in 2022 but then after church fasting and prayer I went into a remission. Cancer resurfaced and in 2024 this new thing called car t was suggested, it was overtaking stem cell for my type of cancer. In the meantime a secondary cancer reared its head and they had to act fast with chemotherapy. Cancer resurfaced again in 2025 and the process begin for car t. So many things happened in that year that positioned us better including downsizing our home. We moved spring of 2025. The process of getting my cells reinfused on October 28th was fascinating. They are brought in frozen, everything is timed with all of the Specialists there, they thaw them to a set temperature and then they were put into my body through the port. These little Pac-Man are now set loose and the watch and wait of side effects began. For a while it looked like I might even get out of the hospital for my anniversary on November 6th. The big thing is that they watch for are fever, confusion and loss of speech. These are our result of these cells causing inflammation and if they decide to go into the brain area inflammation there as well. I ended up experiencing all of these. On November 1st I had a blood transfusion, not something that is not unexpected during this process. They are constantly watching blood counts and will be for some time. On November 2nd I had a fever of 39.4. On November 3rd when they were doing my four times daily vital check and cognitive check I was basically blank cognitively. They called my wife who thankfully was at the hospital by that time and explained to her what she could expect. I do not remember this at all but I was talking a foreign language which I know none of and not making sense at all. That was when they introduced the steroids which are specifically to address these side effects. The steroids are introduced four times daily and one needs to be off them for at least 24 hours before they can be released from the hospital. Things gradually improved and I gained a crazy appetite from these steroids, such that I could eat a meal and eat another one like an hour or two later. When one is being monitored at least four times a day and you have someone beside you also on a schedule like that and in his case more intense, sleep becomes a challenge. The hospital is not a great place to rest. As that week went by they slowly started weaning me again off of steroids with the intervals becoming less each day. On Friday November 7 I was told I would probably be released by Monday November 10. We were even given our outpatient medications. However on Sunday November 9th I had another bout of confusion. When they came in to do my cognitive testing early that morning I did not pass. Cognitive testing includes writing a sentence, answering where I was including city, Hospital and telling them what year and months it was. Also had to name the objects they hold up and count backwards in tens from 100. They reordered the steroids. An hour later I was find and could pass the test but they had already ordered the steroids and the process begin again. The nurses were sympathetic but protocol is protocol . I went for another head CT and also a head MRI that day. CT was clear again. It took several days to get the MRI back but the residual that they saw on it was consistent with how I was behaving. So take two at trying to get off the steroids began. It started again four times a day and then by Saturday November 15th I received my final dose, a 1/2 dose. On Monday November 17th the nurse practitioner came in. I very much appreciated how she handled things. She wanted to know how my wife and I both felt about me being released. She explained that in theory I could be released that day because I was off the steroids for more than 24 hours and was passing the testing. However she said if I was more comfortable staying I could do that also. She was very understanding of my explanation that I really needed rest. We were released and the outpatient follow up began on Wednesday November 19th. During these sessions they provide hydration through my port, take blood and then a outpatient nurse practitioner reviews the blood results and any top-ups they may need to do. Blood work is not expected to be normal but they do want to see it within what they consider normal at that stage. I did not need top-ups during either my November 19th or 21st visits. I fully expect that I will at some point. At this point they are watching my liver closely as it's count is quite High. I am thrilled to be able to say that I have been able to rest better at the hotel, eat well and get out side some. Trying to walk a kilometer a day. I am so grateful for my Lord Jesus Christ and savior. When I am down he is there. It's not easy to be the main caretaker as my wife is, or to be my family and close loved ones. There are many ups and downs in this journey and we all deal with them in our individual way. God has impressed on me to pray for strength and courage. The recovery is not typically a short one. To put that into perspective they typically look at reintroducing childhood shots around the 6-month mark. When released here from the Hamilton Hospital my follow-up will continue from Kitchener. I am very grateful for that. Thank you all for your support in so many different ways. Spending time on the cancer floor bring so many needs to one's attention. Yesterday I sat across from a young man, I'm guessing early twenties and he is facing stem cell. There are no age limits. Young and it attacks. My prayers go up for those I come in contact with. For those of you from my home area that are on a cancer Journey and whom I have gotten to know, prayers and thoughts are with you.

it's getting real

So many times in life, when the going gets tuff, it can feel like we are treading water. Simply trying to hang on to the life board. Earlier this week I thought I am fine as long as I don't look over the edge of the Wings that are carrying me. I am so thankful for the image in "Exodus 19:4 you yourselves have seen what I did to Egypt, and how I carried you on eagles’ wings and brought you to myself." The great unknown can be so easily accompanied by anxiety and fear. When I look back on my life Journey, so many times I can see God's faithfulness. Even now as we look ahead preparing for Car t therapy in Hamilton Ontario for my lymphoma, I can see God in the details. In the midst of the very hard he has placed so many truths in my heart that bring me great peace. Beautiful verses and hymns that I learned as a boy spring into my mind. We are so grateful for the over provision for our stay in Hamilton. We are so thankful that we have not had to self Advocate, but rather the direction from the doctors has been very obvious so far. This is something we have prayed a lot about, that it would be obvious. I am so thankful that in the midst of the hard, when I cry out I know my cries are being heard. We very much value your prayers during this very overwhelming time.

when life Feels Like a Hurricane

Be strong and courageous is what we are commanded to do. But how Lord we ask when we don't feel like it. How do we do this when life Feels Like a Hurricane? "Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Recently I did a devotional on prayer and we were encouraged to ask the Lord to tell us what we should pray for. Very clearly I felt the Holy Spirit telling me to pray for courage and strength. We all have our goliaths,  things that seem so enormous, God's word is reminding me that I do not face mine on my own. I do not face my current health Challenge on my own. He goes with me and he goes before me. "Lord I Thank you for this promise that you are with us wherever we go. I thank you that it is not by my strength but by yours. Thank you Lord for surrounding us with an army of friends. Amen"

stage fright

Stage fright, I remember as a boy whenever a school play happened, it seemed we all had to participate, but I always got the silent act parts. Been wondering how we as humans would respond if we knew what the whole play of our life looked like. I can only imagine the stage fright. Perhaps it's good to start with silent parts in a play. I think God knows what he's doing when he puts us through many tests before we get to exams. He knows what he's doing when he gives us a small part in the play before he gives us big parts. He works so patiently amidst our human weakness, tweaking us and guiding us along life's way.

Rain clouds

When I look ahead all I see is rain clouds, then I remember where my help does come from, from the author and finisher, the Alpha and Omega. The same God that provided a way of salvation, that parted seas and has performed many miracles, is on my side. The God, who I can speak directly to, the one who provided the Holy Spirit, my comforter, that God is on my side. When I am weak he is strong, when I feel deflated by cancer diagnosis and waiting and stress, he is there. Praise be to God in the midst of my circumstances. Thanks be to God that he does not take my moaning and groaning as an insult, but instead is there without outstretched hand. After a tiring year of cancer treatment and recovery, it looks like more is ahead. It is when I can come to him in my humanity, in my weakness, that he wants to increase my faith. I must decrease and he must increase. When my heart is heavy for those close to me, I am thankful for a bottomless well that God provides.

Lord help me not to go around that well but to walk right up to it. Your child, Scott

nothing is enough until God is

Nothing is enough until God is. Until God Is Enough nothing is. This is a tough message to understand in our material and self-reliant world. Often we need to come to our end to say that God is enough. And then it's a discipline to keep saying, God is enough. It's so easy for me to take my eyes off Jesus. When I look down, it's when I am in control but when I look up with my hands open to the heavens, that's when Jesus is. He wants that to be my attitude every day, a surrender to him of all that I am, all that I dream of and all that I have. Funny that all that we have is from him anyway but we hold it so tightly. As I go through another tough spot in my life, I am reminded to look up, he is enough.