Tag: lymphoma

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The Journey Continues

Written from Shirley’s perspective

The Auhor

At 3:30am Monday June 19th I woke up and went to check on Garry. These days somebody is always checking in on Garry.

I had gone to bed at about 10 PM Sunday evening and Garry was watching the end of a Ted Lasso program. When I got up the lights were on, his bedroom door was open, and I found him half laying on the bed in his clothes. Immediately I felt something was wrong, and went to wake him up. He was burning up and was very difficult to wake. He seemed very confused and was acting very strangely.

I felt fine, in a deep comfortable sleep wondering what all the fuss was about.

I took his temperature which was 39.3 Celsius or 103 Fahrenheit for those who haven’t made the switch yet. Between the confusion and the significantly high fever, I told Garry that I was going to call for an ambulance. Like most men, he said, I’m absolutely not going in an ambulance. At that point, I told him that if he could take the Tylenol, get dressed, and get out to the car that I would drive him to the hospital myself.

No excuse here guys, take the Tylenol, take the ambulence, it’s like an Uber to the airport and the Nexus line.

It took close to an hour to accomplish that and we arrived at SBGH at 4:45 AM. They triaged Garry immediately and and took him for bloodwork and an EKG after doing his vitals. His fever at that point was 37.8 Celsius, due to the fact he had had some Tylenol. When asked by the nurse, Garry said he was feeling great, and seemed very happy. I said this was not typical behaviour, and that he was not himself at all.

A few minutes later, a nurse came out to the waiting room and asked me to come with her as they had a room for Garry. I passed him as he was having blood cultures taken, and as I went by he said oh my something must be really wrong with me as things are happening really fast!

Because of the confusion he was experiencing, they ordered a CT scan from his brain down. At that point, they were looking for a possible brain tumour, other areas of lymphoma, and possible infection in his pelvic area. Fortunately, the CT scan did not show anything new that was concerning. Garry spent the night in the observation unit and has since been transferred to a private room on the fifth floor.

A few minutes later, the ER doc came and said that Garry’s white cell count was 0.2 and that the differential showed no cells at all. This was a critical result, and he said that Garry had febrile neutropenia, a life-threatening condition. This is what happens when a lab tech write the blog.

https://www.healthdirect.gov.au/neutropenia

The internal medicine doctors have gotten involved to determine what is causing this neutropenia. This morning they did a bone marrow biopsy to see why cells are no longer being produced. Their best guess at this point is this a result of the previous chemotherapy treatments or possibly because of the CAR-T treatment.

They are continuing the radiation treatments and have arranged an in hospital transport to Health Science starting today through till Friday when he will have completed 20 rounds of radiation.

The Stelera treatment for Crohn’s has been delayed until his immune system recovers.

He is currently in a private room on reverse isolation to protect him, as he is highly susceptible to infection at this point.

There are many people involved in Garry’s care at the moment. It includes a G.I. specialist, a hematologist, a radiologist, an oncologist, internal medicine, physicians, ostomy nurses, a dietitian, people to transfer him to Health Science Centre’s, plus the nurses on the ward.

I am so relieved that Garry is getting the help that he needs at this point. The last few weeks have been quite frightening as I’ve seen Garry struggle with a lot of pain, spiking temperatures, with significant change in personality including a lot of confusion.

He is in the very best place, as they are caring for him, and getting to the bottom of what is happening to him. We are both so very thankful for all the love, support, and prayers from all of you.

It is with a grateful heart that I say thanks to all of you for being with us and helping us in our journey.

With love and thankfulness,

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Angel and Miracles

It been a busy few days starting with Shirley meeting an angel, and then a couple of days of miraculous answers to prayer! Pretty exciting eh?

The Angel


We are still in awe of the goodness and faithfulness of God to send our very own angel to encourage Shirley on Monday morning. She was struggling with seeing me in overwhelming and seemingly never ending pain. To have Kylee reassure us that God hears us, that He sees us, that He is with us, and that He is our Healer was such an encouragement to both of us. She specifically prayed for hope and strength for Shirley and healing for me.

This was not some coincidence, as some might think, but was our loving, Heavenly Father reassuring us that we can lean on and depend on Him.

Continue reading “Angel and Miracles”
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It’s been a busy week

To say that it’s been an eventful couple of weeks would be an understatement. From dark and stormy days that never seemed to end, to a much brighter day.

Storm Clouds Gathering
Storm Clouds Gathering by Lynn M Reid is licensed under CC-BY-SA 2.0

The Journey blog needed a few posts prior to today but I just was not up to it. So, Shirley has kept some folks up to date via email so there will be some overlap on the content but it will be a bit more from my viewpoint.

The PITA Issue

With the perianal abscesses and fistulas, now referred to collectively as PITA, there has been increasing pain over several months which have forced me to take ever increasing amounts of Hydromorphone to get any sort of relief. I was watching the clock to see when I could take my next dose, and life revolved around pain management. On April 18th, in conjunction with my GP, I added some long acting Hydromorphone to the mix twice a day. This was still supplemented with fast acting Hydromorphone 3-4 times a day to cope with pain flair ups. On the 20th the 2x daily amount was increased and again on the 25th when we had a crisis meeting with the colorectal surgeon.

Continue reading “It’s been a busy week”
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Things are happening

Since the last post there has been a fair bit of activity on both the cancer and PITA front.

Shortly after our appointment with the oncologist we received an appointment for a CT scan on May 4th with a follow up oncology appointment to review the findings on May 8th. At this appointment we should know if radiation is a viable treatment.

Today, April 25, 2023, we had an appointment with our Colo-rectal surgeon to discuss my current symptoms, pain management and the status of the gastroenterologist (GI) consult.

After discussing the symptoms along with another physical examination his comment was that it’s no worse, but is also not improving. His recommendation at this point is to perform an outpatient surgery to help drain one of the abscesses/fistula by placing a seton. While he’s there a scope examination and further biopsies will be performed. This procedure will take place next Tuesday May 2, 2023 at 7:45 a.m.

For pain management there has been an increased dosage in long acting Hydromorphone, some fast acting Hydromorphone for breakthrough pain management and some serious antibiotics.

For the GI consultation my case will be reviewed on May 18, 2023 during GI grand rounds where the IBD Gastroenterologist Dr. Seth Schaffer, will present my case to all the other GI specialists to get the best thinking on my situation. Dr. Schaffer will call me within the week following to discuss the next steps. These steps are likely to include a capsule endoscopy and if biologics are indicated and which one(s) would be best to treat my situation.

Unfortunately, the PITA + Lymphoma = complications. Biologics to treat the PITA are known to aggravate lymphoma. 😕 Treating the lymphoma with chemo also causes problems with PITA treatments. Things are getting complicated.

One of the better treatment paths is to get the approval for radiation of the lymphoma, for it to work and then treat the PITA with biologics and have them work as well. 🙏

It’s all more than a little overwhelming but we have a big God who is with us at all times and in all things. Plus we have a wonderful support system of family near and far, our Oasis church family with special Life Group friends, and our special friends Chris and Elaine that we’ve done a lot of life with, over 40+ years.

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Update and News

A small update on me and some exciting news about cancer treatments in Winnipeg.

I’m doing fine from a lymphoma cancer perspective. I have no signs or symptoms of anything that might be worrisome, and as we know worrying is pointless anyway 😊. My next checkup is March 27, 2023 which is almost exactly two years after the CAR-T treatment in Toronto. I’ve been told that the two year mark is a bit of a turning point as statistically the success rate of the treatment increases a fair bit. I’ll take that!

On the news front it’s literally news as in an announcements that CAR-T treatments will be available in Winnipeg starting this spring. This will be such good news for those needing treatments who will no longer be required to travel and be able to remain close to their family and support networks. This support is a huge factor is the success of the treatments in my mind. We were so fortunate and blessed to have and abundance of very supportive relatives in the Toronto area during our 75 days away from home.

Some links to the announcement…

New specialized cancer treatment program coming to Manitoba

Manitoba provides $6.6M for new cancer therapy program.

When I had my CAR-T treatment my T cells were sent to a lab in California, USA for “manufacturing”, the process of genetically modifying the T cells to attack the cancer cells and growing several million of these modified T-cells for infusion back into me. The logistics and costs of this process are quite amazing and expensive.

However, Canada is getting in the game with CAR-T manufacturing in B.C!

First made-in-Canada CAR-T cell therapy for cancer shows promise in clinical trial

The new trial, called Canadian-Led Immunotherapies in Cancer-01 (CLIC-01), is the first to manufacture CAR-T therapy in Canada. It uses a different kind of cell manufacturing that opens the door to less expensive and more equitable treatment.

So thankful for our medical system and CAR-T, it’s a life saver.