A few bumps in the road along our journey!

As you know, Garry’s situation is much improved.


In spite of being told that his bone marrow was no longer able to produce white blood cells and the red blood cells were being phagocytized.(eaten) he has seen a significant improvement in those counts. Unfortunately, the white blood cell counts, WBC, have fluctuated from a high of 4.8 and have trended downwards the last few days to a WBC of 2.4 today.

Going the wrong way!


We were hopeful that the bone marrow would continue, without any additional help, to produce these cells. However, it appears that they may reinstate the grastofil injections along with the corticosteroid to stimulate the bone marrow to produce the WBC’s.

Garry’s haemoglobin continues to rise and was at 79 today so a blood transfusion is no longer indicated. His platelets are also holding their own at 46 which is an acceptable level.

Low but passable



His blood pressure still tends to be a little on the low side, but not dangerously so, and he needs to be careful when he gets up because there is a little bit of dizziness and instability.

His temperature is normal but he continues to get the IV ceftazidime every eight hours to ensure the organism that caused the septicaemia and wound infection are dealt with. He will complete this course of treatment on July 20 and will likely be discharged shortly after that. At this point he has been in hospital for 26 days, most of that time in isolation.

His pain level is much decreased, and instead of being a seven or eight out of 10 when he would get up to walk, it is now a one or two. He is no longer taking any breakthrough Hydromorphone or Tylenol to make it through the day. As you can imagine it is a tremendous relief for Garry to be able to be almost pain-free once again.

We are so thankful for all of this good news, and ask that you continue to pray with us that his WBC counts continue to go in an upwards direction and be maintained.
The hospital is now looking at his discharge needs and it seems he might need a wound care nurse once he’s at home.

I’m really starting to miss him and can hardly wait for him to be discharged.

It has been wonderful that his sister Gail has been here twice and just left today after being here this past week. She was great company and we enjoyed a number of restaurants including Harth, Bellisimo’s, Nuburger, and Sushi N. Such nice treats!

Garry is able to have visitors as long as they mask and wash their hands before going into his room. He finds the days long and would enjoy a visit.

His appetite is back and he just finished consuming a pretty large grilled Reuben sandwich which I prepared for him at home. Do you think he might be a little bit spoiled?
Yeah, I think so too!

Well, that’s the report for today and I’m glad that it’s mostly good news. Thanks again for being on the journey with us, for your love, support, and especially your prayers.
We are blessed!

With love and thankfulness
Shirley and Garry

Friday’s here but Sunday is Coming!

Friday, July 7 was an incredibly difficult day.


Garry’s blood pressure was critically low at 78/43. At that level there is not enough blood pressure to perfuse your organs to give them an adequate blood supply. Without adequate blood flow you can experience organ failure. There was a distinct possibility that Garry would be admitted to the ICU and this young female doctor said to us what do you want as far as end of life treatments? Garry replied to do whatever was necessary to maintain life as long as it didn’t leave him in a vegetative state.


They did begin to treat him with IV fluids, and corticosteroids, and that did help to raise the blood pressure to a slightly better level.
Later that afternoon, the head haematologist came to say that due to chemotherapy and all the other treatments for the lymphoma, they had caused his bone marrow to fail. At that point, they had been giving him injections of Grastofil, a treatment designed to increase your white cell counts(WBC). They began Grastofil treatments June 28, but had seen no improvement in the white cell counts. He also indicated that Garry’s red cells were being eaten by macrophages, causing him to have a low haemoglobin on top of everything else.
He said Garry had no capacity to fight off infection and his future was to live in a bubble, which he said would be very difficult, and that his life would be short as any infection would likely be fatal. As far as he was concerned, they had tried many things to boost the white cell counts, and that there was nothing more that could be done.
To say that we were devastated, would be an understatement.

Continue reading “Friday’s here but Sunday is Coming!”

Mystified and Bewildered

These are two words you hope to never hear from a doctor. But this is exactly what the outcome was from the complex case grand Rounds this past Friday. There were many different disciplines involved, in fact, I think the only one missing might have been Obstetrics.


We had the internal medicine doctors leading the pack as they were collating the data from all the others disciplines. We had oncology, infectious diseases, hematology, acute pain physicians, pathologists, colorectal surgeon, GI specialists and intensive care physicians assess Garry’s case.


All the biopsies, scopes, CT scans, and the myriad of blood tests have all come back inconclusive as to the cause of the febrile neutropenia. They have been giving Garry grastofil and steroids to increase his white cell count. 

Continue reading “Mystified and Bewildered”

You’re blessed when you’re at the end of your rope.

“You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule.”
‭‭Matthew‬ ‭5‬:‭3‬ ‭MSG‬‬
https://bible.com/bible/97/mat.5.3.MSG

This scripture was part of the message from Pastor Wes at Oasis Church this morning.
We certainly identified with the message and have definitely reached the end of our rope, and are leaning on God to see us through.It’s amazing when you do that, the peace and joy that you experience, in spite of difficult circumstances.

I don’t know if you remember almost 2 weeks ago when I took Garry to the ER at SBGH that the doctor indicated Garry had a troponin level of 400 which indicated a heart attack.
They repeated the bloodwork, which began to go down and so he felt that it wasn’t likely that was what was happening, along with everything else.

Continue reading “You’re blessed when you’re at the end of your rope.”

And so it continues

Gail, Garry’s sister has come from Victoria, BC to visit him while he is in the hospital. We haven’t seen Gail in person for the last two years and it was a very emotional moment when she first saw Garry this morning.


We saw the internal medicine resident while we were there and of course I had a number of questions for him. The biggest concern at this time is the lack of white blood cells. Garry’s count is at a critical level of 0.2. We still don’t have the results of the bone marrow biopsies, one which was taken last Wednesday and then another last Friday. Hopefully the results will show why Garry’s bone marrow is not producing cells.

Continue reading “And so it continues”

Blog Post Monday June 26th

Garry has been in hospital for a full week at this point. 
He is on E5020 in a positive pressure isolation room at SBGH. He is on what is called reverse isolation and is able to have visitors as long as they wash their hands before entering his room and it’s also recommended that they wear a mask.
The days are long and I know he would appreciate a visit from those who are interested in seeing him.


His situation is still critical as his bone marrow is still not producing any white cells.
The white cells are what protect us and give us immunity against infections. They are planning to give Garry a blood transfusion today to help give his body a boost.
The bone marrow results are still forthcoming, but they feel that the bone marrow has stopped producing white cells. It is, however, producing platelets and red cells.
They still don’t know what has caused the neutropenia, but are thinking it is may be related to previous chemotherapy treatments and possibly the CAR-T therapy that Garry had in 2021 in Toronto.

Continue reading “Blog Post Monday June 26th”

Post for Friday June 23

The Journey Blog is under new management. Shirley will be taking over content creation and Garry will be providing technical support.


Garry has a significant number of new things going on with him.


He has been somewhat confused and angry, which is very unlike him. Yesterday the doctor told him he had delirium that can be caused by an infection, the pain he is in or the pain meds. He also has abnormal blood clotting factors, so they have him on anticoagulant therapy to deal with that.


I‘ve gone with him the last two days to HSC CancerCare  by a stretcher transport for his last few radiation treatments, with the last dose #20 being this afternoon.


His white cell count is still very critical and he has no white cells in the differentials and an extremely low count of 0.3. I didn’t know that such a result was even possible!
His haemoglobin had dropped from 122 to 70 and they are now doing testing to see if his red cells are auto hemolyzing. As best they can tell, it appears his bone marrow has stopped producing cells. They are doing another bone marrow biopsy this morning as they feel they didn’t get an adequate sample the other day.


So far his blood cultures and urine cultures are negative but they are repeating them just to be sure.


They have now given him some heavy duty IV medications, Vancomycin, and Meropenem in addition to the previously given Piperacillin and Tazobactam, as he was still running a fever yesterday. Last night his temperature spiked but was normal this morning.


The doctors are doing a lot of testing as he has a significant number of other concerning results in his blood chemistry. It appears that he will be in isolation, in the hospital for some time. The internal medicine resident yesterday said that they  had more questions than answers at the moment.


The dietitian has also been involved with providing Garry a nutrient dense, high fibre diet, along with many snacks throughout the day to encourage him to eat more. Due to all the medications and pain that Garry has been in, he has not been eating properly and has lost weight, which he certainly cannot afford to lose.


So, our journey continues, but we are receiving such wonderful medical care with so many people helping us along the way.


Thanks to everyone for your care and concern.

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,

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.