The Journey Continues

Written from Shirley’s perspective

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,