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.
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.
Well… maybe for a post or two. As you know I track a few bloodwork numbers and things have been pretty low since bring admitted but over the last two days thing have been trending up, which is very good news. Not to mention my blood pressure is coming out of the danger zone. Time for some pictures, a thousand words right?
“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.
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.
Last evening Garry received a blood transfusion along with a Intravenous Immunoglobulin (IVIG). He had a reaction to the IVIG and spiked a temperature. In addition to that he was experiencing some chest pain, so an EKG, bloodwork, and a nitro patch were given. He also was having trouble catching his breath, and the nurse suggested that he might be experiencing a panic attack. Due to all of this, there was a lot of people and a lot of activity in his room throughout the night. When I visited him today, he was quite tired from all of the above and was a bit discouraged.
His sister Gail will be arriving tomorrow from North Saanich BC to see her brother. We haven’t seen Gail for the last two years and it will be wonderful to see her again.
We still don’t have the finalized bone marrow biopsy results but I am planning on being at the hospital at 8:30 AM tomorrow and hope to catch the doctors while they are on their rounds.
It seems every day has some new challenges, but in other ways, Garry is improving day by day. We still have no idea of when he might be coming home, as they need to ensure that he is not dealing with an ongoing infection given his compromised immune status
We have been so thankful for the wonderful care Garry has received this past week.
I hope we are not overwhelming you with too much data, but Garry (and Shirley too) has found that keeping the blog up-to-date with the happenings has been very helpful to keep track of everything.
Thanks for standing with us, and for all your love, support, and prayers.
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.
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.
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.
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.
This post is a bit overdue as I had planned on a post for the halfway mark in the radiation treatments. June 7th was number 10 of 20 but somehow it didn’t get done as there was a lot going on.
On May 30th, Radiation #4, I get a call from Linda, who represents the drug company Johnson and Johnson. She is a former ICU nurse of 20 years at HSC and then represented another drug company for around 10 years. She informs me that Dr. Shaffer has decided to treat my situation as Crohn’s and the recommendation is to use a biologic product called Stelera.
Linda explains a bit about the Stelara and the treatment process involving a clinic where nurses administer the biologic. Step one is to get an hour long IV infusion with follow up injections every eight weeks. I’ll be trained on how to do the injections at home during the 2nd clinic based session. We are receiving the Stelera on compassionate grounds and there will be no cost to us for this very expensive treatment. We are so thankful for our health care system as in other countries this could bankrupt you!
Nice! Things are moving forward on treating the PITA.
The following day, May 30, I get a call to schedule an appointment for the Pain Clinic at SBGH for June 1st as they have had a cancellation. Things are moving forward on multiple fronts, thank you Jesus!
On June 1st we meet Dr. Gingerich at SBGH CancerCare Pain Clinic. Normally, he only works with people who have cancer related pain but, prayers are getting answered as he makes an exception to see me. Three other doctors have made several urgent referrals to the pain clinic and we find out later that have decided my situation is not severe enough to warrant getting bumped up on the waiting list. I’d just need to wait, possibly months to years to get seen.
Dr. Gingerich and his nurse take a detailed medical history and after some discussion he decides on a more suitable medication for me. Dr. Gingerich will also follow up in a couple of weeks. A few days after trying the new medication, it seems like the dosage is a little low as I’m still in significant pain. Again I‘m able to call his nurse and explain my situation. She calls back within an hour and Dr. Gingerich increases the dosage. His goal is to have me pain free so I can once again function and have a life beyond endless pain interspersed only with medical appointments.
We also touch base with Dr Oladini, my family doctor who organizes a disability parking pass as I am struggling to walk the two blocks from the Parkade to CancerCare.
This new medication is a game changer! I feel much better using it and while there is still a need for additional medication to handle pain breakthroughs and still some constant discomfort, we seem to be on a very positive track. We are so thankful to have a pain management specialist on my growing team of doctors.
I’m able to attend our church in person and manage the sitting pretty well. Speaking of Oasis Church, my Life Group has been very supportive. Shirley has decided that my walking from the parkade to the CancerCare building for radiation treatments is too far so she is driving me, waiting the 10-15 minutes and driving me home. Well, on Tuesday June 6th, she has a conflict and can’t drive me. However, David from my Life Group steps up and picks me up along with a side trip to get the disability parking pass. We have a great conversation on the drive there and back home.
Back to the PITA, the testing seems to never end with a capsule endoscopy to investigate the small bowel to rule out any involvement in that area. We find this out driving home from a radiation treatment and they propose June 19th. When I explain that I have a radiation treatment that day they don’t think it will be possible. The next available date is July 19th. When you’re already on the edge, this new test and scheduling issue is very upsetting. It takes me a while to calm down and let it go.
So here we are today, Tuesday June 13th, Radiation #14 and as I arrive at CancerCare I get a phone call from the clinic that is administering the Stelara and the date for the IV infusion is set for June 26 as there’s is a 4 day waiting period after radiation is completed.
In spite of all these challenges, God has been faithful and so many prayers have been answered.
And by the way, Shirley’s angel is actually named Eilie not Kylee and Mandy is friends with her Mom. Mandy knows the family who lives in Niverville and sent a picture saying is this your angel? What a small world and what a blessing that prayer was on a day when Shirley was running out of hope and wondering how she would keep on being there for me.
Thanks to each of you for your prayers and continued support, it is so appreciated!
