There have been two blood tests to see how my various cell counts are doing and the news is good, as the counts are up on both August 8 and 21.
Both hemoglobin and platelets are getting closer to the normal range.
I can feel the improvement in going up the stairs at the lake. Two weeks ago I had to stop several times on the way up. Now I can go up from the dock to the driveway without stoping, a big improvement.
All these numbers are currently being helped along by injections of Grastofil twice a week and IVIG every four weeks. Shortly, I’ll stop these “helpers” and find out if my bone marrow can maintain these numbers without any assistance.
Once I can maintain numbers near or in the normal range on my own, the biologic Stelara to deal with the Crohns will be administered.
Life is returning to normal with time spent at the lake along with several outings to attend two memorial services and a 50th wedding anniversary of longtime friends this past week.
We are so very thankful for continuing improvement and appreciate all of your support and encouragement.
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!
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.
