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. 

The haematologist told us that Garry’s bone marrow is in failure, and is no longer producing white blood cells and the red cells are being eaten by macrophages. This has contributed to critically low levels of white cells and decreased hemoglobin. Without adequate white cells, you have no immunity to any bacteria or virus and a simple cold could be fatal.
We have been praying for a miracle, that Garry’s bone marrow would begin to produce white cells again and there has been an improvement in the last two days. Garry has gone from having 0.1 WBC to 0.5 Friday and 0.6 WBC today. This is the first time that things are trending upwards.

Friday was a very difficult day in so many ways, in part, because Garry’s blood pressure had dropped to a dangerously low level of 73/44 normal being 120/80 Thursday evening.
At that level the intensive care doctors get involved and they came to see Garry and gave him IV fluids and corticosteroid to help raise his blood pressure. At a very low level your extremities do not get enough blood and you can start to have organ failure. Friday morning the intensive care physician came to speak to both of us as they were still concerned about continuing low BP in spite of intervention. 

She talk to us about the possibility of Garry being admitted to the intensive care ward to receive drugs and treatments not available on a regular ward. She asked him what his end of life wishes were, and what he would like them to do if things went South. Despite the fact we had discussed this in 2018 when Garry was first diagnosed with lymphoma, suddenly we were facing the reality of it given his condition. Garry responded he was not done with living and asked them to do whatever was necessary.

Later that afternoon, the haematologist came and spoke to us, and said that they had tried a lot of things to kickstart Garry’s bone marrow, and at this point nothing had been effective. 

They were going to send Garry‘s bone marrow for gene testing and to see if they could obtain additional information regarding other treatments. We asked about a bone marrow transplant and he said that that would not be possible as Garry, first of all was too old and that he would not survive the process. The haematologist did not have an answer for why Garry has developed febrile neutropenia and wasn’t sure what treatment he would continue.

The head internal medicine doctor came in shortly afterwards to see if we had understood what we had been told by the hematologist. He was much more optimistic and plans to continue giving Garry grastofil, corticosteroids, and antibiotics to fight the septicaemia and infection in his Perianal area that also developed earlier this week.
The intensive care doctor wasn’t sure she had the right patient when she first came in to Garry‘s isolation room because in spite of everything that is going on in him, Garry looks well. He continues to be upbeat and optimistic, in spite of the daunting and difficult news that we’ve heard this week.

Garry did see Dr Gingerich the pain doctor at Cancercare on Thursday. They have increased the dosage of the Fentanyl patch and are trying to wean him off the breakthrough Hydromorphone as he has developed significant muscle twitching which is a sign of toxicity to that drug.

A PICC line was inserted in Gary’s arm, as the IVs were no longer working very well and continually needed to be changed. It will be so much easier for the staff and for Garry to have this line to take blood samples and to give drugs.

Many of you continue to faithfully pray for us, and we know that God is with us. We pray that Garry’s bone marrow will continue to heal and function like it was intended to do.

Garry’s condition is listed as serious along with 24 hour visitation rights. He is able to have visitors as long as they wear a mask and wash their hands. Everyone who has come to see Garry wonders what all the fuss is about because he seems fine.

Garry is my hero and we continue to walk hand-in-hand in this journey. We have grown closer and stronger in our faith throughout everything that has happened.
Thanks to all of you for walking this journey with us, for praying for and supporting us. We appreciate all of you. 

With love and gratitude,
Shirley and Garry