Monday, Family Meeting

It's Timothy, Danielle's husband writing again.

Danielle's been in the hospital since the 7th now, a total of about ten days. As of the last post the doctors were working to restore her blood levels and find a good balance with the pain meds. On Wednesday Danielle had an x-ray to see if there was excess fluid in her abdomen which was causing the pain. This was inconclusive so on Thursday a CT scan was ordered, and the results came to Danielle and her mother on Friday afternoon: Danielle's liver had almost entirely been replaced by the cancer, and there were new and bigger spots in her lungs and the abdominal wall. The doctors set 11:00 am on Monday as the time for a family meeting, to determine the next steps of Danielle's care. While it was helpful to know there was a point at which some decisions would be made, it was difficult to understand how the disease had progressed this much, so quickly. On Friday night I didn't get the news from Danielle and her Mom until I dropped by the hospital with Martha, after buying her a 'happy meal'. Danielle and I wept with this news, knowing we had less time than we wanted.

The weekend was a bustle of visitors; Rachel, Danielle's sister came for a visit with her family and Lauren's family came as well on Sunday. I slept overnight both Friday and Saturday, and we had an extended visit from the palliative care doctor on Sunday afternoon to tackle ongoing pain management issues. This has been a challenge over the past week, and continues to be a challenge. Danielle often wakes at night in pain, and it is a careful balance, between pain control and drowsiness or confusion. A palliative care doctor has been visiting with Danielle pretty much every day in the hospital. It also complicates things, because Danielle would prefer to be at home. But if she is not stable, or has pain crises at home, then that would be problematic, because there are not as many resources available there.

I was able to go to church on Sunday afternoon and later visit with Danielle and a couple from our church, who opened the Word and prayed with us. My Mom brought Martha from my sister's in Brantford, to visit Danielle after that, and it was nice to go home with Martha, knowing that Ava would be home, and that we could all wake up together.

There were about 15 people present at the meeting this morning, including Danielle, the palliative care doctor, a social worker, a home care worker, Danielle's family, my mom and a number of her friends and colleagues. Ann, the hospital chaplain opened with prayer before the palliative care doctor talked briefly of the CT results and where things stood with pain control, and then opened the meeting to a discussion of how we might best care for Danielle.

While we had often discussed that Danielle might come home we recognized, given how things went during the past week, that pain management would not happen as easily at home as it would in the hospital. We knew that there were a lot of supports available if Danielle were to come home; a hospital bed, for instance. Plus all of Danielle's colleagues committed to provide nursing care in the home, on a scheduled basis.

However, the home setting also had its limitations, especially if myself and the girls were to be living there as well. What would happen if the kids woke up at night because Danielle was having a pain crisis? Would we really have any privacy as a family if nursing care were to be present in the home on a continual basis? And would Danielle have access to the kind of medical support she needed if she were to be home, for instance, in regards to emergencies or any others sorts of concerns?

In light of this, we recognized too that a hospice setting might provide the comforts of home, while preserving our actual home as a place where myself and the kids could have a bit of sanctuary. In the hospice there is a kitchen, homemade meals, a dining room, patios, and large rooms where I could stay overnight, where Danielle could have visitors and where we could bring the girls to visit as well. At the hospice, if Danielle was feeling well, then she could come home for an afternoon or even a night, while preserving a baseline of care, including access to palliative care doctors.

Danielle had expressed interest in a 'living wake', a time in which she could receive and enjoy visits from her family, her church family, her friends, and her colleagues. The hospice provides some privacy and the amenities for these types of visits. At the meeting, we were reminded that time is of the essence... since Danielle has 'weeks to months', it is not a decision that we should delay in making. We would need to accept that they would not make efforts, like they do in the hospital, to revive Danielle if her heart or lungs stopped working.

We would like to try to be a family yet, to spend time together, and there are a few things which Danielle wanted to do. She wanted to make some recordings, to create some scrapbooks, to look at pictures and the hospice has the room to do these things.

So it looks like Danielle will transition to the hospice, likely sooner than later, depending on the room they have available. Danielle, Rachel and I spent a bit of time in the hospital cafeteria last night, reminiscing about things and it was good to do this, to recognize what a blessing Danielle is and has been to all of us. We do not know how much time we have left but we do pray that they might be good days, where Danielle can find joy, and where we get to take joy in Danielle's life as well.