Praise God for His strength in trying times

It’s been another busy few days! I’m finally getting the chance to write this blog after spending the past few hours resting and listening to sermons, immersing my mind again in the truth of God’s Word and praying. It’s the only way I can function.

So, come Tuesday evening, I still hadn’t heard anything about the family meeting the nurse had mentioned in passing over the weekend. I felt out of the loop and wondering if the higher ups were planning on trying to move Daniel to a palliative ward (Abbotsford or Surrey), as that is what the palliative Dr. talked to me about the week before last over the phone. She said they were concerned with the team’s ability to efficiently follow the end of life orders she had written as they’re not accustomed to that at all. And she also mentioned her concern about their emotional ability to cope.

If Daniel was moved, then I would hardly be able to see him because of the distance, and even less for the kids. Daniel has mentioned to me the importance of our emotional support, and that of friends, for obvious reasons. Plus, I don’t have the strength to get a whole other team of nurses and doctors acquainted with his case and needs – the chart only tells so much. But most of all, Daniel’s ministry is here at Ridge Meadows, and that is where he needs to stay to finish it, one way or the other. It’s because there is that emotional connection between our situation and some of the medical team that we need to stay. We pray for a harvest.

So, back to Tuesday evening, I got a call interrupting dinner from the unit clerk. She informed me of an appointment that Daniel had for Thursday, the 18^th, out at the Abbotsford Cancer Agency with Dr. L, whom we had met before. She is the radiation oncologist. I said, “What!?! I haven’t been told anything about this!” No one had told me they were even considering this option – palliative radiation – let alone making decisions about appointments. I was quite upset based on the past few days of already feeling left in the dark, and I didn’t know if this was a back-handed way of getting him to Abby and finding an excuse to leave him there. I said, “This is not a team play!” The clerk didn’t know anything else and said I needed to wait to speak with the doctor the next day.

So, I got off the phone (I had to take it outside because my kids were too loud, with Kezia screaming because I stopped feeding her her dinner). I just tried to function to get the kids to bed and make it to the hospital to hopefully figure out more.

I talked with the RT who was on – one of our favorites because she has taken the time to explain things to Daniel regarding his trache and had taken a lot of fear out of it when he was first adjusting to it four months ago. I asked her about the appointment, and we chatted. And even though she didn’t have a lot of specifics to offer, which I didn’t expect anyways, she did confess, “I won’t pretend that I don’t cry every time I leave Daniel’s room.” She agreed that our situation is hard on most everyone. She’s not a Christian, and I pray God will reach out to her and many others and draw them to Himself through this.

I also talked with our nurse friend, Sandy, on the phone. She works in palliative care and was able to tell me perhaps why they were suggesting this, though she isn’t covering Daniel’s case itself. That led to some hard topics about end of life decisions. Based on that, I talked with Daniel about what Sandy and I discussed. It was basically part II of the hard conversation I had with him over the weekend. We don’t know how this will turn out, and I need to have these excruciating conversations with him so I know how to love him best. He kept falling asleep while writing his answers, so I couldn’t get a lot from him, but he asked me to do some research on Christian ethics and end of life decisions, which I did later that night past midnight. By the time I was emotionally and spiritually ready to sleep, it was 2am.

After only about four hours of sleep, I was up and praying again. I got a call from another Dr. who was filling in for the Dr. I wanted to speak with (the one who was suggesting the radiation), and she and I had a good conversation. I was able to explain why I felt upset about being left in the dark, and feeling like my advocate role was being dismissed. She totally understood and apologized on the other doctor’s behalf and empathized that I must be so exhausted. She confirmed what Sandy presumed about the role of the radiation, and she was also able to quell my fear about being transferred against our will. I spoke with her again when I arrived at the hospital later that morning. This wasn’t exactly how I wanted to spend the beginning of Daniel’s birthday.

So, the reason the doctors wanted the radiation consult, and apparently asked for and received an emergency appointment, is because they are concerned about the possibility of a life-threatening obstruction to Daniel’s airway from the growth of the tumor, either externally or especially internally. They wanted to know if palliative radiation would be appropriate to try and shrink the tumor just a little to help. I’ve never been a fan of radiation because of what it does to the body, often offering worse side effects than the disease itself. But Daniel and I were willing to explore the possibility and be diligent with this opportunity. I just didn’t like the way in which this whole option was presented (or not), and the fact that it would take so much of Daniel’s energy to even get there and back.

Even with all of these conversations and decisions, God gave Daniel and I a wonderful time celebrating his birthday. Daniel was awake and alert nearly all day with all of the visitors he had, which really surprised me. I was there for several hours in the morning/afternoon, while a good friend also visited for a few hours. We even played a game together, one of all of our favorite pastimes. Sure, it took a long time, what with all of the interruptions, but we persevered. Daniel won!

Later on after I went home, our church’s Board visited Daniel. They prayed for him and gave him a wonderful card with notes from the Board and Staff. A few other good friends visited in the early evening, and I got to catch the tail end of their visit when I came back after the kids were in bed at home with a sitter. God blessed us with such a good day.

Daniel’s swelling on his face had really improved overnight before his birthday, and there was still a question as to what was causing it. When Dr. S., the Dr. I spoke with earlier that day, saw him she mentioned that she wondered if it was an allergic reaction to something. I had offered that explanation to the nurse when it first appeared and thought it might be from residual chemicals from the new pillow protector that another nurse asked me to get for him. It seemed to subside when we took it off and came back when we put the protector back on (after washing it more).

Someone suggested to me to ask for Daniel to get an antihistamine to see if it would help. The Dr. didn’t follow up with anything, so the evening of Daniel’s birthday I asked the hospitalist Dr. that was on. This Dr. has never treated Daniel though he was aware of his chart. I explained my thoughts and said that for us to have an effective radiation consultation the next day, we needed to eliminate the possibility that the swelling was allergy-related (the swelling was one of the other reasons for the consult). He was convinced that it was tumor-related (the prevailing guess) and didn’t think my suggestion would do anything. I said that even if it doesn’t help, we still need to try in case. He said he didn’t want to do it. I asked in his expertise with meds, would there be any harm or interactions with what Daniel is on. He said no. So, I reiterated my reasons, adding that the most scientific thing to do is eliminate possibilities. He finally relented at that and ordered the antihistamine.

Did it help? No. In fact, on Thursday morning Daniel’s eye was swollen shut again and his face was just as swollen as a few days before. It seems to come and go. But that’s okay. At least we eliminated the possibility. Later that day, I asked the regular Dr. who’s on Daniel’s case this week what he thought, and his thoughts are it’s related to the saline Daniel has been getting the past week. Perhaps he’s getting too much. The Dr. ordered it because Daniel’s creatinine (kidney function) levels were dipping. His swelling seemed to get better when Daniel was off the saline during his fourth blood transfusion on his birthday. So, we’ll see. (By the way, this was the doctor who had a part in the consultation idea and he apologized for not at least phoning me about it).

I mentioned on Facebook that we were headed to this consultation yesterday, and a lot of you have been wondering how it went. Well, first the plan for the day was I was to meet Daniel at Ridge Meadows before ten and either ride in the ambulance or, if there wasn’t any room, drive with them. I had been told the timing the previous day. I got a text from Daniel at 8:55am saying they were on their way – an hour early! Alarmed, I asked why so early; when is the appointment? He texted back: at ten, coming home at eleven. What!?! To make matters worse, my sitter had just texted me saying she could only get to my place for ten instead of 9:30! I was on the verge of missing the consultation, rendering the whole trip useless in my mind because Daniel isn’t energetic and alert enough to ask the questions we had. Or I would have to bring the kids with me, but I still hadn’t had a chance to even get them breakfast yet! Ahhh!

I remembered that my mom was helping my sister out with her new condo which is just five minutes away, and they “happened” to be there already that morning. I called, no answer. I left a message and a few minutes later my sister called back. I explained the situation and my mom headed right over. Thanks, Mom!! She took care of the kids until my sitter arrived, and I headed to Abbotsford, 40 minutes away. I made it on time and even had a few minutes to “vent” to the nurse and RT with Daniel. They didn’t know why I hadn’t been told.

One non-communication after another. If the plans had changed, you’d think someone would have the foresight to call me to make sure I would be there. I brought these concerns up the Dr. and nurse later that evening. Hopefully it won’t happen again!

So, regarding the consult itself, we met with Dr. L whom we had met way back in April in the Abby ER, but hadn’t really had any other reason to see her because radiation wasn’t an option (at least “curatively”). So, she discussed the reasons why radiation could possibly help, and then evaluated Daniel to see if he could even physically have the procedures done. He’d have to lay flat and still for 20 minutes with no one else with him in the room. No suctioning. Yeah, not an option. That alone said it wasn’t something we should do. Also, there is no guarantee it would be at all beneficial and would only offer side effects like burning, inflammation, and pain. Plus the daily trips out to Abbotsford would sap what little energy he has. But like I said, we were diligent in exploring the possibility.

In response to the Dr. talking about impending airway obstruction, etc. I said that while we certainly know that’s a real possibility, the medical side isn’t the only side of our story. As followers of Jesus Christ, I said, we also acknowledge that God may choose to heal him, or not. Daniel’s life is in His hands.

I said thank you to the Dr. and she left. I asked the nurse and RT for a few moments with Daniel to pray (as it was a hard conversation we had). I once again asked God for wisdom and strength and mercy. I asked them to come back in to help Daniel with suctioning, and they mentioned that they were really concerned about me driving back on my own in my emotional state; about how hard it must be to have to deal with all of these things. I said I appreciated their concern, and that I wouldn’t drive until I had prayed more and asked God to give me strength. I said the beauty of the Christian faith is that it is real strength from the real God, not just a false crutch to let you limp through life. I wanted to be intentional and bold to exemplify the difference God makes in my life. May He be glorified.

So, I met Daniel back at Ridge Meadows and stayed with him while he napped for the next hour. Then I headed home to rest, pray, and listen to yet more rich sermons, allowing God’s Word to refresh me, refocus my mind, and inform the fears of the future the medical world loves to instil.

A few hours later I got the kids up from their naps to head out to Timberline Ranch’s Country Christmas event, for which I had bought tickets the week before. It was a great time and the kids really enjoyed themselves. It was tiring for sure, handling both kids on my own, but I got help here and there from the staff who are of course friends of ours too. I showed Daniel the photos and video I took later that evening when I visited him again, so he could feel a part of it. Here are a few.

 

This morning, I took the kids to visit Daddy – their first real visit in two weeks! They had fevers for five days last week and have had nasty coughs and sniffles since then, so I couldn’t bring them. I wore a mask myself during my visits, as I was fighting getting it too. Our visit was such a blessing. The kids behaved exceptionally well, so that meant it was a lot less work for me. Josiah played a game with Daddy, and then Kezia was fed her lunch by Daddy. When he was getting a little drowsy while feeding her, I asked if I could finish off. She would have none of that and refused food from me. Just Daddy! The kids had some good quality time with him, which I am so thankful for. We all missed being together!

 

  

On our way out of Daniel’s room heading home, the palliative Dr. was just heading in to talk with me so we had a short “update” talk. She asked about my thoughts about the consultation, and we talked about the pros and cons of decisions we may have to make regarding the danger of bleeding. She also mentioned that she is ordering a new IV (the week-old one had fallen out the previous day) just to have wrapped up in case of an airway obstruction leading to needing to make Daniel “comfortable.” Basically the sickening idea is that should Daniel not be able to breathe anymore because of the tumor, etc. and he was suffocating, they would give him meds so that he wouldn’t be in pain and wouldn’t care while he passed away. Yes, another very hard conversation about preparing for future fears.

I had to spend this afternoon yet again praying, reading the Bible, and listening to more sermons so I could once again put those real possibilities into perspective – and cry out for mercy again, asking that God would be willing to heal Daniel. But keep in mind (or perhaps learn for the first time), that prayer isn’t trying to change the mind of God. It’s to put us into a position to give praise and glory to God when He does what He has already decided to do which will give Him the most glory. Prayer allows us to take part in that process. Jesus told us to pray, and pray with boldness and persistence! We make requests, not to beg God for things, but to keep acknowledging that all we need comes from Him. And He is fully acquainted with our needs, has the power to give our needs to us, and has all the resources He needs to accomplish that! And He promises to give His children all we need for each moment He has purposed for our lives. Then He will take us home to heaven.

Of course, if you don’t know God and haven’t submitted to Jesus as your Master and Saviour, then you don’t have any of those promises. You do live in fear of the future; not only in this life, but for eternity. And yet, God offers you the gift of changing your future to be one spent with Him, and enjoying His promises of help and strength in trouble in this life too. It takes humility and acknowledging that you need what only He can provide – rescue from your sin. So, for those of you who don’t know Him, are you going to accept His gift while you still can?

I pray you will. To God be the glory; His will be done.