Tweaks and Bleeds

This week I have been in the process of tweaking Daniel’s diet with the dietician. Nothing happens quickly in a hospital setting, so sometimes it feels frustrating when I just want to make a change in what my own husband is eating. A lot of time researching and many conversations with the dietician and we’re still not finalized in what the changes will look like. My goal is to decrease the sugar calories Daniel is getting and replace them with calories from healthy fats. Sounds simple, but oh, so not simple in practice. Please pray for wisdom and that the changes we do make will be helpful in giving Daniel more energy and feed the cancer less.

Daniel has had significant trouble with bleeding in his mouth this week. We think it is coming from two sites: his displaced lower front teeth and the left bottom jaw. The blood loss has been concerning, especially since his body isn’t making blood at a proper rate.

The palliative nurse made a suggestion on Tuesday for a coagulating rinse, and Daniel, the doctor, and I agreed. The pharmacy, however, made a significant error and sent up the med without a dosage amount. That meant that the nurses obviously couldn’t give it to Daniel! This wasn’t corrected right away, and it took a day and a half from when it was first prescribed for Daniel to finally get his first dose. He had three more bleeds in the meantime. Now that he’s on it, he hasn’t had any more bleeds, praise God!

All of that blood loss, however, means that as I write this, Daniel is getting another transfusion tonight. His counts went dangerously low again, and he has been so very fatigued and sleepy today. The doctor saw it coming yesterday and prepared for the transfusion order. Having to put another IV in was very hard on Daniel again. He said it took another four tries to get it to work. Please pray this transfusion will once again be very helpful, and that with the coagulant, Daniel won’t have to have another transfusion.

Even amidst these challenges, Daniel was able to visit home for a short while on Wednesday afternoon! It was his first time home in nearly three months. His mouth began bleeding just before coming home, but it wasn’t a major one and we managed it alright. Friends of ours (one a nurse) picked Daniel up and drove him to our home, which allowed me to stay home and put the kids down for their nap. Daniel was very tired just from the transfer, and spent the hour home napping in his zero gravity chair in our living room. With his favorite music and the fireplace going, he was very relaxed and really enjoyed his time home. Back at the hospital, he slept solidly for the rest of the afternoon until I woke him when I visited that evening. He slept all night too. We hope to make visits home a weekly treat (if God should tarry in healing him, that is).

Daniel napping at home. (And yes, that is a Lego mosaic of us in the background that we built a few years ago).

Another highlight of the week were the times when Daniel would play his guitar and we would worship together. A few nights ago, when I arrived on his ward, I was greeted with the sound of him playing so wonderfully. I remarked to a nurse on my way to his room, “That sounds like my husband!” to which she replied, “Yes! He’s great!” Later on, we had a wonderful time of worship; he played and I sang. What a special time.

Last night, even though he was getting quite tired, he asked me to pass him his guitar. I was pretty wiped from a long day, so I didn’t sing along, but I prayed and thanked God for him. A nurse came in with a note from another nurse, requesting anything from the Beatles! She said the nurses were enjoying his playing so much! When she left, Daniel and I smiled and shrugged at each other. If you know Daniel, then you know he most certainly doesn’t know any Beatles songs. But he obliged with a song that was more rock ‘n roll. He then asked me if I had any requests. I asked for the Timberline theme song. That brought back many great memories of campfire, as I’m sure many of you reading this have as well.

So, beyond the prayer requests already mentioned, please continue to pray for full healing and recovery in God’s perfect timing, whether it be through a miracle or His special providence. We continue to strive to serve God in this season, and long for a time of refreshing and restoration if it would honour Him the most. Please pray for wisdom for the doctors, nurses, and specialists as they care for Daniel. Pray that God would continue to strengthen us through these challenging days – for Daniel and all he has to deal with physically, and for me with raising two little ones, advocating for Daniel, and managing our household.

God’s timing and will are perfect; may He get all the glory!