A Close Call

Christmas was a lovely time as a family, all things considered. I certainly didn’t have any illusions that it would be anything like a normal family Christmas, so my expectations turned out pretty realistic. Between a lot of help with the kids, and a ton of generosity from family and friends, we were very blessed. Thank you to all of you who gave gifts to the kids and made us our turkey dinner.

It was Boxing Day that was a very, very tough day. Let me take you through my Facebook status updates/prayer requests:

December 26 at 3:04pm Please pray that the major bleed right now stops. It's been fifteen minutes now. This is potentially life-threatening.

- Daniel and I were snuggling listening to a sermon, and he gave a normal cough. Then he started pointing to his neck under the tumor and I saw the blood streaming down. I ran to get his nurse. For the next twenty minutes or more she pressed hard on the area to staunch the bleeding, using towel after towel to soak up the blood. It was streaming down both sides of him on the mattress.

3:25pm Big clot under his trache but the bleeding seems to have stopped. Still precarious. He lost a lot of blood.

- A huge clot finally formed, but the risk of it dislodging were extremely high. He likely wouldn’t be able to survive another bleed like that again.

4:18pm Pray that the clot stabilizes, and that God would yet be glorified by healing him. His will be done.

- Daniel needed trache care so his breathing could be eased, but the med team couldn’t do anything about that because of the sensitivity of the clot and risk of fatal bleeding.

6:44pm They can't get the iv started. They keep losing it. His white blood cell count is up. His heart is working really hard. They want to give him the coagulant and saline to help. Need the iv.

- His arm was poked all over the place; I lost count of how many times they tried to put in an IV.

- Since the last update, I had gone home and picked up my kids and my mom, so we could meet Daniel’s mom and brother at the hospital as we were already planning to have a little Christmas gift opening. While the gifts never got opened, it was so good to have everyone there, especially because we didn’t know if Daniel would survive.

7:19pm I'll probably be staying at the hospital for the next several hours. Daniel isn't anywhere near out of the woods yet with the effects of his major bleed (see my previous status). Please keep praying as we wait expectantly for God. He is good. His will be done.

- It was hour after agonizing hour of waiting to see how things would turn out. So many people praying. Thank you.

8:22pm Daniel is still resting. They just finished with a med using a nebulizer for clotting. And another rn was finally successful with the iv. Praise God. So they'll be giving him other meds and saline in that to help.

- The nebulizer turned the medicine into a vapour that Daniel then breathed in through his trache. His lungs then absorbed the medicine into his bloodstream. The IV that was finally successful was a smaller size than what they tried before. It was all that worked. Plus, because of his fever, his skin was clammy all over which made the IV bandage not stick which only increased the risk it wouldn’t last.

9:33pm Please pray that the care for his trache they need to do will be only successful and not start more bleeding.

- This was the second hardest part of the day. The team had to do the care so Daniel could breathe better, knowing that even the most precise movements could still cause a fatal bleed. I told the nurse that there were hundreds of people praying for her and the team.

10:06pm Trache care was a success. The nurse said to thank you all for praying.

- The nurse that was leading all of this is one of our favorites. She is so devoted to Daniel’s care, even when she’s not assigned to him that shift. She extended her shift and worked 16 hours that day so she could stay with Daniel and see him through this crisis. She was back seven hours later for another shift. She’s not a Christian.

10:34pm The plan is to give him a unit of blood. It's a fine line. Too much fluid and it could cause pressure on the clot and make it open. Too little blood and his heart will become exhausted.

Please keep praying for wisdom and healing, and above all that God's will would be done and He would get all the glory.

- Daniel’s nurse said later that she was actually amazed that the small sized IV worked with the transfusion. Another answer to prayer. She also said she expected Daniel to lose pulse in his feet, but she could still detect it and that was very encouraging.

- Thank you to Sandy for coming and supporting Daniel and I through this hard time!

11:53pm I'm home now. Daniel is feeling more alert. Sandy said he is as stable as he can get. So, I'm home to sleep and regain my strength.

- It was an incredibly trying day, filled with intense prayer and constant vigilance over Daniel. Once Sandy came, I was finally comfortable to eat a little (I was weak with my “natural fasting”), and was just utterly spent.

- Daniel was already recovering well. He was alert, no fever, and was even using an oral syringe to put some ice water in his mouth to help him feel better.

December 27 at 1:44pm Daniel is feeling better. Thank you for praying. Keep praying for strength and that God would be glorified, that He would heal Daniel.

- Dec. 27 is our anniversary. Six years. During so much of the previous day it seemed hard to believe he would live to see this day. That evening, we watched our wedding DVD. It’s been such a long road, that it was so nice, though bittersweet, to see and remember how Daniel used to be. Yes, that’s how hard this road has been and continues to be. Daniel hasn’t spoken since May, and not normally since January’s biopsy. But nor do I want to dwell on how things used to be because I need to able to cope with the now so I can serve Daniel where he is at now. 

Some have asked, why did it bleed? It’s because the grapefruit-sized tumor on his jaw/neck, as well as the smaller lesions surrounding it on both sides, is just open tumor, no skin. It’s awful. And the way cancer works is it throws out blood vessels in front of it to feed itself. The tumor is a random mass of anatomy – an awful effect of a fallen and sin-filled world. God’s wonderful mechanisms run amok.

So, since then the medical team has been working on getting Daniel’s levels back to his normal. He received another three units of blood today. This morning I met yet another new hospitalist doctor who has Daniel this week. With each new face we encounter, I view it as another opportunity to briefly share our faith and perspective, trusting God will use it for His glory.  

Thank you to all who kept vigil over Facebook and prayed incessantly for Daniel and I. Your prayers did and do make a difference. Please pray for Daniel’s cough, as the irritation in his trachea can not only be bothersome, but can be painful and as we’ve seen, cause extreme complications. Pray for continued strength, peace, protection, provision, and joy. God knows what He is doing, and He is faithful and will sustain us through whatever He allows us to endure, for His glory and our ultimate good. And please continue to pray for full healing and restoration, not only for Daniel’s sake and our family’s, but for the sake of so many unbelievers connected near and far, that they would see God’s mighty power displayed and believe.

To God be the glory; His will be done.

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.

Harder still

Daniel seems to keep getting more challenges to deal with, like fluid retention in his face that the Dr is saying is the tumor preventing proper circulation. This morning the left side of his face was so swollen his eye is swollen shut now. Also, the tumorous lesion is growing around his trache opening making it more difficult to clear the mucus and put the dressings on well.

Apparently there will be another family meeting next week. I've already had a few hard conversations over the phone with a few of his doctors this last week.

So, in light of that, I talked over what the Drs. were telling me with Daniel last night. It was a really hard conversation because we don't know what God will do so we need to be diligent and prepare for either outcome.

I'm still having a hard time with it though. I'm praying so much but still feeling extremely overwhelmed by reality and my responsibilities. Reading the Word to fight fear. It's so hard though. Crying out for mercy for Daniel and our family, but also knowing God knows what He's doing.

Again, no amount of time or suffering affects God's ability to heal Daniel. Please pray for strength, wisdom, comfort, joy, mercy, and that God would be glorfied above all else. Please pray that Daniel would be given many more years to live for Christ, and that the wonderful gift of eternity with Jesus would be deferred a little while longer.

On Tuesday we had a chance to enjoy the brief mild weather and sit outside for a while. 

This morning, with the swelling. 

Thank you so much for your prayers. 

Some prayer requests

It's been a hectic and tiring few days. Both kids have fevers and are feeling pretty low, or when one is feeling okay the other one is crying from misery. I'm getting sick myself and trying to fight it off. I can't bring the kids to visit daddy, and I have to wear a mask myself. It's yet another level of exhaustion.

So, please pray for a quick recovery for all of us at home, and of course for a full healing and recovery for Daniel if that is what would glorify God the most.

Daniel had another minor bleed on Monday followed by a major bleed the next day, the first from his mouth, the second from his lesion during a dressing change. Bleeding for him is easily potentially life-threatening, and something the doctors have worried about for a long time.

He already needed another transfusion last week and more pamidronate, and now he is getting low on hemoglobin again, and a new IV was started yesterday for more pamidronate again. In these regards, it feels like we're trying to fill up a leaking bucket, and we need God to step in to bring healing and resolution. Please pray for these things.

Also, around Daniel's left eye is puffy, so please pray that will recede. We don't know why but wonder if it might be from the new pillow protector we used last night on his special pillow from home (to make it easier to keep clean). He sleeps on that side.

Well, I need to go. My four year old is screaming and crying.

The One About Faith

(From Evelyn):

I find myself today just trying to rest and unwind from the busyness of last week. It was a lot of extra work on top of all the things I need to take care of. Between coordinating Daniel’s care, preparing his blended meals in the gap between shipments, picking up and delivering his packaged blends while taking the kids for a visit, plus more, it was a lot to do.

I’ve been wanting to write this blog post for what seems like a long time. I hope you’ll enter into what God has been teaching me.

What I’ve Been Reading and Listening To

Over the past several days, God has been teaching me more about faith and prayer. I’ve been learning about faith, miracles, and how they fit into the Christian worldview more precisely from Eric Metaxas’ book, Miracles. In the first third of his book, Metaxas writes about the more academic arguments for miracles, past and present. The last two thirds are actual miracle stories from either the author’s personal experience or from friends whom he trusts and verified details. He said he could have included a lot more stories if he had the space and chose stories from friends of friends.

Also, while I was preparing Daniel’s meds and meals especially, I spent a lot of time listening to and reflecting on a particular sermon from John MacArthur, “The Power of Faith” based on Matthew 17:14-21. This is the passage in the Amplified version:

¹⁴ And when they approached the multitude, a man came up to Him, kneeling before Him and saying, ¹⁵ Lord, do pity and have mercy on my son, for he has epilepsy (is ^[a]moonstruck) and he suffers terribly; for frequently he falls into the fire and many times into the water. ¹⁶ And I brought him to Your disciples, and they were not able to cure him.

¹⁷ And Jesus answered, O you unbelieving (^[b]warped, wayward, rebellious) and ^[c]thoroughly perverse generation! How long am I to remain with you? How long am I to bear with you? Bring him here to Me. ¹⁸ And Jesus rebuked the demon, and it came out of him, and the boy was cured instantly.

¹⁹ Then the disciples came to Jesus and asked privately, Why could we not drive it out? ²⁰ He said to them, Because of the littleness of your faith [that is, your lack of ^[d]firmly relying trust]. For truly I say to you, if you have faith [^[e]that is living] like a grain of mustard seed, you can say to this mountain, Move from here to yonder place, and it will move; and nothing will be impossible to you. ^21 [f]But this kind does not go out except by prayer and fasting.[i]

What I’ve Been Learning

Miracles

Reading about the modern day, vetted stories of how God is doing the miraculous in the lives of His people was so very encouraging. You can’t just do a Google search on miracle stories and expect to read the truth. That is why I was excited to learn that Eric Metaxas wrote this book – because I knew he is very careful with the facts (he wrote two very popular biographies on William Wilberforce and Dietrich Bonhoeffer). He didn’t want to write this book at first, but the non-Christian editor who wanted the book said he’d get someone else to write it if he didn’t because the editor was adamant the time was ripe for this kind of book. At that point, Metaxas said he had to write it because whoever else might write about miracles might take a very New Age approach to it. He wanted to take a very biblical approach to the subject matter, but in a way that isn’t just written to Christians. Anyone can interact with his book.

One of my favorite concepts in Metaxas’ book comes at the beginning of his section on healing miracles:

The Bible says clearly that God wants us to ask him for help when we need it, and it is clear that asking for healing when we are sick is part of that. Whether he heals us is another story, but if we don’t ask for it, we are preempting the very possibility that it might happen. So we should ask.

I really appreciated his emphasis on the extent of our role in miracles – having faith and asking God – but also knowing that a miracle is ultimately up to God. I also liked how Metaxas didn’t write the stories in isolation, but gave the context and how God then used the individuals by giving the reader a glimpse of the purpose of the miracle.

Faith

As an aside, we need to differentiate between biblical faith and counterfeits. It’s not the type of “name it and claim it” bad theology where one thinks he or she has the power of creation in one’s very words. Only God has that power. Acknowledging and being reminded of a promise of God by talking about it is one thing (and a very good thing to do), but “claiming” it by speaking certain words to somehow mystically make it real is just not supported in the Bible.

Our prayers are only effective because of the God to Whom we pray, not because of the actual words we utter. Our God is not some impersonal force in the universe that we must cajole and manipulate with our words and thoughts to get what we want. He is a magnificent, personal Being Who is both holy and loving, and longs to be in relationship with us; but on His terms, frankly, because He’s God. Please be careful not to allow ancient paganism and New Age, The Secret type practices into your doctrine.

The Mustard Seed

In the passage on which John MacArthur preached (and its parallel passages in Mark and Luke), nine of the disciples aren’t able to cast a demon out of an epileptic boy. Jesus returns from the Mount of Transfiguration with the other three disciples and encounters a crowd of people – the disciples, the boy’s father, sneering scribes, and onlookers. Jesus instantly heals the boy, but not without substantial frustration at His disciples’ little faith.

In private, the disciples are bewildered why they couldn’t heal the boy when they had been given the power to heal and cast out demons earlier. This time it didn’t work, and they probably tried several times! Jesus responds by saying that their faith was too little – or short-lived. They gave up too soon. In John MacArthur’s words:

Little faith is the kind of faith that believes in God when you have something in your hand. Got it? Oh yes, I believe God. Oh yes, the Lord provides. Here it is and I'm hanging on to it. That's little faith. But little faith can't believe God when it doesn't have in hand its resource, that's little faith. Great faith says I believe God without anything in my hand. I believe God in the middle of the storm. I believe God though [the] wind is howling.

In other words, Jesus gave them a harder test, a miracle that required from them persistent prayer. The first miracles that they were empowered to do came instantly, but that takes very little faith. Jesus wanted to start “weaning” them off of Him in preparation for His physical absence. MacArthur says:

What the disciples should have done when they didn't heal the man the first, second or third time, was to keep on praying and keep on trusting and keep on believing God till their persistent prayer broke through and reached its point where God wanted them to learn, and then God would have responded. It isn't that they had to batter down heaven to get His attention, it is that God knew exactly what He was going to do but He withheld it in order that they might continue to stretch their faith.

Even though we as Christians today don’t have the apostolic gift of healing that the Apostles had (which was to verify their words and witness as genuinely coming from God), Jesus’ principle of faith like a mustard seed is incredibly applicable to us today. But the problem is so many people misinterpret the point of the mustard seed. The average faith healer today will tell you you just need to have “enough faith,” in some subjective, baseless quantity of feeling.

That is not what Jesus is talking about. Earlier in Matthew 13:31, Jesus talks about how even though a mustard seed is the smallest of seeds (that they had in that region), it grows to be a plant large enough for birds to rest in its branches. Did you catch the point? It’s not the size that the seed starts from, but the fact that it grows! Jesus is telling us that faith is only real and effective if it grows.

But how does our faith grow? Well, that’s where trials and suffering come in, and not just trials that have an immediate resolution. MacArthur says,

I believe there are many things that God desires for you to experience in your life that God desires to accomplish in your life that are available to you through the exercise of His divine power. But that power will never be tapped until you have the faith that starts small. And when it meets with resistance and when you don't see it happen, the faith doesn't die small, it gets larger and larger and larger. And you continue persistently in prayer… He wants you to persist in prayer because that's the extension of your faith. You see, if you just said, "God, I want this..." (snap) you've got it...you'd never learn [to strengthen] your faith. You'd never be ready for the trial, would you? And so the Lord asks us to persist and persist.

A Few Final Notes on Matthew

Regarding the “mountain” that Jesus is referring to, it is clear from the context Jesus was speaking figuratively as teachers in His day often did when speaking of moving mountains. He is talking about a seemingly insurmountable problem.

And as far as “nothing is impossible,” in the context of Matthew the disciples were promised to be able to heal, and so it would be possible for them. MacArthur says, “It's only possible, first of all, if it's within the framework of God's will and God's promise.” For us, the principle still rings true. Promises that God has made to His Church in this age will not be impossible if we persist in prayer.

The sticking point is that so many Christians (my past self included) take promises from the Bible that were made to other people in other times that weren’t meant to apply to them and say that they “claim” that promise. But that’s another topic for another day. Watch this video and read this article for a fuller explanation. There are PLENTY of promises God has made to us, His Church, without us having to steal promises from others and end up disappointed and alienated.

How Enduring is Our Faith Really?

Wow, so that’s a lot of theological ground to cover. You may be wondering, ‘So what? Why did you make me read all of that?’ Well, there are a few main lessons I want to relate to what Daniel and I are going through, and how you participate in this with us.

Based on the undeniable fact that God still does miracles today – He still intervenes and injects His creative and restorative power into our broken world – we can expect to see God do miracles in the future. So, why is it so hard to pray for them and actually believe that God could do something miraculous?

I think it’s clear from the passage in Matthew that many times we allow our faith to be stopped too soon. Remember, it’s not that we need to somehow manufacture some subjective feeling of “belief” or “positive thinking” or “good energy” and just try to keep going. That’s not the faith of the Bible. We need to remember Who it is we put our faith in, and we only know that from studying the wonderful gift of God’s Word to us. The faith Jesus is calling us to have will start small, but as long as it’s based on the true Source of faith, it can grow and get stronger. Real faith starts when human resources stop.

God has been showing me how He has been growing my own faith during the past eight months. It is only through this extreme trial that God could have instilled in my soul and mind the degree of understanding of what true faith in Him looks like. If God had healed Daniel right away, I wouldn’t have the strength of faith I do now. To Him be the glory.

What about you? Did your faith quit when you prayed earnestly for Daniel that first week after he was diagnosed and he wasn’t healed? The first month? Six months? Does time have the power to kill your faith in God’s ability to heal?

What about the severity of Daniel’s suffering? Has that killed your faith? Is your faith still intact knowing that his weight has further dwindled down to 103 lbs.? That he has an open lesion the size of an apple on the side of his face and several smaller ones? That the tumor is growing out of his mouth and he lost another half a tooth this week? That it’s a near constant job for him sucking out mucus from his nose, mouth, and trache, plus managing the necrosis from his lesions?

I don’t want your prayers and your faith to be ignorant of what Daniel goes through. It’s horrible and heartbreaking. My stomach is in knots even having to write all of that. Do you still have faith that God can and may heal all of that? Do you really?

We do.

Through many hours spent in fervent prayer and reading the Bible, God has strengthened our faith. By His mercy, we refuse to let any symptom, suffering, crisis, or even seeming delay replace our faith with despair and fear. Has our faith wavered? You bet! And it’s in those moments that we have to immerse ourselves in more Scripture and spend more time crying out to God in agony and desperation. We take comfort that God can handle our emotion; after all, He created us that way. We need to intentionally remind ourselves of the truth we know and the character of the God with which we have entrusted our earthly lives and eternity. Plus, the blessing of Daniel’s type of cancer is that it is incredibly visible – as in, it will be undeniable that God healed him should He choose to.

Why “Stringy?”

A long time friend of Daniel from Timberline Ranch recently shared her struggle with the question, “Why Stringy?” – Daniel’s camp name (no, he didn’t pick it, but now after 22 years it’s just a part of him). Why does Stringy have to go through all of this suffering when he’s been so faithful in serving God?

The answer I gave her surprised her and she asked me to share this on the blog. I said that, yes, I have asked that question, but I haven’t dwelt on it. The reason is because God in His mercy has shown me the obvious answer.

It had to be Stringy. In all of the ways God is moving (and God has only given us a glimpse of that, which is still amazing), these things could have only occurred because of the connections Daniel has and those people’s connections, because of the legacy of ministry God has given Daniel, because of how God has been preparing Daniel for this season. And it is only because of the utter severity of Daniel’s suffering and that of our family that so many are taking notice.

God is actively mobilizing His Church to do what He designed it to do, as well as giving unbelievers a picture of Who He is because of what we are going through. Daniel wouldn’t have the ministry in the hospital he has if he wasn’t sick.

Does that make it easy? Oh…no. Every single day is a battle and struggle to take each next step, whatever the challenge may be for him and I. But because of our faith in the one, true God, we know our struggle is not in vain. We trust God for His sustaining mercy, remain diligent in doing the tasks and fulfilling the responsibilities He has given us, and then we trust Him for the results.

In the sermon at our church on Sunday, the guest speaker, Jason Ballard, asked the question why we don’t pray more for miracles. He wondered if it was because people think it would make God look bad if nothing happened. I like how he assured us that God doesn’t need help in the PR (Public Relations) department. He can take care of Himself.

A Question for You

There are hundreds of people reading this blog, most we know but many, many we do not. Within that number, there is bound to be a wide variety of beliefs, worldviews, and ranges of faith – from having none to little to enduring.

What type of blog reader are you? Maybe you started out faithful and hopeful back in April before things got really bad. But the degree of suffering and length of time has destroyed your faith. Now you’re just reading out of a morbid curiosity, to see how things (what you think) will inevitably end; just rubber-necking in the blogosphere.

Or perhaps you’re one of the many who wants to have stronger faith but seems to just be beaten down by the harsh reality and suffering. You’re struggling to truly believe God can do what He says He can do. Take heart, there is an antidote to little faith. Persist in prayer. Read what God has to say about Himself.

And we know there are many reading our blog who join with us in tenacious faith, and continue to pray for Daniel to be fully healed and restored. You have learned through your own life’s struggles how God is so faithful and can do all and more than we ask or even imagine. We find it so incredibly encouraging when people respond with such genuine, enduring faith that Daniel could and even will be healed. 

Final Thoughts

First, I want to thank you for making it this far. I knew this post would turn into quite a long one, and I hope and pray it has been a blessing to you. I have been prompted by the Holy Spirit to express my thoughts on what He has been teaching me, and I hope that I have not gotten in the way of what God may want to teach you. If there are things you would like to dialogue further about, rather than leaving a comment and risk the online tendency of being misunderstood, I invite you to contact me and let’s arrange an afternoon where we can sit and chat over tea.

Second, we have been and continue to be so very blessed by God’s people – even strangers – who have been faithful to the prompting of the Holy Spirit in their lives to give of their time, talents, and treasures. Thank you for continuing to support us both practically and in prayer as we wait expectantly for God’s miracle. To Him be all the glory! His will be done.

---

[i] The ending of the passage, “But this kind does not go out except by prayer and fasting,” is in italics because it’s not original to Matthew, but comes from Mark, and the “fasting” part isn’t in the earliest manuscripts, so it should read, “But this kind does not go out except by prayer.”

Stale or fresh

(From Daniel):

Who would like old, stale food? Not me, I would want my food to be fresh. Well, this week the company from which we order my good blended food messed up the order, and because of the US long weekend, it leaves me three days short of food. Instead of eating the hospital "bag-O-nonfood," Evelyn has and will be making fresh real food for me. I had it for breakfast today at 6am and I've felt so good this morning. 

Lamentations 3:22-23 ESV (read all of chapter three):

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness."

Every day God gives us His fresh buffet of His steadfast love and mercies that will not end. Yes, great is Your faithfulness, my God. 

More prayer requests:
Complete healing
Bed sores
Weight gain (there were days last week I could not keep the food in me for long)
Evelyn and family

Thank you for your prayers and support. It means so much to us to know you're praying for us.

Daniel 

What's "normal" anyway?

(From Daniel):

It's so nice to have my family come visit. I enjoyed feeding Kezia lunch. A little bit of the old normal.

 

I have a possible infected IV site, and it hurts. It's worse than the last one. So I'm going on antibiotics and going for oral rather than a new IV.  It will probably take longer though. The IV site before had a small infection, and it on average takes three painful tries to start a new IV. It brings me to tears just thinking about it. I'm thankful that I don't need one now. The doctor also reduced how often I get blood work. I'm thankful for this as well. And I'm so thankful that my nausea is gone. 

I want to make the most of whatever time God has given me. So, do I wait for better circumstances? No, I'm going to do the best I can with what health God provides. I do not know what comes tomorrow; that's in God's hands. My goal is to serve Him the best I can today. 

More prayer requests for us both:
- Strength
- Sleep
- Wisdom with decisions
- We miss each other a lot and doing family life together.
- Bed sore heals (Dan only)

Thank you for your prayers and support. It means so much to us to know you're praying for us.

Daniel  

(From Evelyn):

Over the past week, we have been trying to tackle Daniel's nausea, still not knowing what was causing it. It seems to have largely abated now, and he has switched from the IV anti-nausea med to the oral version.

Then the bed sore appeared because Daniel was mostly bedridden for three days last week after the throwing-up episode. While we are thankful that that is the first sore he's gotten all this time, it is still concerning. Daniel is treating it naturally with a few things, so please pray they are effective and that the tissue heals without getting worse. It has already gotten better in the past few days, so we are very thankful for that. 

I also suggested to Daniel that he start on another complementary supplement which I was just told about last week. After doing a lot of research and reading many journal paper abstracts, I brought it up to the doctor, who was very open to it. This supplement, fulvic and humic acid, can potentially do a lot. We're just going to see if and what God wants to do through it. The results, as with EVERYTHING we're doing, are always up to Him! Please pray God will choose to use it to improve Daniel's immune system, blood system, and digestive system. As with a lot of natural supplements, because they generally don't override the body's systems (like drugs do), but instead they support the body's processes, seeing improvements can take a while. Please also pray God will continue to sustain Daniel through this. 

Our goal is to be diligent with the wisdom and resources God gives us. What He chooses to do with them is up to Him. I wish I could do more. But I need to be where I am -- in a place of intimate dependence on God. His will be done, and may He be glorified. 

The past several days, I've been reading and reflecting -- and praying -- through the Gospel of Mark. Jesus' character and power is so amazingly on display. (What a gift that God has given us not one, but FOUR, accounts of Jesus' life and ministry). To be honest, I've never been so keenly interested in the healing accounts. And while they don't hold any prescriptive power or promise (it's not that type of genre), they do tell us that Jesus is a God of compassion, and mercy, and grace. That is Whom we serve and seek to glorify, and we continue to boldly, yet humbly, make our requests of healing known to Him in our dire circumstances. Please continue to join with us, and let God change you in the process too.

Evelyn

Update on past days.

(From Daniel):

Each day is a gift from God, and I will praise Him for who He is and what He has done, no matter how the day goes.

Well, yesterday was a challenging day. I was throwing up through my mouth and nose. My mouth started bleeding because of the trauma too.

My old IV site was infected and couldn't be used. The new one took three tries. The third try was with a larger needle on the inside of my forearm.

I was blessed by God to have my wife, Evelyn, there. She is not often here at that time of day.  She was so helpful holding my hand and singing songs of dependence on God.

We needed the IV for a new medication to help with the nausea, as well as another dose of the pamidronate. Pray the new IV lasts a long time and does not get infected and that the new medication will work.

Today was a much better day. We are working on getting me back on schedule with my tube feeds. I had to skip a few meals yesterday because of how bad I felt.

I am trusting God with each step. This is hard, but I will not fear for He is with me.

Thank you for your prayers.

Daniel

God is in control

(From Daniel): 

Today is a new day that God has made; I will rejoice and be glad in it. I have been growing in my thankfulness for life. Our lives could be long or short here on earth but our lives don't end here. Our time here is like a dot on a page, and eternity is an unending line. What do we live for -- the dot or the line? This idea is from the great book, "The Treasure Principle," by Randy Alcorn. 

 - Matthew 6:19-21 NASB

  19  “Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal.   20  But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal;   21  for where your treasure is, there your heart will be also."

I'm continuing to change my thinking of "I wish I could...eat and taste food, live with my family, not be in pain, be well again, etc." to thank you God for all the time you gave me to have or do these things. Every day is a challenge to do this and to remember. It's a good thing that being a Christian isn't about me and my ability to perform. It's all about God doing the work in me and working on making me become more Christ-like in the process. And all through this, still praying for healing and for endurance for each day. 

 - Job 1:20-22 NASB

  20  "Then Job arose and tore his robe and shaved his head, and he fell to the ground and worshiped.   21  He said,
'Naked I came from my mother's womb,
And naked I shall return there.
The LORD gave and the LORD has taken away.
Blessed be the name of the LORD.'
  22  Through all this Job did not sin nor did he blame God."

I feel tired and worn. This has been the hardest year of my life. So many hardships and trials. Through all of this I have been given strength and courage by God for each day. His faithfulness we can trust. 

I'm planning to go home to visit this Sunday, and I'm looking forward to this. Pray I have the strength.

Thank you for your prayers.

Daniel 

 Evelyn and Kezia visited today while Josiah was treated by some friends to a fun day at a soccer game.

Another visit home and a good conversation

Last Friday, Daniel had a great visit at home. He had the strength to even get dressed in "normal" clothes, and stay at home for two hours. In amongst a lot of resting, he was even able to climb the stairs so he could rest in bed. The kids really enjoyed Daddy's visit. I've never seen Kezia snuggle so long with anyone, and without squirming at all!

Sure, the visit tired him out, but being in the morning -- when he has the most energy -- helped out a lot. He wasn't as dead-tired for the rest of day like the first visit. Praise God for these blessings!

As far as the medical side of things, Daniel needed another dose of the pamidronate for the hypercalcemia, but hasn't needed another transfusion, despite several small bleeds. He did need a new lancing today on the other side of his throat. It seems the area is still swelling larger very slowly. This is discouraging, but God knows what is going on on the tiniest molecular level. We choose to trust Him!

We had a particularly meaningful conversation with Daniel's nurse yesterday evening. I've spoken with her before at length about Daniel's care and treatment plan, what with all of its unconventionality. She was adamant that everyone who has a g-tube should be on what Daniel is eating, and everyone in general should be given fresh food, not canned and processed remnants. That's when they need the best food the most, she said.

She said in her 14 years as a nurse, she has never seen someone like Daniel and I take responsibility and advocate for ourselves. No, our plan certainly does not come cheap, but by God's grace and amazing provision, we have no worries right now. And the nurse said how much better Daniel is doing than others on the ward who don't have such a serious condition, and who won't or can't walk because of the pharmaceutical pain meds and lack of nutritious food.

I'm not casting blame here -- please don't misunderstand me; all I'm saying is that the healthcare system, when it really comes down to it, is all about economics. The individuals, however, the doctors and nurses, etc., are the wonderful personal side of that system. They do their jobs amazingly, by and large. And we are so very thankful to have universal healthcare and not have to pay a fortune for all of the care Daniel needs. But the underlying bureaucracy is the impersonal numbers game.

That's why you'll never see the things Daniel and I are using covered by medical. We spend over $100 a day on his meds, food, and supplements. I hate having to spend that kind of money (as we're both so frugal) but it's so very worth it -- look how well he's otherwise doing. I told the nurse that we have been so blessed by God through friends, family, and strangers, and are striving to be diligent with the wisdom and funds God has given us to make the best choices. The results, I said, are up to God, because the point of life isn't to be happy and healthy, necessarily, but to bring glory to God. And that is what we're trying to do.

The nurse started to get choked up when she reflected on how Daniel's situation is affecting the nurses. Given our situation, our young age and young kids, and the severity of Daniel's illness, it's hard on them, though she said, granted it's nowhere near the same intensity as it is for us. But we got a window into what God is doing in the care team. Please pray that God's purposes would be seen in those individuals who do all of the work to care for Daniel day by day. We only have this ministry opportunity because Daniel is so sick.

Our prayer is that God would display His power in an amazing, unmistakeable, miraculous way by healing Daniel, and in doing so would confront the individuals on the care team with His existence and His claim on their lives too; building the faith of those who know Him already, and breaking down barriers built by those who don't truly know God.

We are thankful for what we see God doing in our own lives and in others. That gives us joy despite all of the pain. All the same, we cry out to God that He would finish with His purposes in this season soon and bring healing and restoration. Please continue to join with us in prayer. Thank you so much.

May God be glorified.

Busy days and times flies, yet it still seems to drag along.

Wow, it's already been almost two weeks since my last post. Yeah, the time gets away from me when so much needs to get done. My days have been packed with caring for the kids and our home, coordinating with Daniel's care team, preparing his meds, making his food (more on that in a bit), and spending every chance I can get with him at the hospital. Thanks to my wonderful child care coordinator,  I'm at the hospital one to three times a day,  bringing the kids with me several times a week.

Since the transfusion a few weeks ago (I already mentioned this second one), Daniel's hemoglobin levels have improved. The transfusion brought him from 73 to 103, and then his body brought him up to 112. This is great news! He hasn't needed another since. Any bleeds have been sporadic and fairly minor, praise God. The coagulant seems to be working well still.

Daniel's days are spent getting as much sleep as he can (and sleep has been pretty good), managing mucus from his trache, mouth, and nose with suction (as he can't swallow it), and trying to exercise a bit every day. I got us both new (to us) smartphones and plans so that allows him to be more connected with more data allowances; he's enjoying listening to his podcasts and favorite preachers again.

We're going to try for another home visit tomorrow (the second) depending on how Daniel is feeling. He has been more tired lately. Please pray that this can work out for everyone.

On Sunday, Daniel texted me saying that the nurse said his prepackaged blended food was running low and that he only had two days left! That caught me by surprise as it didn't seem like that long ago when I had checked and he still had several boxes left. We don't want him having the hospital blend as it's mostly sugar and chemicals, so I quickly ordered some more from the States. It usually arrives in a few days but I didn't hear anything. So, after contacting the company and having them make sure it would arrive asap, I still ended up having to make a few days' worth of food for Daniel. This caused a lot of nervousness for the dieticians, so there were several conversations and much time was spent trying to coordinate this temporary solution.

So yes, it's been a busy week. But I have the shipment now and will be delivering it to Daniel this evening (thanks, Leanne C.!).

Big picture, we're still waiting to see progress against the cancer. Daniel lost a tooth last week. It was uprooted by the tumor in his lower jaw. That is where the bleeding has mostly come from. Other teeth are vulnerable too still.

I mentioned to Daniel yesterday how it feels to me like it seems it was a lifetime ago when we had a normal,  disease-free life. This season has just dragged on and on. He heartily agreed.

We know that if God has plans for Daniel still, then nothing can stop Him from fulfilling those plans. Not cancer, and not any of its effects. From our perspective, Daniel still has so much to do to serve the Lord, as a father, husband, manager and campfire leader at Timberline, etc. We don't have the sense or peace that his service is done (though, granted, feelings are of limited value in things like this as they are so fickle). So, we will continue to pray faithfully and fervently, all in the context of knowing that God is sovereign and He definitely knows what He is doing. Please continue to pray with us and for us for a miracle -- we long to see you all give thanks with us for God's mercy and deliverance!

The following passage has been very encouraging for me the past few days. I encourage you to read through it all and reflect on how dire Paul's circumstances were (though we don't know what they were), and how God came through for him for His glory. No, it's not a promise per se, but it does tell us about the God Whom we serve, and encourages us to pray for the (otherwise) impossible.


2 Cor. 1:3-11 (AMP)

3 Blessed be the God and Father of our Lord Jesus Christ, the Father of sympathy (pity and mercy) and the God [Who is the Source] of every comfort (consolation and encouragement),

4 Who comforts (consoles and encourages) us in every trouble (calamity and affliction), so that we may also be able to comfort (console and encourage) those who are in any kind of trouble or distress, with the comfort (consolation and encouragement) with which we ourselves are comforted (consoled and encouraged) by God.

5 For just as Christ's [own] sufferings fall to our lot [as they overflow upon His disciples, and we share and experience them] abundantly, so through Christ comfort (consolation and encouragement) is also [shared and experienced] abundantly by us.

6 But if we are troubled (afflicted and distressed), it is for your comfort (consolation and encouragement) and [for your] salvation; and if we are comforted (consoled and encouraged), it is for your comfort (consolation and encouragement), which works [in you] when you patiently endure the same evils (misfortunes and calamities) that we also suffer and undergo.

7 And our hope for you [our joyful and confident expectation of good for you] is ever unwavering (assured and unshaken); for we know that just as you share and are partners in [our] sufferings and calamities, you also share and are partners in [our] comfort (consolation and encouragement).

8 For we do not want you to be uninformed, brethren, about the affliction and oppressing distress which befell us in [the province of] Asia, how we were so utterly and unbearably weighed down and crushed that we despaired even of life [itself].

9 Indeed, we felt within ourselves that we had received the [very] sentence of death, but that was to keep us from trusting in and depending on ourselves instead of on God Who raises the dead.

10 [For it is He] Who rescued and saved us from such a perilous death, and He will still rescue and save us; in and on Him we have set our hope (our joyful and confident expectation) that He will again deliver us [from danger and destruction and draw us to Himself],

11 While you also cooperate by your prayers for us [helping and laboring together with us]. Thus [the lips of] many persons [turned toward God will eventually] give thanks on our behalf for the grace (the blessing of deliverance) granted us at the request of the many who have prayed.

Thank you, family and friends, for continuing to pray for us. May God get all the glory.

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!