Quick Update

I just wanted to give you a quick update. Thank you for continuing to follow our story and praying for us.

- Daniel hasn't had any bleeds during the past week or so. This is a big answer to prayer. So, he hasn't needed any more transfusions or pamidronate, though I don't know what this week's levels have been.

- The IV issue has largely abated; another answer to prayer. A nurse suggested a product that numbs the IV site when they need to poke him, and this has really helped. His current IV has lasted quite a while -- over a week I think. The nurses are keeping it "live" with a saline drip between his tranexamic acid (blood coagulant), but that may be causing another issue...

- The swelling in his face has worsened and his right leg has seen some swelling. The leg is looking a bit better yesterday and today as he is keeping it elevated. His face though has gotten quite bad, and it may cause his other eye to swell shut too. Please pray this doesn't happen and that overall his body would be able to manage the fluid better. The issue is most likely the tumour restricting circulation.

- Daniel's pain with his bowels has gotten a lot better, praise God. The nurses have been able to manage that symptom pretty well, and the adjustment in his afternoon meal seems to have helped too.

- It's been more tricky lately with Daniel's trache attachment. The tumour continues to grow and seems to be heading towards causing his "T" piece (which connects the oxygenated air) to not want to stay on as well. It's not like you can just force it on; it would cause a lot of pain and most likely bleeding. If he moves his arms to adjust his ice pack or face cloth (he is always too warm because the tumour and dressing act as a giant scarf), the attachment comes off really easily. The nurses and RT's have tried a few different ideas. We're still trying to find the one that works best. Please pray the tumour wouldn't interfere anymore!

- Daniel has been very fatigued again. He had relatively more alertness for a few days earlier this week, which was great, but the past few days he is mostly just able to sleep and rest. His energy goes towards clearing his airway, managing his secretions, and just taking care of little things for his own comfort. He isn't texting, and barely has the energy to give basic sign language. Please pray he would get the rest he needs and be able to interact more.

- I've brought the kids nearly every day during the past week and a half. They are handling the visits very well. I explain that Daddy is just sleepy but that he loves having them there. Josiah happily colors and I keep Kezia content with rice puffs as she sits on Daddy's bed. It's still a lot of work though for me, so please pray for the strength and energy I need to make these visits happen. We love being together. It's extra time for me to hold my best friend's hand. That alone makes all the work worth it. I'm still there every evening too, and I have a few day time sitters -- thank you to all who are helping out!!

So, yes, we are still just trying to get through every day. We continue to rely upon God's strength and mercies. God has us all in suspense, doesn't He? We wait with hope and expectation to see what He has chosen to do. And amazingly our prayers play a part in that -- He uses our prayers as a means to His predetermined ends, so that we can get our wills in line with His and praise Him when He answers and displays the various facets of His character. What an honour it is to participate with the almighty God of the universe in His intricate plans. To Him be the glory; His will be done.

A generously answered prayer

Since my last update, Daniel has continued to be very fatigued. Today he was able to be more alert and write more clearly, but overall his energy levels are very low. He is still accepting his meals well, though today the palliative Dr. and us discussed some bowel issues Daniel is having, and we decided to reduce one of his meals to a snack. Please pray the sharp, intense pain he is experiencing in this regard will be alleviated. Otherwise, Daniel's blood levels seem to be pretty stable, last I heard. Definitely helpful.

On the 30th, during that medium-level bleed Daniel had that I mentioned last update, his phone got scooped up into all the bloody laundry and lost. We have no idea if we'll see it again, and I've been told it can take months to find and then process the paperwork. When the nurse told me the day after it happened, while I was surprised, reflecting back, I actually wasn't as upset as I normally would be. I wasn't upset at all! Even though it's an expensive phone and it took me a lot of work to get for Daniel (for the price I did get it for), after talking with the nurse, I went into Daniel's room and prayed, "Well, Lord, if you want us to get it back, You can make it happen." When I learned there was a form I needed to fill out, I did that. I told the unit clerk my concerns, and she said she would ask the social worker to help when she was in the next day. Otherwise, there was nothing I could do. The hardest part was that Daniel didn't have a way to connect with the outside world, and I didn't want him feeling isolated. I gave that to God, and left it there.

On the 2nd, the social worker called me with the name and number of the unit manager who wanted to replace the phone! I was very appreciative, expecting a replacement that would be lower-end and basically just able to text. That would have been fine. I called him and we set up a time to meet at my carrier. He was adamant that we solve this problem as quickly as possible so Daniel didn't have to suffer this awful inconvenience any longer than necessary.

We met a few hours later and within ten minutes we were done. The carrier associate asked which phone. I asked the unit manager what the expectations were for replacement. He again was adamant that there be as little inconvenience as possible and insisted we get the phone that most closely resembled what we lost in features and capability. So, I said that I had looked at the carrier website that morning and sheepishly said the best match was also the most expensive phone. He said, "Then that's the one we get!" The associate also agreed that was the best match, and asked what colour :) I expressed my deep gratitude for the generosity, and he just reiterated how important it was that Daniel have what he needs, and that it should be as little hassle for me with my kids and with everything else I'm dealing with. I also said it was very important the phone be drop-proof and be in a rugged case like the previous phone, and so he said, "Okay, then we'll get you the case you need." The carrier store didn't have it but the London Drugs a few stores down did. The associate there pointed us to, again, the most expensive option as what was the best fit. The unit manager had no problem with it. So...almost $900 later.

Wow, I am so thankful for God's providence for solving this dilemma for us, for doing a work in my own life (that I actually didn't worry about it!), and the generosity displayed by the hospital. I've been told that this expedited generosity is absolutely unheard of in the hospital. Usually, the bureaucracy and paper-pushing, though not intentional, drowns the best intentions to help and quick resolutions are never expected. This unit manager has only been working there for a month or two, I was told, and everyone loves him. He was such a blessing. He said over and over that if I ever needed anything -- "Anything!" -- to not hesitate to call his cell and he would help.

We're still hoping they will find the original phone of course, because there are things on it that haven't been synced since we got it a few months ago. Hopefully it didn't go through the wash. But again, that's in God's hands. We have more than what we need now because of God's provision.

The other story I wanted to share was a conversation I had with one of Daniel's hospitalist doctors. A few days after the near fatal bleed Daniel had, I was headed out after visiting him. I met Dr. S. in the parking lot as she was just arriving. She asked how we were (she hadn't been Daniel's doctor lately), and I told her about the crisis, and she was very concerned. I said, "Yes, it's been very hard, but God has brought us through and is strengthening Daniel and he is recovering okay."

She looked at me thoughtfully, and asked, "You really believe God is giving you the strength you need, don't you?" She isn't a Christian, and comes from a Russian-speaking country. She has always smiled and nodded when I brought up God.

I replied, "Oh, yes! There is no way we would be able to get through this without God's strength. Daniel wouldn't have been able to survive this long without it!"

Thoughtful again, she said, "I admire you. So many people say they believe in God, but they don't have what you have."

"I know," I answered. "There are two reasons for that. Either they don't know what they have in God, or they don't believe in the true God even though they say they do."

She pondered that, while I continued, "God may heal Daniel, or He may choose not to. But that's okay, because the most important thing is that He is glorified. He has given us promises that we can rely upon."

She didn't understand the part about promises and asked a clarifying question, so I rephrased what I meant. I ended with, "God is good and He is loving. We can trust Him."

She replied, "Thank you for sharing that with me," and we went our separate ways. I headed to my car and sat and prayed for her and so many others whom we are affecting, crying out for God to be glorified through us and bring a harvest. His will be done.

So, please continue to pray for:
- God's will to be done
- God to be glorified
- That many would come to know Him through this
- That God would have even more mercy on us and soon fulfill our longings to have Daniel restored and able once again to declare God's love in speech and song, and serve Him with all of the gifts and abilities He's given him
- For relief for Daniel from the pain in his stiff neck and sensitive bowels
- For energy and strength to endure for both of us
- For His people that their faith would be strengthened through the powerful work of God through our faith.

Thank you.

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.”