Called Home

God called Daniel home early yesterday morning. I am so very saddened at our loss,  yet I am rejoicing that he is worshipping his Lord face to face,  free from all sadness or suffering forever. I'm so joyful that I am assured that I will see him again with no more goodbyes. 

While I will give more details and reflections later on,  right now I need to pass along the details for the services. 

The graveside service for family and close friends will be held tomorrow,  Friday Feb 20 at 11am, at Maple Ridge Cemetery. 

The memorial service will be on Saturday Feb 21 at 1pm at Maple Ridge Baptist Church. All are welcome. In lieu of flowers please make a donation to Timberline Ranch.  

God has given us His answer.  To Him be all the glory.

A slough of challenges for me

While Daniel's condition has thankfully been relatively stable this week,  I've had a hard week.

Between not having reliable hot water at home for five days (the tank pilot light kept going out and I couldn't get it relit),  and all the challenges that brings,  to having to email back and forth with the blended food supplier because the shipment was late and we were running very low,  to still fighting a bad throat cold since last week (one night it was very debilitating), to spending the last week checking with the supplier for Daniel's main pain med to make sure they had what I needed,  only to find out not only did they not have everything they said they would have,  but they were robbed and very,  very little was left.

So,  Daniel is on half rations so it lasts until Tuesday and hopefully they will get their next shipment in and we can get it to him. It's the only place that has what we need. I'm praying that the pain coverage will be somewhat adequate at half the amount. Needing to start him on harsh pharmaceutical drugs regularly again will ruin the equilibrium we've fought to maintain with his bowels and his ability to sleep.

No wonder this awful sore throat is hanging on so long.

Please pray for these med details, and of course for the big picture requests we are asking for. Daniel and I thank you. And thank you to all who have helped with so many of these challenges. 

Here's a picture of Daniel resting as I write this:

Conversations, words, and notes

Daniel has come through a few more minor bleeds and some pretty scary respiratory problems in the past four days. No bleeds yesterday or today though.

The breathing problems involve his trache getting looser because of the tumour,  plus the mucus is drying inside the tube liner, the inner canula, because the mask over his trache often gets misaligned and doesn't moisten his air to keep him able to cough up stuff easily. So, they tightened some things and turned up the moisture,  and I asked for him to have more regular checks of his canula. It's a work in progress. 

The swelling in his face and legs has decreased drastically in the past several days. Daniel is able to see out both eyes again.  So nice. Though I was concerned that it was a sign his body didn't have enough volume because of all of the bleeds he's been having.

Daniel's doctor this week is our favourite,  Dr. Z,  and I was finally able to have a good sit down conversation with him Wednesday morning about my concerns. I'm so thankful he took the time to really listen and interact with my suggestions. 

I explained how the conclusions from last week's care team meeting weren't turning out to be what I said we wanted. I once again delineated between ordinary measures and extraordinary measures as Daniel and I discussed a few months ago.

Last week's doctor said she knew that God's answer was that Daniel was going to die soon, and that because when she asked Daniel if he wanted to go to "be with the God,"  and Daniel had indicated yes,  that meant he didn't want treatment anymore; I tried to explain that as Christians we always prefer to be with God in Heaven,  but that doesn't mean we give up or have a death wish. I told the team that the answer was misleading because it wasn't a precise question.

I told Dr. Z that if the previous Dr. thinks it's cruel to prolong Daniel's suffering and she can't understand that, one, God is giving Daniel the grace and strength to endure,  and two,  we are to do nothing to hasten his death including depriving him of simple meds,  treatments,  etc. that can prevent crises,  then she is not on the same page with us and should no longer be put on Daniel's case. I informed the ward manager of this today too. They'll talk about it.

So,  I explained to Dr. Z my concerns about Daniel's confusion and inability to communicate well at all, how it's causing distress for him,  and using up a lot of energy. (For example,  last night he spent 20 minutes writing and rewriting on his phone and clipboard trying to order the letters right and finally got half a phrase somewhat legible,  which I was able to ask him about. He wanted to make sure there were no needles in his mattress.) Plus,  the agitation has caused the nurses to have to medicate him with anti-anxiety meds a time or two and the extra pain meds he's needed were ruining his bowel equilibrium which required more meds. A downward spiral.

A bit of background: a few weeks ago I noticed more minor confusion in Daniel and asked that week's doctor to give him pamidronate because I know that confusion is a symptom of hypercalcemia. It helped a lot and Daniel even texted me again a few times -- it had been six days since the last text. Dr. Z had then followed up and was impressed with the response,  even though the calcium seemed to rise a touch. He said,  "I guess we need to treat the symptoms and not the numbers."

I reminded him of that yesterday and said I would like to try this med again to see if it helps. We discussed alternatives and I said because we know this one doesn't seem to have adverse side effects for Daniel to stick with it until it doesn't work anymore. He agreed. Dr. Z said he'd need my feedback to figure out if the med is effective and then if so he's okay with having a weekly order of it.

In light of last week's doctor refusing more transfusions, I also suggested a more conservative option for transfusions as it seemed Daniel would need another because of all the bleeds he's had. I said that the bleeds seem to happen soon after a transfusion so perhaps we shouldn't be aiming for 100 hemoglobin but more like 80, so the sudden added volume doesn't create the outward pressure on the tumour and cause bleeds when he coughs hard,  but still give Daniel enough for strength and energy,  relatively speaking. That way we can try to avoid the life threatening aspect of bleeds while still giving Daniel the benefit of the transfusions when he needs them. He thought about it and agreed. He said there's a certain aspect of this all that is akin to flying by the seat of our pants. That's one way to put it.

So,  he ordered the blood work for the hemoglobin baseline and the pamidronate,  which both required of course Daniel get an IV again. It took a few tries again late last night,  but the numbing patches helped with the discomfort.  And it turns out that Daniel doesn't need a transfusion as he's at 78, which really surprised both the doctor and I.

It's so good to have a doctor who at least somewhat gets where we're coming from (he seems to have at least a Christian background if not more),  and that I'm just trying to do the most ethical and moral thing to care for my husband and relieve symptoms and suffering as much as possible while we wait for God's answer, plus respecting God's standard for the sanctity of life,  trusting He will continue to sustain Daniel for what He allows.

This morning the ward manager and Dr. Z said they needed to discuss something Daniel wrote during the night. He was just about finished the med IV and spent a lot of time and energy with a lot of agitation writing the word "disconnect." So, the nurse unhooked his IV. The manager and doctor were very concerned whether he was refusing the treatment.

When Daniel awoke from his nap a few minutes later during my conversation with them,  I asked. It took a few minutes to get him awake enough to think about what I was saying and then to try and give me clear answers with his hands. Basically,  he wanted it disconnected because it was uncomfortable,  not because he didn't want the med. I informed the doctor and manager. I have since updated his printed sheet of words he can point to so this can be much more easily communicated in the future.

So,  yes,  a lot of heavy conversations trying to undo false assumptions from last week's meeting and getting the team back on the same page as what Daniel and I discussed a few months ago.

But a wonderful result God has brought about is during my visit tonight,  Daniel spent about a minute writing something and, while still having an extra letter here and a word there,  he said he needs me and loves me. Wow,  what a blessing! Plus, I'm looking forward to showing that to the doctor tomorrow.

So,  a lot happening with a lot of unknowns. All the while I've been fighting a cold,  the kids have eye infections as symptoms of their colds (it's not pinkeye as I thought),  and Kezia has had a substantial fever all day which has taken a lot more care. In fact,  she's coughing now (it's approaching midnight), so I'd better go.

Please keep praying. Thank you. God is up to something. May He be glorified.

The latest

Daniel has had three bleeds in as many days, the most recent during my visit tonight. I mentioned the other two on Facebook, for those of you connected there. It's been such a hard few days, dealing with so much emotion and spending so much energy crying out to God for strength.

(My updates on Facebook:

Friday,  1:47pm
Daniel is resting after another very major bleed early this morning. I found out about it when I came in this morning. He lost more than a litre they think. He is still very tired but responsive, just weak. The doctor ordered a few meds to help prevent more bleeding. It's hard to say medically how long he has. God knows, and we are finding our comfort in Him. If He wants to heal Daniel still, nothing will stop him. We are surrendering to His will moment by moment. It's a very hard place to be, but the only one that brings peace. Thank you for continuing to pray.

Saturday,  6:32pm
Daniel had another significant bleed this morning. When I got there he was extra sleepy from the meds they gave him again. The doctor won't be ordering any more transfusions. God knows how much time he has left. Still entreating God for a miracle if that would glorify Him the most.)

When Daniel is awake, he sometimes wants to try and write something, but that has become impossible. Either what he writes is unintelligible, or he can't even stay focused for more than a few seconds and just lays there holding his phone or the pen. I wish I knew what he wanted to say. Please pray that we could communicate effectively.

We exist in the tension between acknowledging God may take Daniel home soon and the possibility of healing him. Above all, more than life itself, we want God to be glorified. I continue to give God my desires,  hopes,  and dreams. Every time I have that fear of getting that phone call from the hospital,  I choose to give that to God too.

Prayer requests:

Continued strength and grace experienced in even more profound ways.

Comfort in our fears and the perseverance to keep giving them to God.

That God would keep displaying Himself in amazing and powerful ways, for His glory and honour.

Practically,  for the kids who are both sick. Josiah has had the sniffles and a short fever all week,  and Kezia who got pinkeye suddenly this morning. Her eye is swollen half shut. Pray for patience for me as she screams while I give her the eyedrops.

Thank you for praying. And for so many of you for your practical help too.

To God be the glory. His will be done.

Two very different perspectives on suffering

As I'm sitting here beside Daniel's bed, I have been reflecting on the especially tough past three days. I've been following up on treatment ideas that God has brought to my attention, doing my due diligence in research as always and asking the medical team their thoughts.

That asking brought up some very hard conversations that have both drained me emotionally and have given me yet more opportunities to share the truth of God and the hope we have in Him.

The doctor basically told me that because Daniel's suffering is so severe and his quality of life so poor, his life isn't worth living anymore and it's time to let him go. And she said she refused to try any further treatments on him that would just prolong his suffering. She said she thinks God has already given us His answer.

All of this was over the course of a few conversations, one a phone call and the other a formal meeting with the team. In the meeting, I was able to relieve my concern that anyone would try to alleviate his suffering by depriving him of that which is necessary for life (which unfortunately is not unheard of, even in Fraser Health), so I am thankful Daniel will still get all the care he needs.

I merely got my straight answer which I prayed for regarding the idea I had been researching, though not without having to insist on a robust discussion hearing all points of view rather than just the one doctor's. The answer is no, and I will continue to trust God with how He is leading.

I think the most vital part of that discussion was the differing views on suffering. To a non-Christian, suffering like Daniel's is always bad, always purposeless, and always hopeless. God gave me the opportunity to share His view on suffering, and I will let Him do what He wants with that conversation. I said that when God allows us to go through suffering, even suffering as horrible as Daniel's, He not only has purposes for it, but He gives us the strength and comfort to endure it. 

I take these opportunities to share God's truth and love very seriously and pray intensely before and after so that I can be intentional with my words, not only representing Daniel's wishes when he can't speak for himself, but most importantly representing winsomely the God Whom we serve. This is the essence of our ministry here in the hospital.

Are there loads and loads of emotions to deal with? Oh, my, yes. It is utterly exhausting. But as I do the hard work of continuing to surrender to God all of what I'm dealing with, and I immerse my mind in His Word, He gives me the strength I need. Like to write this blog. A few hours ago, I had absolutely no abilities to write anything because of the strain of the past few days, etc. To God be the glory for sustaining me.

As for how Daniel is doing, he continues to decline. While he is still responsive, his fatigue makes him sleep most of the time. There is more swelling in his face and feet, and he needed another transfusion on Monday. He had another random bleed today, though it thankfully clotted itself over time.

The doctors have reiterated that in their experience he doesn't have much time left. I have been told that if anyone wants to say their goodbyes, now is the time.

We aren't living in denial that the medical perspective on things may turn out to be correct. If God should call Daniel home to Heaven, then that is best, certainly for Daniel.

... I'm home now. My visit with Daniel was good, all things considered. I'm so thankful he was able to respond to me, mostly by his eyes but also some yes or no signing. At the end he needed to write something, but that was a long, frustrating process due to his preexisting dyslexia and fatigue. It took several minutes before the nurse and I finally understood the single phrase he wanted to communicate.

So, as I was saying, we are praying for that which will glorify God the most, surrendering our desires to continue to serve God together. The Bible tells us to be persistent in asking for our God-honoring desires. I continue to spend hours a day pouring my heart out to God just so I can function. He knows our desires and our suffering. He is gracious and compassionate. He knows what He's doing. And each time my heart constricts at the thought of my beloved husband dying, I turn that over to God once more, reminding myself of Who He is. Layer by layer, I surrender.

His will be done, and may He get all the glory.

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.