Final earthly days and Feb. 18, 2015

What a life-changing week the past seven days have been. God has and continues to teach me so much. Now that I’m mercifully feeling a little more rested, I’d like to share some more details of what happened, and also some reflections as I solidify them in my own mind. I’ll do a series of posts to cover all of what I’d like to share. Thank you for continuing to read this blog. May God be glorified even more.

Sunday, Feb. 15, was Daniel’s last good day of responsiveness. His hemoglobin dipped into the sixties according to Monday’s blood test (normal is 135) and so I was working on getting him another transfusion for his energy and alertness. But the doctor was never there when I was.

Anyways, the kids and I visited him on Sunday and had a relatively good visit. While he was of course very sleepy, he still laid his hand on Josiah’s shoulder and hugged him for a good long while, with Josiah soaking it in. After Kezia finished her snacks sitting with Daddy, she asked me if she could hug Daddy. She got on all fours on his bed and laid her head on his stomach as she has done a few times before. So special. That was the last time they got to see him before Heaven.

Monday and Tuesday were days of a lot of sleeping for Daniel. He had a lot of trouble trying to get alert enough to answer any questions. Sometimes, no answer came at all. He was just too tired. The med he needed finally came in and good friends of ours picked it up for me Tuesday evening. It’s amazing how the Lord provided the med even though it would turn out that Daniel wouldn’t need it. I spent my last evening with him once again by his bedside, praying, listening to a sermon, and holding his hand.

In his sleep, Daniel’s hands would start fiddling with his trache mask or his dressings, and then I would gently remind him, “Daniel, you shouldn’t take off your dressing.” His hands would become still and then he would slowly lower them as he came to himself, his eyes still closed. This had been a pretty common occurrence those last several days.

And so, the life-changing phone call. At 3:29am Wednesday, I got the call from one of his nurses, Sarah. She said she was so sorry but that Daniel had passed. Having just woken up in a start, while I had heard her it was so surreal I asked her to repeat herself. She did. My heart and mind were overwhelmed with the answer God had now given me. I asked her what happened and she told me. She asked if I needed a cab ride, etc. and I said I didn’t, that I had friends on-call. She asked if I needed anything else, and I said, “I just need to pray.”

Getting off the phone, I poured out my heart to God, both overwhelmed with the deep sorrow of losing him, but also with the unspeakable joy knowing that Daniel was face to face with his Lord and Saviour. Finally! I grieved that God’s answer wasn’t a wonderful miracle of healing in this world, but I praised Him for the assurance that Daniel was fully healed and whole and utterly happy in the presence of Jesus. The comfort of that time in prayer was profound.

Still, I was in shock at the finality of that simple phone call. After I prayed, I called my friend who had volunteered to be on-call, “Hi, Kim. I got the call.” While I waited for her and her husband to arrive, I continued to pour out my heart to God, still in that shocked place between broken-heartedness and joy. Grief and hope. Profound pain and intimate worship. When they arrived, we prayed in my kitchen. I ended with, “The Lord gives and the Lord takes away. Blessed be the name of the Lord.”

Kim’s husband stayed at my house while Kim drove me. We got to the hospital sometime after four. I spoke with Daniel’s two nurses shortly, and then I went in to see his body. I was struck with the obviousness that he wasn’t there anymore. It was just his shell. I placed my hand on his forehead (still a little warm) and prayed aloud, worshipping God once again.

After a while, I talked with the nurses more about what happened: around 3am, in his sleep, Daniel’s hands took off his dressings. Only this time, they also started taking off the tumour itself. This caused an unstoppable bleed. On their rounds, the nurses found the bleed in progress and estimate it had been going for about eight minutes by that time. He was sleeping through all of this. They held his hands until he passed away. They said he was completely relaxed and peaceful. What a mercy. And I’m so glad they were there with him.

As an aside, I think it is so obvious that God took Daniel home in His perfect timing. Daniel slept through it all, and yet the Lord allowed and even directed his hands to cause the bleed that would cause him to step into eternity. The cancer didn’t kill him. He didn’t suffer through the trauma of suffocating. I believe it’s as if God said it’s time to take off this earthly shell and enter into My rest.

As the early morning went on, key friends and family were informed, with several coming to the hospital. The news quickly spread. There were quiet conversations by Daniel’s bedside, prayers for peace and comfort for us who are left, and many hot blankets offered to me by the nurses. The rest of the morning was mostly spent in the ward “quiet room,” where I talked with those who came to help and support me. We discussed next steps (while I tried to choke down some breakfast), and started arranging details for the services as the morning went on. Thank you to all the friends and pastors who came to help.

After spending some final time alone in Daniel’s room by his still body, praying and praising God, I once again appreciated how obvious it was that his soul was with the Lord. Still, there was nothing easy about it. Praise God for the comfort of the Holy Spirit.

Later that morning, friends of mine and I reconvened at Timberline to plan Daniel’s services. Not having really thought about it before, I decided that I wanted the graveside and the memorial to be on separate days. Not only for the kids’ sake because it would be a very long day, but more so for the very different purposes of the services. The first more focused on saying goodbye to his earthly body, and the second a celebration of a life well-lived for Christ. I didn’t want one or the other to distract from the importance of being fully present in both. I didn’t want to have to force myself to switch gears and just go through the motions.

Of course, with the timeframe that we had (Friday and Saturday services), which was because several key people were going away, we had a lot of work to do in a short amount of time. Thank you to so many of you who helped make the wonderful services happen, and arrange all the details. While I still needed to do a fair amount, it would have been impossible without the wonderful service of so many.

After lunch, I took a walk around the ranch to clear my head and continued to pray and reflect on God’s truth. I spent a few hours up at the campfire ring, riding emotional waves of pain, joy, sadness, hope, grief, and comfort. Thank you to so many of you for your messages and comments on Facebook. I read many of them while up there and thanked God for how He had worked in my beloved husband’s life.

 

Once home, (there had been babysitting all this time between several people), I sat down with Josiah to tell him what had happened. I started by saying, “Remember in our Jesus storybooks how Jesus is a real Person, even though we can’t see Him? Well, Daddy has gone to be with Jesus now, and even though we can’t see him or visit him anymore, he is living with Jesus. And guess what! He is so happy! And we’ll get to see him again when God calls us home, but we don’t know when that will be.”

We had several conversations over the next few days (and still are) about what that means. I made sure he knew he could share his emotions with me as well as his questions. Since then, I’ve just been very open and accepting of Josiah’s childish logic and am helping him to make sense of it as much as a four year old can grasp. He’s doing okay. Kezia, being just barely two, doesn’t have much of an idea of what this means, but I still tell her very simply that Daddy is with Jesus, that he loved her so much, and that he is so happy!

Later that evening, a few friends came over to drop something off and we talked, and another friend came over to help me write the eulogy for the memorial bulletin. Heading to bed, I once again immersed my mind in God’s Word listening to rich sermons. It was a long, life-changing day. Praise God for giving me strength.

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.