What's "normal" anyway?

(From Daniel):

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

 

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

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

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

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

Daniel  

(From Evelyn):

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

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

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

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

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

Evelyn

Update on past days.

(From Daniel):

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

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

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

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

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

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

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

Thank you for your prayers.

Daniel

God is in control

(From Daniel): 

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

 - Matthew 6:19-21 NASB

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

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

 - Job 1:20-22 NASB

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

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

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

Thank you for your prayers.

Daniel 

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

Another visit home and a good conversation

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

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

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

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

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

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

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

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

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

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

May God be glorified.

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

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

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

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

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

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

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

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

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

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

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


2 Cor. 1:3-11 (AMP)

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

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

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

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

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

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

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

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

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

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

Tweaks and Bleeds

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

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

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

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

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

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

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

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

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

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

While we are waiting...

Thank you to so many of you who are so faithful in praying for us and supporting us in so many ways. It means so very much. 

The past week has been thankfully fairly even. The transfusion and subsequent iron IV and pamidronate helped significantly with Daniel's headaches and returned his energy back to where it had been. 

Please pray, however, that the IV site on his arm would heal quickly from the leaked saline from a poor connection. It burns. His body has to reabsorb it but it takes a long time. Daniel's veins always give the nurses trouble when they try putting an IV in, and it usually takes several tries. For Daniel, that means a lot of pain and stress. Please pray any future IV's would work well the first time. 

Daniel has worked hard to continue to build up his strength, and has done a flight of 13 stairs up and down a few times this week. It's quite a workout for him and fatigues him for the next several hours. 

We haven't seen any progress against the cancer in the past five weeks or so, though the CT scan a few weeks ago confirmed it hasn't spread to other organs as it should have, and his lungs are still clear of the metastases. Praise God! Like I said in a previous post, the main tumour has gotten larger and remains that size. 

Daniel's lower lip protrudes where his two front lower teeth are very loose. Both are apparently caused by the tumour affecting teeth roots and the nerves in his lip. Please pray the numbness in his lip would get better and that he wouldn't injure it in the meantime. 

Oh, how we are so very weary of all of this. Daniel wrote that it is getting easier to feel discouraged, and I can relate, though we are both filled with many conflicting emotions. Everything from joy, hope, and contentment, to sadness and disappointment. 

Earlier this week, I wrote a list of reminders about God, things I would tell myself when I am anxious or overwhelmed. Perhaps it can help you be intentional too in remembering Who it is we serve and love:

Intentional reminders about God:

He is good. 

He doesn't make mistakes. 

He knows what He is doing. 

He is trustworthy. 

He is fully in control. 

He is powerful enough to bring about His plan. 

He loves my family even more than I do (and perfectly).

He knows about my pain. 

He enters into my pain with me. 

He has compassion for me. 

He is allowing this pain for good reasons. 

He will not allow this pain forever. 

He knows my desire to serve Him. 

He will not leave anything unfinished. 

He will accomplish/allow that which will bring glory and honour to His name the most. 

After all, it's not about me. 

I hope that encourages you. Remember to not forget in darkness what you learned in the light (thanks, Starfield, for a great lyric). If you are in a time of "light," now is the time to dig deeply into God's Word, study God's character and works, get to know Whom it is you call your Lord and Saviour. 

If you are in the darkness of a valley, even in the shadow of death, immerse yourself in prayer and reading the Bible, remind yourself of the truths that you believe -- truths that are much easier to believe when all is well. Take joy in the fact that the trying of your faith proves it is alive and genuine. Identify the lies that the enemy is trying to fool you with, and let the crucible of suffering that God is allowing to shape and refine you. As C. S. Lewis said, "Pain is God's megaphone." You and I are much more useful to God having been refined in fiery trials. 

And in that context, we still continue to ask that this season would be over soon, that God would be glorified the most in bringing full recovery and health back to Daniel for God's glory and the advancement of His kingdom! 

And while we are waiting, we will continue to serve Him and worship Him!

Kezia, 20 months, giving me a moment of joy and laughter.