Quick MRI update

The Dr. talked with the radiologist to have a close look at things. The cancer in his lungs is barely noticeable, if at all -- what they do see could just be from the aspiration last week. Very encouraging. 

Daniel still needs to be assessed for the trach so the Dr. will arrange that. 

I asked Daniel about his tongue size, and he said it has gone down a little more since Saturday. 

So, some really encouraging things, but nowhere near out of the woods. He's still very weak and out of it. 

Thank you for praying!

The past week in hospital

It’s been a week already since Daniel was admitted to the tertiary ward. There have been a few hiccups but also some definite progress.

 

On Friday, Daniel aspirated food into his lungs. The doctor ordered an x-ray to confirm it, and Daniel was then put on antibiotics to prevent any pneumonia. Otherwise, he’s been generally very sleepy and weak, but still able to take a few bites of pureed food with the blends I got him being fed through the tube. It is very difficult for him to even stand at this point. Please pray for increased strength!

 

On the upside, Daniel continues to progress with more med tapering. What that means is the harsh, addictive pain meds he’s on continue to go lower and lower in dose as his new med dose continues to increase. In fact, Daniel has been an over-achiever and has built up his tolerance for the new med quicker than scheduled. So, not only is Daniel completely off one med (which happened a few weeks ago), he’s now down to a third of a high dose of another, and the other two pain meds he’s on are either very, very low or just for a breakthrough as needed. Seeing this progress is very encouraging.

 

The other interesting thing is that when I saw Daniel yesterday morning (after not seeing him for a few days), I noticed the swelling under his jaw looked less. I asked him about it and he indicated, yes, the swelling on the one side had decreased a little and so had his tongue! Now, we (the doctor and us) don’t know if that’s attributed to the new med or the antibiotics (perhaps a latent effect as it may have also helped reduce any infection that may have been in those areas). But all the same, it is great to see it going in the right direction. Please pray that the swelling would KEEP going down and that that would be an indication the cancer is being killed off.

 

The doctor discussed with us today the option of getting another MRI. He would feel better about it because the CT scan that was taken last week didn’t really come up with a lot of information. He wants to do the MRI so we have all the possible info we can to make informed decisions as we move forward – whether anything needs to change or keep on our current course. We’re all for more information, so we signed the paperwork. Hopefully it won’t take too long to get that done.

 

So, other than the prayer requests already mentioned, please also be in prayer for:

- increased alertness for Daniel when he needs it, but the ability to relax when it’s time to sleep

- continued and increased efficacy of the new med to continue to manage his pain levels and also see some solid evidence of it fighting the cancer

- protection for Daniel from any further setbacks

- wisdom for the doctors and nurses who are caring for him

- strength for me as I split my time between the hospital and home

- Josiah and Kezia, that they would continue to feel secure during this continued period of instability and missing daddy (we all went for a visit on Saturday)

- full healing and restoration of strength and energy, so Daniel can serve in the many roles which God has blessed him with.

 

Once again, thank you to all of you who have been so helpful with practical needs, prayer, and encouragement! This continues to be a very difficult season for us – agonizing and exhausting. Our hope continues to be in God; He is able – may His will be done and may He be glorified in us.

When I asked Josiah later that night what his favourite part of the day was, he said, "Snuggling with daddy." 

Kezia with a drowsy daddy. She liked playing with his hospital bracelets. 

Need for respite care

After another exhausting week for us both, Daniel and I consulted with a few nurses and doctors over the weekend and decided that we are in need of respite care. The best place for that is back at the Abbotsford Hospital; this time in the tertiary care ward (right beside where Daniel was on the Oncology ward two and a half months ago). A bed became available this morning, so here we are. Praise God that this could happen so quickly. 

Along with the extreme fatigue we're both dealing with (Daniel from the cancer and meds; me from all the regular things I do plus the extra care he's needed being so much weaker now), Daniel needs extra care I can't give him. 

While he's on this new med and weaning down/off the other meds, the transition is causing withdrawal symptoms and we need him monitored more closely until his body has developed the tolerance for the dose he's working up to. When he's feeling better and more "even keeled," and when I'm more rested too, he'll come home (if the Lord wills). 

The other big reason for needing more specialized care is he needs to be properly assessed whether he needs a tracheostomy. Should the tumour/edema get worse, his airway could become restricted. This procedure needs to be done electively, before it becomes an emergency and much more traumatic. An ENT specialist will assess him soon to see where we're at. So, a BIG prayer request is that this would never become an issue. Having a hole poked through one's trachea (right above the centre of the collarbone) and a tube inserted -- yeah, we don't want that to happen. But if it needs to, Daniel will be cared for well here. 

A big praise already is that Daniel got a large private room. It's relatively quiet and will give him a good chance to rest, which is a major reason he's here. I'm so very glad he won't have to deal with loud roommates again!

So, the plan is over the next day, Daniel will be observed to assess where he's at pain and symptom-wise. Then meds can be adjusted from there. 

We expect Daniel will be here for a few weeks to optimize the transition he's in. 

Please pray for:

- full and complete healing! God can use anything, even a mere moment of time.

- God's will would be done. 

- strength for us both during this next phase. 

- renewed energy for us both. 

- encouragement and comfort for us both, being apart again. 

- continued determination for Daniel to fight and persevere. 

- safety during driving for me during the 45 min. commute. 

- the new med would continue to be helpful and would start noticeably killing the cancer too. 

- wisdom for all of the people caring for Daniel. That there would be no mistakes, details missed, or complications. 

- that we would all work together well and achieve our goals for this respite care. 

- understanding for our kids about why daddy can't be home again. 

- during this time of continued uncertainty and constant temptation to fear what could be ahead, that the peace of Christ that we don't/can't understand would guard our hearts and minds in Christ Jesus.  

- God would be glorified and exalted; that His power would be unmistakably evident to all here. 

- that God would respond to all of our prayers for Daniel by restoring him to full health. 

Thank you for your faithful, fervent prayers, and your help and support!

Promising new med but still some other struggles

Daniel started on the new med on Saturday. One of the purposes of it is to help him wean off some of his pain meds. It replaces them but with fewer side effects. By the second dose it was already causing major "dopeyness" as his opioid meds weren't acting on as much of his pain anymore and were causing him to feel overdosed. (That's unfortunately a too-familiar feeling for him). But in this case, over the weekend I had him lower his dose of one of his meds to compensate. 

We saw Dr. Zubek on Monday and she took him off the most inflexible pain med he was on -- a patch that is replaced every three days. So, now while the pain is being managed well enough, Daniel is dealing with withdrawal symptoms. Shivers/shaking, some confusion, and a lot of brain fogginess. All of this causes a fair amount of anxiety. 

We talked with the home health nurse about it today and she said it's just something you have to ride out. She advised Daniel to drink more water to help flush out the kidneys. So, please pray this first transition will go smoothly and that the withdrawal will be minimized and shortened. 

Because of Daniel's symptoms, he needs more monitoring and help. This in turn has depleted more of my energy. I'm very thankful for all the help I've gotten these past several days. Please pray for me that I would have the strength, energy, wisdom, and patience I need to help him and be there for the kids too. 

Listening to John MacArthur again today, I wanted to learn more about prayer. It's such an integral -- and powerful -- aspect of the Christian life. It activates God's power as He invites us to take part in His plan.

Pastor MacArthur was also talking about how we should pray. One important way is praying according to God's will. We know that God being honoured, worshipped, and glorified is His will (after all, only He has the qualifications to deserve that!). So, as I continue to pray that Daniel would be healed, I can confidently pray that God would use whatever method to heal him -- a moment of time (like the dream I had last night; that was nice, though oh so disappointing when I realized it was just a dream), or the new med he's on, or the supplements he's taking, or whatever! Whatever way that would bring Him the most glory.  

I also know that God would be glorified by healing Daniel for so many reasons. Not only would Daniel's full healing and restoration be a wonderful witness of God's power and faithfulness, but Daniel returning to his ministries at Timberline and here at home would honour God so much as well. 

And so we pray fervently with hope and expectation. No, we don't know the sovereign will of God and we must ask these things in humility, knowing God knows best. But we do know that the purpose of life is that God would be praised, and we long to praise Him for the rest of our lives for healing Daniel. 

Thank you for your faithful prayers. They do truly make a difference. 

Prayer requested for efficacy of new med starting soon

First of all, we want to say a big thank you to the many people who have recently helped us out in so many ways – food prep, grocery shopping, child care, play dates, manual labour (we’ve so been enjoying our cleaned-up patio!), and joining us in prayer, even physically. Your service and words have been so encouraging and helpful.

 

The past week has been characterized by us all getting well as a family from the colds we all got last week. I was hit especially hard on Friday after a very long day of appointments at the hospital. When we came home I was just so exhausted and done in. Then our GP’s office called saying I needed to pick up some paperwork right away so out I went again!

 

We had to miss church because of how badly Daniel and I felt. Thankfully, the kids recovered after a few days once their 102 degree fevers broke with Tylenol. Daniel developed a routine cough – the kind anyone would get – but in his case it would sometimes make his tongue bleed. It’s just another layer of battle that we all didn’t need, though I am surprised we’ve been so healthy otherwise during this very taxing time.

 

It’s taken me a lot longer to get over my cold. First, because I got it so much worse than normal (due to my very stressed system), and second, because I haven’t been able to rest much. Daniel, the kids, and the house still need to get taken care of. I’m thankful I have my energy back now. It was very rough.

 

Yesterday, Daniel and I went out to the hospital for another blood test to check on his levels. Talking with the oncologist later, she said Daniel needs to get pamidronate IV shots once a month for a new symptom. The cancer is releasing calcium into Daniel’s blood, so the IV treatment stores it back into Daniel’s bones. If the levels would get too high, Daniel could get very nauseated and confused. Please pray we get this set up soon, as I’m trying to get it ordered at our local Ridge Meadows hospital if possible.

 

After the blood test, we attended Daniel’s aunt’s memorial service. It was a special service and was full of the Gospel. What an important thing to reflect on at a time like that. I really appreciated how the Pastor talked about the Gospel in light of suffering and trials. His words echoed what God has been teaching me about the purpose of and in trials.

 

It was also so wonderful to spend a few hours after the service catching up with Daniel’s extended family. They are such wonderful people and so encouraging with their hugs and prayers. Daniel, although exhausted, was very encouraged by everyone too, and considered it so worth it to spend what little energy he has to attend.

Many of you have asked in what ways you can help. I have learned that calling/messaging a lot of people to ask for help in various ways has been a job in itself (though I am so thankful to have so many want to help!). Plus, our days are such that giving people sufficient notice has sometimes been a challenge. And because it takes a lot of work, I find I just try and do most everything myself, which of course is exhausting. 

It would be so much easier if I knew who was available, or even "on call" and when. So I asked some friends to help make a master calendar and my friend, Margaret, set it up. 

The idea is, if you would like to help in some way (eg. delivering a meal, grocery shopping, errands, helping around the house, child care/play dates, etc.), put your availability on the following account's calendar created in Google.

Log in to Gmail with the address: handsandfeet50@gmail.com and the password is 'forhisglory'. Then click on the apps icon by Margaret's name (the 3x3 grid icon near the top right) and scroll down to and click on the calendar icon. Once in the calendar window, anyone can then mark off a time slot with their name, what task they're available for, and phone number. I'd then be able to contact people directly to ask for specific help. Let's give this a try!

 

So, for prayer requests, along with continued fervent prayers for healing and complete restoration, we are asking for prayer for the new med that should be starting on Saturday. It has a lot of potential so please pray God would use it to help Daniel a lot. Please pray for wisdom for me as I do a bit of legwork to make it happen and make decisions about specifics, as well as wisdom for the medical professionals involved too. Thank you so much for faithfully bringing us before the Father in prayer!

A friend took the kids to the playground where Josiah made a new friend from the neighbourhood. 

Accidental pharmacist-caused overdose, repercussions, and moving forward

Last Friday, we had a prescription filled at a new pharmacy. We were referred there from our regular one so the RX could be covered. 

Later in the middle of the night, Daniel woke me up at 3am and I asked him if he was okay. He wasn't clearly answering yes or no, so he then tried to text me on his phone. It took a bit but he finally typed, "Call 911," to which I exclaimed, "What? Why!?!" It was another few very long minutes before he could explain, "So you can sleep." Clearly he was disoriented because that doesn't make any sense. He then realized that too.

Over the next two hours, we were trying to figure out what he was feeling, and had to deal with worsened sleep apnea (not breathing regularly while sleeping), dopiness, and disorientation. Daniel had already had his pain meds adjusted two days prior, so he was already dealing with these kinds of symptoms, and this incident just exacerbated it. 

The pharmacist called me first thing that morning, informing me of his mistake -- he had given Daniel ten times the dose he should have. He had been reviewing his work from the previous day and caught his major mistake. He was very upset with himself, and came over to our house shortly after for two hours that morning trying to figure things out with Daniel. So, once the pharmacist figured out what meds and how much Daniel had taken overall, he then went back to the pharmacy to do the calculations for when to start his med again. It was all very complicated. 

Plus, not only did Daniel have to deal with such debilitating symptoms, but it has been a huge setback in his pain management and ability to eat (as he was throwing up on Sat. morning and the nausea was long-lasting). 

Daniel's GP couldn't be gotten a hold of over the weekend, so I called Sandy, the nurse friend who has been so helpful, and got her advice which confirmed my own thoughts: Daniel didn't need to go to the ER and would fare far better trying to sleep it off at home. 

So, over the next day I had to keep a close eye on him, checking on him while he was sleeping, helping him with more things, and making sure he was thinking clearly enough to take all of his other meds. With all of that and taking care of the kids too, I was an exhausted emotional wreck for much of the day. 

Since then, Daniel has been in a lot more pain as the management levels have been completely out of whack and need to be reestablished. That takes time. 

Our GP called from out of town on Monday to check on him. She agreed with the tack we were on for getting his pain back under control. She also suggested a semi-new idea on how to treat Daniel for his cancer. I say semi-new because it is one she had brought up earlier for pain management but she had since learned more about its anti-cancer potential. A doctor colleague of hers is treating his own cancer with it. Plus, our naturopath mentioned it last week and I had done a bunch of research on it. I had wanted to ask our GP about it but she beat me to it. So that was encouraging that we're all thinking the same thing. We're still in process of getting this treatment set up. 

So, the last several days have just been focused on getting Daniel back on track med-wise and dealing with the symptoms -- not to mention recovery for us both. 

This morning a Home Health nurse came over with our local pain and symptom specialist who had been recommended to us to augment the care our GP has been giving us re: pain management. They'll be working together to help Daniel feel better. The specialist had a few good suggestions, so over the next day or two once we get the meds we'll see how they help. 

Right after that, we had to leave for an appointment at the Cancer Agency in Abby for an appt. with the speech pathologist. While she couldn't help Daniel talk again (only the tumour shrinking will make that happen), she did offer a possible aid for Daniel's fatiguing phlegm problem. While Daniel does have the portable suction machine which helps with the thick mucous his mouth secretes, he's had to use it so much his mouth is getting raw in places. So, the pathologist suggested a mouth spray that helps cut through the phlegm and make it more manageable. 

On top of all of this, we all seem to be getting a cold! One of the visitors we had on Sunday later came down with a 102 degree fever that same evening. So I think that's what we're all fighting now. Kezia has a 102 degree fever and Josiah has a lower one too. Daniel has developed cold sores on his tongue. I'm feeling sick too. 

So, lots to pray for as I'm sure you can glean from the above:

- med adjustments/replacements would be effective and helpful

- new cancer treatment idea would be easily set up and those involved would use godly wisdom to figure out the best specifics for Daniel

- that the treatment would be highly effective and that we would see improvements quickly

- that symptoms would be better managed and reduced

- that we would all be spared more sickness and would return to health soon (I just checked on Kezia and the baby Tylenol I gave her has brought her fever down a few degrees)

- energy and strength for me to continue to serve my family

- and of course, complete healing and restoration for Daniel and that God would be glorified in healing him!!!

During Daniel's crisis over the weekend, it brought on my own emotional crisis. I was feeling very discouraged and inadequate. The previous several days during which I had been doing a lot of research, I was fighting the tendency to feel overwhelmed and not good enough. The world of alternative cancer treatment is insanely vast and I didn't know how to be successful in reaching my goals. That was mainly because I didn't have a realistic grasp on what my goals in this season of trial actually are. 

I had already been ending my research times by reading and thinking about the Psalms. By going to a favourite Psalm and mulling it over more, it was very helpful to focus on the truth of God's Word. It helped me gain perspective on all of the opinions, anecdotes, promises, and outright lies I had just been reading in my research. Going back to the truth of the Bible at those times and many others is comforting and helps me evaluate the validity of what I just researched. It reminds me that my hope isn't in knowledge, a treatment, or man's wisdom, but in the God Who created the universe. That is Whose words we get to read in the Bible -- what a precious and abundant gift!

Even so, I was still battling a deep discouragement that I wasn't doing enough or trying enough alternatives, and doubts whether I would be called "faithful" at the end of this trial. The few people I've mentioned this to have been incredulous that I would feel that way, but I did. My feelings were that I was doing all this work on multiple levels and Daniel still wasn't getting better. 

Did you catch the lie? I had to. Daniel helped me see it on Saturday evening. My goal isn't to make Daniel better. That is a responsibility and burden I was taking on that not only is unrealistic but is also trying to take control of what only God has control over. 

So, I asked Daniel to help me come up with attainable goals, delineating the actual responsibilities I do have: 

- reading the Bible

- prayer and reflecting on Who God is

- taking care of the kids (Josiah just came down asking to "snuggle lots")

- doing my part to care for Daniel

- run the house 

- research for appointments

This last one I asked him for clarification on. We decided that for the next week, I would only research enough to ask intelligent questions at our appointments and to help make informed decisions. I realized my tendency was to strive to figure out the next solution and it was causing me a lot of stress. That is why this new treatment idea is a blessing because several avenues are suggesting or advocating it and it's not just me grasping in the dark. 

After this helpful "conversation" with Daniel, I had asked Sandy to come over. So, we had a much needed chat and she encouraged me and assured me that I was going above and beyond already, regardless of how I was feeling. She also told me about some things God is doing in people's lives through our circumstance. Daniel and I both found that encouraging. 

So, your own stories of God working and messages of encouragement have been and would continue to be so very helpful. Please send them along to us as you think of them. Thank you, and thank you for continuing to faithfully lift us up in prayer.