A time away and then keep right on going

A few people have been wondering at the delay in an update. It’s been a busy week.

 

Last Tuesday, Daniel and I headed to Stillwood Camp near Chilliwack for a few days of rest and a change of pace. Our kids stayed with my parents and very much enjoyed their time. My mom suggested the kids stay an extra day, and thus we would stay at Stillwood until Friday and then head to the ARH for our previously scheduled check-up on the way back to Cloverdale.

 

The extra day was very helpful, as it took me a while to decompress. Daniel felt very ill for most of our time there, but nonetheless the time was very much appreciated. The staff took care of our meals and we enjoyed the use of a beautiful cottage overlooking Cultus Lake. We had the opportunity to play board games, go for a few short walks, visit the lake, and even go to Castle Fun Park for a game of mini-golf. Daniel mentioned afterwards that a year ago, if he felt the way he did that day he would not have gone mini-golfing. But in our current context, that was a pretty good morning, so we went. Otherwise, we did a lot of resting, reading the Bible, and slowing down.

 

I was also able to dig in to more research, and so was then able to discuss our next steps with Daniel. Based on what I was learning, we decided to take a break from the chemo for a few weeks. Daniel’s weight is still too low and dropping, which is not sustainable when he has already lost around 40 lbs since January from a lean frame at that. The supplements he’s on are also affected because they need a stronger body with which to work.

 

So, at our check-up with Dr. Uhlman, I strongly suggested a two-treatment break and then re-evaluate in a few weeks and check Daniel’s levels and how he feels, and decide from there. We will likely be switching chemo drugs once Daniel is healthy enough to return to chemo; Dr. Uhlman suggested the 5-FU that Daniel took initially on ward, and see if that helps. It’s not as strong (in effect or side effects), but something had seemed to help a week after that first chemo round. We’re not sure it was the chemo or not, so we’re faced with a big guessing game. Dr. Uhlman said it was a “long-shot.”

 

I also had to insist on Daniel’s liver levels be monitored. I asked if they had been doing that, but the medical team had just established a baseline at the beginning and haven’t been checking since. Dr. Uhlman said it wasn’t necessary because Cisplatin empties out through the kidneys and they’ve been checking that every two weeks (and those levels have remained strong, which is good!). I said I require his liver numbers be monitored because of all the other meds he’s on for pain, nausea, etc. From my research, I learned that people have died from liver failure while on chemo and other meds because the doctors failed to keep an eye on it.

 

Returning home was a busy transition. My weekend was filled with getting things back up and running – grocery shopping, laundry, transitioning the kids back to our regular routine, household tasks, etc. We had a wonderful visit with the Goerzens on Saturday afternoon, and they encouraged us even in the midst of their own cancer battle with Jesse. [For those of you who know them, please continue to keep them in your prayers too.] On Sunday, we all attended church again, and I had a good long nap that afternoon, but I was way too groggy to blog at all that day.

 

Monday (yesterday), while we had the break from going out to Abbotsford for chemo, we saw Daniel’s GP and then his Naturopath in Langley. His GP adjusted his pain meds and dosage (this will be an ongoing process), and the naturopath addressed a few of the other symptoms that Daniel is dealing with (lack of appetite, nausea, teeth pain and sensitivity and the inability to clean them because of the size of his tongue). The supplements he suggested have already been helping.

 

The naturopath also mentioned something encouraging – the swelling that Daniel is dealing with in his tongue and underneath his jaw isn’t necessarily the tumour growing (which was a huge concern I had, because it’s swelled so much even in the last month). The ND said that it’s most likely oedema (fluid retention) that will naturally go away once the tumour – the cause of it – recedes. It’s actually a good sign because it means Daniel’s body is reacting to the tumour and not just ignoring it. He said it’s not something you want to try to get rid of with diuretics because that would just dehydrate the rest of Daniel’s body.  

 

So, as far as prayer requests, well, I’m sure you all still know we are continuing to pray for full healing and restoration of strength, energy, and speech. Daniel is still dealing with a lot of pain, nausea, gagging from phlegm, and difficulty eating and sleeping. Please pray this break would significantly help these areas. We’re seeing a speech therapist tomorrow at ARH to see if he/she can recommend anything to help. Please pray Daniel would be able to eat a lot consistently so he can regain weight and strength. Please continue to pray that I would have the strength and energy to manage so many responsibilities with the kids, house, and Daniel’s care. Please pray for us that emotionally/psychologically we would be encouraged by seeing progress. Arrangements were being finalized this past week at Timberline for campfire leading in Daniel’s absence, so that’s so hard for him too, having led it for twenty years!

 

Please pray that the main curative supplement he’s on, Salvestrols, would be effective and show progress soon. Being natural, they work with the body to destroy cancer but they also take a while – three to six months sometimes before one notices a decrease in the main tumour’s size. Plus, every person’s different too. Please pray that God would use them to destroy all of the cancer in Daniel’s body. Our hope remains in Him!

 

Thank you to those of you who have helped us and continue to support us in so many ways. May God bless you for your generosity and service! We have been so encouraged. We so long to see God glorified in all of this. 

 

 

Psalm 29:1, 2 ESV

"Ascribe to the Lord, O heavenly beings, ascribe to the Lord glory and strength. Ascribe to the Lord the glory due his name; worship the Lord in the splendor of holiness."

Our view from the cottage deck at Stillwood. 

The Stillwood staff did a lovely job arranging the cottage with a special touch. 

Skipping rocks at Cultus Lake. 

Visiting with my parents in Cloverdale, enjoying the sun. 

Fundraiser, reflections, and update

From Daniel:

I keep praying that God would heal me and that I would be able to talk again. God is in control and I will keep trusting Him no matter what happens.

It was so good to see so many people come out to the fundraiser; it was so encouraging. There were so many people who came and lots whom I didn't expect -- people I knew from many years ago, boys club members, long past Ranch staff I worked with and some who were on staff when I was a camper. As I looked around the room my mind was flooded with so many good memories. I have much to be thankful for.

The afternoon of the fundraiser, Evelyn took care of our kids and home all day and let me rest so I could have the energy for the evening. So in the evening I was feeling a little better than normal. It was so nice to have our kids there and to be cared for by someone (thanks, Megan!). This gave Evelyn a chance to relax and enjoy the evening and talk with people.

It is a big challenge not being able to talk (I can make unintelligible sounds but even that causes me pain). I deal with loneliness with not being able to talk. People tend to ignore me. I also don't have the social interaction from work. I miss being able to tell my wife and kids I love them. Not being able to talk is very hard.

A care group from my church gave me a tablet to help me talk and it got a lot of use that night. So thanks again for your gift. It was so good to connect and talk/type with so many friends and friends from the past as well as people who I don't know who came because they care. There were people who came on behalf of others. It seemed unbelievable to have so much support, encouragement and people praying for us. Craig did a great job as emcee.

Bringing glory to God is what I want and if that means pain now then I need to trust God through the pain. I need to continue to trust God for the future. I am so going to miss being at Timberline when summer camp starts. I have to keep trusting God and that He is in control. This does not make sense. Each day is a new day to trust and take another step. 

There are times I pray for strength to do the simplest of things. I am living in a whole different way. My hope is in God and there is a time I can look forward to with no sickness or pain. But I am praying that God would let me be the father and husband I want to be here and now. I'm praying that God would give me my voice and energy back.

I am thankful for the years I have had use of my voice and talents. They are all from Him. He gives and takes away and I will bless the Lord no matter what happens.

From Evelyn:

Saturday's fundraiser was indeed so very encouraging and uplifting. To see around 200 people come and show their support and friendship was amazing. Family from out of town, friends from so many places, and even some people whom we hadn't yet met who came on behalf of friends who couldn't come, or who came because they wanted to stand with us. Wow. We feel so blessed to see the family of God unite and show us love so tangibly. 

Not only was everyone being there so special (and we realize many couldn't make it, and that's okay!), but the funds raised are also such an encouragement and tangible evidence of God providing (the unofficial amount we've heard is 9-10k!). Absolutely amazing. As I said that evening, it's our prayer that we wouldn't have to use it, that God would heal Daniel, that we would be able to donate it to Timberline where God could use it to reach kids for Christ. But all the same, it is so wonderful to know we have it if we need it!!! 

Thank you so very much to those businesses and individuals who were so generous (there were 103 silent auction items!), and to the many friends and family who have given us gifts before the fundraiser too! You all have been very successful in making us feel loved and cared for! We wish we could write individual thank you notes for all of your wonderfully generous gifts! We pray God would bless you all for how you've blessed us.

As for an update, Daniel is actually at his lowest weight we've seen. The chemo is causing a loss of appetite and his stomach to be unsettled. Even with the anti-nausea meds (which have helped), he's still not able to maintain his weight, let alone gain any. This is very concerning. Losing a few pounds a week  is not sustainable. 

I mentioned this to the nurse at chemo this afternoon and asked her to call Dr. Uhlman. We added another med to Daniel's "catalogue" to help with stimulating the digestive system which also acts against nausea in a different way. Please pray it is effective. We have another check-up with Dr. Uhlman on Friday.

In the meantime, Daniel and I have been invited for a short getaway to Stillwood Camp near Cultus Lake. Daniel has known the Food Service Manager and Executive Director there for years. The kids will stay with my parents, and we'll get to stay a few days in one of Stillwood's cottages with all meals being delivered! They'll make everything special for Daniel too. Wow, we're so looking forward to this. Between not having to prepare meals, care for the kids, and keep the house running, I'm going to have so much time to relax!!! It will be a wonderful time for Daniel and I to connect. 

Certainly a big praise is that we were already approved for the CPP disability benefit. What is supposed to take four months to process only took a week! We don't yet know the details, but basically when EI stops at 15 weeks after the first day of disability, CPP kicks in shortly after. Of course, again, we're hoping we won't need it, but it is wonderful to know if we do need it we'll have that portion of Daniel's regular income to make everyone's generosity go much further. 

We continue to pray for full healing and restoration of Daniel's strength and energy. We have a mighty and able God! Thank you for continuing to stand with us. 

A few photos from the fundraiser:

Some of the wonderful people who made the event happen (thank you to Loly for the snapshots!):

There were many others who helped. Thank you to all of you!!! May God bless you for your service!

Some of what God has been teaching me

This is some of what I was typing to Evelyn about tonight:

From an eternal point of view my pain is small.

I've spent hours getting to this point reading the Bible, praying, and listening to William Lane Craig and John MacArthur.

The pain is big and hard and impossible to live through without God and His perspective. I want to still serve God now and love Him. I want to make each day count. Because if it's God's will to heal me, I want to be so changed I do not want to be who I was; I want to be a better Christian, husband, father, kitchen manager, campfire leader, etc. But I need to somehow make the most of each day when I have very little to give, so when I am given more I will be faithful with the more He gives me.

Also, I've seen father/son teachable moments come and go and I can't do anything. This happens daily. I hope this is God teaching me to have a sharper eye for them and to not miss them when I have energy and can talk again.

Stay the course

Today we're back at the Abbotsford Hospital and Daniel is getting the next round of chemo. 

Here Daniel is resting while the chemo goes through his IV. He's sporting his new sleep headphones -- they're built into a fleece head band and don't hurt his ears while he sleeps. They also make a great eye mask. He found them on Amazon so I ordered them. (Thank you to those of you who have given us wonderful gifts to pay for such helpful extras like these!).

Back on Friday we had our check-up with Dr. Uhlman. We told her that we haven't been seeing any improvement from the Cisplatin, and that, if anything, Daniel's throat/chin area is more swollen. She did an exam and doesn't know if it's the lymph nodes or the main tumour that is swelling. She also remarked that every time she looks at Daniel's tongue it looks different. 

We asked what the plan is and if it's changing like she said it might a few weeks ago. She said she wants to keep going with the Cisplatin and give it more time to work. It can have a cumulative effect. She doesn't want to give up on it too soon. She said she feels strongly about this. 

Plus, there is a clinical trial that will likely be happening at the end of the summer that she wants to see if Daniel can get in. You can only have had Cisplatin to qualify. But even then, participants only have a one in three chance of getting the trial drug. The control group gets regular chemo. And also studies have shown that this trial drug is only working in 20% of cases, but it is far more selective and thus has far fewer side effects than regular chemo drugs. Apparently, it is a powerful immune system booster.

So, Dr. Uhlman wants to see if she can keep Daniel "limping along" until then, but of course if things get worse she will definitely reevaluate. So, we'll see. Our hope is not in clinical trials or regular chemo drugs. Our hope remains where it needs to be -- in God. 

Last Thursday we had a Skype appointment with Dr. Zubek (amazing technology!). We brought up the Magic Mouthwash again and how the one he's on still isn't as good as the one he had in the ward. It doesn't soothe his tongue as much. 

If you'll remember, his tongue feels like it has jalapeño acid on it all the time; that is somewhat helped by one of his pain meds, but the mouthwash brought him even more relief. 

Dr. Zubek asked us to go up to the ward and get their specific recipe, and then she would send it to her pharmacist who will make it exactly to order. So, after our check-up on Friday, we headed up there. It had been a while since Daniel was discharged! And we were both glad he's been at home all this time since. 

We right away saw the head nurse who had been so helpful before and we made our inquiry. She and the other nurses started looking into it. Then Dr. Uhlman walked up and asked, "Hey, what are you guys doing up here?" They all conferred a bit and then the head nurse said that we'd need to get the recipe from Dr. Mitchinson, the pain and symptom specialist who had prescribed it. Who should walk in at that very moment? Yes, Dr. M.! He pulled out his binder and handed them the recipe so they could photocopy it. Another nurse then talked with the cancer pharmacy to make sure that that was the same one as before (as maybe something could have been added to it) and they confirmed it. The head pharmacist also came in and the head nurse conferred with him a little too.  Plus, our favourite nurse then came in and we were able to visit a little. 

Just a series of coincidences? We know better. 

As this whole dialogue was happening over the course of about twenty minutes, Daniel and I remarked to each other how we were seeing God work before our very eyes. I could never have accomplished that with just a phone call to the ward, and tracking down all the necessary people to find all the info that took just a few minutes would have taken several days. 

So, now that it's Monday, we dropped off the recipe at Dr. Zubek's and are waiting to hear back. Please pray that this will help Daniel give him the relief that he needs. Otherwise, his pain is being managed pretty well, and we're so thankful. 

Today is Josiah's fourth birthday! But since we're at the hospital most of the day, we celebrated his birthday yesterday evening with some extended family. It was low key but very nice. 

We continue to pray for complete healing for Daniel in whatever way would bring the most glory to God. The days are very hard, and the nights are even harder for Daniel, but we continue to rely upon God for strength. Thank you for continuing to remember us in prayer. We need it.  

Guest blog and update

A long-time friend of ours from our church wanted to post on our blog to share about an upcoming event that many of you may be interested in but might not know about. 

From Jenny Schweyer:

When someone you know and whose presence you have always simply taken for granted gets diagnosed with stage 4 cancer, you're struck with all kinds of questions, not the least of which is, "why him?"  You suddenly find yourself entertaining thoughts that often nag around the corners of your consciousness, but that you try to push from the forefront of your mind until you get hit in the face with someone else's reality.  Cancer could just as easily strike me.  How would I feel if I was in Daniel's boat right now?  Why does life take such unpredictable turns?  You realize when someone you know, whether well or merely in passing, is facing a serious illness that life is really a very fragile thing, and that Someone greater really has been in control all along, even if you haven't always acknowledged or welcomed it.

 

It's thoughts like these that have motivated a group of Daniel and Evelyn's friends and acquaintances at their home church to rally around them in prayer and support.  One way that we plan to support them in a very practical way is through an upcoming fundraiser that we hope will honour both God and Daniel and Evelyn.  It's a barbecue and silent auction fundraiser that will be held at Timberline Ranch in Maple Ridge, the place where Daniel has spent so many years serving God and other people.  

 

It is our prayer that this evening will be a time of joy and celebration of Daniel's many years of service both to Timberline and to his church, Maple Ridge Baptist.  Most of all, we hope to raise a significant amount of money that will help to alleviate some of the financial stress that the Rempels are feeling during this time as Daniel is away from work, and as new expenses arise as Daniel continues his cancer treatments.  We hope you'll consider joining us:

 

Where: Timberline Ranch

            22351 144th Ave.
            Maple Ridge, B.C.

 

Date: Saturday, June 14

 

Time: 5:00 pm - Doors open

         5:30 pm - Dinner

 

Cost: $20 per person

 

Tickets are available online athttp://ridgebaptist.ca/events/daniel-rempel-fundraising-dinner/

 

We will also be holding a silent auction, and there are some fabulous prizes to bid on, including a one-hour scenic flight over the Fraser Valley, a four-day cabin stay in Parksville on Vancouver Island (ferry fare included), a Pandora bracelet, a quarter-page full-colour ad in the Maple Ridge-Pitt Meadows Times, several theme baskets, gift cards to several local establishments, a one-hour massage and dozens more fantastic items.  We are also accepting donations for the silent auction.  If you'd like more information or wish to make a donation to the silent auction, please visithttps://www.facebook.com/jennyfunderburkschweyer and leave me a message.

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From Evelyn: 

Thank you so much to the team who is putting this event together. It is wonderful to have it to look forward to for the encouragement and support. You all are such a blessing!

Quick update:

Daniel and I are seeing the oncologist for a check up tomorrow. I suspect she'll be changing the chemo drug to a stronger one (both in potential good and bad effects), so we'll see. 

Daniel hasn't improved much from Monday's chemo. He still can't talk and is even more fatigued and sleeps more. He lost a lot of his appetite from the chemo so eating has become even harder. He's fighting hard. 

Please continue to pray for improvements and encouragement for us  both. We still persistently pray that God would be glorified in healing Daniel completely, and restoring him to his ministry at Timberline and his roles as a husband and father.