Please continue in prayer

Daniel still has a lot of challenges. Please keep praying for good rest and sleep, protection from feelings of anxiety and panic, that the abscess would heal and the infection would leave (still on antibiotics). The lower cheek with the abscess is more swollen. Don't know why. Daniel wasn't tolerating his food as well yesterday, and had to stop a few feeds midway through. He needed the anti-anxiety med a few times. It has also been harder for him to take and get full benefit from his primary med, which is topical on his tongue because of swallowing issues. 

All of this is very hard on him and I. It's so hard to see him going through so much. Even his phone is acting up the past few weeks and has been very unreliable in receiving my texts. 

Josiah has had a 102 degree fever for the past few days (don't know why), and so I haven't been able to take the kids for a visit. I wear a mask when I visit Daniel just in case. Kezia didn't tolerate breakfast yesterday at Timberline and threw up all over herself, me, and Josiah during the end of summer service. It's just been so, so hard. 

I'm exhausted with crying out to God for encouragement and healing. Please continue to join with us in lifting Daniel up in continuous and abundant prayer. We so long to see God glorified by delivering him and rescuing our family from this pit. 

God is able, and we need to see Him act in miraculous ways; we desperately need the encouragement. We need to be refreshed. I'm fighting so much anxiety and so many fears. I'm crying out to God even as I write to you. 

Sleeping challenges

Daniel​​ has been having trouble sleeping still, so he is very sleep deprived. The meds they gave him last night didn't help. He's barely gotten more than a few hours of sleep in the past four days. 

Even still, there was a specific answer to prayer. Just this morning I was praying that sometime this week Daniel would be able to walk down the hall and back with his walker, something he hasn't been able to do. 

He did that very thing this morning. Praise God!

When the kids and I visited him this morning, he was up in his chair, but oh, so worn out. He had some blood taken once he was back in bed. The doctor wants to make sure there's nothing lurking (pneumonia, etc.). Though the nurse last night said she couldn't get over how clear his lungs were when she checked them with her stethoscope. 

Just before we were leaving, he was coughing a lot (after cleaning his ears; it's been a while), his tongue bled and his eyes were watering. I called the floor after getting home and the nurse said he'd settled again and was just going down for the chest X-ray the doctor had ordered this morning. 

So, I was a little upset again seeing him like that. The kids had a late lunch because I needed to pray and rest. 

A friend visited him a little while later and Daniel was somewhat agitated and confused. I called the nurse a little while ago and she said he was sleeping, and without the help of meds! Praise God for that! 

Please pray that he gets a lot more good sleep and doesn't need sedatives. Pray that he will be strengthened and that the tumour would continue to decrease in size, and that we would see significant reduction even this week. Please pray that he would be encouraged and uplifted through the long days away from home. Please pray that we would both have the strength we need to keep running this marathon. 

Something I'm now specifically praying is that Daniel would be cancer-free within a month -- asking boldly yet humbly. For I know God is able, and the specific prayers He has been answering even just today give me that boldness. 

His will be done. To God be all the glory!

Significant improvement, praise God!

I visited Daniel again last night with a friend. He was much less agitated with the new sedative. He was still restless and not sleeping much. While Christa prayed, however, he settled right down and was totally restful, and a little later was still able to respond to the nurse as she did some of his oral care. So encouraging.

Overnight, he slept for a few hours, but became a little more restless again after the nurses had to change his bed linen a few times. The sleeping pill didn't help. 

This morning, his nurse said he was smiling, asked for his breakthrough med, and was like he was when she had him earlier this week. 

I just saw him after church. He's alert, back to himself, just really tired and still feels off from the sedatives they gave him. So good to see him so much better! Praise God! 

He was up in his chair, shaved, and even rubbed my feet as I lay on his bed. He wrote it was priceless to have me there. 

He asked if he just had chemo, because that's how he feels. I reassured him and told him enough about the past few days to explain why he feels groggy and gross. I'm not telling him details, not until he's much more healthy. I just said he's really sleep-deprived and needs to rest a lot so he'll feel a lot better. 

Thank you all so much for your prayers. They are being answered. Please keep praying that the off feeling and jittery muscles he's dealing with will settle down, that he'd be able to get good rest, and of course that his primary med would continue to kill all the cancer! May God get all the glory!

Please be in constant prayer for...

Please pray for Daniel. If you're not on my Facebook, here's what's been happening. It has to be short, I'm exhausted. From the encouraging news on Thursday, Friday afternoon Daniel started to become confused, he was hallucinating, and panicky about breathing. It was awful. They calmed him down, and since then have tried different sedative meds to keep him calm. He's still fidgety, but a new med this afternoon seems to be helping more than the one it replaced. 

We don't know what is causing this, and we don't know if it's reversible. Please pray that it is!!! That he'll pull through and become alert, calm, and rest well again. Pray that the doctors and nurses would have the wisdom to find out what is causing this. 

He has a nurse staying with him all the time now -- I've asked and insisted on this, so I can be home and rest. 

I am utterly emotionally exhausted and physically too. Please pray for us, that God would sustain us, preserve him and restore his health, and carry us through. We so desperately need God to make His power known and rescue Daniel, being glorified by doing so. 

I am struggling with fears and worries. Please pray for peace and comfort, and strength and words to pray. And please let me know that God's people are praying. That would be so encouraging. 

"Oh, God, please have mercy on Daniel, and don't take him home yet. Please restore and heal him, and give him a long life with his family. You are able!"

The beginning of the end of the cancer?

For most of the week since my last post, Daniel has been faithfully doing all he can to gain his strength back. He’s been sitting an hour or so at a time in his special wheelchair, using his walker either out to the hall or just to his door, and pulling himself up to a sitting position in bed – all things he couldn’t do not so long ago. He is working hard!

 

[If you have a low gross-out threshold, you might want to skip this next part…]

 

The main point of concern since last Friday was a redness that started to develop on the lower right of his chin, on the swollen oedema. The doctor monitored it, and since it was still there but slightly more spread out on Monday, she started Daniel on antibiotics. (Thus, I started him on probiotics). We were all wondering what it could be, and an infection was high on the list of possibilities, hence the antibiotics.

 

Yesterday, the redness had developed into a small roundish bump (one inch in diameter or so). Today, the bump had quadrupled in size to where it looks like a half a golf ball-sized mound on top of the already swollen oedema. It is officially an abscess. The skin had burst and is oozing (yuck, I know, but cancer in general isn’t pretty). So, clearly Daniel’s body is trying to expel something – something his primary med does a very good job at helping the body do. So, that’s why this wasn’t a surprise to me.

 

In fact, I view it as a very good thing. Why? Because Daniel’s oedema seems to be draining towards the abscess. That is the physical sense Daniel “said” he has; that starting from his jaw under his ears, he has the sense that the oedema is draining down towards his chin. If you’ll remember, oedema is inflammation, fluid retention, and possibly toxin storage as the body reacts to the cancer. It seems his body is finally ready to expel that junk, and is doing so aggressively.

 

So much so, the doctor asked a surgeon’s opinion, and he suggested an incision to drain it. From talking with another doctor, it sounds as if that option is actually a general anaesthetic surgery and comes with its own risks. So, I asked if I could treat Daniel more naturally first to see what happens, to try to avoid the surgery. So, please pray that a less aggressive treatment will be effective. I fully realize that the incision surgery might be best, because we all want to avoid sepsis (blood poisoning from the junk in the abscess that can be fatal). So, we’ll see what the next day or two brings.

 

Even with all of that, today was a very encouraging day of progress for Daniel. This morning he texted me that he was feeling encouraged. His tongue is smaller and he was able to clean underneath his tongue for the first time since March or April! That’s huge.

 

Plus, while Daniel and I were discussing his abscess with the doctor this afternoon, something extraordinary happened. The doctor had a look at his tongue, we kept talking, and Daniel was writing down answers to questions. The doctor asked him how his tongue felt. He wrote that it felt “soft and a mush ball.” And we were a little confused. He was working on feeling around with his tongue for a minute, holding up his hands to pause us as he assessed how his tongue felt. He then turned on his side, and then forward again with his eyes wide and a look of surprise and wrote this, “Free. I just swallowed a mass.” We were again confused, and after some clarification this is what had happened: Daniel had worked free from the back of his tongue a large mass of dead tumor! He wrote that he noticed a lot more room there now! The doctor was shocked and we were all amazed at what just happened.

 

[Okay, the squeamish can start reading here again…]

 

This is a direct answer to prayer. Since the beginning of this week, I have been praying specifically and fervently about this very thing – that we would see encouraging progress regarding the size of Daniel’s tongue tumor. The reason is, my research has told me that, once you see the size of the main tumor getting smaller, that marks the beginning of the end of the cancer.

 

This is extremely encouraging and God gets all the glory for that encouragement! He knows every cell in Daniel’s body, and is able to orchestrate His purposes at the sub-atomic level. What a mighty God we have the privilege of serving!

 

Seeing this progress is also all the more reason to keep praying that God would continue to glorify Himself by eradicating all the cancer in Daniel’s body and strengthening Daniel more and more, returning him to full health. We long to see God glorified in this way, knowing that He ultimately knows best. We are trusting Him in everything and certainly not presuming we know what will happen. Only God knows, and while that remains hard, it is for our good.

 

And so, we press on in faith, exalting God for the strength and encouragement He gives us, and humbly requesting that God would choose to glorify Himself by restoring Daniel’s health and our family so that together we may continue to make known His power and wonders.

 

He is able and He is sovereign.

Tuesday morning: some cuddle time with daddy. 

Wednesday's visit: playing 3D chutes and ladders!

The past week...

Over the past week, Daniel has continued to work hard to transition with the trach, battling mucus and coughing fits. Keep in mind, beyond the sensitivity and tenderness from the new incision site in his neck, swallowing is painful as his oesophagus wall rubs against the new pipe nearby in his windpipe. The mucus has thankfully settled down noticeably so his breathing is more relaxed for longer stretches.

 

The other biggest day to day challenge still is alertness. I haven’t gotten a lot of communication from him lately because he’s just not with it enough to even grab his phone, unlock it, go to the message app, and then write something coherent. You and I take all that for granted – all the time. But between the fatigue from his illness and post-surgery recovery, dopey-ness from possibly several factors, and his existing dyslexia, he’s up against a lot. Nonetheless, he fights so hard.

 

And so I’m fighting hard to help him solve some of that problem. I’m trying to find out what we can do to minimize the dopey-ness he’s dealing with. It could be from several things – chemo brain fog, too much pain med, and an over-medicated feeling from the primary med he’s now on. Both chemos he had are common culprits for causing serious brain fog (when you can’t focus or multi-task, you lose your train of thought, can’t think of the right word, etc.).

 

Basically, I found out in further research the chemo he was on (in May/June) tends to kill more brain cells than it does cancer cells. The oncologists and info sheets they give you don’t tell you that. It’s only just recently even being accepted as a side-effect, as they have always blamed other factors. Chemo can also cause nerve damage – causing “shorts” in one’s firing circuitry. These side effects can be short term or last a few years, depending on the body’s ability to repair the damage.

 

The good news in all of this? Daniel’s primary med can take care of that and help his body heal. It promotes the growth of new brain cells and repairs nerves by restoring the myelin sheath – the insulation on the nerve wires, if you will. It’s just another thing it does as it works with the body’s systems and not against them. We’re already seeing its God-designed restorative effects, but more on that later.

 

As for the other possible factors to Daniel’s dopey-ness, the Dr. and I continue to work on tapering Daniel down on the gabapentin. He’s now down to 300 mg – just a month ago he was at 2,700 mg! While gaba is an effective drug, it is dangerous and dependence-causing. You have to wean off of it very slowly to avoid powerful withdrawal. The Dr. asked yesterday about Daniel’s alertness since the previous few decreases, and we all noticed an improvement. She seemed excited that decreasing his dose seemed to be helping (when do they ever get to decrease someone’s dose?), but she also seemed to give the impression she thought it was her ideaJ. His pain is still being well-managed.

 

The other possible contributing factor is a feeling of being over-medicated from the primary med. I did some more research (big shock, I know), and came across a popular suggestion to take a natural supplement that boosts a compound the brain already makes. But because it’s natural, the hospital doesn’t supply it, nor had anyone heard of it. So, I had to talk with the Dr., who spoke with the pharmacist, who then spoke with me, and then she talked to the Dr. again, who gave instructions on permission to use it, and then the pharmacist had to send it down to the pharmacy for proper labelling, and then the nurse could give Daniel his first dose!

 

So, all of that rigmarole would likely take several days. When I brought the supplement in, the pharmacist was at the nurse’s desk, and then the Dr. “happened” to phone for her re: the supplement, and then it was sent down to pharmacy and Daniel’s nurse went herself to pick it up! Done. An answer to prayer right there.

 

There hasn’t been a huge immediate improvement since Daniel started the supplement, but that’s still significant. My purpose of giving him the supplement (being non-toxic), was to see if it helped, and if not then I know it’s the pharmaceutical meds he’s on (that are no longer working on pain) and/or chemo brain fog. It’s all about eliminating possibilities. Nonetheless, it’s good to take the supplement as it helps with memory too.

 

Just yesterday, along with improved alertness, Daniel noticed two other significant improvements. Firstly, he found he was able to rinse better than he has since around March. While he can’t pinpoint the reason why he finds it easier, it’s a very encouraging step. If you’ll remember, Daniel’s tongue is a large, swollen immovable mass in his mouth. The nerves have been covered in cancer (if not invaded by it), and his tongue extends between his jaws so he has to keep them open all of the time. That is why rinsing has been such a challenge. I’m sure you can at least try to imagine how difficult that would be. So, an improvement with even a routine thing like rinsing is very good news.

 

Secondly, Daniel found he was still hungry right after his lunch tube feed. That means his appetite is increasing! That is a great sign, especially considering Daniel is so very frail right now. Chemo can cause anorexia because it destroys the body’s ability to absorb food. That has been Daniel’s challenge. Not to mention the effects of the cancer itself.

 

So, after a few conversations with Daniel’s dietician, we all decided that adding a fifth meal to Daniel’s day is the best thing to do. The dietician wanted to just add another tetra-pak of Nestle Compleat (which the hospital is providing at my request; while it still has some corn syrup in it, it at least has real food in it too, unlike the Ensure or Boost chemical junk the hospital defaults to because it’s cheap; but I digress). I didn’t want that much Compleat added, plus I didn’t want the meal infusions taking even longer (for Foodsafe reasons because the main food I’ve bought him doesn’t have preservatives in it – on purpose). So, wow, long story but suffice it to say we settled on a good decision.

 

On an aside, all of these decisions, discussions, research, and general care coordination are what constitute my days now; that and taking care of two small children and a household. Maybe that gives you a better idea of what my life is like during this season. I’m so thankful God gives me the wisdom and strength I need!

 

So yes, we continue to see, by the grace of God, more encouraging progress. Thank you for your prayers and faithfully interceding on our behalf.

 

A request I have is could those of you who are local and available please remember to fill out the Google calendar I mentioned in my July 10^th post? The main thing I need right now is child care while the kids are napping in the afternoon or in bed in the evenings, so I can go visit Daniel on my own. I’ve taken the kids for visits once or twice a day (it’s so great having Daniel closer), but it takes a lot of energy to manage them during the visit and I don’t get to spend more than a few moments of quality time with Daniel or stay very long. A friend has been taking the kids for an all day play date every Thursday and that has been great! So, if you’re available, please sign up. I’d just be gone while they’re sleeping – easier on them if there’s more routine.

 

Thank you.

 

And thank you to so many of you who continue to help out in so many practical ways.

 

We continue to trust God for the future, and pray His will would be done; that He would be glorified in and through us, and that He would be most glorified in fully healing and restoring Daniel. We trust Him for today and the future.

Closer to home

So, after what was supposed to be 24 hours at Surrey Mem. that turned into nearly five days, a doctor at Ridge Meadows agreed to admit Daniel so he could be closer to his family. Praise God for this!

We were picked up by ambulance at 8pm on Tuesday. By the time Daniel was settled in the ICU, it was 10:45pm. A big thank you to Margaret who put herself on call and came to drive me out to Abbotsford to get my car. I got home shortly before midnight. A long day after a long "long weekend!"

Since then, Daniel has changed rooms a few times (as per the hospital powers that be), which tires him out all the more. But I think now he's pretty settled on the medical floor. I even got a chance to re-put up the photo wall that friends of ours made for Daniel. 

Getting used to the trach is a continuing process for Daniel. He's doing really well, though it is very weird for him that he can no longer blow his nose. Air doesn't pass above his collar bone anymore. He coughs out of the bottom of his neck. Yeah, really strange. 

The biggest challenge for him right now re: the trach is mucus control. While he's been managing that for his mouth for months, now he also has to manage mucus down the trach tube into his windpipe too. 

There's one type of suction for his mouth, and another built-in suction that he feeds down into his windpipe, presses a valve and slowly draws the tube up as it suctions. It's very uncomfortable, but as the inflammation from the surgery lessens (which it already is doing), mucus will decrease too. 

Yesterday and today have been busy for me, getting Daniel settled with meds, food, instructions for nurses, and talking with various doctors and specialists so that we're all on the same page. Plus I picked up the kids from my parents yesterday, took them for a visit to see daddy, and got them resettled at home. 

It's all been a lot of work for me, and I'm definitely feeling the stress of the long days spent coordinating, advocating, and caring for my family, but I'm relying on God to give me the strength. This is what I'm called to do during this season. 

Please continue to pray for encouraging progress when it comes to Daniel's cancer treatment, for strength for us both, and for protection from any further complications. 

Snuggling on Monday at Surrey Memorial. He's been wanting to shave the beard for weeks as he loathes it (but the energy to even shave just hasn't been there, plus it's painful around the edema). So, today I helped him with that. He feels much better! 

Still waiting, but also progress.

We're still at Surrey Mem. because Abby doesn't have any beds available. It will be a third night now being here. 

Even amongst all this waiting, God has still given us a major encouragement today: the new med Daniel has been on the last three weeks is taken orally -- topical pain relief but also cancer treatment. As I was giving him the med this afternoon, he opened his jaw further than before. Thus, I was able to get a better look at his tongue. Normally, I avoid looking at it because it's been a swollen, mangled mess of black, yellow, red, and pink. 

Looking at it today, while it's still very swollen, the surface of what I could see of his tongue looks almost normal! A nice, even shade of pink. Wow, amazing!!! Praise God! I gave Daniel a mirror and he agreed with me about the difference. 

The physiotherapists also arranged a special chair for Daniel so he was able to sit up for 45 min. this afternoon. The past week has kept him in bed, so that was good to see. He was pretty out of it, and it took a lot of work for me to keep him alert so he wouldn't fall out of the chair, but it's important he made use of those muscles for a good period of time. 

Please keep praying for more encouragements like this! (And that we get back to Abby soon). Thank you!!

The past 24 hrs...

If you're not connected with us on Facebook, I thought I'd fill you in using my updates/times:

Friday, 7:45pm:

Please pray for Daniel. Just experiencing a "scare" (as his nurse put it). We're trying to get Daniel a tracheostomy to prevent an emergency. Please pray he wouldn't have to be moved to another hospital.

8:50pm:

Update on Daniel: Possible airway problems. He still hasn't been assessed all this time because the ent docs have been saying what's the point? Argh. Now they're out of town. Some irregular heart beats. Doctor is worried about him. Starting him on a few meds to try and help. Lots up in the air right now. Having some very hard conversations with the doctor. Please pray.

11:25pm, from Craig Douglas:

Dan has now been transferred to the high acuity ward, mainly so that he can be more closely monitored and so that he can have a trach done in the next day or so. Leanne and I are here with Evelyn, and have seen Dan get moved and settled in to his new room. Please keep praying. Evelyn is staying here for the weekend and needs support and prayer.

The paramedics and nurse transfer team getting Daniel onto the stretcher. 

Sat., 2:17am, from Craig:

Back from the hospital. Dan is being (by now has been) transferred to Surrey. My understanding is that his trach may be a little complicated, and they will have a better surgeon for that there. Evelyn has gone with Dan. Please keep praying for them.

Daniel being loaded into the ambulance for a code red transfer -- "lights and sirens blazing."

5am;

In the post op room with Daniel. Trach went well, praise God!! Staying in recovery at Surrey Mem. for a day or so, then the plan is to transfer him back to Abby, but to a higher care unit. At least that's the last I heard. Things have changed SO much in the last ten hours. Please continue to pray.

9am:

Nurse said Daniel is doing great; better than expected. Got about 1.5 hrs of sporadic sleep. This room isn't conducive to restful sleep.

3:30pm:

Update: catching up on sleep while still in the post op room. The only thing keeping us here is not having a bed back in Abby. (They wouldn't let us hold the bed; I tried and tried). Please pray that a suitable spot for Daniel would open up sooner than expected, which is maybe tomorrow.

4pm: Daniel just had his "cuff" removed from his trach. A next step to getting him transferred. No air leaks means he's ready to go to a ward in Abby. It causes more coughing though. But he's doing okay with suctioning. 

Thank you for your faithful prayers, friends and family. May God be glorified!