It is Well with My Soul

As a young girl growing up in church I learned the words to many hymns and sang along with the adults.  Now as an adult I often sings those songs from memory without really thinking about what they mean.  Over the last year I have really become aware of the words I am singing and what they mean.  One of the first hymns I am sure I could sing by heart was "It is well with my Soul".  I remember loving the different parts, echoes and harmonies you could do.  Recently as we were singing that song it really made me think if I believed what I was singing.  This is how the first verse goes...(just imagine me singing it in your ear!!!)
When peace, like a river, attendeth my way, 
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
It is well, it is well with my soul. 
When I think through our last year, what we are facing right now and even what the future for us might look like can I honestly say it is well??  Although I have moments of fear and doubt and feeling like it isn't fair I think I could still say that yes it is well with my soul.  The only reason I can say that though is because of Jesus and the personal relationship we have with Jesus and the reassurance that we will one day all meet again in heaven.  We pray every day that Isaac will choose to follow Jesus too and we teach him the best we can.  Our life here on earth is so short compared to eternity in heaven.  Life is hard and can be messy but knowing what my future holds means I can truly say it is well with my soul.


Since my last update Rob has completed round 2 of chemo and just started round 3 yesterday.  Round 2 was much better than round 1 after getting some more anti nausea meds.  I now refer to the weeks of each round as the bad week, better week, and good week.  Since Rob is taking so may different drugs he is always fighting some kind of side effect but some are much more manageable then the others.  It is almost a good thing that the side effects come at different times because dealing with them all at the same time would be very hard.  We basically just take things day by day.  Some days Rob needs to rest and can't handle very much but other days he feels pretty good.  I know he feels good if he says he wants to go disc golfing!!  We are learning to take advantage of the good days and over the last few weeks did last minute trips to Fargo, North Dakota with Rob's parents and to Ingolf, Ontario to see Rob's Aunt, Uncle and cousins.  We have also found that planning fun things and having something to look forward to makes the bad days feel a little better.  My goal is to have a time away or fun adventure planned during the "good week" of each round. 


One of the frustrating things for me is keeping medications and appointments in order.  This week alone I have already found 2 mistakes with meds from the pharmacy and a few minor problems with appointment times.  It often feels like a full time job just keeping track of it all and making sure that we don't miss an appointment or important medication. 


Overall we seem to be managing our situation with the support of family and friends and with God reasonably well.  I never would have imagined that I would be sitting in the hospital each week watching my husband get treatment but this is our story and we can't change it but we can make the most of it. 


Tomorrow Rob and I celebrate our 9th anniversary.  Typically couples tend to do something special for their 10th anniversary but Rob decided that we don't know how many years together we have so why wait until the 10th let's make the 9th special.  Rob shared with me that he wanted to buy me a ring to celebrate. He told me what he wanted to do, and while it made me happy it also brought on a waterfall of tears.  We found the perfect ring that has 3 bands to represent Rob, myself and God and that we are joined together even if we physically apart.  Every time I look at my ring I am reminded of the love Rob has for me and that we are bound by our love for each other and God's love for us. 

Please continue to pray for Rob, Isaac and I and our families that we would lean on God for everything we need.  Pray for a miracle in Rob's body and that he is healed even though the doctors don't feel hopeful and for management of pain and side effects.  Pray for hope, strength and comfort each day. 
Love Karen

Our Epic Trip!

I know it has been a long time since my last update but I have a good excuse....we just got back from our epic trip to BC!  We flew to Vancouver and over 2 weeks we made our way east and flew back to Winnipeg from Calgary.  The trip was amazing!  We drove over 2,000 kms and took over 1200 pictures!  A few of the highlights were...
-Seeing the magnificent mountains and being in complete awe of the beauty and vastness of God's creation.
-Rob and I got to Zipline in Whistler and it was amazing! 
-Spending time with some family I haven't seen since I was 5 and seeing some friends that we haven't seen in a while.
-Going whale watching and being 20 feet from an Orca whale.
-Watching Isaac do a ropes course designed for kids-he rocked it! and Rob getting to do a high ropes course in a forest with huge trees.
-Seeing Takkakaw Falls in Yoho National Park.
-Taking Isaac to Drumheller to see the dinosaur fossils.
-Hiking to the summit of Mount Revelstoke.
-Spending 2 weeks with Rob and Isaac without having to worry about appointments.
-Going up the Whistler and Squamish Gondolas and walking across the Capilano Suspension Bridge.
-Driving through the mountains while the clouds were lower than the peaks.
-Seeing a double rainbow over the mountains as we drove.
-Rob trying some new disc golf courses.
-Being blessed and humbled by the generosity of friends, family and strangers.
And that is just to name a few.  It seemed like everyday there was a highlight and something that was new and exciting.  Thank you to everyone who was a part of the adventure and to everyone who helped us financially with our trip.  It truly was epic and unforgettable and we are incredibly grateful for the experience and the memories. I had been hoping to post some pictures on the blog but it won't work.  We are working on making a photo book with our favourite photos so if you ever want to see it just let me know.  We will also post a bunch on facebook shortly.


Coming home to the routine of life after a vacation is hard.  Coming home to face cancer treatment is so much harder.  We arrived home on Wednesday afternoon and Thursday morning we had to be at Cancer Care.  Rob had blood work done and then we met with the doctor that deals with chemo.  We discussed how the first round went and what side effects Rob had to deal with.  We were able to ask for the extra anti nausea drugs we had to get last minute the previous round.  Hopefully by being proactive and taking these pills it will help Rob to feel better then last time.  The doctor was pleased with how the first round went and although Rob did have a number of side effects these are to be expected and the plan is to proceed with the next round.  So round 2 of chemo starts on Monday and unless there is a need to give Rob's body a break they will continue each week until October.  This length of time can seem daunting but we continue to just take it all day by day. 


While we were at Cancer Care on Thursday we also found out that the chest CT scan Rob had a few weeks ago came back clear.  This does not mean we are out of the woods but it is worth celebrating because it means that at this point the cancer has not spread to other parts of Rob's body but is just in his lymph nodes in his neck.  Most often the first place this cancer spreads is the lungs so it was good to hear that we are not at that point yet.  Rob will continue to have chemo as planned in hopes to shrink the tumor and slow it down from spreading.  And we continue to pray that God heals Rob completely and not only shrinks the tumor and takes it all away. 


In order to prevent Rob from having tubes hanging out of his arm or having to get poked with a needle each week we decided that he would have a port installed.  On Friday morning we had to be at HSC at 8am to have it implanted.  Basically they put this little piece of equipment just below the skin by the collar bone which has a tube that is fed through his vein.  From now on each time he has treatment or needs blood work done they go through this little port.  They gave him a conscious sedation and the procedure only took about 20 minutes but Rob was relieved to have it done.  He has to take it easy for the next few days but once the incision heals up he won't even notice it. 


Often the hardest thing I struggle with is the question of why?  Not why did Rob have to get cancer but why hasn't he been healed yet?  We know that we serve a mighty God that can heal Rob completely, however we also know that God does not always answer our prayers how we want Him to or when we want Him to.  We have hope because we know God can do a miracle and we ask for that but we walk each day in faith trusting that God will carry us through whatever we face.  A very good friend of mine was diagnosed with cancer a few weeks ago and we have chatted a few times and she and her husband are asking God the same questions that we are.  It doesn't seem fair to us especially when it is someone who is young and has their whole life to live.  We have to remember though that we were never promised an easy life but if we have a personal relationship with God, we are promised eternity in Heaven where there will be no more pain, sickness or suffering.  Praise Jesus for this promise!


We don't have control over the future but we can make today, in this moment the best we can and that is what we focus on.  Please continue to pray for Rob, Isaac and I and our families.  We could not do this without the army of prayer warriors we have so thank you for walking this journey with us.


Love Karen

What does chemo look like?

Well we made it through the first week of chemo and although it was a hard week we are on the other side of it for now.  A lot of people have asked me about Rob's chemo and comparing it to last time.  In the fall he received one drug every 3 weeks for 3 rounds.  The main side effect was nausea which was managed by medication and although he was very tired, it only lasted for a few days.  This time it is much more complicated and because the cancer has proven to be very aggressive so is the treatment.  This is what a round looks like for Rob this time.


Day 1
-1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
-2 hours of Carboplatin ( this is the one that makes him very nauseated)
-They also give him benadryl, anti nausea and steroid medications.
-After everything is done he is hooked up to a pump (which is the size of a baby bottle) which has a drug called Fluorouricil (AKA 5FU) and he goes home with that for 96 hours.
-All of this takes about 5 hours in total. 


Day 5
- Go to Cancer Care to have pump removed as well as blood test


Day 8
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.


Day 15
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.


Then the whole cycle starts all over again a week later and we will do this 6 times in total taking almost 5 months.




The first week of the round is the hardest for sure.  We had been told that the nausea with these drugs shouldn't be as bad as in the fall so Rob was only given 1 anti nausea drug.  This was not the case for Rob though.  He was very nauseated and couldn't keep any food down at all.  By Friday last week I called the nurse and we were able to get a prescription right away for 2 more types of anti nausea pills to help him through.  The good news is that now we know how it makes him feel so we will be able to get those additional drugs right away for the future.  Rob was also very tired last week and slept more then he was awake for a few days.  Sleep is good for him and he was able to get comfortable and get some good rest...I just had to keep Isaac quiet!!  He still needs a nap most days now but only for a short time.  The drug that he receives every week has one main side effect that is a rash that is almost like acne.  This is a little annoying but it is something you can live with and it doesn't affect his daily activities.  The only thing that we have to watch for is that the sores don't get infected.  The other side effect he is really feeling is from the pump and is sores in his mouth.  I had read about the possibility of these and hoped Rob would not get them.  When he said he had a sore in his mouth I knew right away what it was from.  The sores seem to be getting worse each day but hopefully he gets a break from them before the next round starts.  He is also going to start using "magic mouthwash" again so hopefully that helps.  Side effects are no fun but at least we know what is causing it and hoping it doesn't last long.  So right now we will enjoy a little time with short naps and no nausea until the next treatment starts. 




One of the good things are all the extra drugs they give you on day one is that you feel pretty good that day and then crash hard the next day.  After a long day at the hospital and only an hour at home to eat something Rob was still feeling well enough to come to Isaac's soccer game that night. Isaac was very proud to have his dad there that night and even kicked the ball together for a few minutes.







Since my last update Rob has had some pain relief...praise Jesus!  He was able to adjust the amount of pain meds and although still has some pain it is much more manageable.  He is also seeing Dr Kevin almost everyday and the adjustments are helping to relax the muscles.  He has been able to sleep for more then 2 hours in a row which also helps him feel better.We are very thankful for this and continue to pray for even more relief.  We have a follow up with the pain management doctor this week to see how things are going. 




Yesterday morning Rob went to have a CT scan of his chest.  The most likely first place that his cancer will spread is his chest and lungs so they wanted to check right away.  Please pray that this scan comes back clear and that there are no signs of any cancer in his lungs or chest. 


We continue to take each day as it comes and try to live to the fullest.  Even through the tough times we see evidence of God and are so grateful that we have a Heavenly Father  who loves us and cares for us.  Thank you for all your love and support...God uses many of you to bless us each day.
Love Karen

Big Changes.

If I was going to be completely honest right now the reason that I haven't updated the blog in so long is because I have a hard time putting into words how our week has been.  We don't have good and bad days...it is more like good and bad moments.  We hang on to the good moments and pray through the bad ones. 


This past week we made some decision for our family that are going to help us through the next season the best we can.  One of the big decisions is that I have taken a leave from work.  I have been having a more difficult time juggling everything and going to work has been stressful for me.  There were many times that I was at work physically but my mind was at home wondering how Rob was feeling.  Rob has also told me he doesn't like to be alone lately so where I am needed most right now is with Rob and Isaac.  They were very understanding at my work and I am very thankful for that.  I will keep in touch with my boss and we will take it month by month.  At this point we don't know how things will go with treatment so we will deal with the future when we get there.


The other big change we made this week was Rob started to see a chiropractor that is a maximized living doctor.  Dr. Kevin does not promise to heal cancer but he believes that if we make our body as healthy as possible then we have a better chance of fighting the cancer.  Some of the ideas seems a little crazy and I am not sure that last spring we would have jumped into it however when the medical doctors give you little hope you are much more willing to try other options.  At this point he has gotten a few chiropractic adjustment over the last week and he already can feel a little more mobility in the neck.  Tonight we meet with Dr. Kevin to go over some things as well as talk about food.  One of the major changes is going to be to change our eating habits.  At this point our thought is if there is a chance it will help Rob and it isn't harming him then it is worth a try.  The other part of seeing this doctor is feeling like we are doing something to fight this cancer and not just sitting there and letting it take over.  In the last week or so there is visible evidence that the tumor on Rob's collarbone is growing which is discouraging and causes Rob to want to do something about it.  We continue to pray for healing and that the healthy changes Rob is making as well as starting chemo will shrink the tumor before our eyes.


Last Friday we meet with a doctor who specializes in pain and symptom management.  After a very long wait we were pleasantly surprised with the time the doctor took to be with us.  He had already read Rob's medical chart and knew what had happened over the last year.  He was very attentive as we described Rob's pain and came up with an action plan.  He has increased the pain killers Rob is taking and told us there are many more options to look at if this doesn't work.  Please pray that we can figure something out that works well for Rob and that he can have some relief from pain.  Over the last week there have been times where his pain has been more manageable but he is still in constant pain and it affects his quality of life.  We are thankful for this doctor and will have a follow up with him next week to see how things are going.


This morning we went to cancer care for Rob to get a picc line put in.  Last time he had chemo he was able to do it with just an IV put in each time.  This time he will be sent home for 5 days with a pump that is giving him continuous drugs for 96 hours so an IV is not allowed.  Getting the picc was a little difficult but the nurse managed to get it in on his left arm!  This made Rob very happy because if he feels good over the next few weeks he will still be able to go out and play disc golf.  Tomorrow chemo begins and it will be a long 18 weeks of treatment (although we are taking some time to take our trip to BC!!).  This morning going back up to the 3rd floor of Cancer Care felt like de ja vu.  We are praying that the side effects are minimal but the treatment does even more then the doctors think possible and it gets rid of the cancer for good.  We know the reality of what the doctors at Cancer Care have told us but we keep positive because we have hope and we trust in the Healer of all!  Sometimes it is when the doctors say there is nothing more to do that God steps in and does a miracle.   


This past weekend a good friend of ours took some family pictures of us.  It was a beautiful evening and we were able to have a good time and get some great shots.  Here is a sneak peak of a few of them. We are very thankful that we could do these and will cherish these smiles. 








Last night as we read a devotion together Isaiah 41:10 really spoke to us.  It says, "So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."
God is with us and is surrounding us with an army of prayer warriors.  In the moments we feel that we can't do this anymore or that we feel alone in this we are reminded by your words, cards, gifts, meals, and most importantly prayers that we are not alone at all and that we can do this. Even through hard times God is with us and because of that we have hope and joy. 
Love Karen

Chemo....again.

This week has been a very tough and emotional week.  I sometimes am not sure how each day I have gotten out of bed and embraced the day.  I have started to say to myself each morning "This is the day the Lord has made, we will rejoice and be glad in it."  Each day we have is a gift and we need to enjoy it even if our circumstances are hard.  That being said even in the moments of tears, and sadness there have still been moments of laughter and joy and we cling to those.  We pray everyday for God to do a miracle in Rob's body and that the doctors will be blown away by what God has done. 


On Wednesday the phone rang at 8:20am.  Without even looking at the phone I knew who it was and I dreaded what he would say.  It was Dr.Nason and he was calling to say the needle biopsy has come back with positive cells for cancer.  As much as we knew this was likely we were hanging on to the hope that maybe they were wrong and that is what we were praying for.  It was a tough day just realizing now what we faced and knowing that Rob's cancer is now considered incurable. 


This morning we went to Cancer Care to meet with the medical oncologist (chemo doctor) and Rob had blood work done.  We knew that surgery was not an option but thought that some radiation was a possibility but today we learned that is not the case.  Chemo is our only option and it is going to be tough.  The goal of the chemo is to shrink the tumor and prevent it from spreading quickly and to take away pain to improve Rob's quality of life.  The doctor we saw today is more of a pessimist than some of the other doctors and it doesn't always sit well with me.  We know the reality of our situation but we also know our God is bigger and if it is His will he can heal Rob and give us many more years together.  Rob is ready to fight this as hard as he possibly can and we hope and pray that this doctor will be shocked at the outcome. 


Chemo will be 6 cycles that are 3 weeks long each without a break in-between.  He will have 3 different drugs this time and so the side effects with be more intense.  He will have to go for chemo every week but each week will look a little different and he won't get all the drugs every time.  The other complication is that Rob either needs to have a port or a picc line so that they don't always have to find a vein.  There are pros and cons to both of these but over the long term we have decided to get a port.  We also had a long conversation about Rob's dream trip to BC that we have planned (thank you to all that are making that happen!).  The doctor wants to get chemo started as soon as possible so we have decided to have one round of chemo and then take the trip with some modifications. 


This seems like a long daunting road to be going on but Rob did it once and he can do it again.  Please pray with us that the drugs would do wonders and shrink the tumor completely, that the cancer does not spread anywhere else, that Rob's body will stay strong and he will not get any infections while on chemo.  As I think back to chemo last Oct/Nov I start remembering all the bad parts of being on chemo and having to watch Rob go through this.  Please also pray for strength for me and that I am able to be the best support to Rob. 


Rob is still having pain in his mouth and we still don't know if that is just from the surgery or if it in fact another tumor.  The doctors said they would watch it and see what happens.  We hope that whatever it is that the chemo gets rid of it and that next time they do a scan it is gone. 


He is also having a lot of pain in his neck and it is really affecting his quality of life.  Today he was given some pain killers that are a little stronger which is good but they also have side effects.  Next Friday we are meeting with the pain management team and hopefully they are able to figure out the best pain relief for Rob with the least side effects.  Please pray that he is able to sleep better tonight.  We both have had a few bad nights and it affects how you feel all day.  I am really hoping tonight we both have a good restful sleep. 


So our next step is to wait for the nurse to call and confirm dates for the picc line (we are going with a picc for this one treatment) and for chemo to start.  Plus we see the pain management team to get that under control. 


We continue to take it one day at a time because that is all we can handle.  Thank you for all the love and support we have received over the last week especially.  This is a hard journey to be on but we are surrounded by family and friends who love us and, although that doesn't take the pain away, it sure makes it easier.  Sometimes I wish I had the energy to thank you all personally but I can't so please accept our deepest thanks. 


Psalm 145:6  says "Your awe inspiring deeds will be on every tongue; I will proclaim your greatness."


Love Karen

God of the impossible.

Today was a day that I have had nightmares about and it came true this morning.  We met with Dr Nason and he told us the news we had feared since Rob's diagnosis.  They discussed Rob's case in conference this morning with the whole team and after seeing the MRI the consensus is that the node by Rob's collarbone is likely positive for cancer.  They do not have the needle biopsy results yet but basically those results will likely just confirm what they already know.  He said that if it does show up as positive that it would be considered incurable because even after the aggressive treatment they were not able to get rid of the cancer.  Surgery is not an option because it would not be able to fix the problem.  They would likely be able to treat it with radiation and possibly chemo to slow it down but would not be able to get rid of it. The spot in his mouth is still a concern and what to do with that is still a question.  I asked if the node on the collarbone could be something else and he said not likely. So now we wait for the biopsy report to come back and once they have confirmed it a treatment plan will be discussed. This will happen sometime in the next week. A friend asked me today if the node could come back negative.  According to the doctors probably not but we know that God can do anything.  We face the reality of what we were told today but we still have hope in a God who can heal and who promises His children eternity in heaven.  After Dr. Nason left the room we just sat there and cried.  We are broken and sad.  We don't know what the next few weeks hold but we were told to take it day by day.  We know we have today and we need to enjoy the day and our time together as much as we can.


Rob prayed this morning for God to do the impossible and he was hoping the impossible would be good news today but maybe the impossible will be that when the doctors say there is nothing else they can do that is when God steps in. 


Rob has also been referred to the pain management team at cancercare so that they can help him figure out the best pain relievers he should take.  He is in quite a bit of pain in his neck and mouth.  I know that it is getting worse because he has taken some T3's the last few days and he is not a fan of those. 


I don't even know how to ask you to pray but I do know that we continue to need an army of prayer warriors surrounding us.  We don't know if we have months or years but we pray that God would be glorified with every moment we enjoy together. 


Love Karen

Not the news we wanted to hear.

Yesterday we went to see Dr. Nason to get the results of the MRI.  The appointment was not until 3:30pm but I was feeling completely calm and relaxed about it and was convinced we were going to get good news.  Unfortunately we did not get the good news I was convinced we were going to hear.  Dr Nason came in and told us right away that the MRI was showing similar spots that the CT had shown and it was concerning.  The MRI shows more details then the CT and it was not ruling out that the suspicious spot could be a recurrent tumor and might not just be from the surgery a few weeks ago.  The other thing the MRI showed was the spot on Rob's collarbone that is very painful, swollen and hard was presenting like a lymph node that could have metastasized.  Given the location of this spot they were able to do a needle biopsy right away to test the cells.


So we left the appointment yesterday will more questions and concerns then we came with.  The team of doctors and specialists need to meet to put all the pieces together and discuss what the best treatment plan is and what all of this means.  On Thursday morning this week the whole team will meet to look at all of Rob's films as well they will have the needle biopsy results.  We have so many questions and so many scenarios are running through our heads.  I have imagined being told it is nothing serious or the worse possible case and everything between.  We have an appointment on Thursday morning to hear what the team has discussed. 


Last night Rob and I were sitting on the couch quietly and I asked Rob what was going through his mind.  He quickly said he was thinking that God is good.  In that moment even I questioned his response but very quickly changed my thinking.  Life doesn't always go as we think it should but I guarantee that there are always blessings to be counted and evidence of God.  We are scared and do not know what the future holds but we do know the God is good. 


Please pray
 -for a miracle and for complete healing for Rob.  I pray each day that we get to share a long life together here on earth. 
-that the needle biopsy comes back clear of cancer. 
-for relief of pain for Rob. 
-that the spot in his mouth is not a recurrent tumor. 
-for peace and strength.
-that God would be glorified through this tough journey


I will do my best to update you on the results on Thursday.
Love Karen