The last 24 hours and an update from my sister

My sister Janet just finished writing a blog post for me and my intention was to post it and not add anything.  However given what the last 24 hours have looked like for us I figured I needed to add something to give you an update.  Yesterday Rob had a pretty good day for him and manage to stay up and visit with a few friends.  Last night he went to bed like normal and a little bit later Sarah and I headed to bed.  Before we even managed to fall asleep we heard a huge bang downstairs.  Let me tell you we jumped out of bed and ran downstairs so fast!  Rob had quietly gotten up to go to the bathroom and his legs had given out and he fell on his bum and then back on his head.  Thankfully Sarah was there to help me and after a bit we managed to get him off the floor and back to bed.  As you can imagine after a wake up like that we couldn't fall asleep very well and slept on the chair and couch right outside Rob's room.  Rob and I had always said that I would try and keep him home as long as I could but I knew over Christmas we were getting closer to needing help.  With the fall last night and the added confusion he has been experiencing I finally made the call this morning and was told there was a bed available (this is not always the case).  So after an agonizing wait the stretcher service came and picked us up to take us to Riverview Palliative Care Centre.  Leaving the house with Rob for the the last time was just heart breaking.  I know this was a good decision and it the best place for Rob to be however it was very difficult.  Rob has a great room here at the end of the hallway and we have made ourselves at home.  In speaking with the doctor today I know that they agree Rob should be here and that he is progressing as they have seen before.  I was also told I should spend the nights here as that is when the most confusion happens and that I would be the most calming voice to him and that likely he doesn't have long.

Tonight is new years and many people are out celebrating the new year and looking forward to 2016.  I am sitting here beside my dying husband and my childhood best friend Sarah wondering what the year holds for me.  I certainly never imagined this however I cannot wait for Rob to get to heaven and be pain free and be face to face with his Saviour Jesus.  Please keep praying for our family and extended family and friends as we still have a long road ahead.
Love Karen

Here is the beautifully written update from my sister....

As a member of Karen’s family, living out here in Ontario may only be a few hours away by plane but it may as well be a few days away. All of us here in Ontario are aching for Karen and her little family. We hope and we pray for them, but we long to also do some of the daily practical things to help Karen, Rob and Isaac. The kind of things you automatically want to do for someone when they’re sick- make meals, walk Isaac to school, do laundry, etc. We feel helpless out here.

When the news came that Rob would be stopping his radiation treatment because the cancer was not responding, our family was devastated. Our hearts were so heavy. We felt we really needed to get to Winnipeg to show our support, lend a hand, provide some company and most likely see Rob for the last time. Ever. 

My trip was booked for early morning on December 6th- late afternoon December 8^th. It was the most time I could be away from the bakery at this critical time of year and I was so grateful for the opportunity to go.

When I arrived at Rob and Karen’s I gave Rob a quick hug and a hello before we rushed off to church. I was surprised at how much smaller and more fragile he was. I almost felt as though I might crush him if I squeezed too hard.

When we were at church the love that people had for Karen, Rob and Isaac was so visible. My sister Kathy, brother-in-law Kevin and I hung off to the side nearly in tears as we watched the flow of hugs and encouragement to Karen. It was deeply touching to see the love and support of their church family in front of our eyes, as well as to know about the many other practical forms of support from the church such as the meal train, the housecleaning, the visits and the financial support.

People of Rowandale church in Winnipeg, let me just say to you right now that we owe you a debt that we can never repay directly. You have gone above and beyond in treating Rob, Karen and Isaac like they were dear family members of yours. To everyone reading this blog, let me impress upon you that this is what Christian love is. This is how a church really works, how it was meant to be. 

What continues to impress me is that they keep it up. The meals keep coming, the visits keep coming, the financial support keeps coming, they are still held up in constant prayer. Thank you. Thank you for loving them in ways that we can’t possibly right now.

What I saw in Isaac during my visit: 

Since my own kids weren’t with me during this visit I was able to spend more one-on-one time with Isaac. What I see in Isaac is a little boy full of wonder and life. He has energy to spare and never hesitates to express himself. He puts everything into everything he does. He is emotional, but he shows his emotions- this will be both good and bad for Karen on the road ahead. She will know when something is bothering him- which is good, but she will also have to deal with his intense emotion while dealing with her own grief. 

What I saw in Karen during my visit:

Karen is a warrior. She vigorously fights for her loved ones and works tirelessly to help and support them. We are all impressed by her positive attitude and will to keep going. Karen gets her peace from God and her rock-hard faith stands firm that God will get them through this. The miracles she has seen in this journey keep her going and the angels God sends to physically be with her help to keep her spirits up. 

But every warrior grows weary and Karen is at the end of a long hard battle. I have no doubt that her friends and family will continue to support her by just physically being there with her.

And finally, what I saw in Rob during my visit:

When I visited at the beginning of December I was lucky enough to see Rob at one of his best times. He bowled with us on Sunday, stayed up late and played cards that night, then on Monday we all went to Jack Pott’s (which is like Chuck E. Cheese for those of you in Ontario). He participated 100% and kicked all of our butts at everything. He was smiling, laughing and having conversations with us. He was thankful for the time he could spend with us. 

I never heard him complain once. I did hear him say how much he was enjoying everything. He said he enjoyed being out, he enjoyed hanging out at home and he even commented a couple of times on how he enjoyed his pureed dinner. Think about that for a moment- chicken, rice and vegetables- completely pureed- he was thankful. It impressed and saddened me at the same time.

When Rob found out about his cancer in the beginning, he did struggle with it mentally, he had good days and bad. The longer he had it, the more he seemed to dive into his Bible. He had to learn to accept that his looks changed and his speech changed after his first surgery. It would be hard to look and sound different than what you were used to. To have people not understand what you were saying some times, to have to learn how to speak and swallow again. And that was earlier on. To have several setbacks this past Fall and to ultimately learn that the cancer was progressing despite and even during the treatment. Devastating, right?

Despite all that, the Rob that I visited with early this December left such an impression on me. I swear, his peace was palpable. Complete peace. When I hugged him goodbye for the last time there were things I wanted to say to him but you just can’t get them out in a moment like that. His body was dying but his spirit was so alive.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

These days Rob has very little time left. His body is in the final stages, breaking down moment by moment. It’s hard for Karen to watch day by day. She has to be “on guard”- prepared at any moment to jump into action if his health fails, but she also has to be patient and somehow enjoy even these last few moments.

Pray for Karen. Pray for Isaac. Pray for Rob’s family as they too spend their last moments with Rob. Pray for our family.

Jesus never promised us that life would be easy, in fact He warned us that life would be hard. If He did promise us a life without suffering then it would be a no-brainer. Millions, even billions of people would “become Christians” but would they really be choosing Jesus? Jesus wants us to choose Him and what He does promise is peace despite life’s hardships and salvation.

Rob has peace and we have peace that he is going to Heaven. When he gets there he will be free. When he passes he will truly be able to sing “It is well with my soul.” 

Palliative Care

I have been wanting to and thinking about writing a post to update you all but to be honest with you it feels like a very overwhelming task.  How on earth can I sum up in a few paragraphs how we are doing and what we face each day?  Plus I often feel like I have so many things that need to be done and I just don't the time or brain capacity to accomplish these things.  What I do know is that there is a huge number of people praying for us and I want you to know how you can pray for us so I will do my best!

No one really know how much time Rob has or how things will happen so it is all just a guess.  The palliative care team have been working with us to be as prepared as possible for different scenarios especially with Christmas coming.  Each day we get a phone call and usually a visit from a nurse to check on Rob.  We have also had a doctor come almost twice a week to our house which has been so good for Rob as he can sit at home and be comfortable.  The palliative care staff that we have been in contact with so far are wonderful.  They are very compassionate people and although they have to discuss very difficult things with us they do it in the most kind way possible.  We feel that we are in good hands with the palliative team.

I have been asked many times over the last few weeks if I still have Rob at home and the answer is yes.  Right now we are able to manage his symptoms at home with the help of the doctors and nurses visiting regularly.  There will likely come a time when he will need to go to the hospital or hospice but right now he will stay home.  Sometime in the next few days they will be bringing a hospital bed into our home to make sleeping easier for Rob.  I know that this is the right thing to do however I hate that the new bed will have to be on the main floor and that our room is upstairs.  Just another reminder about how hard this all is.  Rob and I have had so many conversations in the last few weeks that a 30 year old couple shouldn't have to have.  This usually involves many tears but they are good for Rob and I to talk about while he can.   

The doctors would say that the cancer in Rob's body is progressing.  There is no way to really know exactly how it is growing however there are signs they know to look for.  In the last week Rob has had a harder time swallowing and this is because the tumor in his mouth is growing and pushing the flap up causing Rob to gag.  Eating is becoming more difficult and the focus is now just making sure he has enough fluid.  There has also been some major changes to Rob's pain management and although he still has waves of intense pain it seems to be a little more under control.  Rob is also getting more and more tired and has little pockets of energy to do things.  This means we need to plan visits and outings carefully to make sure that he doesn't have too much on in one day.  Overall I would say that things feel like they are changing very quickly.  Like I have said before watching someone you love suffer is an awful thing.  I pray that Rob is able to enjoy many more days with us however when he is not able to enjoy them anymore I hope Jesus takes him to heaven.  

Rob has decided to continue to do some natural treatments over the last few weeks.  Although we know that only Jesus healing him will actually make him all better we feel if the natural treatments give him more energy and make him feel good it is worth it.  He is going 3 times a week right now and will continue with that as long as he feels up to it.  

We have been blessed with some visitors over the last few weeks who have come to see Rob, Isaac and I but also to help around the house with cooking, cleaning, wrapping Christmas gifts, walking Isaac to and from school and all sorts of other things.  It has been so good to see some family and friends that we haven't seen in months and the help of having an extra set of hands in the house all the time is such a blessing.  

Although this is very difficult and often feels overwhelming we have still had some good times.  The party we had for Rob on December 5th was amazing.  Rob was able to manage his pain and visited with friends and family for almost 3 hours.  Some people who came were friends Rob hasn't seen in 20 years!  Thank you to all who came to the party and made it such a great afternoon.  It was a very encouraging day for Rob and I am so glad we did it.  Also the book that many of you waited in line to sign is so amazing to read and the words will be cherished for a long time.  My guess is there was almost 300 people who came by and even just thinking about the impact Rob has had in his short life makes me smile.  I told Rob the other day that many people live 90 years and don't make the same impact on peoples lives that he has had in just over 30 years!

Last week was unseasonably warm weather in Winnipeg so we took advantage of that (and the fact that Rob was feeling ok that day) so Rob, Isaac and I were able to get out and play a few holes of disc golf.  This is one of Rob's favourite things to do so when he said he wanted us to go everything on the to do list got dropped and we enjoyed some precious family time.  Today we were even able to get out and see the new Star Wars movie with some friends.  These snippets of good times are getting less frequent but when they come we try and make the most of it.  

Last night Rob and I were talking before bed about the fact that death isn't something that scares us because we know where we are going.  When Rob is in heaven he will be pain free and not have to suffer anymore and that is amazing to think about.  It is the dying part that is scary for us.  There are so many unknowns and fears that are associated with how things will happen and that is the part that is hard to process.  

Please don't stop praying for our family.  This is a very tough journey to be on and I can see the effects on all of us.  Pray for strength, hope, peace, joy and patience. Pray for pain management for Rob.  Pray for Isaac to know he is loved and that he will feel secure even in the turmoil.  Pray that I would have the energy I need to look after Rob, Isaac and myself.  

Love Karen

Pain in the Neck, Literally

Guest blogger Amy has returned!

Seeing how overwhelmed Karen is and knowing that you're all hoping for an update and new specifics to pray into, I offered to update you all on her behalf.  I've had the pleasure of being here to help out around their home for the last 4 days.

It's incredible how reading words and seeing things face to face can be so drastically different.  Words like, "the tumour is growing" seem obvious, until you see how much that tumour has truly grown and how much difficulty it causes.  To say that Rob looks uncomfortable, is the understatement of the year.  The tumour is irritated by every shirt collar, the seatbelt in a car and is simply always in his way as he seeks to get comfortable.

"Rob's pain is increasing", the palliative care team are working to make Rob's pain more manageable and are trying.  Unfortunately, at times this isn't enough and Rob is literally sitting in silence.  The pain is so intense that he can't speak.  He closes his eyes and just focuses on breathing, watching him in these moments made me feel so helpless.  Seeing that Karen was there, I would try to run down to the basement to fold laundry or take Isaac into another room to play and distract him from having to watch his Daddy suffer in so much pain.  Unfortunately, I'm not able to protect Karen from having to watch the love of her life suffer from this pain.

Rob is probably 1/2 the size he was before the cancer took over his body.  He was once a broad, strong man that is now frail and extremely thin.  I don't know how he continues to get out of bed each morning and fight.  The most intense physical pain I've ever experienced is labour.  I was quick to yell out, "I want an epidural" and with our last daughter I continually screamed, "get her out!!"  There is a major difference, I knew once that baby was out, the pain would end.  I can not imagine being in physical pain that has no immediate end, is likely to increase and will only truly stop at death.  Rob's determination to stay positive and try to do some normal things has been simply amazing to witness.

I have been in frequent communication with Karen and am very aware of her brokenness, this trip was the first time I witnessed his family's brokenness as well.  I know the pain of losing a child and have been broken for Rob's parents, watching them sit with their son and seeing their brokenness was emotional to say the least.  It simply feels so wrong.  A man that is so young and was so strong, should not be dying.

Isaac has brought me to tears many times on this trip.  My first night here he told me that his daddy was sick and is going to die soon.  I didn't know what to say, so I just asked him how he felt.  He told me it makes him sad.  Each night he prays that his daddy wouldn't die.  It's just not fair that this little boy will grow up without his daddy.  Sometimes Isaac would call out and say he had a nightmare when he didn't want to go to sleep.  Although I knew he hadn't even fallen asleep yet, I would always think about the fact that his life is currently a nightmare, so the statement was true.

I worried before I came that I might be in their way.  Maybe Rob would be annoyed that I was here, maybe I would be stealing time from Rob and Karen or Rob and Isaac.  I can confidently say that I am so glad I came.  If you're a friend of theirs and you haven't been coming around to see Rob, please do.  I have been so touched by my time here and can only hope I've been as much of a blessing to them, as they've been to me.

For those of you near and far, do not stop praying for this family.  Pray for the extended family and close friends that are walking this nightmare by their sides.  Pray for Rob's pain and the pain that those around him feel as they watch him in such pain.  Pray for provision as they aren't working and still have to live.  I don't know how many days God has given Rob on this earth, but I can clearly see that with the time he has, he's leaving a beautiful imprint of faith and hope in Jesus.

You are invited...

So often I hear from people how much they love Rob or the impact that he had on their lives.  It is so good for me to hear this and it encourages me so I thought it would be great to gather everyone who knows Rob to tell him what he means to them in person.  Everyone is invited to come and encourage Rob and show him how many people love him.  All in info is in the invite below.  Hope you can come!  Love Karen

Broken

I am not even sure where to begin this post.  The week started off not great and it ended in the worst possible way.  We were told some not so good news on Tuesday but wanted to wait until we met with the doctor today.  After the CT scan that was done on Tuesday and the doctors met to discuss Rob the conclusion is the worst possible option.  Basically the swelling and pain Rob has been experiencing is from the cancer spreading.  The scan shows that the cancer is spreading not only where we see the swelling but also behind his chest bone.  The biggest concern is that it is growing very close to his airways and starting to press on it.  The other concern is that it is close to some main arteries and that could cause major problems.  Surgery or radiation are not options anymore and chemo isn't working so they are stopping treatment.  Rob is going to be placed in palliative care meaning they will manage his symptoms instead of trying to control the disease.  We were told today that if Rob lived 3-4 months it would be a miracle.  We are devastated and can hardly believe this is true. 


Over the last few days we have been talking about the possibility of going elsewhere for natural treatment that is not offered in Manitoba.  Dr Gordon told us that flying would be a very risky thing and there is a chance that wherever we go we may get stuck there and not be able to fly back to Winnipeg.  We do not want this is happen so we are staying put.  We have not decided yet if we are going to continue the natural treatments here.  Rob sometimes feels like he wants to continue to fight but other times he feels that being at peace and enjoying the time he has left is better.  Please pray for wisdom and discernment regarding this.


We sat down today and told Isaac that sometimes Jesus doesn't answer our prayers how we want.  We said that daddy isn't getting better and that he might be going to heaven soon.  Rob and I were both crying at this point and Isaac had a good cry too.  It just breaks my heart to see him as a 5-year-old have to process this.  We reminded him how much we love him and that God will look after us no matter what.  Later in the evening he said to Rob that it is OK if he goes to heaven because he will always be in our hearts.   What a wise thing for a 5-year-old to say!  Pray for Isaac that he can understand and process everything and that he never forgets that no matter what happens that God loves us. 


We are broken and weary but we will never stop praying for a miracle.  I do not want Rob to live in pain and have often wondered if he would be better off in heaven where there is no more pain and sorrow.  No one knows how many days we have but we are going to make the best of whatever time we have left with the 3 of us together. 


Love Karen

Prayer request

Over the past few weeks we have noticed some swelling and changes to the area around Rob's collarbone by the tumor.  We assumed it was changes from chemo and natural treatments and tried not to think much about it.  The main swollen spot was soft so we thought the tumor was getting softer or had swelling on top of it.  Over the weekend the swelling seemed to get worse and it started to affect Rob's swallowing and breathing.  This morning we met with Rob's naturopath, Dr Ceasar,  to go over the results of his metals test.  This was the test we sent to the states and it measures if you have toxic levels of metals i.e. aluminum, lead, platinum, etc.  The good news was there was nothing that showed up on that test that needs to be treated.  Instead of talking about the test we ended up talking about the swelling and Dr Ceaser did an exam of Rob.  He did a bunch of measurements and he feels the tumor is smaller....the good news.  The bad news is that the swelling is not good and he said we should go see the doctor at Cancer Care to find out what is going on.  After Rob got his natural treatment and I made a call to the nurse we headed straight to urgent care in Cancer Care. We ended up being there for 4 hours and left without any answers.  The doctor there feels that there is something going on that needs to be figured out however they need to do an ultrasound and possible a CT scan to see what is going on.  The 2 main possibilities they talked about would be a pocket of infection that would be treated with heavy antibiotics.  The problem with this would be knowing why there is infection and if it has spread.  Rob is not presenting with any other symptoms of infection so they are not sure about it and don't want to assume that is what it is.  The other possibility is that it is a pocket of fluid (almost like a cyst).  This could be due to the tumor dying off and the fluid is pooling there.  They need to make sure that it isn't connected to anything else.  So we left with an appointment for an ultrasound on Tuesday morning.  We have to be there at 7:45am and will be on standby.  That means we don't have a specific time but that they will squeeze Rob in when there is time.  During the ultrasound they will have a look first and see what they think.  If it looks like a pocket of fluid then they will put a needle in to put some of the fluid out so they can see if it is infection or tumor related.  Rob is not thrilled with the idea of a needle going in and is worried it could make something spread however if he opts out of the needle it will be harder to treat. 


Tonight we are exhausted after a long day and wishing we had answers.  We are glad that we went in today to get this looked at and are praying we get answers and treatment quickly and that it can be resolved.  It just doesn't seem fair that Rob has to deal with another problem even with everything else he is dealing with.  We are crying out to God tonight for many things and in our weakness we are trusting and leaning on Him. 


These are the things you can pray for...
-that we are seen quickly tomorrow morning
-that the ultrasound is able to give a clear picture and that we don't have to wait for a CT scan
-that they are able to treat this easily and quickly with out any complications
-that this is not anything to do with cancer spreading
-for relief of pain for Rob
-that he is able to sleep tonight
-that his airways stay open and that he doesn't have difficulty breathing
-and what we pray for everyday since this journey began...for complete healing in Rob's body and for many more happy, healthy years on earth.


Love Karen
PS..sorry if there are spelling mistakes!  My proof reader has gone to bed!

New chemo-Round 1

Rob began the new chemo on Tuesday October 20th and it was a very tough one.  Usually the day you get chemo you feel pretty good because they give you steroids and anti nausea drugs and this was the case for Rob.  He actually felt pretty good for 2 days after and even disc golfed 18 holes one day.  Then Friday hit and so did the wall.  Rob got up about 9am that day and by 10am he was back in bed for a 3 hour nap.  Nausea is not a major side effect of this drug and can be managed by some anti nausea drugs.  The short term side effect that Rob experienced is flu like symptoms.  Rob felt so achy and sore all over that he couldn't even voice what hurt or what was wrong.  For a few days Rob basically slept and ate and was pretty miserable.  This is also tough on Isaac and I.  We tried to stay home to look after him but found there were times we just needed to get out of the house for a short bit to do something fun.  Thankfully by the Monday Rob was feeling a lot better and although he was still very tired he napped and could manage the day.  The thing with chemo is they give you a list 4 pages long of possible side effects but they have no idea how your body will respond.  There are some long term side effects that we do know if Rob will experience but we are trying to not dwell on those.  One thing that is suggested by some doctors is to ice your hands and feet while you get treatment to reduce the blood flow and there fore reduce the chemo drug going to your extremities.  This was not super fun for Rob during the treatment but if it saves his nails then it is worth it.  Overall this was the toughest chemo that Rob has faced.  I can definitely see how some people say it is too much and stop receiving treatment.  Next week Rob will begin round 2 and for now we will just take it one round at a time.


At the doctors request Rob did not have natural treatment during his first round of chemo.  This was to separate the drugs to know where side effects were coming from.  We are hoping that next round when he is receiving the natural treatment as well that the side effects might not be as bad. He took a week and a half off of the natural treatments but has started back on them again. 


One thing in particular you can pray about is last week Rob noticed a swollen spot under his chin.  It looks like a little lump and is in between all the scar tissue from the surgeries.  The lump is soft so we are thinking it is not a cancerous lump however we are not doctors (although sometimes I ask so many questions that I think I could diagnose some things!!).  Please pray this clears up on its own and is nothing that is concerning.  I would say we are at the point where we don't want to call the doctor because we are scared at what we might be told.  Pray that it is just fluid pooling and that this week it disappears.


Rob is still experiencing pain in his neck which is discouraging.  Sometimes it is all the little effects of all the treatment he has had that add up and make him not feel great.  Dealing with cancer and the side effects of the disease and the treatment can be very overwhelming.  Rob tries his best to enjoy the times when he feels as good as he can but sometimes a day or 2 of doing a few activities catch up on him.  Sleep is also something that is hard for Rob.  He can't seem to find a position that doesn't hurt his neck.  Pray for relief from pain and for restful sleep at night.  We could all use a good nights sleep!


Although this time is very difficult we have still had some good times together as a family, with our extended family and with friends.  We are also very excited to see some other friends and family out east!  One of the most memorable times recently was a prayer time with a bunch of our friends in Winnipeg the night before chemo started.  It was a powerful time together with many tears.  We know people are praying for us everyday but it is different to hear a close friend pleading with God on our behalf.  Thank you to all who were a part of that.


We also had 14 of our friends surprise us with a night out.  Rob and I thought we were just hanging out with one other couple but they took the longest route to get downtown ever to make sure we didn't arrive before everyone else.  When we arrived we still didn't know what we were doing but were greeted by 12 of our friends who we didn't even know we would see.  The event for the night was chosen to help Rob and I forget about everything we were dealing with and it worked!  We went to a place called Epic Escape and had to solve a complicated puzzle to find the key to get out of the room we were locked in.  I am happy to say Rob and I were on the same team and we won!!  After that we all went back to one of our friends houses to eat some delicious food and hang out.  It was such a good time and I haven't seen Rob laugh that much in a long time.  Thanks friends!


One thing I think that is often taken for granted is being thankful in all circumstances.  Life is hard and certainly has not gone the way I planned it.  However there is still good everyday and we have so much to be thankful for. 


One of my current favourite artists is Lauren Daigle who wrote a song called Trust in You.  The other day Rob was out and Isaac was at school so I may have turned my music up a little loud.  There I was singing Trust in You at the top of my lungs (I know you are all picturing this!) and the words I was singing really hit home.
"Trust In You"

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see

I’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my side

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand

Your ways are always higher
Your plans are always good
There’s not a place where I’ll go, You’ve not already stood

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

By Lauren Daigle

Powerful words for sure!  This is something that I have been struggling through with God.  We have faith and know that God can heal and we ask Him everyday to heal Rob.  We have to trust in Him that He will do what is best for us but this is not always the way we want it to.  As I sang the song and tears ran down my cheeks I realized I will continue to trust God because without Him I could not imagine walking this road.


Thank you once again for all the prayers and support. 
Love Karen

Unexpected bad news.

One of the many things that I hate about cancer is how quickly things can change.  It feels like you have a plan and are ready to move forward with the next step and then something changes and you have a whole new plan.  Often it feels like one step forward and ten steps back. Last week was one of those moments where all of the sudden the plan we had in place was completely changed. 


On Friday Rob and I went to Cancer care for Rob's regular follow up with Dr Gordon (chemo doctor).  We went there thinking it was going to be a normal appointment and that we would be in and out quickly....unfortunately that is not what happened.  Rob mentioned that his neck pain has gotten worse over the last few weeks.  Pain is always worrisome when dealing with cancer so she did a physical examination of him.  She was concerned right away and felt the tumor on his collarbone felt different.  She said that sometimes it can be a good thing that she only sees it every 3 weeks because then it is easier to notice a difference and Rob may not noticed a change seeing it every day.  We were immediately sent for a CT scan to see what was happening.  We left the hospital in shock and scared but hoping she was wrong.  Sometime after 4pm Rob got a call from the doctor saying that the tumor on his collarbone and the one in his mouth had grown slightly and there it looks like the cancer might be in his jawbone now.  This was news we didn't expect to hear nor did we want to hear this.  Dr Gordon would like to start Rob on a new chemo drug immediately.  She feels that with the change she is seeing now is not the time to stop chemo and wait to see what happens, in fact she worries that if we stop treatment then the cancer will progress very quickly.  This new chemo drug is one that Rob has never had before and even though we get a long list of possible side effects we really don't know how Rob will respond to it.  We had the weekend to think and pray about it and we met with her again today to go over some questions.  Our time with her today was very good and she was able to answer all our questions and have a good chat with us.  Before we got out of the car to go in we prayed for peace with our decision especially for Rob.  I am happy to say that after leaving Cancer Care today we both felt at peace and that this was a good next step.  Unfortunately Rob has a bad sinus cold and so we will begin chemo next week.  In one way we are thankful for the break this week and hope to enjoy it.  Pray that Rob is able to fight off this cold quickly so he can enjoy some days this week and that chemo will start as planned next week. 


The other thing we talked at length about today was natural treatments. Rob has done 3 of the natural treatments so far.  We feel like we haven't even had a chance to see if it is working at all so we will continue those treatments as long as there are no interactions with the chemo drug.  Dr Gordon would like Rob to do the first round of chemo without the natural treatments so that we are able to know if there are side effects what might be causing them.  That way he can compare a round of chemo without natural treatments to a round with.  We have also heard that for some patients on natural treatments have less side effects from the chemo drugs and we are praying this is the case for Rob.  The other thing we are going to look into is an additional weekly treatment specifically for the type of cancer Rob has.  We had previously declined it to keep the costs lower but at this point we need to give everything we have a try.  There is also some concern that the natural treatments are antioxidants and will not allow the chemo to do what it needs to do so we will have to meet with the Naturopath to discuss this. 


I have spent a lot of time wondering when we stop trying or hoping.  I think that when you are outside of the shoes we find ourselves in it is very easy to question when enough is enough.  However when you are in our shoes you realize that, although we know the reality of our situation, we will keep fighting and trying everything we can until Rob no longer can.  We pray everyday that Rob will be healed and that we will have many more years on earth together. 


Many of you have been asking how Isaac is doing.  We try to keep things as normal as possible around him but that being said he picks up on our emotions.  He also knows that Daddy has cancer and prays for him every night to get better.  Over the weekend Isaac and I were talking and I told him that Daddy was going to start a new medicine and that he would probably lose his hair.  Isaac's response was, " It's ok I will always know who my Dad is.  I love my Daddy.  He is the best!".  We try to make a priority of time together and make sure that Isaac always know how much he is loved so that even amongst the chaos he is confident of that. 


We are scared and weary but we know that God loves us and that He will continue to walk with us.  Love Karen

A long overdue update.

I have a hard time believing it has almost been a month since my last update.  For the last 2 weeks I have been meaning to sit down and write an update to let you all know what is going on and what to pray for.  To be honest it has seemed like a daunting task and I just kept putting it off.  Thank you for being so faithful in reading our story and praying for us.  Although writing an update is tough some days I am beyond thankful that we have an army of people who love us and are lifting our family up to God.  Once again we are so thankful for each of you and that we are not facing this alone. 


Our small group just started a study on 1 Peter and part of it really hit home for me.  1 Peter 1:6&7 says,  ^"6 So be truly glad.  There is wonderful joy ahead, even though you must endure many trials for a little while. ⁷ These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world."   I  often wonder why some people have more difficult trials than others and many times have thought "haven't we been through enough?".  The truth is we don't choose what we face in life but we choose how we face the trials.  Some people do have easier life than others but that doesn't change our faith.  Each day I need to make the decision to be glad for this day and live it to the fullest.  I struggle with this on a regular basis but I will continue to have that as my goal.  God is still good all the time-even on our toughest days.


So now for the medical part.  In my last blog I mentioned that we were trying to decide if Rob should do 2 extra rounds of chemo.  Sometimes prayers are answered differently then we think and this time was one of them.  We didn't end up having to make a decision, the doctor did it for us.  At Rob's next follow up with his oncologist she said that the research shows 6 rounds is best and she only gives extra for people who are scared to stop.  She had offered it to us if we wanted it but didn't actually recommend it.  So that means that as of tomorrow Rob will be done his full 6 rounds of chemo.  He will still continue to receive cetuximab every week.  The cetuximab isn't considered a chemo drug but is an antibody.  It works similarly to the antibodies we all have that fight off sickness.  For some people this will hold back the cancer for a while and for some not long.  Before the end of the year Rob will have another CT scan to see if the cetuximab alone is working for him.  At that point we will decide about next steps.  The doctors don't know how Rob's disease will progress so they just have to treat it one step at a time.


Something that we have been looking into for a few months now is alternative/natural treatments.  We have read about them and found someone here in Winnipeg that offers them.  Dr Caeser is a naturopathic doctor with many years of experience treating cancer.  Last Monday we met with him for the first time and Rob started his first treatment on Friday.  He uses a few natural drugs through IV as well as oral supplements.  These things have been known to attack the cancer cells without getting the healthy ones therefore you get the treatment without the nasty side effects.  It is hard to say what one would do until they face the situation and for us this is one of those times.  When the medical doctors say they can't get rid of the cancer then you need to look elsewhere.  We are feeling good about this step in Rob's treatment and we know we need to try this even though it is not guaranteed to work.  The biggest downfall of natural treatment is that it is not covered at all.  That means that every minute you are with the doctor you are paying out of your pocket.  We have already decided to go for 2 treatments a week instead of the recommended 3 to cut down the cost.  People often say to save up for a rainy day and it has been raining for us for awhile.  Please pray that we make wise decisions regarding this and that God provides what we need without having to choose between Rob's health and money. 


Whether God heals Rob by the medicine, the natural medicine, or just by miraculously healing him we don't care and will never know but we do pray for healing everyday.  We know that sometimes God heals and sometimes he doesn't but we have hope because one day we will be in heaven.  Pray for us that we are able to enjoy each day we have together, that we are loving and patient with each other and that the stress of our life doesn't cause tension in our family.


I am happy to report that Isaac has started Kindergarten now and he is loving it.  Even on his first day he walked in there and didn't care at all that we were leaving.  I know that school is going to be a good thing for all of us.  Isaac also started karate a few weeks ago.  I was able to find a local place that let Isaac try it for free for 2 classes and is very affordable. He wasn't sure at first if he wanted to go back because it was hard but he is doing very well and working at getting better. 


This week is a big week for me because I am starting back at work.  I met with my boss and she was happy to help me the best way she could.  I will be going back just 2 short shifts a week.  Rob and I both feel like this will be a good thing to get me out of the house a bit and with Isaac in school during one of my shifts and grandma and grandpa helping with the other one Rob should be ok.  The only way to know if this will work is to try it so that is what we will do.  It was one of the best decisions I made staying home for the last few months but I do look forward to going back to work even just a few hours a week and hanging out with some seniors!!


I will try to be better about updating on here more often but know that even when I am silent we need and appreciate all your love and prayers.


Love Karen

Shrinking Tumors!

Most kids are gearing up for starting school tomorrow here in Winnipeg but as luck would have it Isaac came down with something and isn't allowed to start his first day of Kindergarten.  After his fever spiked to 105.1 we decided to take him to the doctor.  We still aren't totally sure what is causing the fever but hoping the medication he was given helps and he should feel much better in a day or two.  Tonight as I was getting him ready for bed he said to me with tears in his eyes, "If I can't go to my first day of school I am not going to any days of school."  I know that once he starts he will forget about missing his first day but he was SO excited it just doesn't seem fair.  I am just praying that He feels better when he gets up tomorrow and that whatever is going on that the medication helps and that Rob stays healthy and doesn't get it. 


Today I was really torn between being at chemo with Rob and being home to look after Isaac since he was sick.  Marilyn, Rob's mom, was helping me out but knowing the right place for me to be was difficult.  I decided to stay home with Isaac and Rob was able to have a good visit with his mom so it all worked out.  I know that I have people who can and want to help us but I often just want to be everywhere and not miss a thing. This is something I need to work on and am continuously challenged by. 


I think I would say that doing chemo is now a routine for us and to the point where I lose track of when I last wrote an update on here!  After 3 1/2 months of weekly visits and managing side effects we are getting pretty good at knowing what each week will look like.  Rob did round 5 week 2 today.  It is hard to believe that summer is almost over and we spent the whole season going to Cancer Care every week.


The other week Rob had a CT scan done of his chest and neck. This is routinely done after 4 complete rounds of chemo to see if it working.  We were told at his follow up appointment that the tumors have shrunk a little since chemo began but they are not "melting away."  In other words the chemo is working to prevent the cancer from spreading but it is not totally getting rid of it.  We are praising God that at least the chemo is working and will continue as planned.  It also leaves us in a place where we need to make some decisions.  I asked in this last appointment what happens after the 6 rounds were completed as I presumed they wouldn't just stop treating Rob.  There are actually a few options of what we could do but one of the options is to do 2 extra rounds of this same chemo routine (doing 8 rounds of 3 weeks each in total).  At this point we have not made a decision but please pray for us as we figure out what is best for Rob.  Also pray that the tumors would begin to melt away and at next scan the doctors would be amazed!!


Another decision we are weighing is going away as a family after chemo is done.  Chemo is a long hard road and I really think that after all of this we need some time away just to be together and have fun.  One of my best friends and her family has a trip planned in November that we would love to join them but there is a lot to be decided before then.  One thing we still need to look into is travel insurance for Rob.  We are praying that we would know if this is the right thing for us to do and if not that we can make memories another way. 


A few weeks back I was contacted by the Never Alone Foundation.  They are an organization that supports cancer patients and one of the things they do is send them on day trips.  The couple that gave Rob's name in told them he loves football.  So on August 29th Rob, his dad, my dad (who was visiting us for a few days from Ontario) and I went to the Bomber game and had amazing seats.  Rob was also given a gift bag with a number of things including a football and a jersey signed by some of the 1990 Grey Cup team.  Although it wasn't the greatest game in terms of football we still had a great time.  The weather was perfect and Rob felt good!  We are very grateful to the Never Alone Foundation for their generous gift and the amazing opportunity. 


The last little while has been tough for me.  I often feel overwhelmed and weary.  I am naturally a planner so I think about the future and we don't know what the future looks like so it is scary sometimes.  I know that day by day we will get through whatever we face but that doesn't mean that it will be easy.  In my weariness there have been more tears lately but there is also still laughter.  I know that God is with us and knows the best thing for us but sometimes I just want everything to go back to "normal".  Last week I was reminded of this verse found in Romans 12:12 which says,  "Be joyful in hope, patient in affliction, faithful in prayer."  Please pray that I can live this out each day of my life.  That I will be filled with hope, patience and faithfulness and that all the glory would be given to God as He carries us through.
Love Karen

Sometimes you just have to dream!

One of my favourite verses has always been Psalm 37:23-24 which says, "The Lord directs the steps of the godly.  He delights in every detail of their lives.  Though they stumble, they will never fall, for the Lord holds them by the hand."  The past week I feel like God is not only holding my hand but that I am hanging onto Him with both hands and am scared to let go.  We have been at this whole chemo thing for 11 weeks now and I find myself getting tired and weary.  I have moments when I feel so overwhelmed that I doubt I can go on.  Watching Rob suffer is the hardest thing I have ever had to do.  One thing I have never wanted to do is pretend like everything is fine and put on a face.  That doesn't mean that when I smile I am faking it, because amongst the suffering there is still joy.  What it does mean is that some days I find it harder to face our reality and I hate the situation we are in.  It is in those moments I cling to God and beg him to hear our prayers.  We know that God loves us and wants the best for us.  He "delights in every detail of our lives" and He is not delighting that Rob is sick but he delights in how we lean on Him and share His word and serve Him even while going through something that is terribly difficult.  My prayer is for healing, strength to face this, peace, hope and that in our reality God would be glorified and our fight would be an example of God's faithfulness and love.  

As I sit here and type Rob is beside me getting his treatment (we are in Round 4 week 2).  They say that Chemo has a cumulative effect and I would say that some things are starting to get worse.  The nausea during week one continues to be managed quite well with anti nausea drugs so we are thankful for that.  Rob does struggle with a lack of appetite during week one.  Week 2 he gets mouth sores which makes eating and enjoying food very difficult.  Not to mention that the drug he receives every week gives him a terrible rash all over his body.  He continues to have good days and bad days and we are never totally sure when they will occur.  Sometimes it helps to get out of the house and do something and other days it seems daunting to leave the comfort of home.  

We find one things that helps is continuing to dream and plan.  We talk about what we would do when we are retired and dream of buying an RV and seeing more of this beautiful country.  Usually a conversation like this ends with me telling Rob that he needs to stick around so we can do this together!  We dream of going on a family vacation once chemo is done.  We dream about watching Isaac grow up and who will teach him to drive!  We dream and plan because it feels good and because no one knows how many days any of us have.  I just pray that some of these dreams and plans can become a reality.  

I have had a number of people ask me about work.  A few weeks ago Rob and I talked about what it would look like if I went back to work.  But then the following week was a hard week and being at work would have been impossible.  I have now reached the end of my sick days but we feel that it is still important for me to be at home.  I am needed there to look after both Isaac and Rob.  Although making money is important looking after my family is more important!  The plan is to reassess once Isaac starts school in September.

Isaac is doing well.  He took some swimming lessons a few weeks ago and passed 2 levels in one.  Last week he attended VBS at our church and loved every minute.  He even memorized his first bible verse!  He is also getting very excited to start Kindergarten in September!!  We know it is hard on him having a Daddy who is sick but he prays for Daddy every day and enjoys time with him when he feels good enough to play Hotwheels or Lego!  Pray that we have patience and love for him even when we are tired and dealing with our own emotions.  Sometimes parenting during a sickness is one of the most difficult things.  

I have said this before but I feel like I need to say it again....Thank you!  Last week I was thinking about all of the people I should write thank you cards to but then I get overwhelmed by the task.  Forgive me if I have not thanked you but know that all the prayers, visits, phone calls, cards, financial gifts, meals and encouragement is appreciated so much.  We could not do this without the community we have around us.  So a huge thank you to all of you from the bottom of our hearts.  

Each day we wake up and face the day and not knowing what lies ahead but knowing that we have today and we should make the best of it.

Love Karen 

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