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