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
Friday 20 November 2015
Monday 16 November 2015
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!
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!
Monday 2 November 2015
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"
Thank you once again for all the prayers and support.
Love Karen
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!
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
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