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
Tuesday, 13 October 2015
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
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
Sunday, 4 October 2015
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
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
Tuesday, 8 September 2015
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
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
Monday, 17 August 2015
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
Subscribe to:
Posts (Atom)