Since my last update on December 8th we have only been to Cancer care once and have enjoyed some free time. It seems crazy how quickly time passes when you don't have something scheduled every day. Rob and I were talking about how lots of people around us are so busy this time of year running from event to event but we find ourselves in the opposite place. The one Christmas party we were going to as a family was cancelled....I am sure the other families were thrilled to have a quiet night at home but we had been so excited to get out of the house! With Rob's free time, as he feels up to it, has been doing small things around the house. The other day while I was at work he hung a chandelier that had been on his to do list for a long time. I was excited to come home and find it up and he felt good accomplishing something.
Rob has been feeling better and better each day. We are pretty sure his side effects peaked in the week after his treatment ended. The ringing in the ears is almost stopped and the chemo brain is gone which is good news. He is still up through the night having to clear his throat but it isn't as often. Eating is slowly getting better although he still needs a modified diet and it takes him almost an hour to eat a plate of food. The good news is usually he doesn't have to rush anywhere so that is ok!
On December 11th we met with Dr Butler to follow up from radiation treatment and he was pleased. During treatment we were told that things would start to get worse but didn't seem to experience what they said until right at the end. Rob still had thrush at this point but since then we switched medication and we are hoping it will be gone by the end of this week. All in all things seemed to be healing from the radiation treatment and Rob is feeling much better. When I get asked "How is Rob?" I find it tough to answer. Considering what he has gone through he is doing pretty well....on the other hand as an average 31 year old man he is not doing so good. We look forward to when things are back to "normal" and he is able to work and do things a normal 31 year old would do. We are not sure when that will be but we look forward to it. In the meantime we are just enjoying some extra time together.
Rob also had a follow up with Gina the dietician on the 11th. She was very happy with how Rob got through treatment. His weight only fluctuated about 5lbs and for what he went through that is very good. She encouraged Rob to continue doing what he is doing and he will be back to where he was.
January will be full of follow up appointments with all of his doctors ( he has a lot!). He will also have a CT Scan on January 16th and will find out the results on the 29th. The CT scan will give them a base line for how things look and will hopefully not show any growth (that is basically how they know if the treatment worked). We continue to pray that Rob is healed and that he will not have any cancer grow back. The next year is the most crucial but all we can do is wait and see while we pray faithfully.
As many of you know Rob's sister Katherina and her husband Joel were expecting their first child at the start of December. We are thrilled to share that Jonathan Pierre Scott Caby was born on December 13th and he is perfect. The day after Rob was done his treatment I jokingly sent Kat a text to read to my nephew, that was still in her tummy, saying thank you for not coming too early because we needed Grandma and Grandpa's help but it was ok for him to come now! We were thankful to have the help with Isaac during that last week and it would have been much more complicated if that little guy had come early. The other day we brought Isaac over to meet Jonathan and he thinks he is pretty cute although I think he is excited for when he is bigger and can play!
Christmas looks very different for us this year than it usually does. We would normally be heading to Ontario to spend Christmas with my family but we didn't know how Rob would be feeling so we cancelled our trip. For the first time we will have Christmas morning with the 3 of us in our own home! When Isaac first found out we were not going to Ontario he thought we were missing Christmas morning because that is all he ever knew. We quickly reassured him that Santa would know he was at home and not to worry. On Christmas afternoon we will head over to Rob's parents and celebrate with them. Then on boxing day my mom is going to fly in for a few days and have a little time with us. I am really going to miss seeing my family and friends in Ontario but making new traditions is not so bad either.
As much as Christmas is a time of festivities, shopping, giving, receiving, eating and all of the other things that make up the chaos, we want to remember that Christmas is about Jesus' birthday. We have been talking to Isaac a lot about the true meaning of Christmas and want to make sure he grows up to know the reason we celebrate. May you and your family have a great time together this Christmas and that you take the time to celebrate our Saviour's birth.
Merry Christmas and a New Year full of blessings.
Love Karen, Rob and Isaac
Monday 22 December 2014
Monday 8 December 2014
Ringing of the bell!
Last week was a tough week and even though there were things to celebrate there were many hard days to get through. As you know Rob had his final 3 radiation treatments to complete his 33 planned. There is a tradition at cancer care to ring a bell when you complete radiation. I was able to be there and get a video of Rob ringing the bell and the technicians clapping and cheering him on. What a relief to be done the daily visits to cancer care! Unfortunately that did not mark the end of the side effects, in fact they could continue to get worse before they get better. This has been very tough on Rob this week. He is having a hard time eating, is up a number of times through the night, as well as he has a hard time being away from home for any length of time because he needs to clear his throat. On top of this he also had his last chemo last Tuesday. The side effects which include fatigue, nausea, upset stomach, no appetite to name a few usually last about 5 days although this time they seem to be lingering longer. He also experiences something they call "chemo brain". Basically it is like he has brain fog and he can't make simple decisions. This is very frustrating for Rob as well as for myself. I try to make his decisions when I can but that is not always possible. Each round of chemo he also gets a ringing in his ears for a few days. This is a result of the chemo attacking the cells and nerves. This past Sunday Rob had to stay home from church because the noise of many people talking not to mention the music is just too much for him. Thankfully this only lasts for a few days and by next Sunday the ringing should be gone.
With treatment being completed we move into this weird time. Rob is no where close to being ready to go back to work but he will not have as many appointments. He will still see all of his doctors on a regular basis but we are in this time of recovery and waiting. They will regularly scan Rob to see if there are any changes and monitor him very closely. His cancer is not one that now that treatment is done they can do a test to know that it worked. Instead they hope it got rid of all the cancer cells and they will watch to see if anything grows. Please continue to pray for us as this time can sometimes be harder just waiting. We don't want to sit and worry but instead we want to live life to the fullest we can. As Rob feels better each week we are going to make special time as a family and enjoy the time together.
Since treatment started so quickly after his second surgery he wasn't able to fully recover from the surgery. After the first surgery Rob had months to get his tongue and flap moving and he was able to eat pretty well at that point. The second surgery was like taking 10 steps back and now with treatment over he can work on that. He will work along side Speech Language Pathology and will be given many exercises to do every day. Eventually he will also have to have the hair removed from the flap (this was cancelled in September), look at getting teeth and then relearn how to eat and talk with new teeth.
Our biggest prayer request right now is for complete healing. No one knows how many days anyone has but we pray for a full lifetime together and to enjoy watching Isaac grow up. We trust in a God that heals which allows us to walk forward each day in faith. We both have our fair share of doubt and fear but we never stop relying on peace, strength and healing from God. I am not sure how one could get through something as terrible as cancer without God, without faith, and without an army of prayer warriors and support from church, friends and family. For all these things we are incredibly grateful. When things seem to hard to bare something as simple as a phone call, an email, a letter, a meal, a gift card, etc. can make things feel better even for a few moments.
Thank you for each one of you who care for our family.
Love Karen
With treatment being completed we move into this weird time. Rob is no where close to being ready to go back to work but he will not have as many appointments. He will still see all of his doctors on a regular basis but we are in this time of recovery and waiting. They will regularly scan Rob to see if there are any changes and monitor him very closely. His cancer is not one that now that treatment is done they can do a test to know that it worked. Instead they hope it got rid of all the cancer cells and they will watch to see if anything grows. Please continue to pray for us as this time can sometimes be harder just waiting. We don't want to sit and worry but instead we want to live life to the fullest we can. As Rob feels better each week we are going to make special time as a family and enjoy the time together.
Since treatment started so quickly after his second surgery he wasn't able to fully recover from the surgery. After the first surgery Rob had months to get his tongue and flap moving and he was able to eat pretty well at that point. The second surgery was like taking 10 steps back and now with treatment over he can work on that. He will work along side Speech Language Pathology and will be given many exercises to do every day. Eventually he will also have to have the hair removed from the flap (this was cancelled in September), look at getting teeth and then relearn how to eat and talk with new teeth.
Our biggest prayer request right now is for complete healing. No one knows how many days anyone has but we pray for a full lifetime together and to enjoy watching Isaac grow up. We trust in a God that heals which allows us to walk forward each day in faith. We both have our fair share of doubt and fear but we never stop relying on peace, strength and healing from God. I am not sure how one could get through something as terrible as cancer without God, without faith, and without an army of prayer warriors and support from church, friends and family. For all these things we are incredibly grateful. When things seem to hard to bare something as simple as a phone call, an email, a letter, a meal, a gift card, etc. can make things feel better even for a few moments.
Thank you for each one of you who care for our family.
Love Karen
Sunday 30 November 2014
The light at the end of the tunnel!
I am still feeling simply amazed by last weekend (if you are reading this and haven't read the last blog go back and read it!). On Monday evening we went out shopping for a new dishwasher. We decided to go to Sears and figured it would be an easy purchase. We need to have a portable dishwasher because there is no plumbing in the wall where it sits so this means that there is very little selection. After looking at our options we settled on the one that seemed the best and quickly found out that it could not be delivered until January 12th. None of us felt good about that and we didn't have a good feeling about the whole process there so we decided to leave and headed to Home Depot. We headed straight to the appliance department and after a few minutes we were greeted by a man who we now refer to as Home Depot Dean. We explained what we were looking for and Amy told him the whole story about how this all came about. Well Home Depot Dean did not disappoint us! He was able to get us the same dishwasher that we were looking at Sears for a cheaper price. He told us the only bad news was that we would have to pick it up. I said not to worry and figured after a few phone calls I would be able to find someone strong with a truck that could help Rob before chemo on Tuesday. On Thursday my cell phone rang and it was Home Depot delivery saying they had my dishwasher and wanted to set up a delivery time. I told him I hadn't paid for delivery but he said I was on the list so they would bring it! To me this was another God thing as we could have arranged to pick it up but it was way easier to have it delivered. So as we speak I am running my old dishwasher for the last time and tomorrow (Monday) afternoon my new one will arrive. It amazes me how God was able to meet a need that I hadn't even said I needed yet. We could have lived without a dishwasher but our kitchen set up isn't ideal for that plus the high heat is better for sanitizing and keeping us all healthy. You just never know how God is going to show up and remind you he is in control and that he loves us. This time he used a stranger from Calgary, my friend and her story, an early morning flight, and a sales associate from Home Depot!
Last weekend was also full of other blessings. It was so good to hang out with my friends and laugh like old times. If you know my friends Shelly and Amy you know that they are hilarious. It is amazing how even though we could be in the middle of a hard time that we could laugh and have a great time together. They also helped with cooking and cleaning which I appreciate so much. I feel grateful to have been able to spend a few days with them and Rob loved having them here too!
Over the past week or so Rob has been having more pain in his mouth. Last week Dr. Butler had a look and thought that maybe he was getting thrush. This is common during radiation but not everyone gets it so they only treat it if needed. This past Thursday when the doctor looked again it seemed to be getting worse and prescribed Rob a mouth wash to use. If they don't deal with it now it could become a problem later. We are praying that the medication works and Rob is relieved from the pain and that we don't have to get a refill as it is very expensive medicine.
This week is going to be a big week for Rob! He has 3 radiation treatments left and will have his last of 33 on Wednesday. I am able to be there on Wednesday with him to celebrate the completion! He also has his last chemo on Tuesday this week so he may not feel much like celebrating but we will still mark the completion and once he is feeling better we will celebrate properly! The chemo usually knocks him pretty hard for 5 days so hopefully next week at this time he will be feeling better from chemo. We have been told that the way radiation works is that it accumulates and his side effects may peak 7 days after the last day of treatment so that means right after he feels better from chemo he will really feel the effects of radiation. The doctors and staff at cancer care are very pleased with how Rob has been during treatment and even though they keep telling us that it will get worse we see a different result. My friend asked me tonight why I thought that is the case. One reason is I think Rob is a tough cookie and although he has bad days and moments he is keeping his chin up. The other reason, and the more important reason, is because of God. To me nothing else makes more sense to explain it than God loves Rob and cares about him and that we have an army of people praying. We know that if we didn't have a relationship with God that we would not be doing as well as we are. Also if we didn't have each of you loving us , blessing us and praying for us we would be in a different situation. Please continue to pray that this week goes as well as it could. We know the next few weeks are going to be tough but we are hopeful that we can see the light at the end of the tunnel. Also pray that the treatment gets rid of all of the cancer. Apparently the last few treatments are the most important because they will attack the more stubborn cancer cells. We are asking God to heal Rob completely and even though radiation and chemo are hard if it gets rid of this terrible disease it is worth it.
Being so close to the end means we started to think about what the next step will be. Once he is done treatment this week he will have a few follow up appointments but for the most part December will be time of rest and healing. I can't even remember what it is like to not have a crazy schedule and not have to go to the hospital everyday. In about 6 weeks Rob will have a CT scan to get a base line of what is "normal" for him. Then they will monitor him very closely knowing the first year is the most critical. If some cancer cells were going to grow it would likely happen very quickly and they will keep their eye on that. We don't know all the details yet but there are many things that Rob will need to have done to his mouth to be back to "normal". What we do know is that December will be quiet in regards to appointments and we are thankful for that.
When Rob started his radiation and chemo I remember thinking that 6 1/2 weeks would be so long and I dreaded November. I am thrilled to be starting December and to be looking back at November. It was a hard month for us but we made it through and look forward to getting past this part. Thank you for praying for us over the last while and for continuing to bring our family to God.
Love Karen
Last weekend was also full of other blessings. It was so good to hang out with my friends and laugh like old times. If you know my friends Shelly and Amy you know that they are hilarious. It is amazing how even though we could be in the middle of a hard time that we could laugh and have a great time together. They also helped with cooking and cleaning which I appreciate so much. I feel grateful to have been able to spend a few days with them and Rob loved having them here too!
Over the past week or so Rob has been having more pain in his mouth. Last week Dr. Butler had a look and thought that maybe he was getting thrush. This is common during radiation but not everyone gets it so they only treat it if needed. This past Thursday when the doctor looked again it seemed to be getting worse and prescribed Rob a mouth wash to use. If they don't deal with it now it could become a problem later. We are praying that the medication works and Rob is relieved from the pain and that we don't have to get a refill as it is very expensive medicine.
This week is going to be a big week for Rob! He has 3 radiation treatments left and will have his last of 33 on Wednesday. I am able to be there on Wednesday with him to celebrate the completion! He also has his last chemo on Tuesday this week so he may not feel much like celebrating but we will still mark the completion and once he is feeling better we will celebrate properly! The chemo usually knocks him pretty hard for 5 days so hopefully next week at this time he will be feeling better from chemo. We have been told that the way radiation works is that it accumulates and his side effects may peak 7 days after the last day of treatment so that means right after he feels better from chemo he will really feel the effects of radiation. The doctors and staff at cancer care are very pleased with how Rob has been during treatment and even though they keep telling us that it will get worse we see a different result. My friend asked me tonight why I thought that is the case. One reason is I think Rob is a tough cookie and although he has bad days and moments he is keeping his chin up. The other reason, and the more important reason, is because of God. To me nothing else makes more sense to explain it than God loves Rob and cares about him and that we have an army of people praying. We know that if we didn't have a relationship with God that we would not be doing as well as we are. Also if we didn't have each of you loving us , blessing us and praying for us we would be in a different situation. Please continue to pray that this week goes as well as it could. We know the next few weeks are going to be tough but we are hopeful that we can see the light at the end of the tunnel. Also pray that the treatment gets rid of all of the cancer. Apparently the last few treatments are the most important because they will attack the more stubborn cancer cells. We are asking God to heal Rob completely and even though radiation and chemo are hard if it gets rid of this terrible disease it is worth it.
Being so close to the end means we started to think about what the next step will be. Once he is done treatment this week he will have a few follow up appointments but for the most part December will be time of rest and healing. I can't even remember what it is like to not have a crazy schedule and not have to go to the hospital everyday. In about 6 weeks Rob will have a CT scan to get a base line of what is "normal" for him. Then they will monitor him very closely knowing the first year is the most critical. If some cancer cells were going to grow it would likely happen very quickly and they will keep their eye on that. We don't know all the details yet but there are many things that Rob will need to have done to his mouth to be back to "normal". What we do know is that December will be quiet in regards to appointments and we are thankful for that.
When Rob started his radiation and chemo I remember thinking that 6 1/2 weeks would be so long and I dreaded November. I am thrilled to be starting December and to be looking back at November. It was a hard month for us but we made it through and look forward to getting past this part. Thank you for praying for us over the last while and for continuing to bring our family to God.
Love Karen
Sunday 23 November 2014
Find A Need and Fill It
This is Amy Koslowski, I like to believe I'm Karen's best friend, but I know there are a few of us that hold that title. I'm from Calgary and am currently in Winnipeg with the Scott's for a visit. I'm thrilled to be here with my friend. Our friend Shelly is here as well and I must admit, I've spent a lot of time laughing with my legs crossed! When we used to hang out in high school, we could laugh without the fear of tears dripping down our legs! Laughter is so healing when life is difficult.
When planning my trip to Winnipeg I wanted to find a cheap flight. I also wanted to have as much time with Karen and Rob as possible. I have a 4 year old daughter and an 8 month old. I couldn't be gone for too long as my 4 year old was going to be staying in Calgary. I chose a flight that arrived in Winnipeg at 8am on Saturday morning. It seemed like a great idea at the time, it gave me the entire day here and the flight was cheaper. I failed to process the reality of getting up at 3am and dragging an 8 month old out of bed to catch my flight.
Yesterday at 3am I rolled out of bed feeling like a crazy woman. I dragged an exhausted baby into a waiting cab and arrived at the airport. Just after 4am I was sitting at my gate, waiting to board my flight. I had Stella on my lap when two women came and sat next to me. The dreaded question came, "is she your first?" This is a difficult question for me, she's actually my third. I chose to answer her question and hoped she wouldn't push the issue. Then it came, "how old are your other two?" There's no way around it, my oldest is 4 and my middle daughter is already in Heaven. My beautiful Hope Taylor will never experience more than her 1st birthday on earth. I always smile while explaining, trying to keep people from feeling bad about asking. I do love to talk about her and it doesn't offend me. It's more the awkwardness of feeling their tension and the regret I feel they have for talking to me.
When the moment passed, she asked why I was headed to Winnipeg. I explained that I was coming to visit my best friend as her husband was going through chemo. I told her that myself and another friend were coming to do some cooking, make her smile and try to help out around the house. As I walked onto the plane, I kept thinking, "why did I tell her so much about my life?" I felt awkward about being an 'over-sharer'.
I sat on the plane waiting for everyone to board and the woman I had been chatting with popped into the seat beside me. She said, "I know this will sound weird, but my husband and I have been praying about some money we want to do something with. After talking to you, I'd really like to give it to your friend." I smiled and explained that it didn't sound weird at all, I told her that I was a Christian and I thought that her gift would be a great blessing to my friends. I gave her my phone number and email address and she got up to find her own seat. She never told me how much they wanted to give and I never asked.
I shared this story with Karen when I arrived and she was touched to hear about a stranger that would take the time to care. Then the whirlwind of all the things we wanted to accomplish began and I didn't think much of it. As I was doing things in the kitchen, I noticed Karen was washing almost everything in the sink. She explained that their old dishwasher wasn't working very well anymore and they needed a new one, but couldn't afford it. In my naturally sarcastic and slightly cocky way, I joked that I would find a way to solve her problem.
This morning in church the sermon was about service. The speaker specifically said that we need to find a need and fill it. I enjoy serving others and began thinking of needs that I could fill. Then later this evening as we sat watching a tv show, my cell phone pinged as an email arrived. I opened the email and found a message from the stranger in the airport. I just looked up and smiled at my friends. They asked me what was going on and in great delight, I was able to tell them that it was time to go shopping. Tomorrow we're going to go out and replace that old dishwasher for Karen and Rob. The amazing thing is, the people who paid for the dishwasher will likely never meet Karen or Rob and have no idea how amazing this gift is.
Sanitizing dishes and keeping things clean is really important when someone is going through chemo. This dishwasher is about more than convenience for the Scott's and being able to see this need met, before the need was truly voiced, has been amazing.
Our God is amazing and I am reminded once again of what a great and mighty God we serve. I feel so blessed to have been a part of God's plan. Thank you Calgary stranger, you were worth getting up at 3am for. She may never read this and know what she's done, but she has blessed not only this family, but those that will hear the story as well.
This morning as I got ready, I kept thinking about how positive the Scott's have chosen to be. I am so blessed to call them friends. God never promised that life would be easy and full of good times. He does promise to give us strength each day and to love us unconditionally. His love is enough. Seeing my friends walk through a journey that is not easy, that carries a great deal of unknowns and one that doesn't seem fair...I am reminded again that God is enough. That is their foundation and the source of their joy. I will leave encouraged on Tuesday.
When planning my trip to Winnipeg I wanted to find a cheap flight. I also wanted to have as much time with Karen and Rob as possible. I have a 4 year old daughter and an 8 month old. I couldn't be gone for too long as my 4 year old was going to be staying in Calgary. I chose a flight that arrived in Winnipeg at 8am on Saturday morning. It seemed like a great idea at the time, it gave me the entire day here and the flight was cheaper. I failed to process the reality of getting up at 3am and dragging an 8 month old out of bed to catch my flight.
Yesterday at 3am I rolled out of bed feeling like a crazy woman. I dragged an exhausted baby into a waiting cab and arrived at the airport. Just after 4am I was sitting at my gate, waiting to board my flight. I had Stella on my lap when two women came and sat next to me. The dreaded question came, "is she your first?" This is a difficult question for me, she's actually my third. I chose to answer her question and hoped she wouldn't push the issue. Then it came, "how old are your other two?" There's no way around it, my oldest is 4 and my middle daughter is already in Heaven. My beautiful Hope Taylor will never experience more than her 1st birthday on earth. I always smile while explaining, trying to keep people from feeling bad about asking. I do love to talk about her and it doesn't offend me. It's more the awkwardness of feeling their tension and the regret I feel they have for talking to me.
When the moment passed, she asked why I was headed to Winnipeg. I explained that I was coming to visit my best friend as her husband was going through chemo. I told her that myself and another friend were coming to do some cooking, make her smile and try to help out around the house. As I walked onto the plane, I kept thinking, "why did I tell her so much about my life?" I felt awkward about being an 'over-sharer'.
I sat on the plane waiting for everyone to board and the woman I had been chatting with popped into the seat beside me. She said, "I know this will sound weird, but my husband and I have been praying about some money we want to do something with. After talking to you, I'd really like to give it to your friend." I smiled and explained that it didn't sound weird at all, I told her that I was a Christian and I thought that her gift would be a great blessing to my friends. I gave her my phone number and email address and she got up to find her own seat. She never told me how much they wanted to give and I never asked.
I shared this story with Karen when I arrived and she was touched to hear about a stranger that would take the time to care. Then the whirlwind of all the things we wanted to accomplish began and I didn't think much of it. As I was doing things in the kitchen, I noticed Karen was washing almost everything in the sink. She explained that their old dishwasher wasn't working very well anymore and they needed a new one, but couldn't afford it. In my naturally sarcastic and slightly cocky way, I joked that I would find a way to solve her problem.
This morning in church the sermon was about service. The speaker specifically said that we need to find a need and fill it. I enjoy serving others and began thinking of needs that I could fill. Then later this evening as we sat watching a tv show, my cell phone pinged as an email arrived. I opened the email and found a message from the stranger in the airport. I just looked up and smiled at my friends. They asked me what was going on and in great delight, I was able to tell them that it was time to go shopping. Tomorrow we're going to go out and replace that old dishwasher for Karen and Rob. The amazing thing is, the people who paid for the dishwasher will likely never meet Karen or Rob and have no idea how amazing this gift is.
Sanitizing dishes and keeping things clean is really important when someone is going through chemo. This dishwasher is about more than convenience for the Scott's and being able to see this need met, before the need was truly voiced, has been amazing.
Our God is amazing and I am reminded once again of what a great and mighty God we serve. I feel so blessed to have been a part of God's plan. Thank you Calgary stranger, you were worth getting up at 3am for. She may never read this and know what she's done, but she has blessed not only this family, but those that will hear the story as well.
This morning as I got ready, I kept thinking about how positive the Scott's have chosen to be. I am so blessed to call them friends. God never promised that life would be easy and full of good times. He does promise to give us strength each day and to love us unconditionally. His love is enough. Seeing my friends walk through a journey that is not easy, that carries a great deal of unknowns and one that doesn't seem fair...I am reminded again that God is enough. That is their foundation and the source of their joy. I will leave encouraged on Tuesday.
Thursday 20 November 2014
Single Digits!
It is hard for me to believe that we are nearing the end of November. We started this month knowing that the whole month would include almost daily treatments and hours spent at Cancer Care. I am happy to report that we are into the single digits for radiation and one round of chemo left. Isaac very happily erased number 10 (which is his favourite number!) from the countdown today. Only 9 left!!! Since radiation is cumulative it means that the end is the hardest but it is so good to be getting close to the end of his treatment.
Last week was very busy and is the reason I haven't done an update in awhile. The week of chemo means many more appointments and time at the hospital. Plus I was working last week so scheduling was complicated and very busy. We are very happy to have round 2 of chemo done. It was a tougher round I would say. Rob had very little appetite and was very tired for about 5 days. It wasn`t until Monday that he was really starting to feel like himself again. Not only is the chemo and anti nausea drugs hard on your physical body, it also affects your mind and your thoughts. It is often called ``chemo brain`` and I can attest to the fact it exists. It is almost like Rob gets a fog in his brain and he isn`t able to make simple decisions and can even have thoughts that he normally would not have. I know it is tough on Rob to feel this way and it is also hard for Isaac and I and we are glad when Rob gets out of the fog. He has one more round the first week of December and it will likely be the toughest however it is the last one and we will celebrate that.
The side effects of radiation are building up and Rob is seeing a lot of change in his mouth and neck. The skin on his neck looks like it has a sun burn but he is keeping it moisturized with special lotion and it is helping it from being painful and breaking down. The inside of his mouth is getting very sore and bleeds. It takes Rob a lot of time after he eats anything to clean his mouth. He also wakes up in the night and had to clear the phlegm. This is all normal for treatment but it is not fun at all especially since he doesn't have a normal working tongue. That all being said the pain is manageable and Rob is not taking any pain meds at this time. We know that the last 9 treatments will be tough and he will feel the effects for a few weeks after but if it gets rid of the cancer it is all worth it.
Today we asked some questions about what happens after treatment. We were told that about 6 weeks after everything is done he will have either a CT scan or an MRI and that will be used as the base line. He will be followed very carefully and regularly and the first year is the most critical. If something were to come back it would likely grow very quickly and they would know within the first year. We continue to ask for God to heal Rob completely and that the cancer would be gone from his body and never come back.
Rob will also have a long recovery from the surgeries and reconstruction he has had. We are not sure what it will look like exactly but a lot needs to happen before he is able to return to work. The main thing being his speech. At this point the focus has been on the radiation and chemo so we will wait and see what is next.
Many have been asking how I am healing up from my surgery and I am happy to say things are good. I have been on light duties at work for 3 weeks to make sure I didn`t damage anything internally before it was healed. Next week I will go back to my regular duties at work and I am sure that as long as I ease into it, I will be good. Now that I don`t have an appendix at least I never have to worry about lower right abdominal pain again!!!
This weekend my friend Amy from Calgary and her baby Stella, as well as my friend Shelly from Peterborough are coming for a few days. They are coming to distract us and help us out around the house. I can not wait to see them and look forward to some good times with old friends. I am sure Rob will need some quiet time after they leave but he will enjoy their company too.
Today at my doctors office the receptionist made a comment to me about how amazing she thinks we are and that we are so young but dealing with everything so well. I was able to tell her that we believe in a God who heals and we have amazing support and that is why we can face this and still smile. Thank you for all the support, love and prayers.
Love Karen
Last week was very busy and is the reason I haven't done an update in awhile. The week of chemo means many more appointments and time at the hospital. Plus I was working last week so scheduling was complicated and very busy. We are very happy to have round 2 of chemo done. It was a tougher round I would say. Rob had very little appetite and was very tired for about 5 days. It wasn`t until Monday that he was really starting to feel like himself again. Not only is the chemo and anti nausea drugs hard on your physical body, it also affects your mind and your thoughts. It is often called ``chemo brain`` and I can attest to the fact it exists. It is almost like Rob gets a fog in his brain and he isn`t able to make simple decisions and can even have thoughts that he normally would not have. I know it is tough on Rob to feel this way and it is also hard for Isaac and I and we are glad when Rob gets out of the fog. He has one more round the first week of December and it will likely be the toughest however it is the last one and we will celebrate that.
The side effects of radiation are building up and Rob is seeing a lot of change in his mouth and neck. The skin on his neck looks like it has a sun burn but he is keeping it moisturized with special lotion and it is helping it from being painful and breaking down. The inside of his mouth is getting very sore and bleeds. It takes Rob a lot of time after he eats anything to clean his mouth. He also wakes up in the night and had to clear the phlegm. This is all normal for treatment but it is not fun at all especially since he doesn't have a normal working tongue. That all being said the pain is manageable and Rob is not taking any pain meds at this time. We know that the last 9 treatments will be tough and he will feel the effects for a few weeks after but if it gets rid of the cancer it is all worth it.
Today we asked some questions about what happens after treatment. We were told that about 6 weeks after everything is done he will have either a CT scan or an MRI and that will be used as the base line. He will be followed very carefully and regularly and the first year is the most critical. If something were to come back it would likely grow very quickly and they would know within the first year. We continue to ask for God to heal Rob completely and that the cancer would be gone from his body and never come back.
Rob will also have a long recovery from the surgeries and reconstruction he has had. We are not sure what it will look like exactly but a lot needs to happen before he is able to return to work. The main thing being his speech. At this point the focus has been on the radiation and chemo so we will wait and see what is next.
Many have been asking how I am healing up from my surgery and I am happy to say things are good. I have been on light duties at work for 3 weeks to make sure I didn`t damage anything internally before it was healed. Next week I will go back to my regular duties at work and I am sure that as long as I ease into it, I will be good. Now that I don`t have an appendix at least I never have to worry about lower right abdominal pain again!!!
This weekend my friend Amy from Calgary and her baby Stella, as well as my friend Shelly from Peterborough are coming for a few days. They are coming to distract us and help us out around the house. I can not wait to see them and look forward to some good times with old friends. I am sure Rob will need some quiet time after they leave but he will enjoy their company too.
Today at my doctors office the receptionist made a comment to me about how amazing she thinks we are and that we are so young but dealing with everything so well. I was able to tell her that we believe in a God who heals and we have amazing support and that is why we can face this and still smile. Thank you for all the support, love and prayers.
Love Karen
Sunday 9 November 2014
Round 2 of Chemo
This week was a quieter week for appointments. Rob had radiation every day and is getting the hang of going to Cancer Care each day. He has now completed 15 out of 33 radiation treatments!! Each week on the weekend we have a look at how the upcoming week looks and plan out who is driving, when I am working and where Isaac will be. As you can imagine this is sometimes quite complicated but with help from family and friends we are managing well.
Rob had a follow up with Dr Butler, Radiation Oncologist, and Dr Sharma, Medical Oncologist this week. Both are pleased with how Rob is doing so far and his blood work from having chemo seems to be going back to normal and he will be able to have his second round. They both looked in his mouth and are really starting to notice changes but say they are normal and have lots of pointers to help out. Rob had his weekly appointment with the Dietician, Gina and she was thrilled because Rob gained weight this past week!! After chemo last round he didn't eat much for a few days and lost some weight so over the past 2 weeks he has been trying to gain it back and had success! Even with a sore mouth and not always wanting to eat it is very important to keep his nutrition up and stay hydrated because that will help his body recover from the drugs he is being given.
This week we decided to bring Isaac along with us one day when there were some shorter appointments. We didn't bring him because we couldn't find someone to look after him but because we thought it would be good for him to see where Rob comes each day. He did awesome and the doctors and other staff were so welcoming to him. That is one of the great things about Cancer Care...they care about the patient but also about the support team around them. Isaac is a huge support to Rob and the staff would know this. I am sure based on his time there that Isaac will gladly come back again plus now he knows what Daddy is busy doing each day. It was a win/win for everyone!
We are heading into this week of chemo with a little more knowledge of what to expect but this can be both a good and a bad thing. We know what is coming in the next few days but some of those things are not great. Rob had manageable side effects last round but he definitely wasn't himself for a few days. It will be a tougher week for sure but we will take it day by day. We know that by the end of the week he will be through the worst and will only have one more round left. Treatment day is on Tuesday and then he will have hydration on Wednesday and Thursday and help his kidneys flush the extra,
Back in September one of my girls that I mentored at my old church sent me an email to encourage me. It came at the perfect time and I cherish the words she wrote. She also shared 2 verses with me and I have read them many times since then. One of them was Zephaniah 3:17 which says, "For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful song." What a reassurance it is for us that God cares enough about our family that he takes away all the fears we have with his love. He loves us so much that he gave his Son to die on the cross and take away our sins. This is the reason we can face each day with a joyful heart and even through tough times we have hope.
Love Karen
Rob had a follow up with Dr Butler, Radiation Oncologist, and Dr Sharma, Medical Oncologist this week. Both are pleased with how Rob is doing so far and his blood work from having chemo seems to be going back to normal and he will be able to have his second round. They both looked in his mouth and are really starting to notice changes but say they are normal and have lots of pointers to help out. Rob had his weekly appointment with the Dietician, Gina and she was thrilled because Rob gained weight this past week!! After chemo last round he didn't eat much for a few days and lost some weight so over the past 2 weeks he has been trying to gain it back and had success! Even with a sore mouth and not always wanting to eat it is very important to keep his nutrition up and stay hydrated because that will help his body recover from the drugs he is being given.
This week we decided to bring Isaac along with us one day when there were some shorter appointments. We didn't bring him because we couldn't find someone to look after him but because we thought it would be good for him to see where Rob comes each day. He did awesome and the doctors and other staff were so welcoming to him. That is one of the great things about Cancer Care...they care about the patient but also about the support team around them. Isaac is a huge support to Rob and the staff would know this. I am sure based on his time there that Isaac will gladly come back again plus now he knows what Daddy is busy doing each day. It was a win/win for everyone!
We are heading into this week of chemo with a little more knowledge of what to expect but this can be both a good and a bad thing. We know what is coming in the next few days but some of those things are not great. Rob had manageable side effects last round but he definitely wasn't himself for a few days. It will be a tougher week for sure but we will take it day by day. We know that by the end of the week he will be through the worst and will only have one more round left. Treatment day is on Tuesday and then he will have hydration on Wednesday and Thursday and help his kidneys flush the extra,
Back in September one of my girls that I mentored at my old church sent me an email to encourage me. It came at the perfect time and I cherish the words she wrote. She also shared 2 verses with me and I have read them many times since then. One of them was Zephaniah 3:17 which says, "For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful song." What a reassurance it is for us that God cares enough about our family that he takes away all the fears we have with his love. He loves us so much that he gave his Son to die on the cross and take away our sins. This is the reason we can face each day with a joyful heart and even through tough times we have hope.
Love Karen
Sunday 2 November 2014
10 down!
I can hardly believe it was over a week ago that I wrote the last blog post but I am happy to say that Rob has 10 treatments of radiation done already and has 23 left to go. We find having a countdown going helps to make it all feel more doable. After Mondays treatment he will be 1/3 of the way done!! So far things are going pretty well and Rob is still able to do many things. Rob is starting to feel soreness in his mouth and spends a lot of time taking care of his mouth. That being said he does not have severe pain or sores in his mouth like they said he might by this time. Rob and I were talking the other night about how he is feeling and what the doctors and nurses have told us he might be feeling (they give you worst case scenarios) and we are convinced that because of the army of people praying, he is not feeling the terrible side effects. We know that you are all praying that the treatments get rid of the cancer and that Rob does not have awful side effects and so far they are manageable. We are so grateful to have so many people praying for Rob and ask that you continue to pray.
On November 11th Rob will have his second round of chemo. He was able to get through the first one by sleeping a lot and making sure he took all of his anti nausea pills. He was taking 4 different pills to keep the nausea away and for the most part they did their job. We will go into the second round with a little more knowledge of what to expect and praying that the side effects are no worse then the first time.
Rob has to be very careful not to lose weight while he is getting treatment and during recovery. For the most part (except for a few days around chemo) he has a very good appetite. This is partially to do with his body rapidly trying to build new healthy cells and also because he is taking some medicine that has a steroid in it. Right now he is able to eat soft food and cut it up but if it is too tough he purees it. He also has lots of shakes and smoothies packed with protein. Over the next few weeks as the radiation adds up he may have a tougher time but we continue to pray that he has minimum side effects and can continue to eat they was he is now.
I saw my family doctor last Thursday and will be heading back to work starting Monday on light duties. I am healing well, however if I push it too much I could cause some problems which would be a big setback. I am still not allowed to lift anything heavier then 10 lbs and I can't push or pull anything over 100 lbs. This is a big deal when you work at a nursing home and push wheelchairs all day. Even pushing a half full shopping cart hurt my stomach a little. I am able to know very quickly if something is too much for me and will be able to do modified duties at work. In 2 1/2 weeks I will go back and see my doctor and hopefully will get the ok to resume my normal job and life.
We get asked often "how are you doing?" and it is a hard question to answer. We have moments when things feel totally fine and we have other moments that we feel completely overwhelmed and that we can not handle it. That being said we are not in the depths of despair but instead we go forward each moment in faith. Would we change our situation if you could?...yes of course. However we don't have that choice so we continue to walk forward one small step at a time knowing that God is walking right beside us and will not leave us. That doesn't mean that life will be easy but it means we are not alone. God continues to use many things and people to encourage us and remind us of this. Thank you for your prayers and support.
Love Karen
On November 11th Rob will have his second round of chemo. He was able to get through the first one by sleeping a lot and making sure he took all of his anti nausea pills. He was taking 4 different pills to keep the nausea away and for the most part they did their job. We will go into the second round with a little more knowledge of what to expect and praying that the side effects are no worse then the first time.
Rob has to be very careful not to lose weight while he is getting treatment and during recovery. For the most part (except for a few days around chemo) he has a very good appetite. This is partially to do with his body rapidly trying to build new healthy cells and also because he is taking some medicine that has a steroid in it. Right now he is able to eat soft food and cut it up but if it is too tough he purees it. He also has lots of shakes and smoothies packed with protein. Over the next few weeks as the radiation adds up he may have a tougher time but we continue to pray that he has minimum side effects and can continue to eat they was he is now.
I saw my family doctor last Thursday and will be heading back to work starting Monday on light duties. I am healing well, however if I push it too much I could cause some problems which would be a big setback. I am still not allowed to lift anything heavier then 10 lbs and I can't push or pull anything over 100 lbs. This is a big deal when you work at a nursing home and push wheelchairs all day. Even pushing a half full shopping cart hurt my stomach a little. I am able to know very quickly if something is too much for me and will be able to do modified duties at work. In 2 1/2 weeks I will go back and see my doctor and hopefully will get the ok to resume my normal job and life.
We get asked often "how are you doing?" and it is a hard question to answer. We have moments when things feel totally fine and we have other moments that we feel completely overwhelmed and that we can not handle it. That being said we are not in the depths of despair but instead we go forward each moment in faith. Would we change our situation if you could?...yes of course. However we don't have that choice so we continue to walk forward one small step at a time knowing that God is walking right beside us and will not leave us. That doesn't mean that life will be easy but it means we are not alone. God continues to use many things and people to encourage us and remind us of this. Thank you for your prayers and support.
Love Karen
Thursday 23 October 2014
Who needs their appendix anyway!?
" Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23
On Saturday I sat at the computer and wrote the last blog entry having no idea what was going to happen that night. I wasn't feeling great from about noon on but I wasn't going to let that stop me. We had plan to go to our friends Jon and Jen's that night to hang out for a little bit and let the boys play. I figured I could lay on their couch just the same as I could lay on mine so we went. As we sat there the pain in my stomach got worse and I was feeling more and more nauseated. Looking back I am very thankful we went to Jon and Jen's that night because likely I would have just gone to bed and who knows what would have happened but they insisted that I go to the hospital. So Rob took Isaac home, Jon stayed home to put their boys to bed and Jen & I headed to Concordia Hospital. We arrived around 9pm...and then we waited and waited and waited. I was able to get comfortable sitting there but I still had the pain and knew I needed to be there. Around 3:30am I was finally brought to a room and about 4:30am the doctor came to see me. He said that he was 80% sure that I had an appendicitis. My white blood cells were up and I had pain on my right side but I didn't have a fever so that is why he wasn't 100% sure. He wouldn't be able to confirm until I had a CT scan sometime after 8:30am. After he left I just looked at Jen and burst into tears. I know that God has a plan and we need to trust him but aren't we going through enough?! At this point I don't think we will know why this is all happening right now but we still trust in a God who is faithful. Jen went home just before 7 am after pulling an all nighter with me and about 10 minutes later Rob arrived. About 9:30am I was taken to my CT Scan and then at 10:30am a doctor came and confirm what I feared. I had an appendicitis and would be transferred to another hospital shortly and have surgery that day.
After a bumpy ambulance ride I arrived at St Boniface and met a lovely nurse and lots of doctors. Just after 2pm I went into surgery which was less than an hour long. I had never had surgery before so was a little anxious about being put under and Rob had never had to watch me be taken away so he was anxious too. It was so weird to be doing a role reversal but it was a good perspective for both of us. I am happy to say that my surgery went very smoothly and they were able to remove my appendix before it ruptured laproscopically. This means that my recovery is 2-4 weeks versus 6 weeks if they had to do a bigger incision. It also means I could go home much quicker so on Monday morning, less then 24 hours after my surgery, I was able to come home. I think that in a normal circumstance an appendectomy wouldn't be super hard to deal with but going into the week we had it was very overwhelming. I am doing well, just moving very slowly. I had to miss some of Rob's appointments this week but I am happy that I was able to be at some of them and his mom went to the rest. I am not allowed to lift anything and can't even bend down to do up my own shoes. I am told to just be patient and give my body time to heal. Within a few weeks I should be back to normal and will be able to help Rob and look after Isaac.
Another big help is my best friend Sarah from Ontario was able to completely cancel her life for a week and make arrangements for everything to be looked after at home so she could come here for the week. We also had someone offer to pay for her flight which we are so grateful for. So on Monday evening, a few hours after I was home from hospital, she arrived and is here until Saturday. It has been great to have someone here to do laundry, clean the kitchen, get groceries and play with Isaac amongst other things. Both Rob and I are so grateful she was able to come and help us out.
Rob also had a big week this week. On Monday he started radiation and has had 4 treatments so far. They are going well but usually the first 2 weeks you don't have many side effects. Tuesday was the start of chemo. He will have 3 treatments throughout the next 6 weeks. They also give him extra hydration through IV for a few days plus a lot of anti nausea pills. Thankfully the anti nausea seem to be working. Rob is definitely not his usual self but he has taken this week very well. His biggest side effects to this point are an upset stomach and very little appetite at times and fatigue. Rob doesn't normally sleep very much but he is very tired now even after a few hours. We are hoping that each chemo are the same and that the weeks between give him time to recover. We will be glad for the weekend because we will have a break of being at the hospital. Adding up the hours Rob has been there this week for appointments for over 26 hours!
On top of starting radiation and chemo this week he also had follow up with Dr Nason and Dr Hayakawa ( his plastic surgeon who did part of his first surgery). Both were pleased with how Rob was healing but said that he needed to get through the rest of the treatment before any other steps were taken. Rob was encouraged to keep his tongue moving and practice swallowing so that his tongue doesn't stiffen up.
We just never know what we can handle but I can tell you one thing for sure, we could never handle any of this alone. We have an amazing support of people surrounding us, praying for us, bringing us meals, helping with Isaac, and just being there for us. Most importantly we have a relationship with a God who is faithful and loves us more than we will ever know.
Love Karen
On Saturday I sat at the computer and wrote the last blog entry having no idea what was going to happen that night. I wasn't feeling great from about noon on but I wasn't going to let that stop me. We had plan to go to our friends Jon and Jen's that night to hang out for a little bit and let the boys play. I figured I could lay on their couch just the same as I could lay on mine so we went. As we sat there the pain in my stomach got worse and I was feeling more and more nauseated. Looking back I am very thankful we went to Jon and Jen's that night because likely I would have just gone to bed and who knows what would have happened but they insisted that I go to the hospital. So Rob took Isaac home, Jon stayed home to put their boys to bed and Jen & I headed to Concordia Hospital. We arrived around 9pm...and then we waited and waited and waited. I was able to get comfortable sitting there but I still had the pain and knew I needed to be there. Around 3:30am I was finally brought to a room and about 4:30am the doctor came to see me. He said that he was 80% sure that I had an appendicitis. My white blood cells were up and I had pain on my right side but I didn't have a fever so that is why he wasn't 100% sure. He wouldn't be able to confirm until I had a CT scan sometime after 8:30am. After he left I just looked at Jen and burst into tears. I know that God has a plan and we need to trust him but aren't we going through enough?! At this point I don't think we will know why this is all happening right now but we still trust in a God who is faithful. Jen went home just before 7 am after pulling an all nighter with me and about 10 minutes later Rob arrived. About 9:30am I was taken to my CT Scan and then at 10:30am a doctor came and confirm what I feared. I had an appendicitis and would be transferred to another hospital shortly and have surgery that day.
After a bumpy ambulance ride I arrived at St Boniface and met a lovely nurse and lots of doctors. Just after 2pm I went into surgery which was less than an hour long. I had never had surgery before so was a little anxious about being put under and Rob had never had to watch me be taken away so he was anxious too. It was so weird to be doing a role reversal but it was a good perspective for both of us. I am happy to say that my surgery went very smoothly and they were able to remove my appendix before it ruptured laproscopically. This means that my recovery is 2-4 weeks versus 6 weeks if they had to do a bigger incision. It also means I could go home much quicker so on Monday morning, less then 24 hours after my surgery, I was able to come home. I think that in a normal circumstance an appendectomy wouldn't be super hard to deal with but going into the week we had it was very overwhelming. I am doing well, just moving very slowly. I had to miss some of Rob's appointments this week but I am happy that I was able to be at some of them and his mom went to the rest. I am not allowed to lift anything and can't even bend down to do up my own shoes. I am told to just be patient and give my body time to heal. Within a few weeks I should be back to normal and will be able to help Rob and look after Isaac.
Another big help is my best friend Sarah from Ontario was able to completely cancel her life for a week and make arrangements for everything to be looked after at home so she could come here for the week. We also had someone offer to pay for her flight which we are so grateful for. So on Monday evening, a few hours after I was home from hospital, she arrived and is here until Saturday. It has been great to have someone here to do laundry, clean the kitchen, get groceries and play with Isaac amongst other things. Both Rob and I are so grateful she was able to come and help us out.
Rob also had a big week this week. On Monday he started radiation and has had 4 treatments so far. They are going well but usually the first 2 weeks you don't have many side effects. Tuesday was the start of chemo. He will have 3 treatments throughout the next 6 weeks. They also give him extra hydration through IV for a few days plus a lot of anti nausea pills. Thankfully the anti nausea seem to be working. Rob is definitely not his usual self but he has taken this week very well. His biggest side effects to this point are an upset stomach and very little appetite at times and fatigue. Rob doesn't normally sleep very much but he is very tired now even after a few hours. We are hoping that each chemo are the same and that the weeks between give him time to recover. We will be glad for the weekend because we will have a break of being at the hospital. Adding up the hours Rob has been there this week for appointments for over 26 hours!
On top of starting radiation and chemo this week he also had follow up with Dr Nason and Dr Hayakawa ( his plastic surgeon who did part of his first surgery). Both were pleased with how Rob was healing but said that he needed to get through the rest of the treatment before any other steps were taken. Rob was encouraged to keep his tongue moving and practice swallowing so that his tongue doesn't stiffen up.
We just never know what we can handle but I can tell you one thing for sure, we could never handle any of this alone. We have an amazing support of people surrounding us, praying for us, bringing us meals, helping with Isaac, and just being there for us. Most importantly we have a relationship with a God who is faithful and loves us more than we will ever know.
Love Karen
Saturday 18 October 2014
One week and 13 appointments!
The past 2 weeks has been quiet for appointments but we are about to make up for it this week. Between Monday and Friday this week Rob has 13 appointments. Some are bunched together but a few will require going back and forth twice in a day. We knew this week would come and there are mixed feeling about it. Part of us feel ready to get things going because the quicker it starts the quicker it will be done...the other part dreads the potential side effects and all the unknowns that come with chemo and radiation. Regardless of the effects of the treatment we are praying for complete healing and that the radiation and chemo would do what it is supposed to do and get rid of all of the cancer.
On October 10th we met with the medical oncologist (chemo doctor). This was a new doctor that we had never seen before. He didn't tell us any new news that we did know before but he just talked about the side effects and the reality of the disease very bluntly and it didn't sit well with me. Sometimes the doctors ease your worries and fears but in this case he almost added more. I think once we get started things will settle down but the last week has been filled with lots of tears, fears and prayers. Rob and I often have our bad days or moments at opposite times so we are able to support each other when we need to. The evidence of God surrounding us is incredible and we know there is an army praying for us as we walk this journey. We need to just take it day by day and not worry about the future.
As we head into radiation and chemo there are many possible side effects and we were told about even though he may not experience them all. The most common ones are nausea (which he has been given 4 different prescriptions for), vomiting, numbness and tingling of the ears and sores in the mouth. With Rob already having 2 surgeries done in his mouth we pray that he does not experience these. Radiation is 5 days a week for 6 1/2 weeks with regular blood work and follow ups. The good thing about radiation is that is only takes about 20 minutes. Chemo will be 3 times over the 6 1/2 weeks with the first one this Tuesday. It takes about 6 hours sitting with an IV on chemo day and then for the 2 days that follow he will have to go back and get 2 hours of IV fluids to ensure it doesn't sit in his kidneys.
Through all of this I have been trying my best to go to work. I work about half time and as long as I know Rob is fine at home and Isaac is cared for I am good to be at work. However when Rob is at appointments I find it hard to be at work and not there supporting him. My work has been very good and flexible and I am thankful for that. That being said I find all of the planning and arranging very overwhelming sometimes. I like things to be planned out but lately have found there are times when it feels too complicated and I have a hard time with it. Please pray that I am able to handle the scheduling part of all this and do not get overwhelmed.
We met with the woman that is arranging Rob's Long Term Disability the other week and she said that with Rob's case it is pretty straight forward. We will have a few weeks in between EI and LTD but God has been blessing us and we are so thankful for that. LTD has a certain way they determine how much money you receive and we are praying this amount is calculated in our favour.
Since surgery Rob has been working on his talking and ability to eat. He is slowly progressing with both things and is even able to eat some soft solid food now. One thing that he is having a hard time with is the actually movement of his tongue. The second surgery required the surgeons to take some of the muscle at the base of the tongue which could be why he is having a tougher time with it. We are praying that with time the movement comes back and that he continues to be encouraged by his improvement. Sometimes recovery feels like a very slow thing but yesterday I showed Rob a picture of himself right after his surgery a month ago to encourage him in how far he has come.
This week Rob and I were able to get away for a night just the 2 of us to relax. We had a great time in Hecla just being together. On Friday we went for a little walk at the tip of the island and there is a viewing tower there. As we got to the top right away Rob noticed a bald eagle flying close by. Rob loves bald eagles and its in little things like that that we are reminded that God is with us.
Thank you once again for caring for us and praying to our God who can do ALL things.
Love Karen
On October 10th we met with the medical oncologist (chemo doctor). This was a new doctor that we had never seen before. He didn't tell us any new news that we did know before but he just talked about the side effects and the reality of the disease very bluntly and it didn't sit well with me. Sometimes the doctors ease your worries and fears but in this case he almost added more. I think once we get started things will settle down but the last week has been filled with lots of tears, fears and prayers. Rob and I often have our bad days or moments at opposite times so we are able to support each other when we need to. The evidence of God surrounding us is incredible and we know there is an army praying for us as we walk this journey. We need to just take it day by day and not worry about the future.
As we head into radiation and chemo there are many possible side effects and we were told about even though he may not experience them all. The most common ones are nausea (which he has been given 4 different prescriptions for), vomiting, numbness and tingling of the ears and sores in the mouth. With Rob already having 2 surgeries done in his mouth we pray that he does not experience these. Radiation is 5 days a week for 6 1/2 weeks with regular blood work and follow ups. The good thing about radiation is that is only takes about 20 minutes. Chemo will be 3 times over the 6 1/2 weeks with the first one this Tuesday. It takes about 6 hours sitting with an IV on chemo day and then for the 2 days that follow he will have to go back and get 2 hours of IV fluids to ensure it doesn't sit in his kidneys.
Through all of this I have been trying my best to go to work. I work about half time and as long as I know Rob is fine at home and Isaac is cared for I am good to be at work. However when Rob is at appointments I find it hard to be at work and not there supporting him. My work has been very good and flexible and I am thankful for that. That being said I find all of the planning and arranging very overwhelming sometimes. I like things to be planned out but lately have found there are times when it feels too complicated and I have a hard time with it. Please pray that I am able to handle the scheduling part of all this and do not get overwhelmed.
We met with the woman that is arranging Rob's Long Term Disability the other week and she said that with Rob's case it is pretty straight forward. We will have a few weeks in between EI and LTD but God has been blessing us and we are so thankful for that. LTD has a certain way they determine how much money you receive and we are praying this amount is calculated in our favour.
Since surgery Rob has been working on his talking and ability to eat. He is slowly progressing with both things and is even able to eat some soft solid food now. One thing that he is having a hard time with is the actually movement of his tongue. The second surgery required the surgeons to take some of the muscle at the base of the tongue which could be why he is having a tougher time with it. We are praying that with time the movement comes back and that he continues to be encouraged by his improvement. Sometimes recovery feels like a very slow thing but yesterday I showed Rob a picture of himself right after his surgery a month ago to encourage him in how far he has come.
This week Rob and I were able to get away for a night just the 2 of us to relax. We had a great time in Hecla just being together. On Friday we went for a little walk at the tip of the island and there is a viewing tower there. As we got to the top right away Rob noticed a bald eagle flying close by. Rob loves bald eagles and its in little things like that that we are reminded that God is with us.
Thank you once again for caring for us and praying to our God who can do ALL things.
Love Karen
Sunday 12 October 2014
A Thanksgiving reflection from Rob
Every year on Thanksgiving Sunday our church opens up the floor for people to thank God publicly for what he has been doing in their lives. It is a time to offer up our praise to God in a public yet personal way. Every year I have felt challenged to go up, but I've always had an excuse. So this Sunday, Karen and I shared in front of the congregation, in obedience to God's Word to be thankful. In Philippians 4:6 it is written: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."
Thanks be to God for his unfailing love! This year I have experienced God's love in ways that I would not have understood a year ago.
I thank God for my Saviour, Jesus Christ, who suffered and died for me on the cross, and gives me hope and strength.
I thank God for my wife, Karen, who has been so faithful and supportive.
I thank God for my son, Isaac, who gives me such joy and motivation to fight this disease.
I thank God for my family that has supported me through all of this.
I thank God for his church, this community of believers that bind up the broken and surround us with care and compassion. They have been such an outpouring of God's love.
I thank God for the medical advancements in our country and especially the health professionals that have dedicated their lives to healing and caring for those in need.
I thank God for showing me there is purpose in pain, that he is molding and shaping me more into the image of his Son, Jesus Christ. God provides grace in our suffering as Christians, to point others to Christ, the one who suffered on the cross to provide our saving grace. You see, in our suffering, God makes a way for us to become like Christ, and uses that to bring others into a relationship with him.
So again, Thanks be to God for his unfailing love!
Rob
Thanks be to God for his unfailing love! This year I have experienced God's love in ways that I would not have understood a year ago.
I thank God for my Saviour, Jesus Christ, who suffered and died for me on the cross, and gives me hope and strength.
I thank God for my wife, Karen, who has been so faithful and supportive.
I thank God for my son, Isaac, who gives me such joy and motivation to fight this disease.
I thank God for my family that has supported me through all of this.
I thank God for his church, this community of believers that bind up the broken and surround us with care and compassion. They have been such an outpouring of God's love.
I thank God for the medical advancements in our country and especially the health professionals that have dedicated their lives to healing and caring for those in need.
I thank God for showing me there is purpose in pain, that he is molding and shaping me more into the image of his Son, Jesus Christ. God provides grace in our suffering as Christians, to point others to Christ, the one who suffered on the cross to provide our saving grace. You see, in our suffering, God makes a way for us to become like Christ, and uses that to bring others into a relationship with him.
So again, Thanks be to God for his unfailing love!
Rob
Sunday 5 October 2014
Exercising patience.
The other day a friend of mine sent me some quotes from a Tim Keller book she had read. One that really struck home with both Rob and I was “You don’t really know Jesus is all you need until Jesus is all you have." We both feel that without Jesus in our lives we would be in such a bad place. When you go through something that rocks your world you get to a point when all the things that used to matter don't anymore. We get so caught up worrying about so many things in life that we lose focus on what is important. Jesus loves us and died on the cross to take away our sins....that is all that matters. What is important is that we have a personal relationship with Jesus and that we serve Him and honor Him in everything we do. Sure we need clothes, food, shelter, family, friends...all of those are important but at the end of our lives all we will have is Jesus so that is where our focus should be. Without Jesus we would not have the hope we have right now...that is what allows us to still have joy in suffering and keeps a smile on our faces.
My last post I was praying that Rob would come home on Monday but apparently God wanted me to exercise some patience. I arrived on Monday first thing all set for a busy day and hoping for Rob to get discharged however that was not what the day looked like at all. Around 1:30pm Desmond (SLP) came by to assess Rob's swallowing again. He still felt that Rob needs to be on thickened fluids and a blenderized diet but he gave the ok to go home and practice swallowing until he feels comfortable with additional things. That was the good news of the day....the bad news was at 5:30pm after waiting all day we found out the doctor wasn't coming in that day. Since Rob's surgery was at a different hospital we were waiting on a different doctor to discharge him and we didn't know his schedule. I was beyond frustrated with the lack of communication and needed to vent so Rob encouraged me to spend sometime away from the hospital with a friend that evening. I did go back to see Rob and played a game in the atrium but I left a little earlier than normal and hung out with a friend for awhile. Rob is a smart guy and knew I needed some time to chat and it turned out to be a good thing for both of us. After some fresh chocolate chip cookies and a chat I had a much better perspective.
Tuesday morning came along and by 9:30am the doctor had come by and given the ok to go home. Rob messaged me and said he would be ready in a few hours and that Isaac and I could come and get him. He got the rest of the staples removed and the IV taken out. Once the discharge papers were in order he was free to go. The smile on Rob's face as we drove away was priceless! The feeling of having him come home is unreal and Isaac just kept saying how happy he was that Daddy could come home.
Now that he is home he is busy recovering from surgery to prepare for radiation and chemo. He is able to do some normal things and is much more able to do things than last time. He is happy to be sleeping at home again and has been having very good nights which we are very thankful for. The thing that takes up the most time (besides sleeping) is eating. Food needs to be pureed and for the most part drinks need to be thickened. You would be surprised at what you can puree when you don't have the option of eating it whole. For the most part Rob has been eating the same food as Isaac and I but it just needs prepared a little differently. Continue to pray that Rob is able to regain his ability to swallow and eventually chew. It is very important that he doesn't lose weight right now so he is as strong as possible for chemo and radiation.
On Thursday this past week we headed to cancer care to meet with Dr Butler, the radiation oncologist. He explained that Rob will have radiation 5 days a week for 6 1/2 weeks for a total of 33 treatments. They made a mesh mask of his face and neck to ensure accurate placement during treatment every time. It will take about 2 weeks for the team to figure out Rob's exact treatment needs. His first treatment will be on October 20th and will last into the start of December. We are also still waiting to see the medical oncologist about chemo but as far as we know Rob will receive 3 treatments of chemo while he is having radiation. Hopefully we get an appointment to meet with the chemo team this week.
Rob is nearing the end of his E.I. payments and will switch to Long Term Disability (LTD) with the school division. This week we are meeting with the person that is in charge of Rob's case. Pray that everything goes smoothly and his payments start as soon as he is eligible. We have a few weeks before LTD starts and E.I. will already be done so we are praying that things transition quickly and we will not have to wait for payments.
Over the next 2 weeks Rob will be focusing on resting and recovering from surgery, keeping his weight and strength up and practicing swallowing and talking. It also gives us a chance to have some time as a family when I am not working. Today we were even able to attend church together!
Our journey is far from over but we have made another huge step towards recovery. We continue to pray each day for Rob to be completely healed and we know our God can do that. Thank you for caring and praying with us.
Love Karen
My last post I was praying that Rob would come home on Monday but apparently God wanted me to exercise some patience. I arrived on Monday first thing all set for a busy day and hoping for Rob to get discharged however that was not what the day looked like at all. Around 1:30pm Desmond (SLP) came by to assess Rob's swallowing again. He still felt that Rob needs to be on thickened fluids and a blenderized diet but he gave the ok to go home and practice swallowing until he feels comfortable with additional things. That was the good news of the day....the bad news was at 5:30pm after waiting all day we found out the doctor wasn't coming in that day. Since Rob's surgery was at a different hospital we were waiting on a different doctor to discharge him and we didn't know his schedule. I was beyond frustrated with the lack of communication and needed to vent so Rob encouraged me to spend sometime away from the hospital with a friend that evening. I did go back to see Rob and played a game in the atrium but I left a little earlier than normal and hung out with a friend for awhile. Rob is a smart guy and knew I needed some time to chat and it turned out to be a good thing for both of us. After some fresh chocolate chip cookies and a chat I had a much better perspective.
Tuesday morning came along and by 9:30am the doctor had come by and given the ok to go home. Rob messaged me and said he would be ready in a few hours and that Isaac and I could come and get him. He got the rest of the staples removed and the IV taken out. Once the discharge papers were in order he was free to go. The smile on Rob's face as we drove away was priceless! The feeling of having him come home is unreal and Isaac just kept saying how happy he was that Daddy could come home.
Now that he is home he is busy recovering from surgery to prepare for radiation and chemo. He is able to do some normal things and is much more able to do things than last time. He is happy to be sleeping at home again and has been having very good nights which we are very thankful for. The thing that takes up the most time (besides sleeping) is eating. Food needs to be pureed and for the most part drinks need to be thickened. You would be surprised at what you can puree when you don't have the option of eating it whole. For the most part Rob has been eating the same food as Isaac and I but it just needs prepared a little differently. Continue to pray that Rob is able to regain his ability to swallow and eventually chew. It is very important that he doesn't lose weight right now so he is as strong as possible for chemo and radiation.
On Thursday this past week we headed to cancer care to meet with Dr Butler, the radiation oncologist. He explained that Rob will have radiation 5 days a week for 6 1/2 weeks for a total of 33 treatments. They made a mesh mask of his face and neck to ensure accurate placement during treatment every time. It will take about 2 weeks for the team to figure out Rob's exact treatment needs. His first treatment will be on October 20th and will last into the start of December. We are also still waiting to see the medical oncologist about chemo but as far as we know Rob will receive 3 treatments of chemo while he is having radiation. Hopefully we get an appointment to meet with the chemo team this week.
Rob is nearing the end of his E.I. payments and will switch to Long Term Disability (LTD) with the school division. This week we are meeting with the person that is in charge of Rob's case. Pray that everything goes smoothly and his payments start as soon as he is eligible. We have a few weeks before LTD starts and E.I. will already be done so we are praying that things transition quickly and we will not have to wait for payments.
Over the next 2 weeks Rob will be focusing on resting and recovering from surgery, keeping his weight and strength up and practicing swallowing and talking. It also gives us a chance to have some time as a family when I am not working. Today we were even able to attend church together!
Our journey is far from over but we have made another huge step towards recovery. We continue to pray each day for Rob to be completely healed and we know our God can do that. Thank you for caring and praying with us.
Love Karen
Sunday 28 September 2014
Catch 22
There are many things with this hospital stay that are the same or similar to last time and there are many things that are different. Plus we forget about how things were when he was in hospital for 15 days last time. Today was day 10 this time and I am absolutely exhausted and want Rob home so badly. I will go back a few days and tell you about our week.
Since the surgery wasn't as complicated this time and we were not dealing with a tracheostomy and a skin graft (praise the Lord!) there were many days that almost nothing happened and we did lots of just waiting around. Maybe that is why this stay feels harder. On Wednesday morning the drain that was removing fluid around the lymph nodes was removed! This is the tube Isaac refers to as the rainbow tube and it doesn't hurt but is uncomfortable so Rob was very pleased to get it out. The doctors would come and check on him each day but for the most part they would say things are going well but be patient and then be on their way. We knew Friday would be a big day because Speech Language Pathology (SLP) was coming to assess Rob's swallowing. I made sure I was there as early as I could be on Friday but no one came all morning, or afternoon. Once 3pm hit I went to the nurses and said that they needed to get someone from SLP here because we were not waiting until Monday to start this process. About 10 minutes later Desmond showed up to do the swallowing assessment. I explained our experience with and NG tube and swallowing problems. We really felt we were going to have to do some convincing that we knew what we were talking about. From last time we knew that Rob cannot swallow with the NG tube in however normally they do not remove that tube until you can swallow....you see the problem here!! Desmond got Rob to try swallowing some thickened juice and as we knew would be the case he was not able to swallow it properly. He said he wanted to do a Fluoroscopy (like they did in May) so that he able to see how things are working on Monday and for the weekend we would leave the tube in and have nothing by mouth. He left the room and I burst into tears. I was frustrated that we weren't heard and needed things to keep moving forward. Rob was the strong one and told me that we had to keep trusting God and that He was watching out for us. No more then 10 minutes later Desmond comes back into the room and said he talked to Dr.Pathak and he said to pull the NG tube and let Rob swallow. And just like the NG tube was gone!!!! Praise the Lord. We could have both done a dance we were so excited. After the tube was removed Rob's swallowing was assessed again. He did much better but there is still fear he is aspirating some into his lungs. Basically over the weekend Rob was put on a thickened clear fluid diet. The only problem with that is the hospital does not have many options on this diet and having apple, orange or cranberry juice and tea or coffee is not enough calories for Rob so I asked if he could have Ensure. The last few days have been spent practicing swallowing and meals take quite awhile. Please pray that Rob is able to get back to where he was with swallowing and he no longer aspirates. It feels like we took about 10 steps backward but we know Rob can get back to where he was. On Monday he will see SLP again and hopefully they are pleased with his progress and give the ok to go home.
On Saturday morning half of the staples were removed. It is normal for them to do every other and wait a day to make sure nothing opens up. Tomorrow he should be able to get the rest out as it is looking really good.
Without having an NG tube it meant that Rob's IV could be closed off temporarily and he could leave without his IV pole. This weekend we were able to go for lots of walks and went across the street to the little park. We were even able to take Isaac to the playground and Rob pushed him on the swings!
So we go into a new week hoping that as soon as possible Rob can come home. At this point I think he would do better at home and any care he needs I can help him with. Pray that we are both patient, that Rob comes home on Monday, that the doctors listen and that Rob can gain strength in his swallowing.
We continue to place our hope in the only one who can give us hope. God continues to show us his love and encourage us. We still have times of discouragement but then God leaves a little encouragement for us to keep us going and trusting in Him.
Love Karen
Since the surgery wasn't as complicated this time and we were not dealing with a tracheostomy and a skin graft (praise the Lord!) there were many days that almost nothing happened and we did lots of just waiting around. Maybe that is why this stay feels harder. On Wednesday morning the drain that was removing fluid around the lymph nodes was removed! This is the tube Isaac refers to as the rainbow tube and it doesn't hurt but is uncomfortable so Rob was very pleased to get it out. The doctors would come and check on him each day but for the most part they would say things are going well but be patient and then be on their way. We knew Friday would be a big day because Speech Language Pathology (SLP) was coming to assess Rob's swallowing. I made sure I was there as early as I could be on Friday but no one came all morning, or afternoon. Once 3pm hit I went to the nurses and said that they needed to get someone from SLP here because we were not waiting until Monday to start this process. About 10 minutes later Desmond showed up to do the swallowing assessment. I explained our experience with and NG tube and swallowing problems. We really felt we were going to have to do some convincing that we knew what we were talking about. From last time we knew that Rob cannot swallow with the NG tube in however normally they do not remove that tube until you can swallow....you see the problem here!! Desmond got Rob to try swallowing some thickened juice and as we knew would be the case he was not able to swallow it properly. He said he wanted to do a Fluoroscopy (like they did in May) so that he able to see how things are working on Monday and for the weekend we would leave the tube in and have nothing by mouth. He left the room and I burst into tears. I was frustrated that we weren't heard and needed things to keep moving forward. Rob was the strong one and told me that we had to keep trusting God and that He was watching out for us. No more then 10 minutes later Desmond comes back into the room and said he talked to Dr.Pathak and he said to pull the NG tube and let Rob swallow. And just like the NG tube was gone!!!! Praise the Lord. We could have both done a dance we were so excited. After the tube was removed Rob's swallowing was assessed again. He did much better but there is still fear he is aspirating some into his lungs. Basically over the weekend Rob was put on a thickened clear fluid diet. The only problem with that is the hospital does not have many options on this diet and having apple, orange or cranberry juice and tea or coffee is not enough calories for Rob so I asked if he could have Ensure. The last few days have been spent practicing swallowing and meals take quite awhile. Please pray that Rob is able to get back to where he was with swallowing and he no longer aspirates. It feels like we took about 10 steps backward but we know Rob can get back to where he was. On Monday he will see SLP again and hopefully they are pleased with his progress and give the ok to go home.
On Saturday morning half of the staples were removed. It is normal for them to do every other and wait a day to make sure nothing opens up. Tomorrow he should be able to get the rest out as it is looking really good.
Without having an NG tube it meant that Rob's IV could be closed off temporarily and he could leave without his IV pole. This weekend we were able to go for lots of walks and went across the street to the little park. We were even able to take Isaac to the playground and Rob pushed him on the swings!
So we go into a new week hoping that as soon as possible Rob can come home. At this point I think he would do better at home and any care he needs I can help him with. Pray that we are both patient, that Rob comes home on Monday, that the doctors listen and that Rob can gain strength in his swallowing.
We continue to place our hope in the only one who can give us hope. God continues to show us his love and encourage us. We still have times of discouragement but then God leaves a little encouragement for us to keep us going and trusting in Him.
Love Karen
Tuesday 23 September 2014
4 nights down...
Tonight I am sitting on the couch by myself while Rob is in the hospital by himself and I would do anything to have him home. As I prayed with Isaac at bed time I was praying for Daddy and I started crying. Isaac looked at me and asked why I was crying and I told him it is because I miss Daddy. He said he missed him too and came to the end of the bed and hugged me. What a sweet sensitive boy! Even after spending the day with Rob not having my family all under the same roof feels wrong. Go give your family hugs and don't take for granted the great things you have!
So last update Rob was still asleep and I am happy to say he is awake now. On Saturday morning they started to take him off the drug they were using to keep him sedated. It didn't take long for him to wake up and he started asking the nurse questions right away (the first one was where is my wife?). I arrived shortly after and was greeted by his groggy smiling face. I was able to explain to him that it was a day later, why they kept him asleep and how the surgery went. At 9am the doctors were doing their rounds and the plan was to take out the breathing tube. So with about 10 people in the room watching they took the breathing tube out of Rob's nose and allowed him to breath. The concern was there would be too much swelling and his airway would close in but he had no problems at all. He didn't even need any extra oxygen because his O2 saturations were 100%. He was told that even though he was able to talk now that he should try not to talk much for about a week. Within a few hours of getting the tube out they started feeding him through the NG tube and mid afternoon he was moved up to a regular ward. Rob's short stay in ICU was as good as it could be. The nurses there are very good at what they do and they treated him so well even when he was sedated. We are very thankful that the ICU was willing to take care of Rob (his case is not typical care for ICU) because this allowed him to avoid a tracheostomy.
The last few days have been spent settling into the ward. Rob is in a double room but has the window side so we have enjoyed a few beautiful sunsets in the evening. His roommate is an older woman which I always find weird but she is lovely and so is her family so we are thankful for that. We were even able to go to the lounge at the end of the hall on Sunday night and have a "date night" watching the Amazing Race Canada finale....it's the little things like this that make the hospital stay tolerable!
The doctors have been in to see Rob each day and at this point he just needs to let things heal. They need to make sure everything is drained out and that there is no risk for infection. The goal is to get radiation started ASAP and an infection would hold this up so they are being very cautious. Rob has had a slight fever the last few days and they are just keeping a close eye on it. At this point speech language pathology will see him Friday and do a swallowing assessment. After his last surgery he had a hard time swallowing so we are praying this isn't an issue this time and that he can come home on a pureed diet without the NG tube. The suture in his mouth is looking good and there is no leakage so after a few more days like this he will be able to try things orally. We had hoped that maybe he would get to come home before the weekend but it is looking like early next week he will be home. We have 4 nights done so hopefully by this time next week we will all be under the same roof again. I have had a lot of people ask me how Rob's pain is and the answer is he doesn't have much. From the time they woke him up on Saturday he hasn't needed any pain meds aside from tylenol for a headache. He is uncomfortable because of the tubes and drain but is not in pain...Praise the Lord!!
Isaac has done very well this time so far. He asks every day to go to the hospital and see Rob. I asked him what he like about going to see daddy and he said playing angry birds (his favourite game) but also giving Daddy lots of hugs and kisses. We have managed to have a little visit with all of us everyday so far and we will continue to do this and enjoy a few minutes together.
Day by day God is walking with us and giving us the strenght we need....we cannot bare this alone so we are thankful He is with us.
Love Karen
So last update Rob was still asleep and I am happy to say he is awake now. On Saturday morning they started to take him off the drug they were using to keep him sedated. It didn't take long for him to wake up and he started asking the nurse questions right away (the first one was where is my wife?). I arrived shortly after and was greeted by his groggy smiling face. I was able to explain to him that it was a day later, why they kept him asleep and how the surgery went. At 9am the doctors were doing their rounds and the plan was to take out the breathing tube. So with about 10 people in the room watching they took the breathing tube out of Rob's nose and allowed him to breath. The concern was there would be too much swelling and his airway would close in but he had no problems at all. He didn't even need any extra oxygen because his O2 saturations were 100%. He was told that even though he was able to talk now that he should try not to talk much for about a week. Within a few hours of getting the tube out they started feeding him through the NG tube and mid afternoon he was moved up to a regular ward. Rob's short stay in ICU was as good as it could be. The nurses there are very good at what they do and they treated him so well even when he was sedated. We are very thankful that the ICU was willing to take care of Rob (his case is not typical care for ICU) because this allowed him to avoid a tracheostomy.
The last few days have been spent settling into the ward. Rob is in a double room but has the window side so we have enjoyed a few beautiful sunsets in the evening. His roommate is an older woman which I always find weird but she is lovely and so is her family so we are thankful for that. We were even able to go to the lounge at the end of the hall on Sunday night and have a "date night" watching the Amazing Race Canada finale....it's the little things like this that make the hospital stay tolerable!
The doctors have been in to see Rob each day and at this point he just needs to let things heal. They need to make sure everything is drained out and that there is no risk for infection. The goal is to get radiation started ASAP and an infection would hold this up so they are being very cautious. Rob has had a slight fever the last few days and they are just keeping a close eye on it. At this point speech language pathology will see him Friday and do a swallowing assessment. After his last surgery he had a hard time swallowing so we are praying this isn't an issue this time and that he can come home on a pureed diet without the NG tube. The suture in his mouth is looking good and there is no leakage so after a few more days like this he will be able to try things orally. We had hoped that maybe he would get to come home before the weekend but it is looking like early next week he will be home. We have 4 nights done so hopefully by this time next week we will all be under the same roof again. I have had a lot of people ask me how Rob's pain is and the answer is he doesn't have much. From the time they woke him up on Saturday he hasn't needed any pain meds aside from tylenol for a headache. He is uncomfortable because of the tubes and drain but is not in pain...Praise the Lord!!
Isaac has done very well this time so far. He asks every day to go to the hospital and see Rob. I asked him what he like about going to see daddy and he said playing angry birds (his favourite game) but also giving Daddy lots of hugs and kisses. We have managed to have a little visit with all of us everyday so far and we will continue to do this and enjoy a few minutes together.
Day by day God is walking with us and giving us the strenght we need....we cannot bare this alone so we are thankful He is with us.
Love Karen
Friday 19 September 2014
Another surgery day complete!
Something you don't often hear about is surgery being early but that actually happened today. We arrived at the hospital at 9:45am for his surgery to start at 11:45am but we got all the paper work done quickly and they were ready early. After getting all prepped and talking to the doctors I said goodbye to Rob about 10:45am and off he went. Since there were so many unknowns with this surgery we had no idea how long it would be but I was told anywhere from 2-4 hours. After I said good bye I wandered downstairs to meet my friend Catherine. She greeted me with yummy Starbucks and we sat downstairs and chatted. After having some lunch we headed back upstairs just before 1pm. I had been told a nurse might come out and give my an update around then so I didn't want to miss it. About 1:30pm Dr Nason came out and told me they were done and gave me an update.
Overall the surgery went as planned and went as well as it could. Some people were praying that the surgery would go so well that even the surgeons were surprised and I feel like that was the case! They removed 3 lymph nodes that they knew were cancerous. They also checked another area at the base of the tongue that showed up on the MRI but when pathology looked at it they confirmed it was not tumour related but likely just part of the granulation we have been seeing in the mouth. The largest tumor was slightly into the muscle at the base of the tongue so when they removed it they had to go in the mouth to re-stitch the flap. For about a week Rob will have to eat by tube feed again because they need to make sure the flap heals up properly so no food gets through the stitches and cause an infection. They did not have to do a skin graft which is a huge answer to prayer!!
As you know one of the things that we really wanted to avoid was another tracheostomy and if you have even had one you will understand why. Knowing this the doctors decided to do things a little different. The decided to keep him breathing through a tube that is down his nose into his airway. The only thing about this is he cannot pull it out and therefore has to be kept sedated. Basically it just looks like he is sleeping and they are keeping him very comfortable. This also means that he is spending the night in the ICU. The doctors reassured me that he is not in the ICU because he is really sick but because he needs the one to one care to make sure he is kept asleep. Even though he was asleep and didn't even know I was there I still wanted to stay with him. I played his music on the ipod so he could hear it and talk to him lots and held his hand.
The plan in the morning is to wake him up slowly and I am hoping to be there for that. Once he is awake they will deflate the little balloon in his throat to see if he can breath and make sure the swelling doesn't close in on his airway. If he breaths fine they will take out the tube. If he has a problem then they will have to assess the next step. The doctors seem optimistic that this will work. Please pray this is the case and that while he rests tonight the swelling goes down and that there will be no need for a trach.
Many of you have asked about Isaac and he is doing well. We have told him what is going on with daddy and he seems to be dealing as well as a toddler can. He spent the day with Grandma and Grandpa and still went to preschool in the afternoon. Hopefully if all goes well he will get to come and see daddy tomorrow which I know will be good for both of them.
Overall Rob looked very good when I left him sleeping peacefully. We still have many hurdles to get over but another one is done and we are thankful it went well. We are still unsure how long he will be in hospital this time but likely at least a week. Tomorrow will be a big day and will give us a better picture of how things will look over the next couple of weeks. I look forward to seeing Rob tomorrow and telling him he slept all of Friday away and that it is Saturday now!!
Thank you for all of the prayers today and please keep praying for a speedy recovery so we can get radiation and chemo started and beat this cancer!
Thank you Jesus for getting us through today.
Love Karen
Overall the surgery went as planned and went as well as it could. Some people were praying that the surgery would go so well that even the surgeons were surprised and I feel like that was the case! They removed 3 lymph nodes that they knew were cancerous. They also checked another area at the base of the tongue that showed up on the MRI but when pathology looked at it they confirmed it was not tumour related but likely just part of the granulation we have been seeing in the mouth. The largest tumor was slightly into the muscle at the base of the tongue so when they removed it they had to go in the mouth to re-stitch the flap. For about a week Rob will have to eat by tube feed again because they need to make sure the flap heals up properly so no food gets through the stitches and cause an infection. They did not have to do a skin graft which is a huge answer to prayer!!
As you know one of the things that we really wanted to avoid was another tracheostomy and if you have even had one you will understand why. Knowing this the doctors decided to do things a little different. The decided to keep him breathing through a tube that is down his nose into his airway. The only thing about this is he cannot pull it out and therefore has to be kept sedated. Basically it just looks like he is sleeping and they are keeping him very comfortable. This also means that he is spending the night in the ICU. The doctors reassured me that he is not in the ICU because he is really sick but because he needs the one to one care to make sure he is kept asleep. Even though he was asleep and didn't even know I was there I still wanted to stay with him. I played his music on the ipod so he could hear it and talk to him lots and held his hand.
The plan in the morning is to wake him up slowly and I am hoping to be there for that. Once he is awake they will deflate the little balloon in his throat to see if he can breath and make sure the swelling doesn't close in on his airway. If he breaths fine they will take out the tube. If he has a problem then they will have to assess the next step. The doctors seem optimistic that this will work. Please pray this is the case and that while he rests tonight the swelling goes down and that there will be no need for a trach.
Many of you have asked about Isaac and he is doing well. We have told him what is going on with daddy and he seems to be dealing as well as a toddler can. He spent the day with Grandma and Grandpa and still went to preschool in the afternoon. Hopefully if all goes well he will get to come and see daddy tomorrow which I know will be good for both of them.
Overall Rob looked very good when I left him sleeping peacefully. We still have many hurdles to get over but another one is done and we are thankful it went well. We are still unsure how long he will be in hospital this time but likely at least a week. Tomorrow will be a big day and will give us a better picture of how things will look over the next couple of weeks. I look forward to seeing Rob tomorrow and telling him he slept all of Friday away and that it is Saturday now!!
Thank you for all of the prayers today and please keep praying for a speedy recovery so we can get radiation and chemo started and beat this cancer!
Thank you Jesus for getting us through today.
Love Karen
Thursday 18 September 2014
Tomorrow is surgery day.
This has been a very emotional week for us. As much as the surgery was booked very quickly and is happening fast it feels like a long week. The anticipation and all the unknowns cause our heads to spin. We know that God is incharge and that we have an army praying for us but as humans we let fear slip in sometimes.
This week was also a tough week because I have been sick. It is hard for me to complain about a silly cold when Rob is dealing with so much more but it really hit me hard. Isaac just started preschool and of course came home with a cold within the first week. I wasn't able to work much this week as they don't want me coughing all over the residents plus I didn't have much energy. Our biggest fear with the cold is that Rob would catch it. We are doing tons of hand washing and staying away from Rob. Rob is also sporting a very lovely mask when he is playing with Isaac. It looks funny but if it does the trick who cares! I am starting to feel better and was finally able to get out of the house today. Pray Rob continues to be healthy and that he doesn't catch this cold.
Last night we had our pastors and council members come over to pray over Rob and anoint him with oil. This is something the bible teaches us about in James 5:14 and it was a very powerful time. We know many of you were praying with us during that time from your homes and we felt God's presence. We know that God can heal Rob but that does not mean it will happen without suffering. So we journey on trusting our big God will heal Rob and gives us the strength and peace to get through the months ahead.
Tomorrow is surgery day and we were told on Monday that the time has been changed. It will now be at 11:45am and they are estimating 4 hours long although many things could change that. We are praying that they are able to remove the lymph nodes with no complications, that the tongue does not swell up and there is no need for a tracheostomy, that the blood supply to the flap is not affected and no damage is done to the flap. Doing a second surgery in the same area means they are dealing with scar tissue and it makes it hard to know what they are up against until they are in there. We are praying for the best possible outcome and that Rob will not have to stay in the hospital too long. At this time we were told 10 days but it could be a few less or a few more. If you have time tomorrow we asked that you would pray whenever you can so the whole day is covered in prayers.
I have saved the best news for last this time. This morning Rob had his MRI and his chest CT to check and see if any cancer had spread to his lungs and chest. If this was the case then his treatment would have changed drastically. Around 1pm Pam, our nurse, called and said his chest was all clear. I could barely believe what I heard! Praise the Lord!!! We still have a tough road to beat this but knowing that it has not spread is amazing. After being told bad news a few weeks ago it felt so incredible to hear good news and to know that God is hearing and answering our prayers.
Thank you for caring for our family.
Love Karen
This week was also a tough week because I have been sick. It is hard for me to complain about a silly cold when Rob is dealing with so much more but it really hit me hard. Isaac just started preschool and of course came home with a cold within the first week. I wasn't able to work much this week as they don't want me coughing all over the residents plus I didn't have much energy. Our biggest fear with the cold is that Rob would catch it. We are doing tons of hand washing and staying away from Rob. Rob is also sporting a very lovely mask when he is playing with Isaac. It looks funny but if it does the trick who cares! I am starting to feel better and was finally able to get out of the house today. Pray Rob continues to be healthy and that he doesn't catch this cold.
Last night we had our pastors and council members come over to pray over Rob and anoint him with oil. This is something the bible teaches us about in James 5:14 and it was a very powerful time. We know many of you were praying with us during that time from your homes and we felt God's presence. We know that God can heal Rob but that does not mean it will happen without suffering. So we journey on trusting our big God will heal Rob and gives us the strength and peace to get through the months ahead.
Tomorrow is surgery day and we were told on Monday that the time has been changed. It will now be at 11:45am and they are estimating 4 hours long although many things could change that. We are praying that they are able to remove the lymph nodes with no complications, that the tongue does not swell up and there is no need for a tracheostomy, that the blood supply to the flap is not affected and no damage is done to the flap. Doing a second surgery in the same area means they are dealing with scar tissue and it makes it hard to know what they are up against until they are in there. We are praying for the best possible outcome and that Rob will not have to stay in the hospital too long. At this time we were told 10 days but it could be a few less or a few more. If you have time tomorrow we asked that you would pray whenever you can so the whole day is covered in prayers.
I have saved the best news for last this time. This morning Rob had his MRI and his chest CT to check and see if any cancer had spread to his lungs and chest. If this was the case then his treatment would have changed drastically. Around 1pm Pam, our nurse, called and said his chest was all clear. I could barely believe what I heard! Praise the Lord!!! We still have a tough road to beat this but knowing that it has not spread is amazing. After being told bad news a few weeks ago it felt so incredible to hear good news and to know that God is hearing and answering our prayers.
Thank you for caring for our family.
Love Karen
Friday 12 September 2014
Time for more surgery
Yesterday was a long day and we were told a lot of information. In the morning before we arrived the team of professionals that work with head and neck cancer patients met to discuss the cases. This gives them a chance to see the big picture and to make a treatment plan together. We met with Dr.Nason after the conference was done and he gave us all the details. The lump on Rob's chin is actually cancerous lymph nodes and there are possibly more than just one. He explained that we all have 150-300 lymph nodes in our necks. During Rob's initial surgery they took out about 30 to test. They decide which ones to take based on previous experience with other patients and anatomically how it would naturally spread. The 30 lymph nodes they tested of Rob's were all clear and showed no abnormalities. In most cases there is a 10% chance that after having the lymph nodes testing clear that you will have one with cancer later....unfortunately Rob is in that 10%. It isn't that they missed the lymph nodes before, it is just that it would have been so microscopic that they didn't see it. Having the cancer in the lymph nodes is better surgically speaking however the lymphatic system goes through the whole body and is a way that cancer can easily spread. The team decided that right now surgery is the best option. Dr.Nason and Dr.Pathak will perform the surgery to remove the lymph nodes that are showing abnormalities. We need a lot of prayer for the surgery because a second surgery in the same area is not as predictable and there is the chance for many complications. Best case is they remove the lymph nodes with no problems and stitch him back together. However, there could be problems with interrupting the blood supply to the flap (the new tongue), causing the flap to have to be re done, not being able to remove the lymph nodes, complications if it is too close to the jaw and even if they have to remove skin from his chin that he would need another skin graft. The surgery will be happening next Friday September 19th and we ask that you would cover it with prayer. Rob has gone through so much already and it would be a huge answer to our prayers if the surgery wasn't full of complications.
Before the surgery they will be doing another MRI to get a better picture of the tissue for the surgery. We are basically on call 24/7 right now and they will call when they have a cancellation or no show and we will have very little time to get there. They are also going to do a CT scan of the chest to make sure nothing has spread. The lymph nodes would spread to the lungs and chest first so they want to check before surgery.
To be sure nothing is missed again this time Rob will also be having radiation and chemo. This will begin about 4 weeks after surgery and last for just less then 2 months. We have been told some details and side effects with that but we are focusing on surgery right now and will look more into that when the time comes.
Rob will be off work for approximately another 6-9 months recovering. Every person responds differently so exact timing is hard to say but we know that he will be extremely tired and he will need time to get back on his feet.
Yesterday afternoon after we left cancer care we just needed to do something fun and forget about everything. Sometimes all we are dealing with feels much too heavy to bare and it is easier to forget about. Isaac was well cared for with Grandma and Grandpa so we were able to spend the afternoon together. We had a nice lunch out and then did some shopping and errands. Around dinner time we headed to get Isaac and had supper with Rob's parents. It was really nice to have a nice home cooked meal and to not have to think about preparing it myself.
As we left Rob's parents place there were some dark clouds in the sky and even some rain but also the sun was shining. For those who know me you know that the thing in nature that I love the most that God created is a rainbow. As we came around the corner we saw the biggest most beautiful rainbow. We could see the entire thing end to end and it was amazing!! It felt like God put it there just for us to remind us that he will never forget about us and that he cares for his children. In Genesis God sends a rainbow as a reminder of the promise that he will never completely destroy us. In that moment, and after the tough days, weeks, months that we have had it was a reminder that God is good and he hears our prayers. Even thinking about that rainbow makes me smile and I am so thankful it.
Here are the things we need specific prayers for...
-Surgery on Friday- that they remove the lymph nodes they need to with no problems, that there would be no further complications and that Rob would heal quickly
-That Rob would get a scheduled MRI appointment before surgery
-CT of chest is totally clear and shows no signs of spreading
-For our family to have some good time together this week while Rob is still feeling good
-For peace and strength....we need a lot of it!
Thank you for all the prayers.
Love Karen
Before the surgery they will be doing another MRI to get a better picture of the tissue for the surgery. We are basically on call 24/7 right now and they will call when they have a cancellation or no show and we will have very little time to get there. They are also going to do a CT scan of the chest to make sure nothing has spread. The lymph nodes would spread to the lungs and chest first so they want to check before surgery.
To be sure nothing is missed again this time Rob will also be having radiation and chemo. This will begin about 4 weeks after surgery and last for just less then 2 months. We have been told some details and side effects with that but we are focusing on surgery right now and will look more into that when the time comes.
Rob will be off work for approximately another 6-9 months recovering. Every person responds differently so exact timing is hard to say but we know that he will be extremely tired and he will need time to get back on his feet.
Yesterday afternoon after we left cancer care we just needed to do something fun and forget about everything. Sometimes all we are dealing with feels much too heavy to bare and it is easier to forget about. Isaac was well cared for with Grandma and Grandpa so we were able to spend the afternoon together. We had a nice lunch out and then did some shopping and errands. Around dinner time we headed to get Isaac and had supper with Rob's parents. It was really nice to have a nice home cooked meal and to not have to think about preparing it myself.
As we left Rob's parents place there were some dark clouds in the sky and even some rain but also the sun was shining. For those who know me you know that the thing in nature that I love the most that God created is a rainbow. As we came around the corner we saw the biggest most beautiful rainbow. We could see the entire thing end to end and it was amazing!! It felt like God put it there just for us to remind us that he will never forget about us and that he cares for his children. In Genesis God sends a rainbow as a reminder of the promise that he will never completely destroy us. In that moment, and after the tough days, weeks, months that we have had it was a reminder that God is good and he hears our prayers. Even thinking about that rainbow makes me smile and I am so thankful it.
Here are the things we need specific prayers for...
-Surgery on Friday- that they remove the lymph nodes they need to with no problems, that there would be no further complications and that Rob would heal quickly
-That Rob would get a scheduled MRI appointment before surgery
-CT of chest is totally clear and shows no signs of spreading
-For our family to have some good time together this week while Rob is still feeling good
-For peace and strength....we need a lot of it!
Thank you for all the prayers.
Love Karen
Thursday 4 September 2014
Not good news.
When I woke up yesterday I had no idea what was in store for our day and it is a day I wish I could rewind and make different. Before 8:30am we got a call from Pam, Dr Nason's nurse, she said that Dr Nason needed to see Rob that morning and we should come as soon as we could. So we had been planning for Rob to start work with the students that day but instead we headed straight to Cancar Care. We were brought right through to a room and waited for a few minutes. Dr Nason came in shortly after and told us what we had feared and didn't want to hear. He had received the results from the needle biopsy the evening before and he didn't like what it said. Basically the cells were atypical, meaning they were abnormal. Dr Nason looked more into the report and feels that the type of cells he saw are tumour cells. He also looked again at Rob's pathology from the surgery and the whole tumour had been removed and all the lymph nodes were clear, so it appears this is another tumour. He said he doesn't like what he sees and something needs to be done immediately. At this point he is thinking that the team will agree that radiation alongside oral chemotherapy will be the way to go. Surgery is not out of the question but it is not a first choice based on where it is located. Today Rob had a CT scan done which will give the team a better picture of the size and location. Next Thursday his case will be discussed at the Head and Neck Consult and we will meet with Dr Nason afterwards to talk about what the team thinks is the best option. Dr Nason is 90% sure that they will agree on radiation and chemo but we will know more next week.
As you can imagine we are shocked and scared. It felt like we were just going to be getting back to "normal" and now it feels like we are starting all over again. Rob is now not going to be able to go back to work. Within a few weeks of treatment he will be too exhausted to work and will likely be off for at least 3 more months.
Please pray for Rob and I as well as Isaac as we process the news and deal with more unknowns. Pray the CT Scan shows that the cells are not cancerous. We know God can heal Rob and that he can even change what the tests results showed so pray with us in Jesus name that there is no more cancer in Rob's body. Pray for complete healing for Rob. Pray for peace for all of us and that God would be real to us.
Love Karen
As you can imagine we are shocked and scared. It felt like we were just going to be getting back to "normal" and now it feels like we are starting all over again. Rob is now not going to be able to go back to work. Within a few weeks of treatment he will be too exhausted to work and will likely be off for at least 3 more months.
Please pray for Rob and I as well as Isaac as we process the news and deal with more unknowns. Pray the CT Scan shows that the cells are not cancerous. We know God can heal Rob and that he can even change what the tests results showed so pray with us in Jesus name that there is no more cancer in Rob's body. Pray for complete healing for Rob. Pray for peace for all of us and that God would be real to us.
Love Karen
Tuesday 26 August 2014
An unplanned detour
Most people don't like the unknowns or the what ifs of life and they can cause lots of anxiety and worry. I would have said that I do my fair share of worrying before all we have gone through. After being told the results are basically the worst they could be you start to fear that news will continue to be bad. I have quickly realized that we cannot live like this, however that is easier said then done. Any time I start thinking of the worst I pray that I would feel God's peace. In Philippians 4:6&7 it says, " Don't worry about anything; instead pray about everything. Tell God what you need, and thank Him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Jesus Christ." This does not mean that I don't struggle with these thoughts sometimes, but deep in my heart I know that God is taking care of us. He has placed some amazing family and friends to take this journey with us. He has used many of you to encourage us and remind us that we are not in this alone and He continues to walk along side us and take care of us. In Proverbs it says to "Trust in the Lord with all your heart and do not depend on your own understanding." As we walk each day we trust, when fear sneaks into our thoughts we trust, and with our lives we trust and know that God has the perfect plan for us....right now we are just on a detour that we didn't plan!
It has been a few weeks since my last update and part of the reason is because Rob had a few weeks with no appointments. During this time we were able to visit my family and friends and have a little break from this regular routine. We continue to be encouraged when people who haven't seen Rob since his surgery are so impressed with how good he looks and how far he has come in 4 months.
Last week Rob met with his physiotherapist and after some assessments to see his progress she has discharged him. He still has some exercises to do each day but she felt he has done very well and doesn't need to be checked again. At this point he needs to continue what he has been doing to prevent his posture from deteriorating.
Yesterday was another follow up with Dr Nason. We have found if you bring a concern up he deals with it right away and this was the case yesterday. Over the last week or so Rob has noticed the swelling under his chin has become a bit hard. Dr Nason had a look and then I asked about the biopsy results from the granulation he removed in July. At first he thought they didn't have the results but then checked Rob's file and they were there. It was all clear but it said that it had foreign material, meaning it is likely something like a suture from the surgery. Due to the complexity of the surgery Rob had done there is always a chance that a suture gets stuck and doesn't dissolve. He checked his mouth again and noticed that the granulation had grown back a little bit although it is not painful. Based on the hardness in the neck and the granulation inside the mouth Dr Nason feels they are related and could be from the surgery. He didn't actually say the word infection but that is the easiest way to explain it. He again doesn't feel it is tumor related and double checked the pathology from the sugery to confirm the whole tumor was removed. He decided we would be overly cautious to ease everyones worries though. Rob has a CT scan booked for September 12th which will give him a good picture of what is going on, he put him on 2 weeks of antibiotics, and lastly he did a needle biopsy. Basically he put a small needle in the lump and moved it around a little to get some cells. Rob still has numbness on his neck and this proved to be a good thing yesterday because he didn't feel a thing. The cells were put on a slide by a cytologist to be looked at under a microscope. We should have those results in about a week. By doing all 3 of these things it will cover all the bases. Please pray that the antibiotics work and that it is no more then a small infection.
We also met with the Speech Language Pathologist Candace and she felt that Rob's speech was very good. (Even Dr Nason made a comment about how well Rob is talking!). There are obviously a few letters that are hard to say but as the swelling continues to go down and when he gets teeth that will change again. One thing we have noticed is how hard "Rob Scott" is to say when you don't have a whole tongue. Through talking everyday Rob will continue to practice the tough letters and words. One concern we shared was going back to work next week and talking to teenage guys. Rob was encouraged to just be honest right from the start and let the guys know what happened. Candace said he might be surprised by the guys reaction.
Next week we start a new routine with Rob going back to work and Isaac starting nursery school. We have decided that Rob will wait a few weeks before starting work at the church again. We figured going from 0 hours to 55 hours it might be a little much so by staggering when he starts it will give him time to get back into it. A lot of people have asked if Rob is ready to go back to work and the answer is we don't know. When you are off on sick leave, as you start to recover you feel good but you aren't working 8 hour days. I am sure that Rob will be very tired but we are praying his body is ready to go back.
This weekend we are celebrating Isaac's 4th birthday! We have some fun surprises planned for him and pray that this year is a great year for him. He has done incredibly well in the last 5 months dealing with his Daddy being sick. Even as I sit here and type this the boys are play wrestling...this is something that Rob hasn't been able to do for months but they are laughing and having a blast with eachother and I am so thankful for that.
I continue to feel humbled and amazed that people care enough for our family and want to hear updates. My goal is to do an update on here about every 2 weeks. Sometimes there will be more to report than others but I will do an update regardless. Thank you for showing God's love to us and for caring and praying for us.
Love Karen
It has been a few weeks since my last update and part of the reason is because Rob had a few weeks with no appointments. During this time we were able to visit my family and friends and have a little break from this regular routine. We continue to be encouraged when people who haven't seen Rob since his surgery are so impressed with how good he looks and how far he has come in 4 months.
Last week Rob met with his physiotherapist and after some assessments to see his progress she has discharged him. He still has some exercises to do each day but she felt he has done very well and doesn't need to be checked again. At this point he needs to continue what he has been doing to prevent his posture from deteriorating.
Yesterday was another follow up with Dr Nason. We have found if you bring a concern up he deals with it right away and this was the case yesterday. Over the last week or so Rob has noticed the swelling under his chin has become a bit hard. Dr Nason had a look and then I asked about the biopsy results from the granulation he removed in July. At first he thought they didn't have the results but then checked Rob's file and they were there. It was all clear but it said that it had foreign material, meaning it is likely something like a suture from the surgery. Due to the complexity of the surgery Rob had done there is always a chance that a suture gets stuck and doesn't dissolve. He checked his mouth again and noticed that the granulation had grown back a little bit although it is not painful. Based on the hardness in the neck and the granulation inside the mouth Dr Nason feels they are related and could be from the surgery. He didn't actually say the word infection but that is the easiest way to explain it. He again doesn't feel it is tumor related and double checked the pathology from the sugery to confirm the whole tumor was removed. He decided we would be overly cautious to ease everyones worries though. Rob has a CT scan booked for September 12th which will give him a good picture of what is going on, he put him on 2 weeks of antibiotics, and lastly he did a needle biopsy. Basically he put a small needle in the lump and moved it around a little to get some cells. Rob still has numbness on his neck and this proved to be a good thing yesterday because he didn't feel a thing. The cells were put on a slide by a cytologist to be looked at under a microscope. We should have those results in about a week. By doing all 3 of these things it will cover all the bases. Please pray that the antibiotics work and that it is no more then a small infection.
We also met with the Speech Language Pathologist Candace and she felt that Rob's speech was very good. (Even Dr Nason made a comment about how well Rob is talking!). There are obviously a few letters that are hard to say but as the swelling continues to go down and when he gets teeth that will change again. One thing we have noticed is how hard "Rob Scott" is to say when you don't have a whole tongue. Through talking everyday Rob will continue to practice the tough letters and words. One concern we shared was going back to work next week and talking to teenage guys. Rob was encouraged to just be honest right from the start and let the guys know what happened. Candace said he might be surprised by the guys reaction.
Next week we start a new routine with Rob going back to work and Isaac starting nursery school. We have decided that Rob will wait a few weeks before starting work at the church again. We figured going from 0 hours to 55 hours it might be a little much so by staggering when he starts it will give him time to get back into it. A lot of people have asked if Rob is ready to go back to work and the answer is we don't know. When you are off on sick leave, as you start to recover you feel good but you aren't working 8 hour days. I am sure that Rob will be very tired but we are praying his body is ready to go back.
This weekend we are celebrating Isaac's 4th birthday! We have some fun surprises planned for him and pray that this year is a great year for him. He has done incredibly well in the last 5 months dealing with his Daddy being sick. Even as I sit here and type this the boys are play wrestling...this is something that Rob hasn't been able to do for months but they are laughing and having a blast with eachother and I am so thankful for that.
I continue to feel humbled and amazed that people care enough for our family and want to hear updates. My goal is to do an update on here about every 2 weeks. Sometimes there will be more to report than others but I will do an update regardless. Thank you for showing God's love to us and for caring and praying for us.
Love Karen
Saturday 2 August 2014
Everyone is different.
Since the very beginning of this journey we were told that there are parts of the surgery and recovery that the doctors don't know exactly how it will go because each person is different. The doctors can't always say how long something will take to heal or what it will look like in the end. After our last visit to Dr.Nason we assumed the granulation (the sore spot in Rob's mouth) would not be a problem again since it went away on its own, however we were wrong. At first it seemed like as long as Rob watched what he ate it was fine, but then last weekend the spot flared up. If the spot was in my mouth we wouldn't worry at all but after all Rob has gone through we are not taking any chances. I called the nurse on Sunday evening so that she would get the message first thing on Monday asking if Dr.Nason could squeeze Rob in. She called us back by 8:30am on Monday morning and said he could be seen after lunch. I had to work all day that day so this is the first appointment at Cancer Care that I had to miss. It isn't that I needed to be there, it is just nice to go together so I can be whatever support Rob needs plus I am the one who asks all the questions! Dr.Nason had a look in Rob's mouth and decided that the spot needed to be removed. They froze him and decided to cut off the sore and then they used silver nitrate to burn it off. Dr.Nason also decided to send the piece away to be biopsied. He is not concerned that there is something wrong but there is no harm in double checking. Please pray this comes back all clear and he doesn't have further problems. The granulation is something that is common but how it shows up and grows is different in everyone. Rob had a bit of a sore mouth for a day or 2 but it is feeling much better now and the spot is healing nicely.
This week Rob was finally able to get through to Service Canada and speak to someone about his sick leave. He was transferred to a specialist there and within 10 minutes everything was sorted out. Thank you for praying that this worked out. We are very thankful that Rob could go on EI over the summer to help us out financially.
We are also thankful this summer to have a chance to spend time with and visit some of the people who have prayed for us and who have not seen Rob since his surgery. It is so encouraging to hear people say they can't believe how well Rob looks. If we look back at pictures from the start of May it is obvious that Rob has come a long way but sometimes day to day we don't notice as much of a difference. We wish we could see all our family, friends and prayer warriors but there is no way to see you all. We look forward to the visits we do get and are thankful for our extra time as a family right now. Rob is still planning on going back to work when school starts after Labour Day. One of the difficulties about going back to work is going to be arranging appointments around his work schedule. Rob already has a few specialists appointments in the fall that cannot be change. We know it will all work out and the appointments are all very important but it makes it thankful for having this time off.
We are so thankful for our all the encouragement, prayers, and support we have recieved. Continue to pray for Rob's healing and for us as we transition into a new schedule.
Love Karen
This week Rob was finally able to get through to Service Canada and speak to someone about his sick leave. He was transferred to a specialist there and within 10 minutes everything was sorted out. Thank you for praying that this worked out. We are very thankful that Rob could go on EI over the summer to help us out financially.
We are also thankful this summer to have a chance to spend time with and visit some of the people who have prayed for us and who have not seen Rob since his surgery. It is so encouraging to hear people say they can't believe how well Rob looks. If we look back at pictures from the start of May it is obvious that Rob has come a long way but sometimes day to day we don't notice as much of a difference. We wish we could see all our family, friends and prayer warriors but there is no way to see you all. We look forward to the visits we do get and are thankful for our extra time as a family right now. Rob is still planning on going back to work when school starts after Labour Day. One of the difficulties about going back to work is going to be arranging appointments around his work schedule. Rob already has a few specialists appointments in the fall that cannot be change. We know it will all work out and the appointments are all very important but it makes it thankful for having this time off.
We are so thankful for our all the encouragement, prayers, and support we have recieved. Continue to pray for Rob's healing and for us as we transition into a new schedule.
Love Karen
Thursday 17 July 2014
Good bye granulation!!
Some weeks it seems like the whole week is arranging around appointments. Other weeks there is almost nothing happening. This week was one of the busy ones and I am glad it is over. It is tiring arranging it all sometimes but we are glad to have good results this week.
In my last blog I told you about some extra tissue that was in Rob's mouth called granulation. I had asked specifically for you to pray that it would go away on it's own and that they would not have to burn it off. Praise the Lord it went away on it's own! Dr Nason still wanted to have a look at it so we went in on Wednesday morning for the appointment. He looked at the area for a moment and said it looked good and he wouldn't need to do the procedure!!! Dr Nason is pleased with how Rob is doing and once again reminded us that it is a long process. There is a good chance that his mouth will look quite different for almost a year. There is still a lot of swelling from the flap that needs to go down but that often takes over 6 months. We also asked about teeth and found out that possibly after the next appointment Rob will be referred to a dentist that works with cancer care. The whole dental part of this is a little unknown for now but we are praying that it all works out and that it is covered under Manitoba Health. Rob is managing quite well without many teeth on the bottom but likely getting new teeth will help his speech as well as eating. Rob will see Dr Nason again at the end of August.
Rob has been spending a lot of time working on his physio exercises. On July 9th he saw his hand physiotherapist Greig and he was so pleased that he basically discharged him. He said that a lot of Rob's strength and muscle mass will come back as he gets back into his regular routine. Greig said Rob can stop by anytime to see him but he will not have to go back regularly. One more item to check off the list!! He has also been seeing Samanthi, who is helping with his neck and shoulders. She has given him tons of exercises to do at home and she is pleased with his progress. Only a few more visits and he will be done with her as well.
On July 9th we also saw Dr. Hayakawa, who was once again very pleased with how well Rob is doing. In fact he said Rob is doing so well that he doesn't need to see him for 3 months. One thing that we were able to talk about with him was the hair in Rob's mouth. When they took the skin from his arm to put in his mouth they also took the hair follicles. Rob will now not have hair on his arm but instead will have it in his mouth. As you can imagine this is not the nicest feeling. Dr Hayakawa is going to refer Rob to get laser hair removal done and will also write a letter to have it covered. We are not sure when all of this will happen but it is good to know they are going to help him out.
Rob's speech is remarkably good when you consider what he has gone through. He had an assessment done with the Speech Language Pathologist Candace, who identified what letters are the biggest problem. There was no surprises for us but she gave him words to practice...and by practice I mean repeat them over and over again until he can say them correctly. Think about all the words you say that the tip of your tongue touches the roof of your mouth and those are the tough ones for Rob.
Just a few other prayers and praises to update you about.
-Pray that they make a decision soon about EI and that we get a fair payment. They seem to be very busy and have not even processed Rob's application.
-Praise God that my wisdom tooth came out in one piece and everything went well. I didn't have a lot of pain and it is healing up nicely.
-Praise God for time away as a family and that we were able to spend some time in the Whiteshell relaxing and spending time together after a tough few months. We are thankful for generous friends who shared their lovely cabin.
Next week Rob and I celebrate our 8th wedding anniversary. In some ways 8 years have flown by but in other ways it is hard to think about life before I met Rob. I have always told him that I want to grow old together and be that elderly couple still holding hands. I am thankful to God for such an amazing man and that we can celebrate 8 years together. I look forward to many more together serving God and am so thankful we can share the ups and downs of life.
Thank you once again for all the love and prayers. We have felt each one and know that God is listening.
Love Karen
In my last blog I told you about some extra tissue that was in Rob's mouth called granulation. I had asked specifically for you to pray that it would go away on it's own and that they would not have to burn it off. Praise the Lord it went away on it's own! Dr Nason still wanted to have a look at it so we went in on Wednesday morning for the appointment. He looked at the area for a moment and said it looked good and he wouldn't need to do the procedure!!! Dr Nason is pleased with how Rob is doing and once again reminded us that it is a long process. There is a good chance that his mouth will look quite different for almost a year. There is still a lot of swelling from the flap that needs to go down but that often takes over 6 months. We also asked about teeth and found out that possibly after the next appointment Rob will be referred to a dentist that works with cancer care. The whole dental part of this is a little unknown for now but we are praying that it all works out and that it is covered under Manitoba Health. Rob is managing quite well without many teeth on the bottom but likely getting new teeth will help his speech as well as eating. Rob will see Dr Nason again at the end of August.
Rob has been spending a lot of time working on his physio exercises. On July 9th he saw his hand physiotherapist Greig and he was so pleased that he basically discharged him. He said that a lot of Rob's strength and muscle mass will come back as he gets back into his regular routine. Greig said Rob can stop by anytime to see him but he will not have to go back regularly. One more item to check off the list!! He has also been seeing Samanthi, who is helping with his neck and shoulders. She has given him tons of exercises to do at home and she is pleased with his progress. Only a few more visits and he will be done with her as well.
On July 9th we also saw Dr. Hayakawa, who was once again very pleased with how well Rob is doing. In fact he said Rob is doing so well that he doesn't need to see him for 3 months. One thing that we were able to talk about with him was the hair in Rob's mouth. When they took the skin from his arm to put in his mouth they also took the hair follicles. Rob will now not have hair on his arm but instead will have it in his mouth. As you can imagine this is not the nicest feeling. Dr Hayakawa is going to refer Rob to get laser hair removal done and will also write a letter to have it covered. We are not sure when all of this will happen but it is good to know they are going to help him out.
Rob's speech is remarkably good when you consider what he has gone through. He had an assessment done with the Speech Language Pathologist Candace, who identified what letters are the biggest problem. There was no surprises for us but she gave him words to practice...and by practice I mean repeat them over and over again until he can say them correctly. Think about all the words you say that the tip of your tongue touches the roof of your mouth and those are the tough ones for Rob.
Just a few other prayers and praises to update you about.
-Pray that they make a decision soon about EI and that we get a fair payment. They seem to be very busy and have not even processed Rob's application.
-Praise God that my wisdom tooth came out in one piece and everything went well. I didn't have a lot of pain and it is healing up nicely.
-Praise God for time away as a family and that we were able to spend some time in the Whiteshell relaxing and spending time together after a tough few months. We are thankful for generous friends who shared their lovely cabin.
Next week Rob and I celebrate our 8th wedding anniversary. In some ways 8 years have flown by but in other ways it is hard to think about life before I met Rob. I have always told him that I want to grow old together and be that elderly couple still holding hands. I am thankful to God for such an amazing man and that we can celebrate 8 years together. I look forward to many more together serving God and am so thankful we can share the ups and downs of life.
Thank you once again for all the love and prayers. We have felt each one and know that God is listening.
Love Karen
Tuesday 1 July 2014
8 weeks later.
It is hard to believe I have not sat down and written a post in over 2 weeks. The time has just flown by. It has now been 8 weeks since Rob's surgery and that is hard to believe too. Last night Rob was reading me a few of the entries he wrote in his journal right after his surgery. It was a very therapeutic thing for him to write out his thoughts and feelings and spend time reading his bible. Plus now it is great to be able to look back at where he was and see how far he has come. On May 20th he talks about me reading him 1 Peter 4 right after he had his trach removed and his NG tube changed. That was a very tough afternoon because it all happened so quickly. 1 Peter 4:13 says "But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." It seems weird to talk about rejoicing while suffering but that is exactly what we are supposed to do. This did not mean that we loved where we were or the situation we were in but it meant that we would take everything set before us and trust God. Rob made a comment last night about wanting to be in the place with God that he was while he was in hospital. When you are faced with pain and suffering it is easier to look to God for help because everything else feels hopeless. When things are going a little smoother it is easier to forget about God and rely on our own strength. Our desire is that we would rely on God everyday, trusting him when things are tough and praising him always.
Yesterday Rob had another follow up with Dr Nason. He took a look at Rob's mouth and let us ask some questions. One of the main items we wanted to ask about was a little sore Rob has in his mouth. After being diagnosed with tongue cancer you are much more aware of everything happening in your mouth. On the right side by the flap Rob has a little bump of skin that has developed a little sore. Apparently this is something called granulation and Dr Nason does not think it is a tumor. Granulation is sort of like a little extra skin and it is sticking out and getting irritated when he eats which is why there is a sore. We were thankful to hear that Dr Nason isn't too concerned about it. In 2 weeks Rob will go back to see him and he will burn it off with silver nitrate. He said it is just done in the office and doesn't hurt. As you can imagine Rob is not looking forward to this so we are praying that it heals and goes away before then!
One of the other main things we wanted to discuss was work. Although Rob is doing very well he wouldn't be able to handle 8 hour days quite yet. The goal is to be back at work after Labour day. This gives him 2 more months to heal and get his stamina back. He is still working with 2 physiotherapists and is making improvements but is still quite a ways from being back to normal. His work at church cleaning requires a lot of physical work which he cannot handle yet. As we speak he just vacuumed the living room and hallway at home and when he turned off the vacuum he said he needed a nap! His job at the school requires him to talk all day to teenagers. Although he is speaking quite well he still has trouble with certain letters. This week he is meeting his Speech Language Pathologist to do a speaking assessment and then he will be able to work very specifically on the letters he has trouble with.
Over the last 2 months Rob has been receiving sick pay from the school and he has not had to go on Unemployment Insurance (EI). Last Friday was his last day of pay so we have applied for him to receive EI through the government. This always seems to be a complicated process and we have already been given contradicting advice from Service Canada. Please pray that this would go through smoothly and that Rob will be able to receive some payments over the next 2 months. God has been faithful and has been providing for us so far so we confidently trust that He will continue to do so.
This week I will be getting a wisdom tooth pulled which is something I have been avoiding for probably 3 years. My tooth had a filling that fell out and since it is a wisdom tooth the solution now is to pull it. I will just be going into the regular office and have local freezing. Please pray that the tooth comes out in one piece, that there are no complications and that the recovery is not painful. This seems like such a small thing compared to what Rob has gone through but it is still no fun and I look forward to having it over.
Thank you for caring for our family and for praying for us.
Love Karen
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