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
Tuesday, 26 August 2014
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
Monday, 16 June 2014
All Clear!
I am going to get right to the point today. Dr. Nason called this morning to tell Rob that his pathology results are all clear!!!!!!!!! Praise the Lord! The 2 things they were looking at were the margins around the tumor being clear and he said there was more than 5mms of clear cells so they were very happy with that. The other thing were looking at were the lymph nodes and they were completely clear too! This means no radiation or further treatment will be needed. Rob still has a lot to do to get back to normal after surgery and will still be off work for awhile recovering but to know that he doesn't have to go through radiation is so good. Since his surgery on May 6th we have been waiting to hear the results and although we both felt a sense of peace most of the time, we are human and we worry. We tried very hard to keep ourselves busy and not sit and wait for the phone call since we didn't know when it was coming. We assumed we had another week to wait so to receive the news today was a great surprise especially since it was good. Dr. Nason was pleased with the results but also told Rob that he will be monitored very closely for some time to make sure the cancer doesn't return. We are thrilled for the great news and give all the glory to God. He has been faithful to us and we are thankful for this huge answer to our prayers.
Rob's flap in his mouth is still very swollen. We can see the swelling going down but there is still a lot to happen before he is able to talk and eat like normal. Each day we see improvements and know that eventually he will be back to his old self. A lot of Rob's time right now is focused on physio. He is seeing a Hand Therapist to help with his wrist that has the skin graft and his elbow and hand. As well as a Physiotherapist that is helping him with his neck and mobility. He is very stiff, his neck movements are very restricted and by the end of the day he is quite sore. Both of the Therapists have given Rob a list of exercises and stretches to do at home so it keeps him busy!
We are so thankful for the news we received today and feel a huge relief. We now know what the near future looks like. We were even able to book our trip to Ontario to see my family and friends this summer! We don't know exactly when Rob will return to work, or when he will have his strength back, or when the swelling will go down in his mouth but we do know that God is looking after us and He has not forgotten us. Thank you again for all your love, support and prayers. Continue to pray for God's healing and for a quick and complete recovery.
Love Karen
Rob's flap in his mouth is still very swollen. We can see the swelling going down but there is still a lot to happen before he is able to talk and eat like normal. Each day we see improvements and know that eventually he will be back to his old self. A lot of Rob's time right now is focused on physio. He is seeing a Hand Therapist to help with his wrist that has the skin graft and his elbow and hand. As well as a Physiotherapist that is helping him with his neck and mobility. He is very stiff, his neck movements are very restricted and by the end of the day he is quite sore. Both of the Therapists have given Rob a list of exercises and stretches to do at home so it keeps him busy!
We are so thankful for the news we received today and feel a huge relief. We now know what the near future looks like. We were even able to book our trip to Ontario to see my family and friends this summer! We don't know exactly when Rob will return to work, or when he will have his strength back, or when the swelling will go down in his mouth but we do know that God is looking after us and He has not forgotten us. Thank you again for all your love, support and prayers. Continue to pray for God's healing and for a quick and complete recovery.
Love Karen
Tuesday, 10 June 2014
Silver lining!
Even though we are going through something that isn't so great we have found many silver linings. One of them is the amount of time we get to spend as a family. Over the last week Rob didn't have many appointments and I work part time so the other times we get to be together. Our normal life is very busy and we don't get very much time with the 3 of us so this recovery time is a welcomed break. We are trying to enjoy it by getting some stuff done around the house, relaxing, enjoying the nice weather and just being together. When you are faced with a crisis like this you really start to realize what is important in life and things that would drive you crazy before just don't matter. We are thankful for each day we get to enjoy life together and we welcome doing it at a slower pace.
Last Wednesday Rob had his follow up with the plastic surgeon, Dr Hayakawa. He was very happy to see Rob healing so well. His skin graft is now able to be open to the air and he can get it wet. This new skin will burn in the sun very easily and it is still very sensitive so Rob keeps a little cover on it if we are out but when we are at home he is able to just leave it open. Even Isaac thinks it looks cool! His tongue and flap (this is what they call the reconstructed tongue) are looking great and healing well. There is still a lot of swelling but this will take months to really go down. Many people who haven't seen us have been asking if Rob can talk ok and the answer is yes. He talks with a lisp but most of the time you can understand him quite well. Occasionally I have to ask him to repeat himself but as long as it isn't too loud in the room and we are close by he can communicate well. He also had his stoma site looked at, which is where his trach was, and it is healing so well that he only needs a small bandage. This also means that we are not in need of homecare as much. We are in the process of getting discharged from homecare and if Rob needs a bandage changed either I can do it or he will.
While we were at the hospital on Wed we took the opportunity to say thank you to the staff on GH5, the unit where Rob stayed for his 2 weeks in hospital. I had become quite familiar with the way their schedule works so we were able to go on a day when a few of our favourite nurses were working. We brought them a gift basket that I had made and a card just letting them know how wonderful they were and that our experience at the hospital was great because of them. They were thrilled to see how well Rob is doing and said it was a pleasure caring for him. The staff on GH5 will also hold a special place in our hearts!!
We have had lots of people asking about the pathology results and we still do not have them. We were originally told we would have them in 3 weeks but now we heard it sometimes takes 6 weeks. Dr Nason will call us as soon as he receives them but we are not just sitting around waiting for them. It could still be another 2 weeks so continue to pray that the results are good, that the lymph nodes are clear and that they were able to get the whole tumour with clear margins. We both feel peace about waiting and would rather wait and know that the results have been done thoroughly and carefully even if it takes a little longer.
Some more good news is that Rob has started to be able to eat solid foods. I would say he is on a soft minced diet where he is able to eat soft food cut up very small. Basically he needs to place it back in his mouth where he still has tongue but once it is back there he can chew. He was able to enjoy a hotdog wiener the other day....many people would pass up a hotdog but when you haven't tasted meat in over a month a hotdog is delicious. He eats very slowly but is enjoying having some more variety. He often will finish a meal with some soup as chewing is tiring.
Each day we feel God walking alongside us through your prayers, encouragement, meals, cleaning, cards, financial help, and acts of service. We are blessed to be surrounded by a caring community and thank God each day for his blessings. Sometimes you just need to look around you to see the silver lining everyday!!
Love Karen
Last Wednesday Rob had his follow up with the plastic surgeon, Dr Hayakawa. He was very happy to see Rob healing so well. His skin graft is now able to be open to the air and he can get it wet. This new skin will burn in the sun very easily and it is still very sensitive so Rob keeps a little cover on it if we are out but when we are at home he is able to just leave it open. Even Isaac thinks it looks cool! His tongue and flap (this is what they call the reconstructed tongue) are looking great and healing well. There is still a lot of swelling but this will take months to really go down. Many people who haven't seen us have been asking if Rob can talk ok and the answer is yes. He talks with a lisp but most of the time you can understand him quite well. Occasionally I have to ask him to repeat himself but as long as it isn't too loud in the room and we are close by he can communicate well. He also had his stoma site looked at, which is where his trach was, and it is healing so well that he only needs a small bandage. This also means that we are not in need of homecare as much. We are in the process of getting discharged from homecare and if Rob needs a bandage changed either I can do it or he will.
While we were at the hospital on Wed we took the opportunity to say thank you to the staff on GH5, the unit where Rob stayed for his 2 weeks in hospital. I had become quite familiar with the way their schedule works so we were able to go on a day when a few of our favourite nurses were working. We brought them a gift basket that I had made and a card just letting them know how wonderful they were and that our experience at the hospital was great because of them. They were thrilled to see how well Rob is doing and said it was a pleasure caring for him. The staff on GH5 will also hold a special place in our hearts!!
We have had lots of people asking about the pathology results and we still do not have them. We were originally told we would have them in 3 weeks but now we heard it sometimes takes 6 weeks. Dr Nason will call us as soon as he receives them but we are not just sitting around waiting for them. It could still be another 2 weeks so continue to pray that the results are good, that the lymph nodes are clear and that they were able to get the whole tumour with clear margins. We both feel peace about waiting and would rather wait and know that the results have been done thoroughly and carefully even if it takes a little longer.
Some more good news is that Rob has started to be able to eat solid foods. I would say he is on a soft minced diet where he is able to eat soft food cut up very small. Basically he needs to place it back in his mouth where he still has tongue but once it is back there he can chew. He was able to enjoy a hotdog wiener the other day....many people would pass up a hotdog but when you haven't tasted meat in over a month a hotdog is delicious. He eats very slowly but is enjoying having some more variety. He often will finish a meal with some soup as chewing is tiring.
Each day we feel God walking alongside us through your prayers, encouragement, meals, cleaning, cards, financial help, and acts of service. We are blessed to be surrounded by a caring community and thank God each day for his blessings. Sometimes you just need to look around you to see the silver lining everyday!!
Love Karen
Monday, 2 June 2014
The road to recovery.
Well it's been a week since I wrote an update so I will do my best to catch you up. When there are less appointments happening we are able to enjoy our time together and I don't sit down and write an update!
Last week I went back to work for my normal shifts and Isaac was back into his normal routine. Rob was happy to have some peace and quiet to relax at home....infact I think he may have been happy we were gone for a bit! While he was at home he was able to work on eating and creating some delicious pureed food. On Tuesday he stopped using the tube to get his food and by Thursday he was feeling confident enough in his intake that I called to see if he could get it pulled before the weekend. On Friday afternoon we had a few appointments at the hospital and we were able to meet with the Speech Language Pathologist Candace and she pulled the tube. It is tough to go in but easy to come out and Rob felt great having that last tube removed! He is now consuming more calories then they had him on with the tube feed and has started gaining back some weight.
Our next appointment on Friday was with Greg from Physio. He specializes in hand and wrist therapy. He did an assessment on Rob and was able to give him some exercises to improve his mobility in his hand, wrist and elbow. If there is one thing I am surprised at is how quickly Rob's muscles have atrophied over the last month and Rob looks forward to gaining the strength back. Today we stopped in to see Greg again so he could assess if the exercises were helping and they have made a huge difference even in a few days. He even said Rob was a "model patient". Rob now has some new exercises to work at starting to strengthen his muscles and we will go back in a couple of weeks.
The last appointment on Friday was with the nurse from plastic surgery. She looked at Rob's skin graft, his trach wound and his mouth. It is funny to me that when we look in his mouth it is hard to picture what it will look like in the end but when the nurse looked at it she said the flap looked beautiful! She was very impressed with how everything was healing. Friday was a good day of appointments with lots of positive encouragement.
This weekend we were able to enjoy some of the beautiful weather outside. On Saturday we packed up lunch and spent a few hours at a park close to our house with some friends and Rob's sister and her hubby. It was a really great time. We also went to church again and had a really powerful time worshipping God. Rob and I both feel our worship has more depth and when a song talks about trusting God through a tough time we have done that so the words are more meaningful. We often hear the phrase "worshipping in spirit and truth" and this is so true for us right now.
Today was Rob's follow up appointment with Dr. Nason and we had hoped we would get the pathology results so we would know what the next step is. Unfortunately Dr. Nason has not received the report yet. It was disappointing to not leave there knowing but we both feel a sense of peace. Once he receives the results he will call us but until then we will keep focusing on recovery. He was very pleased with Rob's recovery so far. He reminded us once again that the process is slow but it was going well. It will be months before he is able to really notice a difference in his speech and eating but that is part of the process. We will see him again in 4 weeks but in the meantime he basically told Rob to live his normal life as much as he can. He also said that Rob was ok to play disc golf which made Rob very happy! He has to make sure to protect his skin graft but getting active will help him recover faster. Rob does get tired very quickly and needs to rest between activities but we love the time we get to go on "adventures", as Isaac would say it, as a family.
Love Karen
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