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
Monday 16 June 2014
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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