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

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