Whole from the inside out.

If you know Rob you know he is a deep thinker.  You also know that he thinks things through before he says much.  Often life's busyness gets in his way of being able to sit down quietly and read his bible and journal as much as he would like to.  The good thing about recovering is you have lots of time to just sit and reflect which is what Rob has been doing.  Here is his reflection and thoughts from his time with God the other day....




Mark 2:1-12-Jesus forgives and heals a paralytic
Today I was reading chapter 2 from the Gospel of Mark.  Jesus has a crowd gathered around him so friends of a paralytic man lower him through the roof to Jesus' feet to be healed. You can read it here.




I visited the school I work at today and saw my friends and co-workers for the first time in over 3 weeks.  It was great to see them, to be encouraged by their kind words, but also to see their joy at my recovery.  I could sense their sincerity, it surprised them, but I could tell it touched them.  I think this is more than just feeling good about someone's health.  It is evidence that God is good and he heals and loves us.  I can firmly say that I would not be in this good shape without my faith.  Faith in God is what keeps me hopeful, keeps me patient, keeps me humble and gives me the strength to press on.




A serious condition like cancer, or paralysis (as in Mark 2), does something special to your faith.  It proves it.  I wouldn't say it makes it out of nothing, and I wouldn't say it destroys it, if it is there.  The faith God has placed in me has continually been proven through the circumstances I find myself in.  This process of being proven is like packing or condensing a foundation, the concrete needs air vibrated out of it so it will be strong and free of weaknesses.  And so our faith is proven by pressure, shaking, pain and the other messy things in life.  This is what works out the fluff and superficial phoniness.  It makes faith real. 




But what if you have no faith?  What happens to your life when the foundation that is being shaken to pieces is not really there?  Or if it is barely put together?  I have witnessed friends whose faith has fallen apart during adversity. Some have forsaken their faith in God for other things or their fear makes them forget what God has done before.  God is not afraid of our questions.  He wants us to come to Him, begging for answers, healing and miracles if we trust that He will answer and that He loves us.  The paralyzed man and his friends knew that in Mark 2, they came to Jesus desperate, with only faith.  Mark 2:5 says,When Jesus saw their faith He said to the paralyzed man, "Son your sins are forgiven.".  These words mean that Jesus heals the whole person.  He goes soul deep first, meets the spiritual/eternal need of forgiveness and heals the man of his physical malady.




This is what I mean by a foundation. Faith in God, approaching Him wholeheartedly and He makes you firm and secure.  He makes us whole from the inside out.  This is who my faith is in.  What about you?  Will your faith be proven true?  Make sure it's in place before the hard tests come.




I say this because I want people to react like in the last line from Mark 2:12, "This amazed everyone and they praised God, saying, 'We have never seen anything like this!'" I don't think I'm a special case, I just want people to see that God has done great things in my life and he's worthy of our trust.




Rob

Our new normal.

Isaac always talks about being together as a family.  Whenever he finds out the 3 of us get to be together or go somewhere together he usually yells "Hooray!".  That is how I am feeling right now!  It is so good to be back together and have Rob back at home with us. 


Over the last few days we have been getting into a new routine with homecare coming to change Rob's dressings, doing the tube feeds on our own, Rob sleeping lots, hanging out as a family and doing some outings together.  I have also started back at work and it is going well. While Rob was in hospital I had a hard time even thinking about being at work and not being with Rob or Isaac.  Rob is feeling confident being at home alone and this morning when Isaac and I left Rob happily waved and was looking forward to some quiet time...something he didn't get any of in the hospital. 


This weekend we were able to go out a few places together.  Rob gets tired quickly but we are figuring out what is enjoyable for him so he can get out here and there.  One Friday night Rob came and cheered me on at volleyball....well he wasn't exactly cheering loudly but I loved having him there.  After volleyball we stopped by church as youth group was ending.  We are youth leaders and basically all of a sudden stopped going because of Rob's diagnosis.  So we were able to stop by and say hello to the youth who we miss a lot.  When Rob walked in the room they all cheered and clapped.  They even laid hands on him and prayed for him.  It is moments like these where you realize the positives far outweigh feeling a little tired.  After that we met my team at Dairy Queen where Rob was finally able to have some ice cream! 


On Sunday Rob decided he was up for going to church!  It was very encouraging for him and everyone was very happy to see him.  Our church has been an amazing support to us and it was good to be there and show them evidence of their prayers.  I can't imagine not being surrounded by a community of believers like we have.  We have both been brought to tears by the generosity of our church and it's members as well as family and friends who don't go to our church or even live in Manitoba.  I wish I had the energy to thank each one who has helped us in some way and those who will continue to help on our journey.  So know that your words, prayers, gifts, financial support, food and love are so greatly appreciated and cherished.  It is amazing how we can go through a tough time like this and still smile each day knowing God loves us and has given us a community of support.  Thank you from the bottom of our hearts. Praise be to God, the giver of all good things!


Over the next week Rob will slowly introduce more foods into his diet to take orally.  He will be on a pureed diet for a while but we have mastered this because this is what he was on before his surgery.  It is amazing what you can puree and it actually tastes really good!  Next Monday at the follow up with Dr Nason we will also meet with Speech Language Pathology and maybe they will get rid of the tube feed if Rob is taking enough by mouth.  This Friday Rob will also be starting physio on his arm.  When we left the hospital he was given some exercises to do to strengthen the arm where the skin graft is but as he gets stronger he needs more exercises. 


We continue our journey day by day trusting God.
Love Karen

Sweet, Home Sweet.

Isaac has always mixed up the saying home, sweet home and said it sweet, home sweet as we pull into the driveway.  I don't think Rob would care how you said it today, he was just glad to be home!


After meeting with the home nutrition rep, Occupational Therapist, Speech Language Pathologist, plastic surgeon resident and the nurse Rob was given the go ahead to leave!  After living somewhere for 2 weeks it does start to feel like home.  Even for me it was a familiar place with people that knew who I was.  Although I didn't sleep there I spent a lot of time there and got to know some staff.  Over the last couple of days as staff left after their shift and knew they wouldn't be back until after Rob was discharged they came by to say good bye and wish Rob the best.  We were always told to come back and visit so we will do that and look forward to sharing Rob's progress with them even after he is home. 


At 12:30pm we walked out of GH5 and began the next step in our journey.  After stopping to pick up all of the home nutrition supplies we drove home.  Isaac spent the day with Grandma and Grandpa so it was quiet when we got home and Rob could get settled in.  Rob walked into the house and headed straight to the couch!  I asked him if he was happy to be home and he said yes and that it was so quiet (something you don't experience in the hospital).  As I loaded 11 boxes of supplies from the car into the house Rob quickly fell asleep on the couch!  The feeling of having Rob home is amazing!  Once Isaac arrived home and the 3 of us were together it just felt so right.  Isaac was so happy to see daddy at home and we were able to do bedtime together.  Even something as simple as sitting on the couch beside my boys is something to treasure. 


To make our day even more interesting our furnace stopped working.  I woke up this morning and thought it felt cold in the house and I knew Rob would be freezing.  When I checked the thermostat and saw the actual temperature was much colder then it was set to I knew there was a problem.  It is times like these that having handy friends is useful.  Our friend John came and saved the day!!  He was able to come over today and fixed the furnace as well as yesterday he fixed our toilet and our lawn mower.  It sure does suck to have all these things break without Rob around but we are very thankful for John and him helping us out.  Tonight will hopefully be the last night we will need heat this spring especially looking at the forecast on the weekend!
Over the next few days we will get our life at home with Rob recovering figured out a little.  We have set up a room for all of Rob's medical supplies and a lot of our time with be taken up with preparing and cleaning the tube feeding supplies.  We will also enjoy some family time just being together.  While recovering from surgery you are forced to relax and I think it will be a good thing for us to just slow down. 
Rob will have a follow up with Dr Nason on June 2nd and he will also see the plastic surgeon and the speech language pathologist in the next couple of weeks.  Please continue to pray for Rob as he recovers that he would be able to swallow and not have to have a feeding tube very long, that the swelling in his mouth would go down, that he would regain full mobility to the arm with the skin graft, and that he would quickly learn how to speak again.  Also pray for clear pathology results and for a complete healing and recovery. 


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 1 Peter 5:10

Long weekend at the hospital.

This weekend not a lot happened medically which we knew would be the case but it still was eventful.  The best part of the weekend was arriving on Saturday at the hospital after work.  I had worked all day while Isaac was with Sarah and Rob's mom was with him.  It was hard for me to be away from both of my boys so I was happy to spend some time with Isaac in the late afternoon and then arrived at the hospital in the evening.  Rob's trach was capped during the day, meaning that they block it so he is breathing through his mouth and nose but it is still there just in case he needs it.  When I walked onto the unit I stopped to talk to the nurses and ask if we could go for a walk outside.  I had asked the weekend before but they don't like you to leave the unit if you have a trach just incase something happens so they had said no.  Once he was capped we got the yes to go out.  Then his nurse said to me that I might not even recognize him!  I went running down the hall to his room to see handsome Rob showered and shaved!!  So off we went on our adventure outside!  I took him in a wheelchair and we went to the sunny side of the hospital and just enjoyed the fresh air and each others company.  We didn't stay too long because Rob was getting cool but to get outside was great.
Sunday and Monday were quiet days with a few family visits, practice at doing the tube feeds ourselves, playing carcasonne,  a visit to starbucks on the first floor, saying goodbye to Sarah after her visit and just spending some time together.
Before we knew it the long weekend was over and Tuesday was here. We knew a lot would happen today but didn't realize it would all happen at once. The first thing that happened was they removed Rob's splint on his arm and took out the staples.  He still has to keep a bandage on it but they are very happy with the skin graft and he is now able to start exercises to gain strength back.  It is very weak and stiff so he will have to work hard at it but his goal is to be able to do a push up again.  The skin on his  arm will always look a little different but over time it will look better and better. 
Next on the list was the physio therapist.  He went over exercises Rob should do and how to help get his arm back to being normal.  He also talked to us about getting physio as an out patient to help over the next few months. 
Sometimes when you are in hospital you can wait a long time to see the doctor but today the 3 people we needed to see arrived within 10 minutes of each other.  Plastics came first to switch Rob's NG tube.  They had put in a large one and it needed to be downsized.  Ideally you are not awake while they put in a feeding tube but Rob did not have that option today.  It was not an enjoyable experience but they got it out and in with no problem.  Right after that the Speech Language Pathologist  came to talk about swallowing.  Before we even asked any questions the dr came to take out the trach.  I assumed this would be a big deal but it was gone in 15 seconds.  I turned my head and it was out.  It wasn't uncomfortable to get it removed however Rob had a really hard time with coughing after it was out.  I would say for about 2 hours Rob was very uncomfortable with constant coughing and feeling he couldn't catch his breath.  It often takes a little bit for your body to adjust to the constant changes.  When the dressing on the trach was changed tonight you could already notice a difference in the size of the hole.  It is truly amazing how our body can heal.  The Speech Language Pathologist said she would come back tomorrow morning so Rob could rest after all that had just happened.  The last thing that needed done was an xray of the NG tube to make sure it was going into his stomach.  This was done quickly and after the results came back Rob was able to have some pain meds and eventually had a nap.,
Isaac is really missing having daddy at home and constantly talks about when daddy gets better and how God will heal him.  The plan is for Rob to come home tomorrow (Wed).  We have a meeting with the home nutrition program at 10am and hopefully after a few more details we can go home!  Rob is a little nervous about coming home but also very much looking forward to it.  Rob has received wonderful care over the last 2 weeks.  You often hear about terrible hospital stays but we can honestly say that it went well. 
I am absolutely exhausted emotionally and physically.  I look forward to having both of my boys at home together and being able to just relax at our home.  In the last 2 weeks I have spent very little time at home while I was awake and with Isaac so we plan on enjoying some time as a family.
Thanks for caring and praying.
Love Karen

Seeing blue

The last 2 days have been focused on swallowing.  This is something we all do without thinking about it but for Rob right now it is very different.  For the first week the doctors didn't want him to move his tongue or put anything in his mouth.  Once they are happy that the flap is attached and healing well they want him to move his tongue a lot and work on swallowing.  We have spent a good amount of time with Melissa, his Speech Language Pathologist, the last few days.  She spent some time watching him try to eat juice, water, apple sauce, jello, thickened fluids, etc.  Yesterday she made Rob drink some water that was tinted blue to see if it was coming out of his trach.  Although there wasn't a lot, there was a trace amount which means it is going down the wrong tube.  She ordered a pureed, thickened dinner for him and encouraged him to try it.  A few hours after dinner Rob had a major coughing attack and this is most likely cause by the food going down the wrong tube.  The danger with this is aspiration and getting pneumonia and although Rob is young and moving around it is not worth the risk.  Today Rob did a swallow study which is basically a series of xrays while he swallows so they can see exactly where it is going.  I was able to be right in the room and Melissa explained to me what was going on.  She met us back in Rob's room after the test and went over their findings.  At this point Rob's swallowing is not quite right and so he will only be given thickened fluids to help him practice the movement of eating and swallowing.  For now Rob's calories and protein will be from the tube feeds.  This also means that he will be sent home with his tube feed.  We knew this was a possibility but given how well he is doing we assumed he would be fine.  I think sometimes it is harder when you have been doing really well with recovery and then something goes wrong.  Rob has a hard time with the fact that he can't swallow and eat yet.  I have been reminding him that he is doing amazing and his body is trying to get better in many different places so it may not all work perfectly right away. I think that after being in the hospital this long he will do much better once he is home. 


The goal right now is to have him home by mid week.  We were told he would spend about 2 weeks in hospital and that is about right.  Before he can come home he will need to have his trach removed.  Different doctors do this part differently so we are not sure what the plan is.  Dr Nason will be on holidays for the next week so someone else will be seeing Rob  and we are not sure how he does things.  Hopefully it is gone but the end of the weekend. 
We will also need to meet with the home feeding program to get trained on tube feeding. Both Rob and I need to "pass' so they feel confident that we will do things right when we get home.  The nurses will start training us too so that we get the hang of it while we are still in hospital.  Today I got to flush his line and give him some meds and the nurse said I did well.  Hopefully that means we will catch on quickly and get home.  My work at the nursing home has been very helpful with all of this.  We don't do tube feeds but I have an understanding of swallowing and thickened fluids which is going to be useful. 
Isaac is really missing having us around.  He is being well cared for and doing lots of fun things but even as a 3 1/2 year old he knows that he should be home with mommy and daddy.  It has been a long 11 days so far and I look forward to having us all under one roof again.
Tomorrow I go back to work.  My work has been great and has allowed me time off when I needed it but it's my Saturday to work and there is really no reason I can't go.  I am sure it will be very overwhelming and I will be distracted and thinking about Rob and Isaac the whole time however I do love my job and I look forward to seeing my "old" friends. 
Thank you again for all the prayers and support.  Our journey is just beginning so please keep praying for all of us!
Love Karen

Look whose talking!!

Rob has made some incredible progress over the last 2 days and the biggest thing was that he talked today!!!!!  I arrived this morning and Dr Nason had already put in a smaller trach.  This allows some air to move past the vocal chords.  As soon as I walked in Rob said something to me....I was so excited to hear him that I don't even know what he said.  He had a huge smile on his face too which made it all even better.  It is still a lot of work to talk and have a long conversation but he can communicate what he needs now.  It was so fun to go walking around today and being able to talk a little and hold hands because he does need his pole anymore. 




Since yesterday Rob has also gotten all the staples out of his neck, switched to Bolus feeds (meaning 3 meals a day and a snack as opposed to constant feeds through the NG tube.), and had his IV tubes taken out.  All of these are steps to getting to come home and getting back to normal. 




He also met with his Speech Language Pathologist who will help him learn to swallow and talk.  Today he was able to have some water and as long as it was on the left side on his mouth he could swallow it.  Swallowing is a very important part being able to move forward.  Once his trach is capped and he is no longer using it to breath they will reassess his swallowing to be sure he can do it right.  The goal is to have the tube feed removed and have him on a pureed diet before he goes home. 


Rob is not taking morphine anymore so he is much more alert and is up in his chair for most of the day.  This has allowed us to play some games, watch movies and have some nice visits with friends and family. 


My friend Sarah arrives tomorrow to help with Isaac and to give our family and friends here, who are looking after Isaac, a break.  It is also nice to have someone else in the house at night while Rob is missing.  And of course a visit from a friend is never a bad thing!


Each night for the past week Rob and I text to say good night just before we go to bed.  As I was sitting here writing this  tonight my cell phone rang and said it was Rob calling.  He had called to SAY goodnight!!!  It was so good to hear his voice and be able to say goodnight over the phone.  It made my night and has left a huge smile on my face.  God is good!!
Love Karen

2 tubes gone!

Today started at just after 6am for both of us.  I knew that a lot of things were happening this morning so I didn't want to miss it.  I arrived at 7:30am and the plastic surgeon had already been there and removed the dressings on Rob's arm and leg.  They were very happy with the skin graft on his arm and said that it adhered  100%!  The skin they took went all the way to the bones and tendons so there is still a lot of healing that needs to happen.  Right now it looks like his wrist is skin and bones and the skin is very purple.  Rob said it was hard to see his wrist looking like that.  Skin is an amazing organ and through time the skin with grow back.  That spot will always be more sensitive but eventually it will look almost normal.  His leg is looking good and since it is superficial they just put a special cover on it and it will heal like a normal sore. 




About 8am Dr Nason came by and one of the first thing he commented on was how much the swelling in Rob's face had gone down over the weekend.  He said the drainage tubes could be removed and did it himself right away. One of them was stuck so he has to get the plastic surgeon to come and have a look but they were able to get it out.  So 2 less tubes today!!  He also had half of the staples removed from him neck and they will remove the rest tomorrow.


After all of that Rob was very tired so after spending the morning with him I left to go see my sister (before she flew home) and Isaac.  While it was quiet for Rob he had a nap!  Rob's mom, Marilyn, spent the afternoon with him and was there with Occupational Therapy came and made a splint for Rob's arm.  They do not want him to move his arm/hand until the skin graft has healed so they splint it to make it immobile. 




They also switched Rob's feeding today.  Up to this point he has been given nourishment through his feeding tube all day but now they will feed him larger amount but only at meal times (called Bolus feeds).   This helps his body to get used to eating meals and will eventually help when he starts eating food by mouth. 




My sister had to go home today.  It was great to have extra help with Isaac especially on days like today where I could just leave and know someone was there to care for him.  It was also great to give Rob's family a break with helping me with Isaac.  I look forward to my next visitor who arrives on Thursday! 




I have had a few people ask about visiting Rob.  He is at the point where he is ok with a few short visits.  Because he still can't talk it is best if people stop by when I am there to help him with communication.  So if you want to come and see Rob give me a call and we can work it out! 


We are exhausted and I am really looking forward to sleep tonight.  We continue to take this journey day by day, taking the time to enjoy the good things and trusting in a God who cares deeply for us.
Love Karen

Kissable lips!

If someone had told me that I might be able to enjoy spending all day at a hospital I would have said not a chance but today and yesterday I can truly say they were good days!  Rob has been doing well and the doctors are very pleased with his recovery so far.  He still has a lot of work to do to get back to "normal" but he is moving the right direction.  We were told Rob would be in hospital for 2 weeks after surgery.  I find I have to remind myself that after 2 weeks he can come home but that doesn't mean he will be all better....that takes 3 months, which is why he will be off work that long.  We just go day by day at this point and feel encouraged!




Rob has been getting up for walks a few times a day and he tries to go a little further each day.  Today he made it to the end of his unit and went all the way out to the elevators.  Isaac came for a little visit again today and Rob wanted to go for a family walk.  We even got a few pictures of it but it wouldn't let me upload them on here like we had hoped.  As always, it was nice to be together even if it was just a short walk in the hospital. 


The swelling in Rob's face and lips has gone down a lot in the last 2 days even to the point that I could kiss his lips!  He was able to smile today too!  Everything is worth celebrating right!?  This is helping him feel more comfortable and he is able to close his mouth now. 


Yesterday we felt very blessed by our church family.  On the day of Rob's surgery, there was a group of people praying from 7am-12pm at our church.  Many people stopped in on their way to work for a quick prayer and some stayed for hours.  We were told it was a very moving time.  Our pastor came to visit us and brought a book that everyone who attended that morning has signed.  As Rob rested, I read each note and cried the whole time.  They were tears of happiness and just being overwhelmed by the love and support we have received from those around us.  We also received an incredible gift from a group of people who care about us and just wanted to do something for us.  I was telling Rob's nurse today about all of the blessings we have received and she was blown away.  It is hard to believe that some people do not have friends and family around them and have to make this journey alone.  Thank you to all of you for taking this journey with us. 


Rob was able to get rid of one tube today!  One of his IV's got partially pulled out so they removed it and didn't out it back in!!  Monday will hopefully be a big day too.  If over the weekend everything progresses as it has been, they may remove the drain tubes and the staples.  They are also going to take the dressing off the skin graft on his arm and see how it is doing.  Depending what stage it is at in healing will change what they do with it next. 


Isaac is doing well through all of this.  He has been spending time with family and friends who love him dearly and although he talks about missing mommy and daddy he is well cared for.  Today when he was at the hospital he all of the sudden looked at Rob and said " I love you daddy" which I know made Rob's day.  I look forward to having Rob back at home so I don't have to chose which of my boys I am with.


God is good and we know he is looking after us.  I think the only way you can take a bad situation like this and be able to see the good and enjoy parts of it is because of God's grace. 
Love Karen

Rob gets a special visitor!

Another late night and I am trying to think of some lovely way to write the post tonight and I have nothing so I am just going to write what happened today!  I arrived at the hospital just after 9 and Rob was already up in his chair!  It was so nice to walk in the room and seeing him sitting there.  Rob also walked today!!!  I think I was more excited to see him walking today than I was when Isaac learned how to walk.  Throughout the day he walked 3 times.  They are really pleased to have him up and moving as it helps with his mobility as well as prevents pneumonia setting in from staying in bed.  He also was finally given some nourishment through his feeding tube.  He went almost 50 hours with no food!   Having the nourishment is super important because they don't want him to lose too much weight.  I was able to spend most of the day at the hospital today and we were able to enjoy some time together...we even watch the Canada vs USA women's soccer game tonight!


Rob has a special visitor today.....Isaac!  Rob and I talked about having Isaac come see daddy this morning and both felt he would be ok.  I brought him over late in the afternoon just for a short visit.  Before Rob's surgery we told Isaac what was wrong with daddy so he knew a little bit and then today I explained how daddy looked.  As we drove to the hospital we talked about it some more and Isaac seemed fine with it.  Well we couldn't have been happier with how the visit went.  Isaac walked in and saw daddy and was quite excited.  He gave him the get better soon picture he made and daddy gave him a new hot wheels car.  Isaac then sat on my lap and we talked about what he could see on daddy.  He was very curious about it all but not scared at all.  I really think it was good for Rob and Isaac.  Over the weekend I will bring him over again and maybe he can stay even longer.


We are all doing as well as you can expect.  My biggest struggle is feeling like I have to choose between Rob and Isaac.  I just have to remember that Isaac is always in good hand whether it's family or friends looking after him and even though he misses me he is doing just fine.  Rob really needs me right now and for a couple of weeks if Isaac doesn't see mommy and daddy as much it is not going to affect him in the long run. 


We are so blessed and thankful for all the people we have praying for us, helping us, and being there for us.  We would not be doing so well if it wasn't for all of you so thanks from the Scott's.
Love Karen

Throwing cancer in the garbage.

This morning I got a text from a friend with what her son had said this morning after he heard Rob's surgery had gone well..  This is what he said, " I am happy they took his cancer away, did they throw the cancer in the garbage? Because that is where it should be, not in my Uncle Rob. Auntie Karen should kiss him on his forehead because that is where I would because his mouth is probably sore." 
Such a simple thought from a kid but so true!  We do want to throw the cancer in the garbage and it shouldn't be in Rob and I did kiss him on the forehead lots today!


I wanted to be at the hospital today for rounds but was told they could start as early as 6:30am so after the long day yesterday I decided I wasn't going that early.  It worked out well because about 8:30am Dr Nason called me after he had gone into to see Rob.  He said that Rob was doing well and things were moving along as they should. He reassured me that the swelling was normal and that Rob was doing well.


When I arrived at the hospital just after 9am the nurses were in with Rob.  He had just vomited and they were cleaning him up.  After he vomited a second time they gave him some gravol and then realized the feeding tube wasn't quite working right.  There was even talk of removing it and putting in a new one.  This is not something that is fun when you are awake.  After more than a few nurses came to take a look, trying many tricks, one nurse finally moved it out and in a little and it solved the problem!  After that it worked as it should and there was no more vomiting.  One very specific prayer request is that the feeding tube would not bother Rob.  This tube is causing some discomfort for Rob but it is a very important tube so it has to stay in.  Please pray that he doesn't even feel it.


Rob's biggest hurdle that he passed today was sitting up in a chair for over an hour.  Because he is young they are encouraging him to get up and moving as soon as he is able.  It was nice to see him sitting up and he said it was good to move off the bed.  The next step will be to start walking!


I always said when I was young that I wanted to be a nurse but science was not my favourite subject so I never pursued it.  Today I got to be a nurse for Rob.  Don't get me wrong his nurse today was wonderful but I enjoy being able to help him with some of the simple things.  One of the most frustrating parts of this all is that Rob can't talk and tell me what he needs.  He uses a white board and writes words or gives signals but sometimes it is still difficult. 


I was able to come home this evening for a bit to eat dinner and see Isaac for a bit.  I went back to the hospital just before 7pm so that Rob and I could watch Survivor together....something we do every week.  It was nice to sit and enjoy something we both enjoy and just pretend everything is normal. 


I think if you asked Rob how he was doing that he would say he is doing awful because he still feels so bad.  If you asked me that same question I would say he is doing amazing.  No one said recovery was easy or fast but instead difficult and slow.  It is amazing to think that yesterday he had 12 hours of surgery and 24 hours later he had made many steps on the road to recovery.  Hope tomorrow beings more steps in the right direction. 
Good night!  Love Karen

The longest day of my life

Our day started with the alarm clock ringing at 4:15 am, after only a few hours of sleep, and it ended just after 11pm when I got home from the hospital.  I am beyond exhausted but know that many people have been praying for Rob and our family all day so wanted to give you a brief update.

We got to the hospital just before 5:45am and went to admitting to check in.  After all the paper work was done we were brought upstairs for Rob to get ready.  We saw a nurse and the plastic surgeon who drew all over Rob's leg and arm with a sharpie.  At about 7am they came and said it was time for him to go and that I couldn't go any further with him.  We said a quick goodbye and he was gone.  Kathy and I were brought to the second floor to a family waiting area.  I scored the most comfy seat in the room which is good because we waited for almost 12 hours!  When I was told the surgery was going to be 8 hours I thought that was long but having it go for almost 12 was torture.  For the most part I felt very calm and I know that it was because of the prayers.  During the 12 hour, wait we had a visit from a couple friends and Rob`s mom Marilyn which helped pass the time.  After finally getting to go in to see Rob after 12 plus hours, I am confident that was the longest wait of my life!

At about 1:30pm, Dr Nason came out to talk to me as he was done his part.  He said there were no surprises and everything went as planned.  He took lymph nodes out of both sides of the neck so Rob has a very large incision across his neck.  He took out the tumor and a clear margin (space around the tumor).  At a quick glance pathology said it was good and he didn`t need to take more  today but we won`t know for sure for a few weeks when we get the full report.  Unfortunately he had to cut into the jaw bone a little to make sure it was all gone.  This means Rob is missing a few teeth on the bottom and some bone but this can be fixed by implants after everything is healed up.  Overall he was pleased with how it went.

After Dr Nason was done, the plastic surgeon went to work on his part.  We were told this would take 3-4 hours but it actually took over 6!  They took skin from his forearm to fix the tongue.  This is better for tongue function versus bulky skin from the thigh.  They then take skin from the thigh and do a skin graft on the arm.  His tongue looks very good as far as I can see and that is why it take so long because it is such fine work.

Finally sometime after 8, I was able to go see him.  He was awake but very groggy due to being out for 12 hours.  It was tough to see him laying there, and seeing everything he had done is overwhelming, however, given everything he had done he looks pretty good.  Not being able to talk has already proven difficult but each day communication will get better.  We waited until he was taken to his room and got him settle then said good night and left.

We are home now and I am not going to lie, it feels terrible not having Rob here.  I know I will sleep tonight because I am so tired but it just doesn't feel right not having Rob here.  I pray that he recovers quickly and/or the time goes by fast so he can come home soon!

I can barely see straight now so I will go to bed and if I missed something I will update tomorrow sometime.  Thank you for surrounding our family with prayer today!
Love Karen

Prayer Requests

Tomorrow is surgery day...Part of us are thrilled it is finally here and Rob can begin the road to recovery.  On the other hand, we are anxious and scared about how it will go.  We have to be at the hospital at 5:45 am and surgery will start at 7:30 am.  The surgery will last approximately 8 hours and then he will be in recovery for a few hours.  I am not sure at what point I will get to see him but I know it will be a long day.  We met with our surgeon today and went over a few more details.  Tomorrow as Rob is in surgery, we have some very specific prayer requests.  Please pray:

- That there would be a clear margin around the tumor and they would not have to remove any jaw bone

- That the tumor would have a defined border and that it can all be removed by surgery

- That the cancer has not spread to the lymph nodes

- That the flap (skin from Rob's thigh) would successfully attach to the tongue that is not removed

- For Dr. Nason and his team for wisdom and endurance during the 8 hour surgery

-For peace and patience for me while I wait.

-For a quick and full recovery.

-That God's hand would be in every part of our day.

Thank you again for all your prayers, love and support.  I honestly can't imagine going through something like this with out a community surrounding you and without faith in a God who heals and loves us.

Since Rob's recovery will be difficult without the ability to talk we ask that he doesn't have visitors for the first while.  I will let you know when he is up for short visits.

Love Karen

Purpose in Pain-a few words from Rob

This evening as I sat at the foot of my son’s bed, after having struggled through bedtime prayers with him, I reflected on the pain that I have been experiencing. Eating is painful, drinking is painful, swallowing a pill is painful, talking is painful, etcetera, etcetera.  I realized quickly that most of my thoughts are very selfish and based primarily on avoiding the pain . Since this cancer has shown itself on my tongue, even as a small canker sore this past fall, my main concern has been removing the pain. But maybe there’s more to pain than simply avoiding, minimizing or removing it. Maybe there’s a purpose in pain.

This struck me because I regularly, daily even, pray that my son would learn to love the Lord and follow Him every day, to be like Him, and for myself and Karen to also live that way.  I say I want to be like Jesus: to embody his character, follow his teaching, love God with everything and my neighbour as myself. So when pain comes what happens to that desire to be like Jesus? Do my prayers sound more like: ”Please God take this suffering away from me”? They usually do. Do I get crankier and complain a lot more? You bet. Do I lose my cool with my son at the drop of a hat? Most of the time. So is that becoming more like Jesus? By God’s grace it is!

As I was reflecting on all this, I realized that one purpose of pain is purification. The pain in life can be used to bring out the impurities, the sin, the ugly mess that gets tucked away when life is “normal”. The important part is how we deal with what comes out in response to pain. I have hinted at the fact that my patience wears thin at a faster rate than usual, pain has a way of doing that. But I have started to recognize it and confess it to God. His grace is sufficient for me, and it is strong enough in my weakness. More and more, I realize that I need Jesus on a moment to moment basis. So when pain starts boiling up in some spot, exposing the sin in my life, it’s a hard-earned path to a purified heart. A path that Christ has gone before me on and walks with me as the Good Shepherd.

Looking towards Tuesday I feel like I’m walking down the valley trail, its dark, too dark to see how long, how hard and what shape I will be in when I come out the other side. But I can see the other side, and I trust that Jesus is walking with me, because he has walked with me this far through the other trials in my life. The scary part is not knowing how deep and dark it will be, not knowing the fullness of my recovery, and frankly being afraid of the pain. But I trust in God, where else could my help come from?

Rob

More appointments.

The last few days have been a bit of a blur.  I already find myself having a hard time keeping up with emails, phone calls, and just general stuff that need done.  Sometimes it is hard to believe that it has only been a few weeks since we were told that Rob has cancer as it often feels like it has been months.
On Wednesday this week we spent another morning at the hospital.  Our first appointment was Rob's pre-op.  We met with a nurse, a speech & language pathologist, and an anesthesiologist.  They went over the details for Rob's surgery and what to expect.  Some of the details are hard to take but it is good to know before they happen.  Rob's surgery will be 8 hours or more depending how long the reconstruction takes.  He will have a tracheotomy that will help him breath for the first few days but this will also prevent him from talking at all.  Not to mention all the other tubes and wires he will have coming in and out of him.  It was reassuring to hear that since Rob is young, strong and healthy besides this, that it should all go as planned. 
After that we met with the plastic surgeon about the reconstruction of Rob's tongue.  They have decided to take skin from his thigh and not his arm.  This will mean he will have a long incision almost the whole length of his thigh (as opposed to doing a skin graft on his arm).  We were hoping that they would choose his leg..after all who sees his thigh!  They will take the skin from his leg and attach it to the rest of the tongue.  This is what they call a flap since it is not muscle but will move with the muscle from the rest of the tongue.  Again the Dr said this was very routine and Rob was a great candidate!
We head into the next few days looking forward to having the surgery behind us but also with a little anxiousness about everything we will face.  We are going to try and have some fun family time this weekend and just enjoy being together.  After Rob's surgery he will not look so great so I am not sure when I will bring Isaac in to see him.  I know that Isaac will miss daddy for a few days but feel this is best.  My sister Kathy comes in on Monday to be here with me for the week.  I am hoping that having a visitor will be a good distraction for Isaac.  She is about to get a crash course in caring for a toddler! 
Some moments this all seems like too much for us to take but we know our God loves us and he has surrounded us with an army.  Some specific things to be praying for are...
-for Rob to not experience the side effects of the pain killers.
-that the surgery would go well and as planned and that Rob would recover quickly so he can come home.
-that the lymph nodes are clear.
-for Isaac as he tries to understand what is happening and for patience as we parent him.
-that we feel God's peace and presence each day.


Love Karen