Palliative Care

I have been wanting to and thinking about writing a post to update you all but to be honest with you it feels like a very overwhelming task.  How on earth can I sum up in a few paragraphs how we are doing and what we face each day?  Plus I often feel like I have so many things that need to be done and I just don't the time or brain capacity to accomplish these things.  What I do know is that there is a huge number of people praying for us and I want you to know how you can pray for us so I will do my best!

No one really know how much time Rob has or how things will happen so it is all just a guess.  The palliative care team have been working with us to be as prepared as possible for different scenarios especially with Christmas coming.  Each day we get a phone call and usually a visit from a nurse to check on Rob.  We have also had a doctor come almost twice a week to our house which has been so good for Rob as he can sit at home and be comfortable.  The palliative care staff that we have been in contact with so far are wonderful.  They are very compassionate people and although they have to discuss very difficult things with us they do it in the most kind way possible.  We feel that we are in good hands with the palliative team.

I have been asked many times over the last few weeks if I still have Rob at home and the answer is yes.  Right now we are able to manage his symptoms at home with the help of the doctors and nurses visiting regularly.  There will likely come a time when he will need to go to the hospital or hospice but right now he will stay home.  Sometime in the next few days they will be bringing a hospital bed into our home to make sleeping easier for Rob.  I know that this is the right thing to do however I hate that the new bed will have to be on the main floor and that our room is upstairs.  Just another reminder about how hard this all is.  Rob and I have had so many conversations in the last few weeks that a 30 year old couple shouldn't have to have.  This usually involves many tears but they are good for Rob and I to talk about while he can.   

The doctors would say that the cancer in Rob's body is progressing.  There is no way to really know exactly how it is growing however there are signs they know to look for.  In the last week Rob has had a harder time swallowing and this is because the tumor in his mouth is growing and pushing the flap up causing Rob to gag.  Eating is becoming more difficult and the focus is now just making sure he has enough fluid.  There has also been some major changes to Rob's pain management and although he still has waves of intense pain it seems to be a little more under control.  Rob is also getting more and more tired and has little pockets of energy to do things.  This means we need to plan visits and outings carefully to make sure that he doesn't have too much on in one day.  Overall I would say that things feel like they are changing very quickly.  Like I have said before watching someone you love suffer is an awful thing.  I pray that Rob is able to enjoy many more days with us however when he is not able to enjoy them anymore I hope Jesus takes him to heaven.  

Rob has decided to continue to do some natural treatments over the last few weeks.  Although we know that only Jesus healing him will actually make him all better we feel if the natural treatments give him more energy and make him feel good it is worth it.  He is going 3 times a week right now and will continue with that as long as he feels up to it.  

We have been blessed with some visitors over the last few weeks who have come to see Rob, Isaac and I but also to help around the house with cooking, cleaning, wrapping Christmas gifts, walking Isaac to and from school and all sorts of other things.  It has been so good to see some family and friends that we haven't seen in months and the help of having an extra set of hands in the house all the time is such a blessing.  

Although this is very difficult and often feels overwhelming we have still had some good times.  The party we had for Rob on December 5th was amazing.  Rob was able to manage his pain and visited with friends and family for almost 3 hours.  Some people who came were friends Rob hasn't seen in 20 years!  Thank you to all who came to the party and made it such a great afternoon.  It was a very encouraging day for Rob and I am so glad we did it.  Also the book that many of you waited in line to sign is so amazing to read and the words will be cherished for a long time.  My guess is there was almost 300 people who came by and even just thinking about the impact Rob has had in his short life makes me smile.  I told Rob the other day that many people live 90 years and don't make the same impact on peoples lives that he has had in just over 30 years!

Last week was unseasonably warm weather in Winnipeg so we took advantage of that (and the fact that Rob was feeling ok that day) so Rob, Isaac and I were able to get out and play a few holes of disc golf.  This is one of Rob's favourite things to do so when he said he wanted us to go everything on the to do list got dropped and we enjoyed some precious family time.  Today we were even able to get out and see the new Star Wars movie with some friends.  These snippets of good times are getting less frequent but when they come we try and make the most of it.  

Last night Rob and I were talking before bed about the fact that death isn't something that scares us because we know where we are going.  When Rob is in heaven he will be pain free and not have to suffer anymore and that is amazing to think about.  It is the dying part that is scary for us.  There are so many unknowns and fears that are associated with how things will happen and that is the part that is hard to process.  

Please don't stop praying for our family.  This is a very tough journey to be on and I can see the effects on all of us.  Pray for strength, hope, peace, joy and patience. Pray for pain management for Rob.  Pray for Isaac to know he is loved and that he will feel secure even in the turmoil.  Pray that I would have the energy I need to look after Rob, Isaac and myself.  

Love Karen