Saturday, January 23, 2010

Some more perspective

Last night Ryan and I had planned to put Talyn to bed and then watch a comedy together. But when we turned on the TV, we couldn't take our eyes off of the "Hope for Haiti Now" US broadcast. It was a breathtaking collection of people that had dropped whatever high paying job they had on the go, to come and use their talents to raise funds.

We have been mostly avoiding watching and reading the news lately, because it mostly seems to be bad and that might only bring us down. So although we knew about the devastation in Haiti, until we saw the images last night, we really had no idea.

My heart goes out to everyone who has lost someone so suddenly in that disaster and especially to the kids that don't know if they have parents now and are walking the streets alone and scared. They need so much help and although this is a terrible thing to happen, it warms our hearts to see how something so awful brings people together.

This gave me a chance to be thankful for what we have. Yes, our situation isn't ideal and will likely get worse. But we have each other today and we have our own amazing collection of people that have come together to hold us up through this time.

As I woke up in my warm bed with Ryan breathing steadily beside me and Talyn poking me in the side to tell me the clock said "703", all I could feel was extreme gratitude.

Friday, January 22, 2010

Hard questions and some new "stability"

First things first, Ryan is mostly stable still. He continues to defy all odds and I am amazed at how little time his mind spends in the bad cancer place. How does someone get up every morning and wonder whether everything is still the same? Can I still see? Walk? Talk? I couldn't imagine living with that every day, but he does.

I say "mostly stable" because he has had some very minor changes in the past 2 days. He may have a bit more weakness on his right arm, is having some problems finding words at times and has had more fatigue. But compared to what they expected, this is really minor stuff.

Home care has been amazing as they continue to call or visit daily and check in on him. They think a bed might be available at the only hospice we are comfortable with for Ryan next week, and then we will have to have a real discussion about pros and cons. At this point, we are managing well at home and it is so nice to wake up with him beside me each morning and have him around the comforts of home. But there are significant risks of a sudden change happening at any time and because of that, it is likely safer for him to be at a hospice. You can see my struggle.

As we have achieved some "stability" in this new world, I have been struggling with how to spend my time. Don't get me wrong, helping Ryan around, driving everyone and getting his new diet prepped is a lot of work, but for "me" time - what should that be? Should I engage in some work things because it makes me feel strong? Should I get things done around the house while I can? Should I be spending every waking minute staring at Ryan and driving him crazy?

One thing I do know is that I feel that I have done a good job of "sharing" him with all of the people that visit and spend time with him and now I am worried that other than doing things for him around the house, I haven't had my time with him. So we are planning a dinner date tomorrow night to get some quality time with just us.

Talyn is doing well and asking lots of really hard questions as he tries to piece together what death is and what life might be like without daddy. He started play therapy again and seems much more open to the questions we all have for him when we check in, so that's an improvement from last time. But overall, kids really do see things much simpler than we do. For him, he feels comfortable associating people that die as rocks. Which I think is a fine analogy for now.

We continue to be grateful for this extra time we have as a family and of course every once in a while catch ourselves hoping that we will have much more. Then reality kicks in and we try and live in the moment. It's a hard balance to keep, but this time has given us that chance to breathe that we have been hoping for.

Wednesday, January 13, 2010

Parties, More Tears and Breaks of Sunshine

This past week has flown by. I am certainly still struggling with the news, but now have more "up" times than "down". The one question that keeps getting asked of me is "Do you feel strong?" and I am not feeling that way yet. I am moving in the right direction, but feel like my strength is still building. Proof of that is my body got the flu last night. I am in bed trying to rest it out and just made my way downstairs for some crackers and ginger ale.

Ryan is doing amazing. In the past week, his symptoms have remained the same. I almost worry about writing that since it might jinx it, but want to share the news. He is still on a waitlist for hospice, but we are hoping that he gets some more time at home first.

Mentally though he is even stronger than last week. One day after the news, he announced that he wanted to have a party to celebrate his life while he was still here. That alone, is amazing.

Our friends pulled together and made that happen for him in 48 hours! Friday night we had 60 close friends and family here to celebrate with him. We had a photographer to take photos so everyone would remember Ryan for who he is. And deep down, our hope is that we'll have this party ever year.

We had lots of family and friends fly in for the weekend and have been absorbed by love. But Monday we asked to have some time for just the three of us to spend together. I appreciate every morning that we wake up together and his body is warm and moving up and down from his breath.

Last week, our favorite photographer Michelle Wells came over to take some more amazing pictures for us. Check out her blog for some she posted

We also had Global over to the house yesterday and they showed a spot on Ryan last night. Even with what he's dealing with, he wants to share his story so that other people might feel better about their situations.

In the past 2 weeks, we've had lots of moments of absolute despair. But we've also been again blessed with some breaks of sunshine - Ryan and I have felt renewed love in our marriage and a connection that is so deep, friends and family have come to help us out where we need it and we have had some great moments as a family. Appreciate those around you and what you have - you never know what tomorrow might bring.

Thursday, January 7, 2010

Crying a River

Lots has happened since the last post and unfortuanetely it's not what we had hoped. January 2 Ryan continued to develop more weakness on his right side and they did the MRI right away. We got the results within a few hours and were devastated to learn that it was the tumour progression that was causing the new symptoms. The difference in the December 21 to January 2 MRI's was significant and the biggest issue is that it's moved to his brains stem.

He was discharged from the hospital and we went home to figure out how to cope with the news. Tuesday we spent most of the day at the Tom Baker Cancer Center. Ryan's doctor had tears in his eyes when he told us that there's nothing else they can do for him now. That he has fought am amazing fight against this tumour for the past 12 and a half years, but now that it's entered his brain stem things could progress quickly.

It's now Thursday morning and I can't even remember what we're doing in the next hour. Ryan has been assessed by Home Care and now is on a waitlist for a hospice. It will be up to him whether he takes the bed when one comes up, but the doctor is strongly recommending he does. He then told him that if in a week he improves and can walk out of the hospice, he can come and punch him out. Ryan of course said - you're on!

Ryan has a cane to help him around because walking is getting more difficult. Stairs are the hardest for him, but he continues on with such determination, I am stunned at his strength.

Over the last week, the news has come fast and hasn't given us the time to adjust. We have cried pounds of tears and I feel like it could probably make a river. I don't know what to hope for at this point. That Ryan's end is near and he doesn't have to suffer any more physical challenges, or that it is far and we have him here longer.

We appreciate all of your love and support - we will continue to need it!

Friday, January 1, 2010

We need a whole lot of strength please

We were at the ER for most of the day yesterday because ryan developed some new issues over the past couple of days. He started his CCNU chemo on Tuesday night and we were bracing for fatigue and nausea, but not anything else. Wednesday he had a nap and when he woke up, another quadrant of his vision was gone. He now doesn't have any vision in the right upper or lower quadrants. This of course devastated us as we grasped to come up with some solution other than tumour growth.

New Year's Eve morning, he woke up and felt off. He went to get dressed and fell right over on his side. He also noticed new weakness on the right side of his body. We emailed his doctors and even though all of them were on holidays, one responded right away asking me to take him to the ER. We spent most of the day there yesterday. They did a CT scan to assess the size of the tumour and luckily it looked the same. But then after other testing, they are fairly certain Ryan had a stroke.

He was admitted last night and will be here for several days so that they can run more tests. These are to try and confirm that it was a stroke and then find the cause. The tumor board will be using these findings to see if he can continue with ccnu or not or whether any other changes are needed to the plan.

His mom arrived last night and we also have friends who came from edmonton for a couple of days so they are home with Talyn now. Thank goodness!

We are both feeling pretty weak emotionally right now. Everytime we get some challenging news it is shocking right away and then we somehow find the strength to accept it and move on. This last few weeks though, the news keeps coming and we are finding it challenging to continue to stay strong.

What would be helpful to us is continuing to think positive thoughts for Ryan and sending us positive thoughts to help give us some strength. This is the hardest time we have had to deal with yet and we just hope that things slow down and give us a chance to catch our breath.