Friday, May 19, 2017

A note to my nephew: one cancer survivor to another

It is hard to believe it's been two years since we lost Alisa.  Every May sunrise and flower seems to scream her name to me.  I miss her more than I can express.

Last year, about this time, my sister, Anne, was hard at work going through Alisa's things to help Josh get his house ready to sell.  She found a rough note Alisa had started for Steven on the day he finished treatment.  I don't know if she meant to do a blog post or write him a letter--we never saw a finished version.  But to have this come in the mail, felt like a message from heaven.   Steven gave me permission to share it with you.

Dear Steven,

Today you rang the bell.

Day of freedom.

Today I cry because I am so proud of you.  You have been so strong.  People ask us, "how could you do that?!  I don't know if I could have done that!"  You are amazing and yes we are.  But....what we know, they don't.  They are amazing, everyone has the spirit of survivor in them and they could handle bad things.  Maybe we show them what they could do--and it is a good reminder of the power we have over obstacles.

Steven, do you know "there are no bad days in survivorship?"  Well, maybe some.  But not many.  I have never.

A bad day?  Yeah, I remember what that is.  

To the roll call of life, we answer HERE!

What a blessing.

Loss?  We know it.  

And that is all.  I don't know if it was missing a page or what.   I wonder how she would have finished it.  But in a way I know because she lived it.  Despite all her losses, she answered "HERE!!" every day she had.  I've got to figure out how to do that too.

Alisa, I sure wish you were here still.  But until you are, thanks for living your life as you did--it is a constant inspiration to me.  You and Steven both remind me of the strength that lies within us.

Friday, January 13, 2017

It's official--5 years cancer free post treatment

I've been looking forward to such a blog title for a long time and here we are.  Yay!  I am happy that this was our outcome, grateful for all the years we've had with Steven and for the many more to come, and humbled when I think of other cancer friends who weren't so lucky.

Yesterday we had the appointments.  Steven didn't have a scan as normal, they just took an x-ray of his chest.  They do this because they are less worried about recurrence at this point and it reduces the amount of radiation he is exposed to.  So I don't know if I can officially call these scans, but his blood work was totally normal and his lungs were clear.  We have every reason to hope for Steven to live a long life, cancer free.

We will continue these check-ups annually until he is 19 or 20, which will be 10 years out from treatment.  Hopefully we will feel as peaceful about those future check ups as we did yesterday.  It was a good day.

And because I don't post so often, let me update you on Steven.  He's getting tall--taller than me.  He's grown 6 centimeters since his appointment last year.  He's active and happy and will be getting a learners permit to drive soon.  (Yikes!)  He love music-- he plays the piano and the tuba, piano being one of his main pursuits.  He loves to read.  He plays ultimate frisbee with the high school club and just started church basketball.  He recently did his Eagle Scout project, a blanket drive for his favorite charity, Shriner's hospital.  We are in the process of getting him a new leg, this time the foot is very different--we'll post some pictures when that's done.

So happy times for Steven and I can also say that I am doing well.  I have felt better emotionally in the last few months than I have in years.  I finally feel like I am coming out of some of the sadness and anxiety that have come along with the circumstances of recent years.  I'm not perfect by any means, and I will probably never quite go back to those happy care free years before cancer, but I also feel like I am strong enough to weather (almost) any storm life throws at me.  Especially because I know I have such great support from friends, family, neighbors and God.

Thank you, everyone, for cheering us on!

Some pictures of Steven from the past year:

Steven with his soccer team.
At Arches National Park.
At Mesa Verde National Park (this was the Balcony House.  I heard someone behind me who was nervous about climbing the ladder say, "If he can do it with one leg, so can I."  It tends to be a theme surrounding Steven.

Steven and Andrew at Yellowstone, Steven with his guidebook, ready to advise us with geyser info.

The kids at Grand Prismatic Spring in Yellowstone.

Steven got his cycling merit badge this year and has loved his bike.  Here they are with some cousins in Grand Teton National Park.
Steven did his Eagle Project this month and collected and made fleece blankets for patients at Shriners Hospital.  
This picture was taken Wednesday as we work on the new leg for Steven.  This is the foot--he is so excited