Sunday, August 17, 2014

A few pictures from this summer

At the aquarium--a shot of the back of his leg

The bridge at the aquarium again



At Lake Mary

Bear Lake




Sunday, June 29, 2014

Good scans

Sometimes I wonder if I should even update the blog with news of good scans.  You know I would if they were bad, right?  I often think about when Steven was first diagnosed with cancer.  I searched the internet for everything I could find about osteosarcoma, including blogs.  The only blogs I found were about kids who had lost their battle.  It was unnerving.  I promised myself that I would keep blogging, especially if Steven did well and survived.

It is hard to keep up a blog, and in the years since he finished treatment, I have gotten less and less faithful.  I've said before that in some ways, I just want to move on.   But I think about people searching the web, looking for hope after a recent diagnosis and that is why I keep it going, even if it is sporadic.

Having said that, Steven's scans looked good this week.  This was the first 6 month interval and it has been so nice to not have to worry so often.  This week Steven and Rob went to youth conference  and went river rafting.  They had a blast.  He came home oblivious that he had scans.  I also had a busy week and didn't think about them much.  Even the night before, I still hadn't been hit with that all too familiar scanxiety that I normally have.  I started to worry--what if something bad happens and I haven't been worried about it?  (Crazy, I know!)  But no matter how hard I tried to worry, I just couldn't.  Even the morning of, I ate a full breakfast and we headed over to the hospital.

I'm so glad they were good, and I feel like God spared me some worry this time.  We've had our share of worries about Alisa, whose cancer is slowly spreading.  She is facing some hard choices about treatment now.  We continue to hope and pray for her--she is a living miracle and I have a feeling that more miracles are around the corner for her.


Monday, June 23, 2014

Steven rides again

On Saturday, Steven, Andrew and I participated in the Huntsman 140, a bike ride to fund raise for the Huntsman Center.   We tagged along with my sister, Alisa, and her husband's awesome parents who have given so passionately to this cause.    Alisa's father-in-law has been riding with a handful of people from Reno, Nevada, to the Huntsman center in Salt Lake--over 660 miles.  His dedication made me feel like a bit of a poser.  We did the final mile of the ride.  Yes, only a mile!  In fact, we were the only people who did only a mile--the other 700 riders did at least 25, 50, 75, 140  and even 660 miles.   But even so, this was  a big thing for us, and here is why.

You must know that Steven has been riding bikes from a very young age.  He practically taught himself.  Our first home had a large unfinished basement and he rode bikes down there whenever he could.   Enter cancer--no more biking.  He had to lie low before his surgery to avoid breaking the bones (not to mention he felt terrible.)  Then the surgery changed everything and even once he was up and walking, riding a bike felt really difficult because he didn't have the range of motion in his new "knee" like he did in a real one.

We were told he would be able to ride a bike, but for all we tried, it felt really hard.  He isn't much of a quitter normally, but every time we tried the bike thing, he gave up in frustration.   Some friends we met through this cancer experience were kind enough to give us the right side of a crank shorter for a bike pedal (Garrison lost his left knee).   But we've had that for a few years and have put it on several bikes, still with no luck.

Last year at the Huntsman 140, I determined to do all I could to get Steven riding to be able to participate this year.   But the year went on, he lacked motivation, and I think I was just worried that he wouldn't be able to do it.  Somehow it seemed easier to live with the hope that he could than the knowledge that he couldn't.  So I didn't try.  (I know--awesome faith here :)).  This spring, I was looking at my Facebook feed one day and I saw that Tim was up on his bike.  (Tim is Steven's surgery "twin"--they had the same doctor and surgery within a week of each other.)   I started to hope that it was possible.   

I had already talked to Steven's prosthetist and therapist at Shriners, and both had been really supportive of getting Steven riding.  I had an appointment at Shriners set up and I decided to get a bike for Steven before then so I could bring it to the appointment and have them help us figure it all out.  We went out shopping for the bike.  Andrew was as excited as Steven.  I had never bought either of them a new bike.  I didn't buy one  for Drew yet because I was worried that Steven wouldn't be able to ride and I'd have an extra bike sitting around.  So we took it home and Andrew rode it around and Steven looked on longingly.   The next day I took it and all the parts I had to Shriners.  And then I left it there for them to modify.

A few weeks later at our next appointment, both Eric and Sonya, his prosthetist and therapist, helped get the bike adjusted and taught him how to use the gears and held up the bike to help him balance.  They added a pedal with a strap to keep his foot in.   After that, it didn't take long at all until he was off.  I couldn't help crying out of gratitude for all the help we'd had and out of joy that he would get to ride a bike.  And even better was his sheer excitement that he could ride a bike and that he had overcome this seemingly impossible thing.  

And that is why only one mile still seems like a very important mile to me.  He had only been riding for two weeks and yet he was up ahead of me the whole time (okay, that wasn't too hard to do), but still, he led the way.  And next year he will ride longer, I'm sure of that.  Now Andrew has a new bike, too, and seeing the two of them ride around the neighborhood is such a happy sight for me.  



Rich Linton in his Reno Riders jersey, Steven and Alisa in their survivor jersys--the rest of us in back.  


Tuesday, February 18, 2014

Three years ago today. . .

We were headed to California.  Steven had just had a biopsy of his leg and a confirmed diagnosis of osteosarcoma.  I had never felt such acute anxiety.  I practically hadn't slept or eaten in two days.

What a difference the years have made.  It is weird to look back at that experience and feel like a bit of an outsider, when it shaped us so much into who we are today.  I feel like I have forgotten so much, maybe on purpose.

Today I found out that my cousin's boy has leukemia.  I can't get him out of my mind.  When I told Steven, his face went white, he was horrified.   I may have mentioned that just as school was starting, a boy at Steven's school, in his grade, was diagnosed with osteosarcoma.  These instances are hitting too close to home, and while I should be some sort of big help, I feel like my hands are tied by the very thing that should make me the most helpful.

It's weird.  There is a reason I don't write much anymore--it's partly because I want to forget about cancer.  But even when I try, it is right there--hurting other people.  Still hurting me, really, because I still worry about it.  Sure, we live on and we don't talk about it much.  We hope and dream all the time about our futures, but for me there is always a dread in the back of my mind that it will come back.

I remember reading books in the hospital about parents of cancer patients.  One thing said that people move on from cancer in different ways--some become activists, others use their knowledge to support other families--I've seen these types of parents, it's amazing to me.  Maybe it is so amazing because somehow I've become the parent who slipped into the shadow and tries to forget about cancer.  I didn't mean to be that way, but I guess after I lost my baby, I just didn't have much in me left to give.  I still don't.

For years I've wanted to write a post about how to help people when they have cancer or some other big deal thing.  When the boy at Steven's school got diagnosed, I was determined to do it.  Now that my little cousin has cancer, I'm once again resolved.  Tonight I don't have it in me to go into detail, but I will say this--just do something.  Each action we take is a way to show love and support, and even if the person doesn't acknowledge your words or deed with a thank you note, it won't go unnoticed.   I could not have endured the past three years without the love and support of those around me.

Friday, December 27, 2013

Two years post treatment--officially--and Merry Christmas!

I don't post very often anymore, and I have been meaning to post for a week about Steven's most recent scans.  They looked great!  He went in the week before Christmas.  He's had a cough (possibly multiple coughs) since his last scans.   I can't deny I was worried about metastasis.  But I was very busy with Christmas preparations and school events and so I didn't have much time to worry.  Besides, Steven was adamant that everything would be fine.

He was right again, thank heavens!  The ECHO was good and so was the blood work as well as the scans. We felt so grateful and happy.  I wanted to shout it out to the world on social media, but something held me back.   The same week as Steven's scans, one bone cancer (Ewings sarcoma) boy got news of relapse and another Ewings patient was waiting on a lung biopsy result, which luckily turned out to not be cancer.   And with all that, a month or so ago, a little osteosarcoma patient who also had a rotationplasty, died of heart failure from her chemo.  And so I took our good news with a dose of reality.   I am so grateful for every day we have with Steven.  I hope with every ounce of my soul that it will be a lifetime of days.  But even good scans this time is no guarantee that he will live relapse free forever.  I wish I could just live like him--smothered in hope with no room for fear.

I try to have that kind of hope and I think it will be easier to go forward now that we have a six month break until his next scans.  For the next three years, he will get scans every six months.  When we hit the five year mark, he will go annually until he hits the 10 year mark.    We have a lot to look forward to in those months and years--we really are so blessed.


Thursday, November 14, 2013

Hair cuts

It is so crazy to me that of the 400 cases of osteosarcoma every year in the United States, one of them this year is a boy at Steven's school and in Steven's grade.  And from what I understand, his tumor is on the same bone and on the same leg as Steven's. They've never been in the same class, so Steven doesn't know him very well yet.  He's been in treatment for a few months and is getting his surgery this week if all goes well.

At the school, the sixth graders and several of the teachers and staff shaved their heads or donated hair to Locks of Love yesterday to show solidarity to this boy.   Steven wanted to be first in line--I think he really wants to do something to help him, and I haven't been the best at finding him an opportunity to follow through with that desire.  I was so grateful that the teachers and kids at school planned this support day at school.   Steven loved it! 



Addie has been growing her hair out for some time now.  This week she decided it was finally time for her to cut her hair and donate it to Locks of Love.  Once she decided to do it, she didn't hesitate.  On the way home, I said, "There are going to be a lot of people who are sad you cut your hair." 

She said, "Well someone who doesn't have hair will be very happy I cut it." 

14 inches to Locks of Love

Steven and Addie

Andrew finally succeeds in his photobombing efforts

Sunday, November 10, 2013

Some fall pictures

The kids--all grown up and off to Hogwarts

The boy who lived



A rare shot of Molly holding still

Pumpkin picking--a hard choice



Hatching a monarch--an exciting development.



Steven played soccer this fall and loved it!  He tried his hardest and got lucky with his team.  They were undefeated this fall.