Sunday, February 8, 2015

Ski camp

As if I needed one more reason to love Shriner's Hospital...

Last week, Steven was able to go to Shriner's UnLimbited camp at the Park City National Disability Center. Here is a link to a news story about the weekAnd this one at Deseret News. And another at Park Record with lots of good pictures of Steven. (He's in all black with some blue on his coat.)

He came home so excited that he had learned to ski.   He also just had a blast with the other kids that were at the camp.  Several of the kids were cancer survivors as well, and I could tell that he really just loved getting to know some kids that knew about some of the stuff he deals with.

I was nervous to send him off for the week, but seeing him so happy with his new skill and so excited about the friends he's met, I am really happy he got to go.

Here is a picture of him from the KSL story.  He's with Drew, who is also a rotationplasty kid

Thursday, February 5, 2015

Winning the cancer fight

It's been an extremely rough couple of weeks watching Alisa go through this awful cancer stuff.  There have been so many times when she just doesn't seem like quite herself--the pain and medication is just too much.  But even when she's a little crazy, I love to be around her because she is still there, only almost like she is behind some cloud.  It's hard to describe.

Yesterday, though, she called me and it was just like the old Alisa saying "Hey, what are you doing?"  It was just an absolute breath of fresh air.  When we talked, it was as if the past few weeks were just a dream in the past and she was all back.  I went up to the hospital and visited with her.  She was all herself, but there was a sadness that I haven't seen much in my very hopeful, fierce cancer-fighting sister.  As we talked, I felt like it was just dawning on her that she might not win this fight after all.

I can't describe how hard that is on so many levels.   There is the selfish part of me that realizes how lost I would be without her and what a gaping hole would be left in my heart.  But the real sadness comes from seeing her suffer.  It's hard to see her in so much pain, and so when I say suffer, I do include the physical part.  But even more than that, it is so hard to see how sad she is to think of leaving her family.  She is proving through every decision that she is willing to do whatever is in her power to stay alive.

I guess that is where we come to the hardest thing for me.   And it is something I've grappled with through all these recent trials in my life.  It is this powerless feeling in the face of death and disease.  That even with all the medical advances we've made, we are still human and we are subject to death.   I've talked before about how Steven's cancer really burst my "bad things only happen to others" bubble, but the more I go through, the more I see that our lives are in God's hands.  I won't say we are powerless to do anything, because a quick look at Alisa's cancer fight proves otherwise.  But ultimately, no matter how much we would love to live, we aren't immortal (yet ;)).  And that is really hard for me to comes to term with.

Really, the only way I can is to trust that God's hands are good and that His vision is perfect.  It's an easy phrase to write or say, but really trusting Him when things look so bleak is very different.  When I lost Daniel, at some point, or in waves, there was such a feeling of resignation to God's will.  Also a feeling that fighting something that had already happened was futile and that what was done was done.  Every emotion in between came along with that--anger, confusion, deep sadness, guilt, hope, love, comfort, peace--all of it.

I don't know the point of my post--certainly I'm not saying Alisa should be resigned to death.  I feel like her fighting spirit will be the thing that will save her, frankly, already has.  I guess I'm just saying that I wish that her will to live were enough to get her better.  Doesn't it only seem fair that those that fight the hardest should win?  I think so.

But I think that God's version of winning has little to do with surviving mortality.  And if we go by our understanding of His standards, then there is no doubt Alisa has already won.

This is me, Alisa and our brother, Jon.  The three of us were born within three years of each other.  We took this picture on Alisa's birthday and even though the light is doing weird things on my face, I just love it.

Friday, January 9, 2015

3 years post treatment

Getting scans near your birthday is a bit risky, but I scheduled Steven's for today without thinking.  Thankfully, they looked good, and we are thrilled.  Each one he passes, I just feel a bit more secure that the cancer is gone for good.  It's true and it's not true--I watched cancer sneak up on my little sister just when she was done with scans and done with worry.   But still, even if we are biding time, at the very least we have six more glorious months without cancer fear.

That is, cancer fear for Steven.  All week I've been a nervous wreck.  Alisa had scans also this week and learned that her cancer is growing despite the treatment she has been taking.  It is a devastating blow and the combination of scanxiety for both of them and bad news for her has been rough.  But nothing compared to what she is going through.

Yikes.  Cancer, I hate it.  For me it inspires fear like almost nothing else can.  And sometimes the fear is crippling. I think it is part of my challenge to go forward and overcome this fear and go forward with faith that things will somehow work out.  That is a whole lot easier to write than to do.

Sunday, January 4, 2015

Goodbye 2014

Christmas and the start of a new year always leave me reflecting on the old year.  I wonder if we really progressed.  Did we meet any goals?  Are we better off now than a year ago?   I haven't been updating to this blog much and so I decided to share some thoughts and things from the past year here.

We started off this year with a mini disaster.  It was our first Sunday with 9am church.  I was teaching that day and was distracted.  I put a pot of dry beans on the stove to pre-boil and soak them.  I never turned it off and went to church for three hours.  Longer, actually, because Steven had an interview with our bishop to get the Aaronic priesthood.  We came home to a house full of smoke.  Luckily, there was no fire, but he smoke damage gave us a run for our money.  It was months until the smell finally left (if it even has).  Overwhelming!

After devoting weekends to smoke remedy, I begged Rob to redo our basement bathroom.  He obliged and spent 4 months of Saturdays on the project.  Here are some before and after pictures.  It wasn't functional as a shower before the project, and we only had one bathtub/shower.  This one is in the basement.  I'm sure someday someone will wonder at the handicap accessibility in a basement bathroom, but it has been really nice for Steven, who sleeps in the basement.  It's made a huge difference and Rob learned a lot in the process (mainly that he should say no when I ask [tell] him to do a project and also not to buy an old house).

The rest of the year is harder to put my finger on.   So many good things happened, but hard things too.  To name a few, Steven got braces, my youngest brother got married, my youngest sister got home from her mission in Spain, Steven started Jr. high, Laura started first grade, I started my first year as a stay-at-home mom without any kids during the day.  Addie turned eight and was baptized.

One hard thing that has happened and is happening is that my sister, Alisa, has had her cancer come back and tried an out of state treatment and had relapses and all kinds of cancer problems and miracles.   But she is hanging in there and teaches me every day about moving forward despite trials (and because of trials.)  And I am learning all over again about hope.  

Among the noteworthy things, there have been lots of the normal stuff to fill up all the time in between:  homework, appointments, practices, school, scouts,  the occasional sibling fight, projects, yard work, dog walks, work, grocery shopping, meals, and the ever present house work.  Sometimes it's hard to find importance in these things that seem kind of tedious, but together they make up the year, and this year will be filled with stuff like that and together they will form our lives.  

And in the meantime, we are growing up too fast.  This year I want to work harder on enjoying the everyday and making more memorable moments.  The older my kids get, the more I realize just how good I had it when they were small.  And that makes me  think that someday I'll think I had it so good!  Why didn't I enjoy it more?  So here's to 2015 and joy!  I hope it for all us, I really do.

Sunday, November 23, 2014

A favorite Bible verse

My Aunt Kathy is kind of a marvel.  One of her many talents is that she always seems to know just what to say to lift you up.

A while back, she pointed me to a scripture that I hadn't noticed before.  Job 23:8-10, 17:

8 Behold, I go forward, but he is not there; and backward, but I cannot perceive him:
9 On the left hand, where he doth work, but I cannot behold him:he hideth himself on the right hand, that I cannot see him:
10 But he knoweth the way that I take: when he hath tried me,I shall come forth as gold.
17 Because I was not cut off before the darkness, neither hath he covered the darkness from my face.

I read chapter 23 in Job over and over a few months after I lost Daniel.  I know that I cannot compare myself to Job--for one, my trials are few compared to his, nor is my character so good as his.  But still, I found quite a bit of comfort in the book.

Six months or so following his death, I found myself kind of spiritually dead.  Right after he died, I was buoyed up by the spirit and strengthened so much from the comforter.  But as life went along, it was getting harder for me to take care of my family and I felt alone. (As a sidenote, at this point I went and saw a grief counselor.  She told me that people have the hardest time in the stage of grief that takes place between about 2-8 months after a loss.)

Verse 8 seemed to fit--I did try, but I felt like I couldn't find God, that I just didn't have the strength to look.  But then verse 10 is what I tried to focus on:  "He knoweth the way that I take."  That was it--maybe He was hard for me to find in my state of mind, but He knew where I was.   I took hold of that thought and it has pulled me through a very dark time.

It was later that I noticed verse 17.   In the previous verses he talks about being refined as gold and having his heart softened.  And he has those things because he had to go through that darkness--the Lord did not hide it from him.

I've got a long ways until I "come forth as gold."   I still wish that the darkness could be "hidden."  I wish I were better at seeing the hand of God.  But still, I trust that He is there for me.   Never far from my mind is the thought, "He knoweth the way that I take."  And I know that I am not a special exception--He loves all of us and knows our hearts.

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.