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In the life sketch  I wrote for Alisa's funeral, I mentioned that she was a huge help to our family when Steven first got diagnosed with cancer.  I may have also posted some of these stories, but as I was talking to some of my cousins at the funeral, it seemed they hadn't heard them, and so I thought I'd better write it out all together. Steven was diagnosed with bone cancer on February 16,  2011.  He had been limping and one evening, I noticed his knee was swollen.  The next morning I made an appointment with the pediatrician and picked Steven up from school.  I never in a million years expected to hear he had cancer.  An xray revealed a bone tumor and the doctor broke the news to me gently.  I sat in the waiting room while the office set up appointments for us at the children's hospital.  I was stunned and at this point didn't realize it was cancer.  I did the only thing I could think of, I texted Alisa.  "Steven has a bone tumor....

I wrote this back in January and am going to post it as I wrote it then.  Since then, I feel like I have things to add, plus it needs to be edited, but I don't have the energy for that right now, so you get it as is.  If any of you have insights from your life, I'd love to hear about them. January 16, 2015 I was able to spend the evening with Alisa last night. She called me and asked if I would come and help her plan her funeral. I was honored and heartbroken and anxious to help, all these things. You can imagine the thoughts running through my mind. We laughed and cried that night.  I look like I've got a decade of trouble on my mind and she is as gorgeous as ever, even as we talked about life going on after her death.   But this morning I want to write about our conversation about grief. She is so worried about the pain that her death would cause to her family, her boys and Josh especially, but for everyone. We talked about grief a little and she asked me to w...

I'm sure most people who look at this blog know that my little sister, Alisa, passed away this week.   She was suffering so much that in there was a bit of relief mixed in with a deep sadness to say goodbye.   I struggle with the question of why she had to get cancer at all.  And why couldn't she have been cured of it? Watching her slip away, I felt like I was facing my worst fear for my own child and in one of my very favorite people.   The past days and weeks have been difficult, but I think the hardest part is ahead of me.  Holidays and family events and most of all the every day when I feel like calling her and chatting about whatever.  She has been a big part of my life and I will miss her dearly. I was asked to give part of her life sketch at her funeral.  Many of you were there, but I'm posting it here for those of you who couldn't make it.  She was a remarkable person and these few words don't even begin to do her great life justice. ...

Mother's day can be hard for people and for so many reasons.  Today was one of those hard ones for me, because I couldn't get my sister, Alisa, off my mind. I know I haven't been updating much here on my blog lately.  I've been distracted and besides, she updates hers  fairly regularly.  If you have followed her story, you know that since January, things have not been easy for her.  Her cancer is back in force.  Right now she's struggling with the decision to go on hospice. It's been a rough time for me.  She is such a huge part of my life--as she was born 17 months after me, I have no memory of life without her.  And most childhood memories include her.  And we've talked on the phone almost every day since we started having kids.  She coached me through Steven's cancer.  I owe so much of who I am to her and her influence. I have been so touched by all the people who have reached out to help her and to help me.  Yesterday I sen...

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 week .  And 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

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 t...

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 i...