Monday, January 15, 2018

A birthday, a check-up and the gift of a year


You may already know that the American Cancer Society is the "Official Sponsor of Birthdays."  This week, as we celebrated Steven's 16th birthday, I couldn't help but remember a time six years ago during his treatments when I wondered if he'd ever make it to this age. 



Along with the birthday celebrations this week, Steven also had his annual check up.  Scans are over, and now the docs just do a chest x-ray and some blood work.  Everything looked great--he is the picture of health.  A perfect birthday present, but more than that, it feels like another year and most likely a whole life.  Is there a better gift? 

As we get a little farther out from the experience, I find myself with answers that I couldn't have when we were in the trenches.  The puzzle is only sort of coming together, but this week it felt more clear than ever.  Here are some of the pieces:

Steven's pediatrician is retiring.  As we received the invitation to his retirement party this month, it struck me how lucky we were to have him as our doctor.  He found the cancer on our first appointment with him.  I have read many osteosarcoma blogs and talked to other moms--a first time diagnosis is not the norm.  I thank the Lord for Dr. Schmidt and his knowledge and wisdom and for landing us in his practice.

Because Dr. Schmidt referred us to the Oncology clinic at Primary Children's, and because Dr. Jones was on call, we were then assigned Dr. Jones for Steven's orthopedic surgeon.  We have long hailed Dr. Jones as our hero, but when we met with him this week, I started to ask him about how many of these surgeries he has done.  After some discussion, we learned that had Steven been referred to the other doctor in the practice, he would not have had the option to do rotationplasty because of the location of the cancer.  But Dr. Jones was willing and helpful and experienced.

I don't know what would have happened had we picked something other than rotationplasty.  But earlier this year, we were having a family home evening about prayer.  I asked the kids if they had ever had a prayer answered.  Steven told us a story he never had before.  He said that one night after he had prayed about what kind of surgery to have, he had a very clear dream that told him that he was to do the rotationplasty.  I hadn't known about his dream.  I did know that once he made up his mind, he wouldn't consider any other option or look back.  Even during the following year, when he couldn't walk and therapy was painful and I doubted our decision, he never did. 

And look at him now!  He is thriving and active and happy and has no problem with the fact that he is an amputee--in fact, it is part of him and he (usually) loves the distinction.  He loves the group of amputees that he goes to ski camp with every year and loves the people at Shriners where he gets the leg made.

Yesterday morning, as I was reading the Book of Mormon, I was reading about Christ in the Americas, healing the sick and lame.  The thought crossed my mind of how nice it would be to have Christ come and heal Steven's leg.  And then all these pieces to the story hit my mind at once, and I realized that Christ had a hand in Steven's recovery and healing.  He was born in a time of modern medicine and put in a place and time where he got the treatment he did.

And according to the doctors, he is essentially healed.  They have no reason to think that cancer could come back at this point.  They will continue checking him for a couple more years.  But the chances of him getting cancer now are so slim.  And that is a lovely feeling, let me tell you. 

Six years ago, I could not have foreseen a time when I could lay aside the anxiety and be so thrilled about the future.  At the time, I guarded my hopes for what Steven could do and become.  This feeling of confidence in the future is a new and welcome feeling.  At the same time, I try to make peace with the fact that not all families have such great outcomes.

I'm sorry this is so long.  I know--I don't blog for months or years at a time, and now it's too much. But so many of you have followed his story and don't get to see the great strides he has made through the years.  I wish I had some video of him walking and running, but I will post some pictures from the last year.  You can see that it has been a full year--one we will never forget. 

Here is Steven after he dropped off the blankets that he did with his project about a year ago.


For spring break, we went to Arizona with Rob's mom and went to the Grand Canyon.


This summer, we went to Europe to visit my parents and see some sights! This is in Switzerland.

The kids with my parents in the Alps.

Paris

A layover in New York--this is at the Statue of Liberty.

Steven with his band, the Weakest Link.

Steven earned his Eagle rank this year.





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

Sunday, December 25, 2016

Christmas past


The other day I was thinking about my girls and how excited they are for Christmas.  A flood of emotion swept over me as I considered the joyful holidays (and the hard ones) that Alisa and I shared together.  Sometimes I watch my girls together and I am transported to my childhood and to my relationship with my little sister.

We were little girls and it was the era of the Cabbage Patch dolls.  Every little girl wanted one--and no one more than Alisa and I.  But stores were sold out and so all the hoping guaranteed nothing.   We had no hope of Santa bringing them because Dad had been quite frank with us about how the Santa thing worked.

One day, a few weeks before Christmas, we made a hopeful discovery.   In the closet, under the stairs, we found two Cabbage Patch-shaped boxes wrapped in one layer of white tissue paper.  We could make out the words on the box.  We were ecstatic.   I don't know if we managed to hide the joy we had, knowing there were dolls for us.  If my parents didn't know we had found our Christmas present, it was because of the chaos of the season and four or five wild kids.  But it was a secret we shared in hopes and giggles, especially as we went to bed each night.

My aunt Laurie had worked the miracle--she worked at a store and had access to inventory before it went on the shelves.  I love my mom for getting us those dolls, but I know we owe it to my Aunt Laurie, and probably my grandma too, who seemed to fund those tight Christmases.

I don't remember that Christmas morning very vividly, but the hours and hours that Alisa and I played with those dolls are some of the happiest memories of my childhood.  Not all is perfect--my doll was cuter than hers and I sometimes rubbed it in.  But those dolls were real to us.  We took them to the dinner table, and bought them Christmas presents, and took their portraits (with a Christmas present of a future year).  Mine was Susie, olive skinned and brown hair.  Alisa's was Gaylinda, a redhead like Anne of Green Gables.  They were our children.  We had adoption certificates to prove it!

Christmas without my little sister is painful this year.  I have felt her absence deeply.  As we drove around yesterday, I put in the movie, Little Women, for my kids to watch.  I've seen that movie more times than I can count.  I have it practically memorized.  Alisa and I loved that movie and in some ways we lived it.

My very favorite scene of all is when they give Beth the piano.  It struck me as we watched it yesterday how Alisa tried to recreate that gift when she organized the piano gift when Daniel died.  I know it wasn't just Little Women that drove her to do such a thing, but the romance about gifting your sick sister with a beautiful piano was not lost on Alisa. I felt sure of that last night.


This morning as I wait to surprise my kids with my carefully thought out gifts, I think of my parents and how they must have been almost as excited as Alisa and I were about the Cabbage Patch dolls.  I think of Alisa and her excitement to reveal the piano.  And I think of Heavenly Father, who is the perfect gift giver.  I have no doubt that one of the greatest gifts he ever gave me was a little sister so close in age and so close to my heart.  And I thank Him for the even greater gift of His son, Jesus Christ, and his atonement that makes it possible for me to be with her forever someday.






Monday, June 27, 2016

Some pictures

My sisters helped me take some pictures last night and I mentioned I wanted to post some pictures showing Steven taller than me, so here we go.  I forget because I see him everyday how much he is growing, but then we'll see an old friend who is blown away by how much he's grown in the past few years.

After losing my sister and father-in-law, I've been keenly aware of how important it is to take pictures.  And then I learned another hard lesson--you need to back them up.  A month or so ago, our hard drive crashed and most of our pictures and videos were lost.  I mainly have anything I've ever put on a blog or printed off.  We still have some hope to recover them, but there is no guarantee it will happen.  So BACK UP YOUR PICTURES!  Just a little reminder.

Summer is going well here--nothing major to report.  My kids are growing up fast and every day flies by.  I continue to work on enjoying the moment.  








Thursday, May 19, 2016

Anniversary

I've started 20 blog posts in the past few months.  I've got a backlog of them: from Steven's new leg, to soccer videos, to wedding pictures and thoughts on that, to a picture of Steven taller than me, and even some thoughts on being five years out from Steven's diagnosis and surgery.  I feel like bragging about the many great things Steven is doing, and showing off his successes from my little blog.  I've had thoughts on my father-in-law's passing and the grief my kids seem destined to know from a young age.  My heart is really so full, I'm sorry I've been so silent.  There is so much good going on in our lives, we truly have so much to be grateful for.

But I will post today because it has been a year since Alisa passed away.   So much has happened in that time, it feels so unreal that it has only been a year, and yet it feels like a lifetime for how much I've missed her.

I have had so many moments where the only thing that feels right is to call her up and ask how things are going.  I've had day dreams (and actual dreams) of doing that--if I don't have exact conversations memorized, at least I know what she would say.   I seem to know how she would respond to a question or problem.

I'm not sure all of my blog readers know that her husband, Josh, got remarried in March.  His new wife is lovely and so much good will come of their marriage.  But there has been a lot of change as they start their new life together.  On the day of their wedding, I felt such polar feelings of happiness and loss.  I kept going back to the day Josh called to tell me he was dating her.  As he described her situation and how they met, I had a very distinct feeling that Alisa had a hand in picking Katie for Josh and her boys.   But even still, it has not been easy.  Alisa often spoke about how sadness and happiness could happen simultaneously, and this has been an example of that for me.

My sisters and Josh's mom have been helping pack up the house and today I just felt I needed to be there, to kind of say some last goodbyes to the places and things that are so full of memories.

I was boxing up some journals and scrapbooks and I took a peek.  It took me back to the Alisa I knew when we were little who would defend all animals and love all her friends.  I remembered the fun times she had in college and her faithful letters to Josh when he was on his mission.  I read some of the love notes from her kids and some of the love notes to her kids.  I found notes on her cancer research and letters from her adoring friends.

My favorite find was a little notebook full of ideas, I believe for a book she wanted to write.  It's a very loose compilation with ideas she's gathered from life.  One thought that struck me was under the subtitle "Cancer."  She wrote, "Your heart has to break first, in order for it to be opened."

It's hard for me to tell if my heart has been opened yet, but I know for sure it has been broken.

I miss Alisa every day.  I know I'm not alone.  Her grave today was covered in flowers and my phone has been lit up with texts from her friends expressing their love for her and their thoughts of me.   I very much look forward to the day I will see her again.  Until then, I hope I can live a life half so brilliant as hers was. The brightness of her life still shines into mine, and I know it will forever.

I love you Alisa!


Thursday, March 10, 2016

A beautiful life

Saturday morning we got a devastating call from Rob's mom:  his dad had passed away in the night.  They were in California, had spent a lovely week at Disneyland with Rob's brother and his family.  He hadn't complained of any health problems during the trip and had no known health problems so this came as a huge shock to all of us.

His passing has brought to my mind a wealth of memories shared with him. He has been such a huge part of holidays, birthdays, vacations, home projects, and really just our life.  He was a humble man with a very big heart.  Steven was named after him and as a little kid, he idolized his grandpa.  I hope that his biggest aspiration is to be as kind and good as his namesake.

I have so many pictures of him and my kids.  I keep thinking about Alisa's admonition to take more pictures.  I'm glad I have as many as I do.  I wish I could take more.  Here are a few that tell a little about him as a grandpa.

Here is one of my favorites: Steven and Grandpa on an evening hike at Yellowstone.
Grandpa loved Yellowstone as much as Steven and they went there together three times.  Steven has
spent some time this week planning another Yellowstone trip.

Grandpa was one of Steven's biggest cheerleaders--whether it was at a ball game
 or concert, and especially during his cancer fight.  

Laura and Grandpa this summer.  He gave hugs often and sometimes awkwardly,
but there was never a doubt about his love.

He rarely missed a birthday, and then only when he was out of town.

His last church assignment was at a church farm that provided vegetables to the Bishop's storehouse.
  He put his whole heart into his assignment as he did all his church service.

He was the kind of Grandpa to play with the kids.  He loved to play board games or
read them stories, or go on walks, anything as long as he was with his grandkids.

This picture isn't great, but I love that I have proof that he was a play-on-the-floor kind of grandpa.

Grandpa loved to hold the babies, and would scoop them up whenever he could.

He took lots of time off when we lived in Ohio to come visit us and get to know our kids.
 I love this one of him with Andrew.  

Here is Steven getting ready for a fishing trip with Grandpa.  Steven loves to fish but
 we don't, so he begs his grandparents to take him and they make time to do it.  

He's been at all our kids blessings and baptisms and priesthood ordinations.
Family was his great priority, and none of us doubted it.



My dad was gone the morning we lost little Daniel, and Steve rushed to the hospital to give me a
blessing and then went to our house to be with our kids as they woke up and break them the
news of his death.  I will never forget his sincere love and compassion at that time.



I've seen death slowly take my sister and now I'm watching Rob's family endure the shock of Steve's sudden death.  They have different challenges, but both have brought on intense feelings of loss, and also very deep feelings of peace.  I feel so sure there is life after death and that through Christ we will all be resurrected someday.  And while that certainly makes the loss bearable, I would give anything to be able to call him up one more time and tell him I love him.