13 Years ago today....

I haven't posted in so long!  Today I talked to a mom whose son will have rotationplasty surgery in a few weeks.  It struck me that it was the anniversary of the day we discovered Steven's cancer 13 years ago.  I also haven't written much about Steven in a long time and wanted to reassure anyone who ever happens across this blog that he is doing well and living his best life.  He returned home from a mission in the Baltics and is now studying at BYU.  He continues to have a great attitude and doesn't seem to be afraid of cancer hindered by its effects.   

How I wish I could have seen this day 13 years ago when it felt like my world was falling apart.  That would have changed things for sure--to take away the fear and anxiety that gnawed away at me for so many years and even sometimes still creeps in.  But then would I have learned what I did?  

I don't know if I can express or even identify all the lessons I've learned.  One thing is for sure--God is there and He is good.  Even if things don't work out how you hope, there is light and goodness around the corner.  I miss my baby and my sister every day, but the hole in my heart with those losses are now filled with something else that I can't quite describe, but it is good.  

The latest on Steven

As graduation and big life changes are on the horizon for Steven, it seems only right that I should update you on the latest and possibly wrap up the cancer battling portion of this blog. 

In December, Steven went in for his annual exams and ready with missionary paperwork for the doctors to fill out for him to serve a full time mission for the Church of Jesus Christ of Latter-day Saints.  His doctors both felt like his health was good enough to be recommended without any medical limitations (short of possible maintenance to his prosthetic) and told him he could come see them one last time when he gets home in two years for a final exam that would end the ten years of screening and follow up.  This was such great news!

Steven couldn't send the papers in until the end of February, but in the meantime, life was good and happening for him as a senior.  He was having an epic year with friends and accomplishments.  He found out he made it into BYU and competed in the Sterling Scholar competition.  Here is a video showing what he called "the most epic moment of his life," with his church basketball team:

He practiced hard to audition for and then perform as a soloist at Skyline's concerto night.  That was a goal he had been working on for years and we were so proud of him for his accomplishment and so incredibly grateful to everyone who has had a hand in his success in music--his teachers, family, friends.  I often think of the gift of the piano that was given us by so many loving people at such a difficult time.  Music has been such a gift for him as well.  This felt like the intersection of so much hope and healing.   Looking back, we feel so lucky that the night was able to happen at the end of February before everything was cancelled and shut down.  Here is a link to that performance.  

The Sunday after concerto night, Steven's mission papers got submitted.  We waited eagerly to hear the news.  On March 10th, the email came that his call was ready.  We scrambled to clean up the house and bake cookies and let everyone know they could come over and watch him open his call.  We let everyone guess where they thought he would go.  I had been telling him for years that he would almost certainly serve state side because of his cancer.  Imagine our shock and surprise and his absolute delight when he read that he would be called to the Baltic Mission (Latvia, Lithuania, Estonia and Belarus) teaching in the Russian language!  He and his friends had formed a group of Russian Hardbass fans and bought themselves matching tracksuits.  So when he read "Russian," all "the Boyz" went crazy.  He was to report to the Provo Missionary Training Center on July 22nd.  

The amount of excitement this created for him has been palpable.  He has started studying Russian in his free time and learns everything he can get his hands on about the countries and people he will be serving.

But oh how that feels like a lifetime ago!  How would we have known that our little call opening party would be the last big gathering we would have in....who knows?  We would never have anticipated watching so many friends and family members serving missions all over the world being flown home for the pandemic.  It seems crazy to think of how naive we were when things would unfold in the days and weeks and make the future seem so uncertain.

And that is where we are now--like all of you, facing an uncertain future.  School has been changed to at-home learning.  We worship every Sunday in our home now--and it has been that way since the week of his call.  His graduation will likely be cancelled or postponed.  The MTC experience could very well take place here at home.  He has a few more days to decide if he will try to go as planned or wait a year.  He feels strongly that he wants to serve now, but what that will look like, we don't know.

Uncertainty is one thing we have dealt with, so it should be familiar.  I think back to when Steven was first diagnosed with cancer and I often wondered if he would survive to see his high school graduation or if he would even be able to serve a mission.   As I remember that, I can only feel grateful that we have good health and we have each other.   I spent so much of my emotional energy worrying about his future and now that feels silly seeing how well things have turned out.  And I am faced again with more uncertainly--for all of us--for the world. 

I try to remember the lessons I've learned about the fruitlessness of worry, but it is difficult.  There are so many things we have no control over, I am trying to come to peace with that and remember the most important lesson I learned from our cancer lessons and that is to be grateful and appreciate the now.  Also, how important kindness is to get through hard times.  

Thank you to all of you who have show kindness to us through the past almost 10 years of his cancer battle.  And thank you for showing kindness to all those around you now.  It is the way through, I'm sure of it.  

Another year come and gone...

And all is well.  I don't think of this blog much, which is a good thing.  Life is going along swimmingly for Steven.   His annual check up turned out well, although this year has given us a taste of how hard it is to get questionable results and to have to wait to see how things turn out.  It's a long story, but the end is that everything looks great for Steven.  Sometimes doctors are very careful (rightfully so) and sometimes you realize that you're still susceptible to anxiety--it can come in a flash.

Thankfully, our anxieties about cancer were in vain and we have a healthy young man to watch in amazement.  He just got back from his Unlimbited Ski camp where he spent the week skiing with amputee friends and loving every minute of it (except saying goodbye).  He is now 17 and this year has brought him his first job, first date, and his driver's license.  He has a rigorous line up of AP classes and is one of our ward organists.  He is a fun kid to have around and inspires us all with his dedication to use his time well.   I can't express how grateful we are to have him around.

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.

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.

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

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.