Still cancer free

Steven's scans yesterday came back all clear.  Hooray!   It has been a rather stressful week for me.  I had worked myself into some serious worry and while I could also find peace at times, I was so crazy that every little thing would send me over the edge again.  For instance, Steven hurt his good ankle one day--I got scared it was cancer.  He was limping around all week and if you've followed our story, you know that we found the cancer because he was limping.   He started limping with his hurt ankle, but then once that was better, he was limping because he had developed a blister with his prosthetic.  And then a few times in the week, I heard him give a minor little cough.   And so it went that by the time Friday came around,  I was a mess.

I tried all sorts of things to get over my craziness.  I tried to be extremely busy (but not at my own house).  That helped a little.  I quoted myself statistics and tried to stay positive.   I tried some relaxation techniques.  At one point I was doing some deep breathing and I had this flashback to my freshman year of college when I took a stress management class.  I almost got an "A- in the class until I begged my teacher to reconsider and give me an "A."    The memory made me feel guilty that I probably didn't serve the "A" afterall, since I was the most stressed out person I knew.

What finally helped me was prayer, fasting, going to the temple and listing to hymns.  I know that prayer has a power.  I don't know how much prayer will change the outcome--I feel like our days numbered and that even people of faith die of cancer.  But I was blessed with comfort that whatever happens, we will be able to handle it with God's help.

So by the time the scans came around, my extreme craziness had subsided.  The morning of scans, Steven pet the dog for over an hour.  For all her trouble, I noticed this week how everytime I pet her, my anxiety would almost immediately dissapear.  These are the moments I have to remember when I want to ship her off the humane society!

But anyway, as I said, the outcome was good this time around and now I can breath easy for a while longer and enjoy this summer without worrying about relapse (much).  Steven will have scans again in September and those will be his two year scans.  If everything looks, good, he will not have scans again for six months after that.  Two years is a major milestone for survival statistics, so it will be a big deal.

I took him out for a hamburger after his scans--it has become a tradition.  He said "Mom, when I do my final scans in 8 years from now, let's invite everyone we know to the restaurant for a hamburger party."  So, September of 2021--save the date folks!

Running with Angels

On Saturday, I made my 5K debut along with my sister, Anne, sister-in-law, Amy, my mom and Steven.  This race is called "Running with Angels" and honors lost babies and supports families who will someday face this trial.   It was such a great event--I really was just touched by all the love for the little ones who have made such a big impression on our lives.  

We took one picture (the bottom one) before the race, when everything was dry, but almost as soon as we started the run, the rain came pouring down.  We were thoroughly drenched by the end.   My mom walked with Steven and I kept thinking how sorry I felt for him--that he was cold and wet and couldn't run fast.   But he came cheerfully to the finish line (top left) and said as we were driving away,  "It is a good thing I have a prosthetic leg because I only have one leg that is cold!"   Ever the optimist!

It was fun to remember my angel baby, Daniel, but I couldn't help but feel that my dear family running with me and cheering us on have been my angels, too, to get me through these rough months and years.  They represent only a small part of my angelic family and friends who have truly carried us when we couldn't go on.  Where would I be without you all?

Six months

On Friday, it was six months since we lost our baby, Daniel.  I long for words to express how I feel and what I've learned and how far I have to go, but I don't have them.  I haven't shared pictures of Daniel on this blog; I've kept them on my private blogs.  None of the pictures we have capture him how I remember him or how I want to remember him,  but today I just felt like sharing an image or two of my angel baby. 

Grief is an interesting thing....I don't know that I really understand it.  It was so all-consuming at first and really, it sort of still is.  In a different way, though.  At first the tears would not stop.  As the months have passed, I've had to leave the comfort of my home and go out into real life and take care of my other kids.  I have had to explain to people who saw me pregnant but didn't know the circumstances where my baby is.   I see babies all the time--mostly they make me smile but sometimes I wish I had mine here too.   I really want to order a headstone for Daniel's grave, but words escape me.  It is such a small area in which to squeeze a heart full of sentiments.

So many people ask me how I am doing.  I don't know how to answer.  In some ways I am doing fine.  Thanks to my puppy and my kids, I get out of bed every morning, get going and do most of the important things.  When I seek it, I can find a great deal of comfort from my Savior.  Sometimes I feel too worn out to pray as deeply as I should.  After what I've been through, I am now a different person, I see things differently.  I am praying that these experiences will make me a better person--but I'm afraid I am very much a work in progress.  The grief has slowed me down considerably and my house is full of unfinished projects.  I feel like I have a better idea of how to help people who are suffering.  The only problem is that I am either too self focused or too depressed to reach out much.  I am hoping for better days and as I wait, I do what I can to fix some my problems. 

So that is my little update for now.   I was kind of hoping I had something insightful to say, but I guess I don't really.  I love my little family and while I know Daniel is still part of it, I wish he were here.





Steven had his moment in the spotlight today--maybe more than he wanted!  He won an essay contest that he entered along with his class and was one of four first place winners in the United States.  He won a laptop and a visit from Sharon Robinson, the daughter of Jackie Robinson.  His teacher also won a laptop and autographed copies of one of her books.   If you get a chance to watch the news, he will likely be featured tonight.  We were a little stunned by the cameras in our faces and attention, so if we sound a little dense, don't judge!

 

Sharon was just an amazing woman and it was such an honor to meet her and have her share a little bit of history with us.  Her father was an amazing man and she has carried on his legacy so well.  The essay contest was to share how you had overcome a barrier using some of the values that Jackie Robinson lived by.  Steven wrote about cancer (big surprise!) and told about how he needed courage and family to get through it. 

 

I saw his essay for the first time today and while I wish I could have helped him edit it, he did a great job.  I think the way he lives every day is even more of a testimony to the values he lives by--he's a great kid!  We are excited for him.

 

 

Pictures of the new leg

Here are some pictures of the new leg.  This first one ought to be side by side with his old leg to show you how cool it is without the loads of velcro straps.  This one has a fitted plastic thigh piece and then his prosthetic sock is folded over it.   He also got a piece of elastic over his heel--that seems to work well too.

The leg is made of carbon fiber.  Eric, the man who made his prosthetic, took us around his shop and showed us how it was done.  It is so cool--maybe I ought to do a whole post on it.  Steven had requested a thermometer in his leg and so Eric made a mold of this little keychain.   He had of course, made a mold of Steven's leg as well.   He put the carbon fiber over the foot mold and then he took the thermometer mold and adhered it to the leg in the place where he wanted it.  Then he puts resin over the carbon fiber.  He cut out the thermometer mold (had he used the actual thing, it would have melted).  Then he glued the actual thermometer in place.     Now, that is how I understood it, though I may be wrong--I am no expert here.

So yes, Steven also has a compass--and he just keeps brainstorming the gadget possibilities on future legs.

This leg seems to be a whole lot more straight than his old one.  Straight as in, his backwards foot isn't out to the one side like his other leg.  It has changed the way he walks, but I am hoping that with practice he will just keep getting stronger in the places where he is weak.

Life has been flying by these last few weeks.  Laura is up and going--the cast is itchy, but she can still get around just fine with it.   She only needs the cast for three weeks--and that is quickly approaching.  Today in church we figured out that we could color on it with crayons (twistables to be exact) and she was quite distracted all through sacrament meeting.  She didn't get to perform in her gymnastics showcase yesterday, but they gave her a medal anyway.  She was so proud:

 

 

We said goodbye to my youngest sister who left this week to serve an LDS mission in Spain.   We are going to really miss her!  Once Addie told me that Kirsten is her favorite person in the whole wide world.  Kirsten was six when I left on my mission!  Where has all the time gone?  



And then we have my cute doggie who loves the dirt and mud as much as my kids do (is it possible?)  We have a giant garden area in the middle of our backyard and the kids (and all their friends) think that the dirt is the best thing about our new house.   As soon as they start to dig, so does the dog.  Oh, and speaking of digging, there is a gopher going to town in my backyard as well.    Most of the tunnels you see are thanks to the kids though!

 



Steven does have his new leg now and it is awesome!  I can't believe I don't have a picture of it yet--I promise one soon!   He did get his wish to have a thermometer on it.  If you have to ask why, then you don't know Steven very well.  One of my cousins asked him and he looked at her like she was crazy and said, "Because it's cool!"    When we wondered about the temperature today, all we had to do was ask Steven--and it was about 60 degrees, in case you wonder too.  

So things are good.  I've been stressed, but mostly just a heap of little decisions and things that aren't that critical.  I sometimes wonder if it isn't still the grief or maybe some depression that rears up it's head in unexpected ways.   I have a way to go with my mental and emotional health--really.  I think I was doing better when Steven was undergoing treatment than I am now.  But I haven't lost hope and I get up and going everyday--even when it is hard.  Its harder to keep up with my laundry and dishes, but there are (usually) dishes to eat on and clothes to wear. 

Every day, spring inches a little closer and I feel this overwhelming sense of hope with each new green plant that makes its way out of the ground.   I have been so touched by the hope of the resurrection and eternal life.  It means more to me than ever now.   I love the longer days and I truly move forward every day because I know the next day will be a little brighter.   Bring on the spring!

The invalid

Tomorrow Laura will get her cast, in the meantime, she is trying the make the best of her video time.  (Her siblings are, too.)   I think she is ready to get up and move again.