Tuesday, December 25, 2012

Merry Christmas!

I'm about to go to bed on Christmas night and I'm feeling good that got through the day and my kids are no worse for wear. I have had a very reflective month and have enjoyed the music of the season. But shopping and baking and all those other motherly Christmas responsibilities have had no draw. Christmas is magical, but I was afraid that without me working my mommy magic, my kids would be disappointed.

I'm happy to report that Christmas came all the same around here and thanks to many people like grandmas and Rob and neighbors and doorbell ditchers and friends and aunties, the magic was here. My big plans for the Christmas surprise I mentioned in my last post didn't work out. I wanted to give my kids a puppy. They had to settle with a stuffed animal and a coupon instead. You should have seen how excited they were about that! I can only imagine how a real life Christmas morning dog would have animated them! The search continues, but I sure wish I had that dog today. Despite my thwarted plans, as I said good night to Steven, he told me it was the very best Christmas ever.

I am so torn about how I feel about this Christmas. I still feel very sad about Daniel and really missed him today especially. But my kids are contagiously happy that I find myself happy one minute then sad another and then happy and sad at the same time. I have seen that so much in the last few years with all we've gone through--even in the sad times, happy things shine through.

I have a lot on my mind but putting it all into words is too taxing, so forgive me for saying good night. Forgive me for not sending Christmas cards or bringing you treats or sending you packages. Thank you for all of you who have made this Christmas so wonderful--we have surely felt your love.

I didn't do much for people for Christmas, but I did do something for myself. I formatted and printed this blog into a book. I finished most of it before Daniel was born. It cost a pretty penny to print, so I decided against printing copies for our parents. But it did come with a free ebook so I published it for the iPad and sent my parents a link. (I know--I'm cheap like that!) If there is anyone else out there with an iPad who wants a copy, here is a link if you would like to download it.

Merry Christmas everyone! May the peace of the season fill your hearts and homes.

Friday, December 14, 2012

Still cancer free

Today Steven had his one year exam/scans/labs/Dr. appointments, and everything looked great. Both Dr. Jones (his orthopedic surgeon) and Dr. Wright (his oncologist) thought he looked amazing. Dr. Jones was super impressed with Steven's Xrays--his leg has healed beautifully from the break last year about this time. We saw Dr. Jones before we went to the oncology clinic and he told us that Steven's chest CT was clear. That was a huge relief and we knew that by about 11am, so we were able to relax and go to lunch before Steven's clinic appointment. Steven was just thrilled and became his usual happy and enthusiastic self. After his appointment with Dr. Jones, he went into the waiting room and announced his good news to the friends we had made while waiting. I really can't express just how grateful I am. I've been going over in my mind how I would be able to handle bad news right now and I couldn't quite envision a good scenario. Thankfully that was a fruitless exercise! Hooray for good scans!

Sunday, December 9, 2012

A long status update that really is only the tip of the iceberg...

I have been feeling like I should post something, but I can't believe how hard that is for me to do right now. It seems like doing much of anything is hard these days, let alone spilling my guts to the public on my blog. While lenghty, this is still a very vague report of some of the things I've been feeling lately:

I have certainly been feeling depressed--or is it just the grief? I don't know if there is a difference, but everything I do is slow and difficult. The other day I told Laura she had to wait until I took a shower to watch a TV show. After I got the kids off to school, I crawled back into bed. Laura kept pestering me to get up and take a shower (so she could watch her show) and so finally I did. I thank Heavenly Father every day for these kids I have--I love them so much and also, without them I might be a permanent fixture in bed!

I've been feeling very loved. So many people have done so much for us. I have a stack of thank you cards by my bed and everyday I tell myself "this is the day to start writing those..." but somehow they are still blank. Maybe tonight. I still can't get over the beautiful piano in my living room. Wow. And then there are little things that people say and do that remind me of the outpouring of love and support from everyone around me.

I have a bit of anxiety and I suspect it will get worse throughout the week. I wonder if I would feel it more now if I weren't so numb. On Friday Steven will have his one year full exam and scans. We scheduled them a month late because we were supposed to be busy in November...sigh. Anyway, now I feel like all my happiness rests on a positive scan outcome. I spend a lot of time in my mind trying to convince myself otherwise. I am relearning hope and faith and trust in God. As hard as it is for me to accept, it boils down to this--Steven will live as long as he is supposed to. I just hope and pray that he supposed to live for a very long time.

I haven't been much in the mood for Christmas--I think it is just that I don't feel like celebrating much right now. Shopping, decorating, holiday baking--those don't sound a bit fun. However, I am slightly obsessed with a certain Christmas present I am hunting down. I'll keep you posted. When I can't get out of bed, I pull out the handy IPad and search.

And along with it all, I am missing little Daniel. I don't need to hold his teddy bear to be able to sleep anymore, and I don't cry every time I think about him now. But I sure still wish he were around and I had a room full of baby stuff and someone to wake me up at night and warm little bundle to cuddle. I often feel purposeless. My arms still ache sometimes. Again, glad that my other kids demand a little bit from me still.

I wish I could end with something insightful, or at least hopeful. I guess I could tell you how much I hope I can crawl out of this difficult place. I hope that Steven has good scans. I am hoping that my sister, Alisa,gets into the trial she wants. So, lots of hoping going on over here! (Is that a hopeful enough conclusion? I guess "hoping" isn't really the same as "hopeful" but whatever...I better stop!)

Sunday, November 25, 2012

Thankful

The last few weeks have been so emotional for me, and frankly a lot of those feelings are sad ones. But the sadness is often all mixed up with overwhelming love and gratitude. So many people have reached out to us--from our dearest friends and family to people we hardly know. Each card, message, comment, phone call, meal, and gift just means the world to me. Each reminds me that we are not alone. And while I have so many things to be grateful for this Thanksgiving, I think I must say I am most thankful for the people in my life and for all you do for my little family. Thank you!

Sunday, November 11, 2012

Snow

My sisters and I spent hours looking for the perfect white outfit and blanket to dress Daniel in for his burial. We finally found just the right thing, but it didn't compare to the gentle white blanket that God covered his grave and the whole valley with this weekend. Everytime I looked out the window at the falling snow, I felt like the heavens were crying with me. And part of me was hoping it wouldn't stop so I could just be swallowed up in it too.

I had Rob drive me to the cemetery this afternoon--I needed a picture to remember this blanket of white on my baby's grave.

Tuesday, November 6, 2012

My angel baby

I wish I had different news to report, but this is my reality and so I have to tell you about my broken heart tonight.

On Saturday morning, I delivered a beautiful baby boy, but he was stillborn. We named him Daniel Robert. He weighed 7 lbs 10 oz and was 19.5 inches long. I have never known such sadness in all my life. What I would give to be taking care of him and to tell him over and over how much I love him.

So many people want details and they are painful to relate. I hope that if I can share some here, then I will have to explain it to less people in the future. Don't take that to mean I don't want to talk about it, because I do. But the circumstances are hard to tell over and over again.

On Tuesday, I had my 38 week doctor's appointment and all was well. My entire pregnancy has gone so well--hardly a complication in sight. We had a busy week with Halloween and kids home from school Friday and then I've been working as hard as I can to get ready for my baby's arrival. Friday night as I was going to bed, I wondered to myself if I had felt him kicking lately. I was a little worried but, I was tired and I went to sleep wondering. When I woke up around 3:30 am, I was suddenly panicked that I hadn't felt kicking. I did all I could to wake him up and when I couldn't, I woke up Rob and made him take me to the hospital to see if we could find a heartbeat.

We left our kids sleeping at home and I arrived around 4:30 am. After checking in, the nurse used the doppler to listen for the heartbeat. She wasn't finding anything. I have experienced this before with a miscarriage and I knew right away that he was gone. I started to cry--wail really. I was hoping beyond hope that there was some mistake, and I waited for the doctor to confirm it with the ultrasound. But I knew and my heart was breaking. How could something like this happen? How long had he been gone? How much suffering can one heart take?

I had eaten a little cereal and juice to try to get movement and so we had to wait to perform the C-section until my stomach was empty. It felt like a long wait, but in some ways I didn't want to lose his precious little body--denial felt easier with him inside me. Rob's dad came and gave me a blessing which was a huge comfort. He then went to our house to be with our kids as they woke up. As we waited we cried and prayed and talked about names. How could I be so unprepared to not even have a name? The nursing staff was amazing and were a true comfort to me throughout. My doctor was out of the state and so his partner took care of me--she was excellent too. The surgery went well, but I was worried the whole time. What would he look like? Could they tell why he died? The hardest thing was the silence. I've never had a vaginal delivery, but with my other C-sections, I can feel the baby come out and then shortly after they cry and that is the most magical moment there is. This time there was silence. I think seeing his lifeless body was the reality moment for Rob. I couldn't see the baby, but Rob could and Rob was crying. Heartbreak. I held little Daniel for the first time there as they sewed me up. He was darling, but his little body was staring to deteriorate. They think he had been gone for a day or maybe even two. There was no sign of what went wrong.

In recovery, I got to hold him even more. My mom and sisters came. The nurse helped dress him in nice clothes that my sisters had brought. A lovely organization called "Now I Lay Me Down to Sleep" came and took pictures. I wanted to hold him but mostly I wished he were alive. I wanted him to know how much I love him.


 

Our kids took it hard. I have long believed that Steven had prayed this little baby into existence--he wanted a little baby in the family so badly. When they came to see him, they cried. Addie didn't want to see him, but the others did and Andrew even wanted to hold him.

That night as my mom was putting Steven to bed, he said to her, "I guess my family just isn't very lucky."

They let us keep Daniel's body as long as we wanted it and so we kept it throughout that day. I had my brothers and sisters, our kids and both of our parents come and say a prayer with us in the hospital that first night while we still had little Daniel's body. My dad gave me a sweet blessing and then we all said goodbye. It was time for me to send little Daniel to the hospital morgue but I couldn't do it. I kept him for a few more hours and then finally I said goodbye. I told him about all the things I had hoped for him and about all the people who loved him. And I kissed his soft skin and thought I would die of a broken heart.

The next days were too quiet. It all felt so wrong. I did okay when I had visitors. But when they left there was the silence again. And the empty arms. I could only sleep if I held a little teddy bear that some friends had brought. I was discharged on Monday morning, but I didn't want to leave. The nurses had told me that they wouldn't send his body to the mortuary until I left. I wanted to be in the same place as my little boy. It felt like another goodbye. But all the time I needed my kids. I needed to hold them and help them and just be with them.

 And so I went and when I got home there was a beautiful piano with a big red bow waiting in my living room. I felt like Beth in Little Women when she is given a piano--absolutely overwhelmed with emotion. My family had organized a group gift from friends and family for Steven and for our whole family. Unbelievable.

 

And now when my heart feels like it can't take the sadness, I go play the piano and I am calmed. The sadness is still so close to the surface.

Laura asks questions like, "When will Daniel come alive again?" and "Is there another baby in your tummy?" I can cry at the drop of a hat. We are still making arrangements for a graveside service and burial. I still need to hold the teddy bear sometimes. This is so new that it is hard to make sense of why. The grief is so palpable sometimes. I will be going along and it will rise up in my throat and choke me. But through it all, I do know one thing. I know that I will see my little Daniel again someday. I know that our family has been sealed together forever and that we will be together again when this life is over. I know that Jesus is taking care of him on the other side. I think that he just needed to come and receive a body because his spirit was so perfect. He has already touched me and changed me forever. I know I will be a better person because he is a part of my life.

I would so much rather be changing diapers and missing sleep to feed a baby than to deal with the grief that this has brought. I would rather be picking out a crib than a burial plot. I don't understand why this has happened to us. But one thing is very clear and that is that we have a lot of people who love us. Steven thinks that we aren't very lucky and maybe there is truth there. But we have the most amazing friends and family in the whole world. We have the gospel and we know what happens when we die. And now we have an angel baby to watch over us. I know this is a long post and very sad. I'm sorry. I don't know how much I will feel like writing about this in the future, so you get it all at once. I suspect that this sadness will take a very long time to go away. So many people have done so much for us. I have so many emails to respond to, but when I try, I just can't. It isn't because I don't appreciate every word of encouragement you send my way, I just don't have the energy. The first lesson that I have learned from this is that life is so fragile and children are so precious. Please tell your kids you love them and hold them a little closer tonight when you think of little Daniel.






Wednesday, October 31, 2012

Cyborg

Steven has been on the lookout for amputee themed costumes ever since he decided to have his leg amputated. Here is what he came up with this year--every time we took a picture, he had to pose with a serious face. I mean, cyborgs don't smile, right?

He is doing really well. One new development is that his hearing has deteriorated in the last year to the point where the audiologists are recommending hearing aids for him. I have noticed a change, but the thing that has concerned me the most is his speech. I have had his speech evaluated and they told me to first test his hearing, and so I moved up his hearing test (scans and exams are all scheduled for December) and have been working to get that done before the baby comes.

Steven isn't too excited about the prospect, but I think he is hoping it will help him. His main concern is that people will stare at him even more. One of his regrets is that he didn't have them for his cyborg costume today. He will get them next week and so we will see how that goes.

And yes, it won't be long until we are a family of seven! It is almost too much for me to wrap my mind around. I know things will get crazy around here (oh wait, they already are!) but I am so excited to hold a new little baby. The kids can't wait either. We are in for a wild time the next few months! Hopefully I'll get a minute to keep you posted when the little brother arrives.

Monday, October 8, 2012

One year ago today...

...we left the hospital, finished with Steven's chemotherapy! I felt scared, and happy, and relieved. A year has gone by and I can't even imagine going back to that place. We have come so far. Steven is doing so well and, in many ways, I've put the cancer and the fear behind me. When I am feeling weak though, fear sometimes finds its way in. But mostly, I have moved on.
Of course, even without the cancer variable, there is still so much to worry about. Steven's walking and talking and hearing are the biggies. But even when those concerns weigh me down, I think about Steven who is very happy with life. He's not one bit worried about that kind of stuff. He excitedly told us at dinner how they've switched from soccer to football at recess. His leg doesn't hold him back from trying anything he can. It is hard to believe when I see him now that he took his first real steps without crutches only in March of this year. Since the day he left the hospital a year ago, he has had some hard times--a broken femur and another surgery. Now he has even taken his first running steps--it is amazing. He still has a long way to go. I've been wanting to share a short video we made for my family's film festival this year. Steven has made so much progress since he got his first prosthetic leg in September of last year until now. One thing that is hard to capture is his enthusiasm and perseverance. He is a great kid and we are so proud of all he's accomplished.



Tuesday, September 18, 2012

Curesearch video

Here is a video that another cancer family made for CureSearch this year. You'll see Steven in it--they filmed it in the spring. If you are planning on joining our virtual team, now's the time. We are just a week and a half away from the walk.

Wednesday, September 5, 2012

Team Steven

One of the highlights of 2011 for me was doing the CureSearch walk with Steven. We were surrounded by lots of people who came out to support us and it was just an amazing feeling. I was so looking forward to walking again this year, but kept putting off registering a team and getting the ball rolling. Then it turned out that Andrew is going to be baptized that day--at the very same time, and there were no good alternative days we can do the baptism.

(Doesn't Andrew look thrilled to be there?) Which reminds me, Steven is really bummed we can't do the walk this year. He was really looking forward to actually walking this year!

In my attempt to do a little something, I have set up a team for Steven, although we will only be there virtually. We invite any of you to join the team--you can just donate or you are welcome to go to the walk. It is on September 29th at 9am and will be at Sugarhouse park this year. We plan to walk every year in the future, so for those of you who wanted to be there--let's mark our calendars for next year.

Here is the link to my team page. I am having a hard time personalizing my page for some reason, but will try again on a luckier night.

Wednesday, August 29, 2012

And the obligatory first day of school picture. What a difference from last year--last year he went without hair, an immune system, enough red blood cells or a leg. This year he had all of it and all the confidence that comes along with overcoming hard things. Go Steven!

Sunday, August 26, 2012

Goodbye summer

Where has the summer gone? Tomorrow my boys start school and I can't believe that our lazy summer days will be over. We've had a lovely summer with the perfect amount of down time and fun time. We have seen so many old friends and made new ones, too. In our spare moments, the house has kept us busy (of course, that won't change anytime soon!) We've spent lots of time with family and have loved every minute. And then there were the Olympics if we ever got bored . . .This has certainly been a summer to remember.

As I have gone through my photos, I realize that I haven't taken as many pictures as I should have. It's kind of like I haven't blogged as much as I should have (or cleaned as much as I should have... or really "anything" as much as I should have, except maybe slept). But here are a few. One of the kids favorite things all summer were swimming lessons and while I have plenty of video....I guess I didn't take still shots. Steven rocked at swimming lessons and was beating his class in some of the strokes.

You'll see I have several photos of Steven with other amputees. Meeting these other amputees has been a highlight for Steven this summer--for sure an inspiration. We cheered so hard for Oscar Pistorius, the bilateral amputee that ran in the Olympics. That was our favorite Olympic moment.

I think the amputee thing has been a huge part of our summer, mostly because Steven more than ever is finding himself able to do almost anything he wants. For the most part, he has gone forward all summer without letting his leg situation hold him back. But every once in a while he is reminded that he has limitations.

One of those moments came this summer at the swimming pool. He has loved swimming all summer--the water puts him as an equal to the rest of us. Once we went to a pool with a high dive. He was so excited to try it out. First he hopped down the diving board of the low dive and jumped right in. Then he slowly climed the stairs of the high dive and crawled out to the end. He didn't quite dare stand up, but scooted himself off the end. After he went in, the lifeguard came and asked him not to go off the high dive anymore because it made him nervous. Poor Steven was devastated. Just not a fan of anyone telling him what he can and can't do.

We haven't met all our goals this summer. One was to get Steven up on a bike. And because we haven't done that yet, I'm not really counting the start of school as the end of summer. It's not officially over until September 22nd, right? So stay tuned for even more fun--even school won't hold us back from packing some in!

P.S. If you double click on the slideshow, it will take you to Picasa where I have captions that explain the pictures.

Tuesday, August 14, 2012

Good scans

I am happy to report that all went well at Steven's scans today. He is looking good and I am feeling very relieved. I feel like he has been given at least a three month guarentee on life or at least three months to not worry too much. Steven was just so happy when he heard the results--he has been the picture of cheerfulness all evening. We have been having a fun summer and I have some pictures I need to post soon. Things are good.

Friday, July 27, 2012

Make-A-Wish Ducky Derby

As you've seen from our last posts, Steven's wish was everything he could have hoped for and more. Because we feel so grateful and know how helpful Make-A-Wish is to families and kids like ours, we strongly support this great foundation. Having said that, Make-A-Wish Utah is having their 24th annual Ducky Derby.

On August 25th, 2012 thousands of duckies will race around the lazy river at The Lindon Aquatics Center in hopes of becoming the lucky duck that wins the grand prize, a camp trailer valued at $17,800 courtesy of Sierra RV, Sunset Utah.

With your help, Make-A-Wish Utah looks forward to many more years of granting wishes for Utah children with life-threatening medical conditions. To support the event, go to my donation page and adopt a ducky or more here.

Ducky purchase deadline is August 24, 2012 at 12:00PM. If you have any questions, let me know.

Monday, July 9, 2012

Star raising

On Saturday, Make-A-Wish hosted a star raising party for Steven. He got to decorate a star to hang in their beautiful building and give his guests a recap of our trip. Everything was perfect--it was a great way to end such a lovely experience. Last night before he went to bed, Steven was getting sad that it was all over. He was reading his Hawaii travel books again and plotting ways to get there again as soon as possible. There is no question that Hawaii will always hold some of his best memories.

Here are a few pictures from Saturday night.

This is the front of his star. On the back, he had his brother and some cousins sign their names and wrote "cancer" and then crossed it out.

This is him raising the star. As he hung it, they played "When you wish upon a star." So sweet.

Here we are with Steven's wish granters. What amazing people! I hated for the party to end and say goodbye. Thank you Gloria and Tiffany and Make-A-Wish!

Thursday, June 21, 2012

Dream trip

We're back! The kids and I woke up at 10:30 this morning and I'm still wearing the mumu I bought in Hawaii. As Rob brought all of our suitcases into my mom's house yesterday, I thought about how much work it would be to unpack them, but then I thought about how every belonging I own is currently packed up. Talk about overwhelming! No wonder I was reluctant to get back on that airplane and face my life!

I have been so bad at blogging, and I apologize. These weeks have been filled to the brim with painting, packing, cleaning, organizing, trip preparations, end of school year fun and just general life stuff. We have moved out of our rental, moved our things into the living room of our new house and are currently waiting for the wood floors of the bedrooms to be ready so we can move things in. In the meantime, we have been living out of suitcases at my sister's house, in Hawaii and now at my mom's.

But wait, Hawaii!? Last week we were treated to Steven's dream vacation thanks to the Make-A-Wish foundation. They exceeded all his expectations and put us up in a beautiful resort on the big island. He got to explore a volcano and snorkle and swim with dolphins and see lots of sea turtles all over the beaches. On the last night of the trip, he and I went on a boat ride around the resort (the resort had a tram and gondola system to get around the grounds) and then went stargazing on the beach (the resort was right on the beach). He told me that he never expected that Make-A-Wish would send us to such a nice place and how he wished he didn't have to go home. He asked if we could just save all our vacation money and go to Hawaii every four years instead of vacations anywhere else. It was so sweet--he was so happy with how it all turned out.

All the kids loved it, but I must say that Laura was a little young for Steven's adventurous spirit. She would have been happier to just stay at the resort the whole time, but Steven (and I) couldn't pass up the chance of being in Hawaii to see new things and so there was more driving and walking than she was up for. Still, she had fun and wants to go back, especially so she can play with the new friends she made at the swimming pool.

In all honesty, traveling with little kids can be hard, and doing it in the middle of a move and pregnant isn't ideal either. At one point I was really upset with myself because I thought, Sonja, you are probably the only person in the world who can be sitting on a beach on an all expenses paid trip to Hawaii and be stressed out. But one thing I have learned from our experience with cancer is that you can't wait around for things to be perfect, you just have to seize the moment. And so, though I failed that philosophy part of the time, most of the time, I was just grateful and happy for the beautiful moments and the great memories that we made.

One of the highlights of the trip was a luau that Make-A-Wish sent us to. We all loved the dancing and entertainment. Steven must have taken over 100 pictures of the dances and he didn't stop smiling the whole time. During dinner, the band had Steven stand up to be recognized and then dedicated a song to him. You've probably heard it, it is "Somewhere Over the Rainbow" arranged by Iz, a Hawaiian singer. I love that song and when dedicated to Steven and his wish trip, it was full of meaning to me. I cried through it all and felt overwhelmed with gratitude that there are people out there generous enough to make dreams come true and that Steven is doing so well that he could enjoy such a wonderful place.

I am also so grateful for all the friends and family who have helped us with our move and with the renovations that we have done so far. Without help, I really don't know how this all would have worked out. We have a little more time until we will actually move in, but we should be staying at our new house sometime within the next week.

I am planning to make a video about our trip that will have lots of picture, videos and hopefully even Steven telling about his favorite parts. There is so much to tell--hopefully pictures will help cut down on the words :).

Tuesday, May 29, 2012

Wild things

We closed on our house on Friday--that was exciting. We are going to paint and do new floors at our new house before we move in, so we will stay here for a while and see how the next few weeks go. Sadly, we won't get the keys until today or tomorrow, so we decided to head to my parent's cabin with them and some of my nephews for the weekend and escape the ever growing mound of boxes that are filling up the already tight space. We had a great time--even though I still found myself thinking about paint more than I wanted to.

The boys had so much fun--I don't think they had even a moment of boredom. Even on Sunday, which was too cold and rainy to be outside, we only pulled out one board game and that only to keep the noise level down. Inside, they had green plastic army men, paper airplanes, pillow fights, wrestling, books and who knows what else to keep them busy. Outside, they went hiking, shooting, fishing, exploring, built a fire and more.

Steven whittled his own fishing pole--he thought that sounded more fun than using a real pole. No luck on the fishing, though!

The rain made everything green and beautiful. Something about being outdoors just reassures me that somehow things will all work out. I kept thinking a poem that one of my mom's good friends shared with me:

The Peace of Wild Things
by Wendell Berry

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

Friday, May 18, 2012

I hate cancer .5K

In an effort to do something to vent her cancer anger, my cousin, Dawn, came up with this fundraiser last year and it was so much fun. There is a short race and a craft/goodie sale. Come join us, if you can--it's fun! And I know from personal experiece how helpful it is. Even though we won't be benefiting from the money this year, I know the families that will and I know it will be so appreciated.

Tuesday, May 15, 2012

Clean scans

A long day...a good day. We had an early start with an appointment at 8am. Steven threw up on the way to the hospital. Good thing my van hasn't been cleaned out in a while, cuz there just happened to be a grocery bag available. Against my will, I peeked at the screens the best I could during all the imaging (CT, Xran, bone scan) and felt good about the scans. I tried not to be too confident in my radiology skills, but felt hopeful as we went to lunch with my dad to await the appointment with Steven's oncologist to get results. Even still, I didn't want to wait for that appointment. We got a lucky break, though, as Dr. Jones, the orthopedic doc called me and told me they all looked good. So we got to go to clinic feeling happy and relieved. He looks great and now we can breath easy for a few months. He has been delightfully happy all afternoon and evening--a huge burden lifted.

Monday, May 14, 2012

Big things

Last year, when Steven was first diagnosed with cancer, I promised myself that I wouldn't stress out about anything that wasn't life or death ever again. But then this spring came along and with it, some life and death situations added along with other stressful things, and all my emotions are so mixed up together, I can't seem to separate out all the stress. It is a bit easier to figure out why my stomach hurts tonight, though, because Steven has scans in the morning.

Before his scans tomorrow, I feel I must fill you in on some fun things going on in our lives. They are fun, even though they bring some stress along with them. First of all, we are having another baby! It is due November 15th. As I watched my kids play baseball in the backyard this evening, with their enthusiastic smiles and beautiful freckles, I felt overwhelming lucky to get another of these sweet kids. (Besides, baseball will be more fun with less ghost runners.) Every once in a while, I have moments of fear that I won't have it in me to be the mom I need for my many kids. But mostly, I am so looking forward to the joys of a little baby and I trust that Heavenly Father will help me compensate for whatever I lack. (And then, there is always Rob, who is a huge help to us all--he makes sure the important stuff gets done, even when I drop the ball.) The kids are all so excited about the baby, especially Steven. He has been hoping and praying for a new baby in the family for years.

And so, kind of going along with the baby news, we also have house news. We are in contract on a house that is a little closer to the boys' school and that is hopefully big enough for our growing family. It is over twice the size of this little rental, so it should feel like a mansion to us. This has been a hard decision for so many reasons, but we feel good about this and I feel very anxious to move. Hopefully we will close on the house in the next few weeks and if we are lucky, we will move in before our trip to Hawaii. We are going to try to paint before we move in, so we'll see how far the adrenaline can go.

These are the main things going on, but along with them are the everyday problems and then watching my sister in her fight with cancer and even having a few health scares of my own. It is so hard to separate out the stress for me because my emotions are so close to the surface and my stomach usually feels terrible and whose to say I'm not suffering from a little post-traumatic stress disorder of my own? But I am making it through. I usually get out of bed :) and I usually take a shower. I can pretty much keep up on the dishes, even if laundry is a little daunting. I usually sleep just fine, though, thanks to pregnancy hormones.

So forgive me that I've been so negligent at blogging. I don't make promises that I will start to write again regularly, either. I will make sure and post the results of Steven's scans tomorrow, though. And maybe since a few of you now know about the scans, we can divide up some of the worrying tonight.

Monday, April 30, 2012

Hair cut

I will start this post with an apology that I don't have before and after pictures. If I get ambitious, I might post one later. Today I gave Steven his first haircut since before he started chemo. Well, once I took him to a place and they trimmed up the ends, but it doesn't really count because his blonde tipped curls have stayed in tact. His hair is getting supe long and when the curls aren't tight, he has been sporting quite the wild head of hair. Plus my mom has been threatening to cut his hair whenever she sees him, so I figured it was time and he reluctantly agreed. I picked the boys up from the bus stop with every intention of taking them to Cookie Cutters, but they were tired and hungry and begged me to just cut their hair at home. I only know one haircut and that is short. So while Steven watched a Nova episode, I cut off his curls. Addie couldn't take her eyes off him and every few minutes said, "I just can't get used to how you look, Steven." And Laura said, "You look like the old Steven from when before your foot was on backwards." And then before he went to bed, Steven came and found me in my room and confessed on the verge of tears that he is sad his hair isn't curly anymore. And even though this post is making me cry as I type it, I tried to be nonchalant and said Really Helpful Things like, "At least you have hair," and "You look great no matter what your hair looks like," and "If you have to suffer 9 months of chemo to get hair like that, it isn't worth it." And even though those things are true, they didn't comfort him or even me. And I don't know why. Is it because that hair represents the great health he has had since the chemo is over? Or because curly hair is just cuter? Or maybe his new look reminds us of how things used to be. But whatever it is, maybe don't point out to him how straight his hair is looking. It seems that my little guy who doesn't care about the look of a backward foot has a streak of vanity afterall.

Saturday, April 28, 2012

Star of the week

Life has been pretty crazy over here lately...I will have to fill you in when things have settled down over here.

I'm posting today a thing I wrote for Steven's star of the week spotlight. Maybe nothing is new, but I thought I'd type it up anyway. Steven said the class really like embarassing stories, but he wanted to make sure I didn't say anything too embarassing. Just thought I'd clarify why I picked the stories I did.

Steven was born in Columbus, Ohio and lived there until he was seven, so he is a Buckeye. He taught himself to read when he was four, and hasn't stopped reading since. He often gets caught up in a book and it is hard to get him to do whatever else he needs to do--like eat or play with a friend who has come over to play. He loves to learn about history and science and then share the facts he learns with us. When he was four he pointed to the sun and said, "Look, Mom, the giant ball of burning gas!" He loves to learn about Yellowstone and is our family expert. He loves to travel and learn about new places. Even as a baby he never complained a bit on a long drive--he would just look out the window and take it all in. On one of our airplane trips to Utah from Ohio, he was three and could see the moon and the planets perfectly out the window. He was fascinated and decided he wanted to be an astronaut. (That dream has since changed, now he wants to be a chemist.) The only thing he didn't like about that trip were the automatic flushing toilets that were all over the airports. They were his biggest fear at the time. As we were walking through the airport, he heard a child crying and he said, "See Mom, there is another kid here who doesn't like the toilets either."

I'm happy to say he got over his toilet fear. A little later, when he was 5 or 6, he was afraid of natural disasters, especially tornadoes. We had an occasional tornado warning when we lived in Ohio and were in the middle of a severe storm that damaged the exterior of our house. He was wide eyed and scared to death when Rob and I wanted to watch the hailstorm instead of hunkering down in the basement like the warnings told us. After that storm, he did some research and told me that he planned to live in Maine when he grew up because he figured that Maine had less natural disaster risk.

Of course, some disasters are personal and it doesn't matter where you live, you can't escape. I haven't asked him, but I bet Steven would rank cancer among his top fears now. I must say, he was so brave through his fight with cancer. His doctor told him he was tough as nails--and he was. He isn't afraid of hospitals or needles or surgery, but he went through lots of pain and fear and was brave through it all. He doing great with his walking and he doesn't let his disability slow him down. We are so proud of him! *****

So that is what I wrote. The kids wanted more embarassing stories, but I had a hard time thinking of them. I thought of one when I got home, that I will share now. The other night I wasn't feeling well and was lying down. Steven came in and told me to just go to bed and not worry about anything. Then he started to do the dishes by himself. He unloaded the dishwasher and loaded it. It was very sweet of him, and although he isn't always so helpful, he is very compassionate. Well, the next morning as we were getting breakfast ready, I started getting dishes out of the cupboard and found that he had unloaded the dishwasher while it was dirty! And we had to start all over again. It was a nice thought, though!

Sunday, April 15, 2012

Spring pictures

So here are some long promised pictures of Steven's leg. You can see that he was in the island spirit when he picked the fabric for the leg--we are officially counting down the days to Hawaii!
Here is Steven posing for a picture at the Sand Dune arch at Arches National park during spring break. Have I posted a picture with him wearing this shirt yet? It reads: "New and Improved: Now Cancer Free" (Oh, and don't worry--he is faithfully wearing the shark tooth necklace that Make-A-Wish gave him. He doesn't go far without it!)
With Grandma Jill at Bluff fort. My mom and grandma were troopers as we explored Bluff.
Here is another picture from our photo shoot a few weeks ago--just a little shout out to this beautiful spring season!

Wednesday, April 11, 2012

Therapy

Steven hasn't been to PT in a few weeks so when we showed up today, his therapists were floored with his progress. He hasn't touched his crutches for a few weeks now and gets stronger every day. They are talking about having him come in monthly rather than weekly, so life will be a little more simple that way. Of course, there are still many questions, this procedure is so rare and unique to each person that getting just the right alignment of his prosthetic is a tricky thing.

I have some catching up to do, like promised pictures of the leg, etc, but I am on my ipad tonight and too lazy for that. I did want to share a conversation I had with Andrew as I was tucking him into bed. He decided to come along to physical therapy today (he loves the basketball hoop and gym at Shriners and is always hoping I will let him play the ipad). As we arrived, Steven's therapists were finishing up with a girl who was trying to walk with the aide of a walker and almost a full body brace. I am no expert, but she may have had some sort of muscular dystrophie. At bedtime Andrew asked me if I saw her and then said, "You know, Steven doesn't have it all that bad. I mean, he doesn't even need crutches anymore. He could walk around through his whole feildtrip today!". I am not sure why this struck me so hard. I am constantly humbled and amazed by the kids I see and meet at Shriners, but maybe I have grown accustomed to them or I have been focusing too much on our problems. His little observation helped me see that things really aren't that bad at all.

Tuesday, April 3, 2012

More cancer stress, but hope is on the horizon

Okay, that is it, I am officially fed up with something about this new blogger format. When I get a minute I am changing back to the old style in hopes of having some better luck.

I just spent 30 minutes typing up an emotional report of some of the cancer mental anguish we've been experiencing around here lately, and somehow it all got lost. So for tonight, I'm done pouring out my heart. I hope some computing unit out there in cyberspace enjoys that!

To be honest, I don't know that I will ever retype it, but a recap is that Steven had a hard time at a genetic counseling appointment last week--such a hard thing. Maybe foolish of me to even go to that appointment. In the end, the fear of living with the knowledge of having a very rare but scary gene mutaiton (Li Fraumeni Syndrome) was just too much and he decided firmly against the idea of testing. The chances of him having the mutation are so low--espceially when you look at my extremely large family with only a few isolated incidents of cancer. He cried more at that appoinment than he ever did last year--I think combined. He wouldn't really talk about it afterward, but I think he knows just how devastating a gene like that can be and doesn't want to chance having to live with that fear forever.

A few days after that appointment and amidst lots of genetic research, Addie woke up in the night crying that her leg hurt. This has happened several times in the last few months and we have thought growing pains. But somehow when it happened last week, my poor troubled mind wouldn't let me sleep or let me out of bed the next day. So Dr. Jones humored us and today he saw Addie and took an Xray. Everything looked good and so we are taking deeps breaths of relief today and hoping to be joining the ranks of parents who can say "growing pains" with confidence.

On Sunday, at our church's General Conference, there was a talk that spoke to my heart more than any other about children who have disablities and physical challenges. If you are the lucky parent of such a special child, you would enjoy watching it. They haven't published the text yet, so I can't pull a quote, but I will soon. Listening to Elder Rasband, I just knew without a doubt that God loves my little boy and knows of our struggles.

We had a small "i hate cancer" emotional moment at the Geography Bee on Friday. Steven had fun and did really well. He missed three of his eight questions and the kids who made it to the finals only missed one or zero questions, but as he was competing against kids in up to the eighth grade, he really did remarkably well. His teacher had called ahead to make sure they would use a microphone to compensate for his hearing loss. As the moderator began, he explained that he would use a microphone for Steven, however, in the end, he decided not to. He asked Steven if he could hear and Steven said he could, so he put down the microphone. One of the questions they asked him was, "Which country has a longer average life expectancy, Austria or Nepal?" Steven answered "Austrailia" because he hadn't heard right. There was an audible gasp from the audience, who all knew he had hearing loss. Such a sad thing. The moderator took a break after that round to check with the judges to see if they could give it to him, but they didn't. Poor Steven, he cried and cursed his stupid ears and eventually got over it and enjoyed the competition. Luckily, it didn't determine if he would have made it to the finals anyway. The boy who won took 5th place at nationals last year and didn't miss a single question all day. I would venture to say that he wouldn't have missed a single question posed to anyone that day. I'm thinking that probably Rob and I just aren't dedicated or obsessed enough to produce a Geo Bee chanmpion, but maybe someday Steven will surprise us with obsession of his own.

On a happy note, we found out that we are going to Hawaii in June. What an exciting thing to keep our minds off of some of the scary stuff. I took the kids swimming today and Andrew and Steven tried out their new snorkeling gear and can't wait to use it in the ocean. We are on spring break right now and I have the very good fortune of a trip to visit my grandma tomorrow. Steven has been begging to go for some time now--he never made it down to see her during treatment. There is nowhere like my grandma's house to fill my mind and heart with peace.

Sunday, March 25, 2012

Things I should be posting on the blog, but haven't been

For those of you who faithfully follow my blog, I am so sorry to have been deliquent lately. I wish I had a great excuse for my neglect, but I don't. On the days when I think to myself, I should update the blog--sometimes I can't even get through the thought without pushing it aside. For some reason, the blog just isn't calling out to me. I feel like I am just wanting to move on or something and the blog just reminds me of cancer.

I am forcing myself to post today because I fear that some people take my absense to mean that something is wrong. I am happy to report that life is great. Steven is doing so well. This week he got his new leg and has been amazing us every day with his new physical feats. Yesterday he spent over an hour on his scooter. He had tried it once with his old leg and it didn't work--he just didn't have the strength. When he tried it yesterday, he was up and going--just like the old Steven. After scootering around, he went to a friend's birthday party where he walked all around, hiked up steep hills, and walked the quarter of a mile from the park to his friend's house without crutches or complaining. He is getting stronger every day--he hardly uses his crutches at all anymore, and while he still limps significantly, it gets better every day. He loves to show me his tricks on the playground, like scaling the climbing wall or sliding down the fireman's pole. It is like he is one again and so proud of himself. When he gets home from school, he usually has a new accomplishment to report--like playing foursquare without crutches, or climing the steps to the upper playground.

As has been the case for the last few months, Steven continues with his happy and positive outlook on life. Everything is a new adventure and he rarely says "no" to any suggestions for fun. He looks forward to school every day and (as has always been the case) he does whatever he can to get us out the door on time. Being late to school just won't do.

And life around here is going by fast. We are finally feeling like we can buy a house, and so the search is on. I want nothing more than to start packing, but I guess since we haven't even seen a house that we would buy, it might be a little premature. We should hear about when we go to Hawaii sometime this week. On Friday Steven competes in the state geography bee. He hasn't been studying too hard, so we'll see how it goes, but it should be a fun break from routine anyway.

I've been obsessing about getting a family photo done--if I've learned one thing this year its that life is too short. We finally got them taken on Thursday. I tried to upload some, but I think my blogger account is full and I need to add some memory. Here is one of just Steven--you can see that his hair is looking great these days.

I really need to post a picture of his new leg--I promise I will very soon. He has gone to bed for the night as I finish up this post and I don't have one taken already. See? I told you something was wrong--me who has documented every stage of this and I have failed in a week's time to get a picture of the new leg. He went with a Hawaiian theme for the pattern on the leg--kind of fun. P.S. Sorry there are no paragraphs! I guess I need to figure out this new format--or maybe use a diffrent browser. Either way, I'm going to bed now, but I do apologize--I put them in there!

Sunday, March 4, 2012

Hawaii, here we come!

I've mentioned before that Steven has been waiting, maybe a bit impatiently, to hear from Make-a-Wish. He has expected them to show up at our door any night with information on his wish. Sometimes, he would even wait by the window, and watch for his wish granters. He would ask me constantly if they had called and when they were coming. I started answering that they would come when he least expected it.

Well, I was right! They surprised him on Thursday at the Cub Scout Blue and Gold Banquet, which was already planned as a luau. Our wish granters had some Polynesian dancers from BYU come to entertain us. After their first number, a hula, they called Steven up on stage to tell him that his wish to Hawaii would be granted! I was amazed that he didn't figure it out before it happened--he told me that he didn't realize that it was Make-a-Wish until he got up on the stage and saw his wish granters. They went all out for him--there were several people there with gifts for him--shirts, sandals, snorkeling gear, leis, chocolates, balloons, and his favorite--a big book about Hawaii. After the presentation, they performed a Haka dance and then taught the scouts to do it as well--it was darling.

One of these days, I need to make a video of all the fun. For now, here is a clip that I love--all of it together made me cry. I love when Steven hops up on the stage--this is my Steven who has been on crutches since May, essentially.



When they read his wish, I was just filled with emotion--gratitude and joy and humility. After it was all over, I asked if he was okay with such a public announcement. He once made me tell the granters that he didn't want something like that. He said, "Well, no one said, 'No fair! You get to go to Hawaii!', so I guess it was okay." It finally dawned on me that he just didn't want to rub his good fortune in to others. I must admit that I get it--it feels strange to be in the spotlight and receiving such a grand gift.

And grand it is, I must say. Just the thought of Hawaii makes me smile and when times feel tough, there is nothing like the thought of sunshine at the beach to lift me up. We don't know when we are going yet, but we do know that we will stay in Hawaii for 5 nights and are going to the big island, Hawaii, where the volcano is. And yes, it is for the whole family, so even the little girls will be coming along this time. In some ways I can't wait, but I also love having something to anticipate, so however long we wait, that is okay with me.

Thank you, thank you Make-a-Wish. How do I even begin to express my gratitude?


Steven and his awesome haka face.


The dancers were so nice. As we were visiting afterward, it dawned on Steven that Make-a-Wish had invited them and not the scout leaders.


Here we are with the dancers and his wish granters, Gloria and Tiffany. Thanks everyone!

Tuesday, February 28, 2012

Lately

Steven has been doing so well with his new leg. On Sunday he decided not to take his crutches to church and to keep his leg on all day. He wore his new leg all day yesterday and today and has had no problem with it. He tells me he isn't using crutches around the classroom either, but I am having him take them to recess. His walking isn't amazing, but it is pretty amazing that he can walk.

Here is a picture of his leg--unfinished, remember:



It may be hard to tell from the picture, but he can stand up straight when he wears his leg--it is really cool. The best of all is how much he loves having a leg.

Today at school he found out that he made it into the state Geography Bee at the end of March. He was so excited--when I picked him up from school he said, "Mom, do you think we could get donuts today?" I asked him why we would get donuts and he said, "To celebrate!" He was smiling so big--he couldn't wait to tell me that he made it to state. Once we were all in the car and on our way, he started having second thoughts about the donuts and asked if I would take him to Barnes and Noble and buy him a "celebratory book" instead. I thought I'd be super generous and do both. Rob has all the kids at the bookstore now and Steven even went without crutches.

He is really just so happy lately--we went swimming yesterday and he was a little fish--I don't know if the backwards foot gives you kind of a propeller advantage or what. We've taken him swimming many times, but he was having so much fun yesterday, I couldn't help but think of a time we went swimming when he was still in treatment and he was cold and pale and shivering and begging to go home the whole time. A totally different experience.

We got snow for President's day weekend and he, Andrew, Rob and the cousins had an "epic" snowball fight in a fort that the boys built. Though most of the snow has melted, thier tall fort still has some remains in the backyard.



So there is my random update--good times! And they are back from the bookstore now and I kid you not, he spent his own money to buy a book about grammer. (There is a bit of a backstory on that one, but the fact remains that he bought a book on grammer!)

Wednesday, February 22, 2012

Leg #2

(Or #3, depending on how you are counting) Yesterday we had an appointment at Shriners with Scott, the prosthetist that is making Steven's leg. We had a lucky surprise--we got to take the unfinished leg home with us to try out for a few weeks before the finishing touches are made on it. I am too lazy to upload a picture right now, but it certainly looks different from the last one and it functions a bit differently too. Steven can stand up straight and is already doing very well with it--his physical therapist thinks he is already doing better than he ever did before. I must admit that I'm a little nervous about the leg in general--worried that Steven will break his leg again by falling in a weird way. He needs to break it in slowly and so I didn't let him take it to school today. He was so disppointed--he really loves wearing his leg. I guess I will let him take it tomorrow--I will just hope that he actually takes it off at some point. Last time around, Steven didn't got much for the "breaking in" period--he wanted to wear it all the time.

Thursday, February 16, 2012

Where were you one year ago today?

One year ago today was the scariest day of my life. I know I've written some about the day Steven was diagnosed, so I apologize if I am being redundant, but now that I am a year away from it, I need to write it down. It is one of those days that totally changed my world and many of the details are etched in my mind.

The night before, I finally actually saw Steven's swollen knee and knew that it was more than him faking a limp. (Yes, that was one of the explanations I had for his limping--I'm that cool.) I sent the boys off to school the next morning and started on my morning chores. I wasn't thinking much about his leg, but when I noticed that it was past 9:00 and the doctor's office would be open, I called and described his symptoms to the nurse. I felt sure she would tell me not to worry about it (and I wasn't really worried about it), but instead she said the doctor could see him that very morning. I headed up to the school to pick him up and took the girls along.

Dr. Schmidt examined him and ordered an X-ray. Through this all, I had no inkling that anything serious was the matter. In fact, even after the X-ray when he asked us into his office and offered that his nurse would entertain my girls, I had no clue that my world would be turning upside down. I wondered if all the exam rooms were full--it didn't look too busy. The nurse handed the girls some paper and crayons and the doctor very somberly told us that the X-ray revealed a bone tumor. He asked if I would like to call my husband. I was really confused--what causes bone tumors? He was using words like "malignant" and "benign", but cancer really didn't cross my mind at all. I still can't decide if it was the classic denial response that often happens in a diagnosis, or if the concept of cancer in my child was so beyond any thought I had ever had that I couldn't connect the two. Or maybe it is both and that is how denial happens.

He asked us to wait while they called Primary Children's hospital and made an appointment for us for that very day. We went into the waiting room and I tried to wrap my mind around what was happening. At this point, I still had no clue that we were looking at cancer. Just the week before, my sister had confided to me that she had found another melanoma tumor after over three years of being cancer free. She still hadn't told many people, including our parents or her kids. She was still waiting to see what the extent of the cancer was. I texted her: "I'm at the doctor with Steven. He has a bone tumor. Not sure what it all means." She says it is the worst text message she's ever had. I didn't elaborate--I needed to let Steven play tetris on my phone while we waited. She and my mom headed toward my house to meet me and take the girls while we went to the hospital. Alisa felt like I needed to be better dressed for the appointments and after finding that I didn't have anything cute clean, she traded me shirts and decided it would have to do.

Finally, we had an appointment and the post-it note with the info on it (Hematology/Oncology 4th floor) was my first clue that they were thinking cancer. I think it is there where my memory starts to cloud up. Rob met us somewhere--I think at the hospital, I don't remember. Someone took my girls, probably Alisa, and my mom ended up coming to the hospital at some point, too. Steven and I must have gone to the clinic and later met my mom and Rob because I have video where we are alone and waiting. We later went downstairs for scans and an MRI. And then back upstairs to meet with doctors. My dad came as well. At one point we had Steven, my parents, Rob and me plus a resident and a doctor all in the little clinic room. I was feeling self conscious because there were signs everywhere discouraging family gatherings at the clinic, but their support meant the world to me. I felt like my foundation was being yanked away.

After discussing chemo at the clinic, we went over to the orthopedic clinic to meet Dr. Jones. By this time, it was after 5:00 and all the patients were gone. We had our little entourage, and he also had a resident with him, so he invited us to just talk with him in the waiting room where there were chairs for all. The way he talked really put Steven at ease. Dr. Jones explained that the chemo would be like taking a sledge hammer to the cancer--and afterward Steven like to explain chemo with that image. I remember my parents telling Dr. Jones about Alisa's cancer and confidently explaining how she was NED. My heart was breaking for them because they were about to find out that it wasn't so and I was having a big taste of what it feels like to have a child with cancer.

We came home that night to a clean house and pictures and cards from my kids and Alisa's kids. Yes, now that I write this, I am remembering that she must have had my kids. I couldn't sleep much that night as my mind raced with fear and anxiety. The next day Steven needed a biopsy to confirm the diagnosis. We were to report for surgery around lunchtime, I believe. I sent him to school the next morning. Looking back, I can't believe I did that. Maybe it was the denial, or maybe I was starting my personal fight to keep our lives as normal as possible. At any rate, I believe he even told his class what was going on. I don't remember.

And the rest is well documented on the blog. In July, my cousin, Eric, made a video for a Relay for Life event and included a section about Steven. I have been wanting to post it for a while now, and I think today is a good day to finally take the time to do it because it includes some video from the first few days of diagnosis. The part that shows Steven reading a book, waiting in the clinic is so hard to watch because all the feelings of that day rush back to me. Steven really won't watch that footage--it is just too hard.

I don't really know how to take a day like today. Do you celebrate or mourn? I don't feel like doing either, so instead I will just remember.

Monday, February 13, 2012

Curly hair



Here is a picture of Steven shortly after washing his hair--after it dries it gets wavy or crazy rather than curly. One of his nurses called it the $100,000 perm. That is so true, except the price is a little outdated. I still have only trimmed up the ends--it is just too much fun to see so much hair.

Today Steven got his class picture back with pictures that were taken in October. He had just a bit of fuzz on his head at the time the picture was taken and he still had that chemo look to him--a bit tired and pale. He was so embarrassed by the picture that he didn't want to show it to us. (He forgot that we had all seen it months ago when it came home as his school picture--the class picture takes a lot longer to come out.) He said, "I want to tell other kids going through cancer that they should wear a hat in their school pictures." I thought it was pretty funny. I don't remember the day he had pictures taken or if we discussed a hat possibility. At the time, he wasn't wearing hats very often. We were just so used to the bald head, that it didn't bother us. But now, with his full head of hair, I think he is a little shocked when he sees that old look he sported for so long. I have to say, I'm glad that the chemo look is behind us enough that it looks foreign.

Saturday, February 11, 2012

This week at Shriners

Steven had two appointments this week at Shriners--one with Sonya for physical therapy and the other with Scott, his prosthetist. Both appointments went really well--Dr. Jones even came down to meet with the prosthetist with us. Talk about going the extra mile! I am feeling really good about this new leg--that it will really get Steven walking.

When Sonya first saw Steven and had him do some exercises, she was amazed at how good he looked. She felt like he was better off now than he was before his break, with maybe a few minor exceptions. She had him standing in his brace and he was holding himself up just fine. Scott was also impressed with how straight Steven can get his leg. Of course, this new position is going to require a new prosthesis, so we have now officially started that process. It will be almost four weeks until he gets his leg and get started walking with it.

All in all, it was a hopeful feeling. When Steven first broke his leg, I never would have guessed that it would end up benefiting him in the long run. I suppose time will tell if that is true, but so far it looks like it is so. Either way, I have been feeling much more laid back about the whole walking thing. Every time I go to Shriners and see other kids with a variety of problems, it makes me realize that no matter what the child's ability is, they find ways to compensate and do just fine. One little girl at therapy didn't seem to have any use of her legs. She was scooting around on her hands and getting around well. I thought about Steven and all his crawling and scooting and how he has really made do, and really, I am feeling like he will be just fine, even if he can't run around like a normal kid. For example, he was thrilled to report that the activity in PE this week involved hopping on one foot--and he is a hopping pro!

There is something really special about Shriners and I am so grateful for this amazing hospital and that we have one so close by. Where else can I carry around a prosthetic leg and not even get a second glance from the people around? Many people have asked me about Shriners, and I don't know if I have made it clear on my blog about how their services work. Shriners is a charitable hospital for children. It specializes in orthopedic condintions, but I believe there are some other conditions that they treat--very specific conditions, I don't remember what they are. To qualify, the child must be under 18 years old and have an orthopedic condition. Then, the hospital will treat free of charge to its patients. If you have insurance, they will bill insurance (that is a new thing--just a few years ago, they didn't even bill insurance), but the patients families don't ever have to pay. It is the charitable branch of the Masons--and I don't really get all that, but hence the masonic hats in their logo.

I just think it is an amazing thing--I knew nothing about Shiners before this experience, although I think I had heard the name. Never would I have anticipated being so indebted to them. We are blessed to have health insurance and I'm sure we could do this without Shriners, but when I was reasearching prosthetics and rotationplasty prosthetics in Utah, I really felt like this was the place where Steven would get the best leg. And then the physical therapy there is so much better for him, simply because it is a pediatric environment and the therapist works directly with the prosthetist to get what Steven needs. But then, I don't have to pay any copays to go, or pay for the part of Steven's leg that insurance won't cover. So, really, it has been a huge blessing. If any of you need a worthy organization to donate money, consider Shriners hospitals. I'm sure you won't be surprised if I do some fundraising for them when we get back on our feet (pardon the pun!).

Tuesday, January 31, 2012

"You may breathe normally"

I am happy to say that Steven's scans were clean today! He had a blood test, a chest CT scan and an Xray. All looked normal (okay, the Xray has some crazy new bone growth, but no sign of a tumor). The CT machine said, "Take a breath in and hold it. [pause] You can breathe normally again." That is exactly how I felt when Steven's oncologist told us the scans were normal. The sun was shining as we left the hospital and I couldn't help but feel very hopeful. I think one of the hardest things about this is how it just feels so beyond my control and so unpredictable. What a lesson in walking by faith. But hooray! He gets to go on his fieldtrip tomorrow and is back at school this afternoon! That is a happy day.

Monday, January 30, 2012

FAQs

I realize that I haven't been as diligent at blogging lately. I have noticed that because people who keep close tabs on the blog keep asking me things that I could easily blog about. So here are a few answers:

Q: When will Steven hear about his Make-A-Wish trip?

A: This is a question that Steven frequently asks me--probably about seven times a day. I don't know the answer. I will say that he changed his request afterall. One evening we were talking about Hawaii and out of the blue, Steven decided that Hawaii is what he really wants to do (ah, the fickleness of youth). Rob came into the room and caught the jist of our conversation and then asked if he had seen the news about the wrecked cruise ship. We hadn't heard about it, but once we did, Steven was even more certain that the Hawaii trip was for him. He needed to write a different letter and that letter was reviewed by the board on the 25th of January. If they don't approve that, his backup wish is for a regular cruise. We put our date of choice as the week of spring break, but we also said we could go whenever. So, we will see!

Q: When will Steven get to wear his prosthetic again?

A: This answer makes me kind of sad. Starting tomorrow, he is able to bear weight on his leg. We originally had an appointment with his prosthetist tomorrow, but that has been postponed until Feb 9th. Unfortunately, he isn't able to wear his leg--it hurts him terribly. He either needs an adjustment or a whole new leg. So, until we see his prosthetist (and maybe even for weeks after), he will not be in his leg. We continue to do PT and he is starting to crawl around on his foot. We will likely have him wear his brace until he has a leg, just to protect it.

Q: What does the brace look like?

A:

Q: When are his next scans?

A: Tomorrow morning. I'm a bit worried.

Q: Why are you worried? He is doing great--surely there is no way he could have cancer.

A: Well, the scans are set up to hopefully find any cancer while it is still small--so if he did have cancer, there would be no symptoms yet anyway. The reason they are so close together initially is because the cancer is most likely to come back at the beginning if it will. With osteosarcoma, it can come back anytime in the next 10 years, but the frequency of the scans reflects how likely it is to return. He is very lucky that most people with his stage of cancer will never see it come back. But almost a third of them will, so the chance is certainly still there. Plus, the events of the last week shaken my faith in clean scans, you know? Also, a lung metastisis is a bad thing to have, so you know, the stake are high.

Q: Do you have a realtor?

A: Not yet.

Q: Is Steven's hair curly now?

A: Certainly more than it used to be and really curly when it is wet. We have trimmed up the back and ears a little, but so far, we can't bring ourselves to cut it. It is just too much fun to see all that hair!

So there you have it. I will try to quickly post the scan results tomorrow, so you aren't left hanging. We are praying hard for clean scans tomorrow! And then we can move forward with fieldtrips and science fairs and wish trips and walking and house hunting and helping Alisa in some small way.

Sunday, January 29, 2012

Trials--a discourse

So a few weeks ago, I was asked to speak at the adult session of our Stake conference. The topic was "how the gospel has helped you through your trials." I'm not usually too scared about speaking assignments, but for some reason this one had me worried. I didn't think I could do it without crying. And a few days after I said "yes," we learned about my sister's cancer. Anyway, I decided to read it almost word for word and not mention Alisa and I prayed really hard that I wouldn't cry. And even though I couldn't practice it without crying hard, I pretty much made it through the talk without tears. A little miracle, I assure you. It's a little long--the assignment was for 10 minutes. But here it is if you are interested:



The topic I was given tonight is how the gospel has helped me though my trials. For those of you who haven't heard our story, I will start with that and then share just a few of the ways the gospel has helped me through it.

My oldest son, Steven, who is ten now, started limping about a year ago. In February, it was getting worse and I took him to the pediatrician. I was shocked when the doctor found a bone tumor in an xray and then devastated when further testing confirmed that it was bone cancer. About a week later, he started chemotherapy. Steven completed 18 rounds of chemo, each round requiring 3-4 days in the hospital. For nine months, we watched him suffer the side effects--such as mouth sores, nausea and a weakened immune system. In May, partway though the chemo, the tumor needed to be removed and so he underwent a complicated amputation. In August, he was fit for a prosthetic leg and started the difficult process of learning how to walk. It was such a happy day in October when he left the hospital for the last time. It took a few weeks, but as his blood cells started coming back to normal levels, his energy level did too and it has been so fun to see him back and more excited for life than ever. Learning to walk has been a real struggle for him. In December, he had a simple fall in the living room that broke his femur. The chemo and under use of his leg had really weakened his bone. He ended up in surgery again--this time with more pain than ever. The bone has since healed and on Tuesday, it will be 8 weeks since the surgery so he will be able to bear weight on his leg again. Also, on Tuesday, he has another scan--something that will happen periodically for the next ten years to make sure that no cancer has spread in his body.

This experience has been hands down my hardest trial so far. When he was first diagnosed, I felt so much fear and anxiety that I even had a hard time breathing. After some time and after many prayers, blessings, I was able to eat and sleep again. As that anxiety left, I could see that I was at risk for depression and knew that I needed to do something about it. I considered professional intervention, but my time was so limited. I decided to make a list of things to do each day that would help me through. If I did the things on this list and my depression didn't improve, I promised myself that I would go see a counselor. Or, if I was so depressed that I couldn't do those things, I would go see a counselor.

My list includes things like exercising every day, studying my scriptures, attending church as much as possible, and attending the temple regularly. When I do these things, I find myself able to face my challenges with a bit more courage. Sometimes I read my scriptures and the words go right over my head, because I am too worried to focus. Other times though, I read a passage that fills me with hope.

One day, I was reading in the Book of Mormon, in Mosiah, and the story of Alma and his people really touched me. In the story, Alma was converted by Abinadai and later preached to others who were baptized in the waters of Mormon. They needed to run away from the wicked King Noah, so they ended up living near the Lamanites and essentially becoming slaves. In Mosiah 24:12, it says that they "did pour out their hearts to [God]; and he did know the thoughts of their hearts." They then heard the voice of the Lord who made them a promise. He said,

14 ...I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.

15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

I had read this scripture many times, but when I read it then, it had a new significance to me. I thought about all that I was dealing with and how I was actually able to do it. My burden was still there--we were in the middle of it--but He truly had made it light.

One way that my trials were made light was through the service of others. Eacah person who followed Christ's example and performed service for us was helping to lift our burden. Whether it was meals, babysitting, housecleaning, supportive words or fundraisers, the service of others really made this year bearable. Many times these actions were clearly inspired and I knew that God knew us and was meeting our needs through other people.

Throughout the year, I have had many instances where the spirit testified to me of the truthfulness of the plan of salvation. One of the friends I made at the hospital lost her teenage son to cancer. As she talked about the peace and comfort that she had about his passing, the spirit testified to me that truly God has a plan and that they would be reunited someday. The truth that families are forever offers a peace that can calm my often overwhelming fears.


In May, when Steven had his surgery, we faced some very real emotional stress. Choosing the right operation seemed daunting. We studied very carefully all the research we could find, and we also prayed that the Lord would guide us. Once the decision was made, we felt good about it. However, as the day of the surgery came nearer, we were worried. He would be in surgery for almost 12 hours. People all around us prayed and that day we literally felt the strength of those prayers. He made it through and recovered quickly. Rob and I made it through the day without too much anxiety and we experienced real peace that we had done the right thing.


Cancer is often a very public struggle. I have kept a blog about how Steven is doing and many people know about what we are going through. I realize that not all trials are this way. People don't usually send care packages when you fight with your spouse and most people don't blog about their addictions. But even in those trials that are personal and private, I testify that God knows us and if we go to Him, he will strengthen us. He is all powerful and He loves each one of us.



I would like to close with an experience I had that really hit home to me how much God loves us. During the priesthood session of the last General Conference, my sister and I went shopping. We found a great deal on some beautiful jewelery boxes and I just knew I couldn't pass it up for my daughter, Addie, who was about to turn 5. As we were about to leave the store, I remembered that I still needed a birthday gift for my niece's party on the following Monday, so I turned around and bought her a smaller and more simple version of the box. On Sunday night, after a weekend of listening (or in my case with four little kids at home, trying to listen) to the beautiful words of our prophet and apostles, I was putting my girls to bed. They were excited about the birthday party the next day and I told them I had bought a present for Lizzy already and that it was a jewelry box with a ballerina that spins around and plays music when you open it. Once I mentioned the ballerina, Addie started to bawl. Through her tears, she explained that she had always wanted a jewelry exactly like that. She asked to see it and when I showed it to her, she cried even harder. She wasn't throwing a tantrum or trying to manipulate me, she was sincerely disappointed that Lizzy would be receiving her dream.

I tried to reassure her that it would all work out. I suggested that maybe she would get one for her birthday. I said, "Who knows? Maybe it will be even better than Lizzy's?" "But Mom," she said, "there isn't a better one than Lizzy's. Hers is perfect." As we lay there in the dark, Addie still crying, it was all I could do not to laugh. I knew that she would love her birthday present. Then I thought about Heavenly Father and His plan for our lives. I thought about my limited knowledge of the future and of the eternities. It hit me very hard that I have no idea what Heavenly Father has in store for me and my family and also felt very strongly that whatever it was, and whatever the outcome of Steven's cancer, that it would be wonderful.

I testify that Heavenly Father loves each one of his children. I know that He has the power to lift us up in times of trials. He will not always take away the heartache or the situation. But I want to stand as a witness that indeed God does know the thoughts of our hearts and will visit us in our afflictions. He will also give us the strength that we can bear them. I know that families are eternal and more than ever, I want to live in a way that will bring me and my family back into the presence of our Heavenly Father.

Saturday, January 21, 2012

I. Hate. Cancer.

If I haven't officially declared my passionate dislike of cancer, let it officially be known. It is a complicated feeling because yes, I realize that there are worse things and yes, there is a lot of growth that comes from suffering. I am just tired of watching people I love go through this kind of refining. If you haven't heard, my little sister, Alisa, had scans this week which revealed cancer in numerous places, including her liver and bones. Thankfully it is not in her brain and thankfully there are several treatment options for stage IV melanoma that she can try, all of which offer some hope. There is a link to her blog on my sidebar if you want more details.

I don't really have anything insightful to say and I even feel at a loss for words and action when it comes to her. She has been so proactive this last year, always doing, saying, or organizing exactly what we need. And then when it is her turn I, who am the only family member with firsthand cancer experience and one of the people closest to her, can't even get out of bed in the morning. Kind of goes to show just how weak I really am.

I thought I realized how much I love her, but these last few days, it has hit me with an unexpected force how important she is to me. She was born just 18 months after me and I would say there is probably no one else on earth who understands me better. But this isn't about me. What I need now are prayers for my sister. I am praying for her to have the strength to face the hard treatments she is facing, and I am also praying that the treatments will work.

Thursday, January 12, 2012

10 years

Tuesday (Steven's birthday) came and went so quickly. We started out with an appointment with Dr. Jones at 8am. The xrays looked great--even I could see the new growth and Dr. Jones had his assistant take Steven's cast off and ordered a splint to be made for him. He wants us to be able to work with Steven's foot to get it more flexible and strong and ready to use with his prosthetic. During the whole appointment, Steven was really worried that he was going to be late for school, he especially didn't want to miss P.E. :)

Here are some of the promised Xray pictures. This first one was taken on December 14th. My camera doesn't do it justice, so you may have to click on it and look at it prettly closely to see why I was alarmed when I saw it.



This is the same position on Tuesday, a month after the first was taken. Can you see the new growth at the fracture?



The splint order turned out to be a little more complicated than Dr. Jones anticipated. After a try at the orthopedic center, I called Shriners to set up an appointment with Steven's prosthetist. My calls weren't immediately answered, so in the meantime, Steven went to school. As I was in the middle of making Steven's birthday cake, I got a call from Shriners saying they wanted us there in an hour. So, I packed up the cake batter, the sleeping girls, and headed to the boys' school where I picked them both up and then dropped off the girls and the cake batter at my sister-in-law's house and asked if she could please bake the cake. (Which, of course, she kindly obliged.)

Steven was really dissapointed about being plucked from school for an appointment. His class sings "Happy Birthday" at the end of the day, so he hadn't passed out his treats or gotten his birthday attention before I checked him out early. He was crying when we were alone in the office. When I asked him why he was so sad, he said, "Today isn't going at all like I expected!"

I was thinking about the last year, since his last birthday when he was starting to limp, how so little since that birthday has turned out how I expected. And how our multiple trips to the doctors and my mother and sisters babysitting my girls, and unexpected medical needs of the day summed up the last year well. And later when he got a special birthday dinner surrounded by people who love him dearly and where he was showered with presents, I thought that also represented the attention he has been given all year.



By the end of the night, he went to bed happy. He was able to take a bath and we let him sleep without his cast. Things turned out well for him afterall. Today his splint was ready and we spent the morning getting it fit. It isn't perfect, but he only has to wear it for a few more weeks and then can very gradually start bearing weight. (Since the cast was cut off until he got his splint, we had been wrapping his cast back on his leg with an ace bandage.) Between the resetting of the bone and the fact that his foot has been stretched out in the cast, he can already straighten his foot out so much better. I'm wondering if he will even need a new prosthetic right away. We should know soon.

These ten years since Steven was born have been the best of my life. His birthday is particularly special to me because on that day I became a mother. Nothing could have prepared me for all the wonderful and difficult things that come along with motherhood. I grew up the oldest of nine kids and thought I knew what to expect. The moment I heard Steven cry, I knew that I would do anything for that child and when I saw him, I finally believed in love at first sight.

Happy birthday, little Steven. May your year be full of the wonder and curiosity that has marked your whole life. I wish you many happy birthdays and I hope that you will never have to spend one at a doctor's appointment again!