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


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.