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.


  1. That genetic testing ordeal scared me, too. I can't imagine how Steven felt. I hope your trip to Grandma's is everything you and the boys were hoping for!

  2. Jeffrey keeps complaining of 'growing pains' around his knees. I know what you're talking about Sonja, there is a fine line between being cautious and being totally freaked out! I don't blame Steven at all for not wanting that test done.

    I'm so excited for your trip in June. It's always good to have something to look forward to.

  3. Thanks for the update Sonja. As I read I could feel the emotion you must have felt with your daughter and worries of more cancer. It's sad that chemo/cancer creates a situation that keeps on high alert at all times, even where there is no logical reason to worry. It can make a person feel crazy. You never know when you should worry and when it's okay to let it go. It's so hard!! I'm sorry it's been a rough few days. Hoping for better days on the horizon.

  4. Bless you and your entire family!

  5. Kind of hate all those cancer stories. The geography bee thing still boils my blood. We will show them next year Steven!! I am so happy about Hawaii! Good choice!