Sunday, October 17, 2010

A Lesson from Steven

WARNING: This is a serious sort of post that I felt I had to write for ME. It is one of the many lessons my brother taught me.

My brother, Steven, died from cancer when he was 14.  Desmoplastic small round cell tumor is the official name, but basically it was cancer of the abdominal lining.

Steven (age 12) with my newborn son, Travis
Steven was diagnosed just after Christmas. He was 12 years old. For two years he endured very aggressive treatment that included 7 rounds of chemotherapy, 4 surgeries, a bone marrow transplant, and intensive abdominal radiation. He received more than 300 units of blood and numerous platelet transfusions.

Steven during his first year of treatment
During his second year of treatment we were able to take a trip to Williamsburg, VA with Steven and my parents. Wonderful memories. Wonderful time. We were even able to see the Hale-Bopp comet at its brightest.

Steven and Travis in Williamsburg
That trip, however, was the last time that Steven was able to eat or drink anything by mouth. His intestines were blocked.  From that point on all his nutrition and hydration had to be given through a tube that entered his body via catheter that was inserted into his chest at his initial diagnosis. Steven carried his 10 pound bag of nutrients wherever he went in a special backpack.

He was 14 years old.

I look at my own son, also 14. His favorite part of the day is mealtime. Food is everything, and lots of it.

How would that be? Not being able to eat anything. Steven could only watch and smell.

Steven, Summer 1997
I remember whenever Steven would come to our home, he would raid the condiment section of our refrigerator. He just wanted to have a little drop of salad dressing, ketchup, or pickle juice on his tongue.

He coped by watching cooking shows and became a rather excellent chef. He was especially good at making omelets and insisted on making me one when I came over for a visit one morning. I actually was full from my own breakfast, but I enjoyed it for him.  He also insisted my parents buy a deep fat fryer so he could make a "blooming onion" just like they do at Outback Steak House.

It was hard. Very hard. I talked to Steven on the phone before his final surgery in late September. He told me all he wanted from the surgery was to be able to eat and drink again. He craved a hamburger.

Steven ( age 14)  September 1997
The surgery brought sad news. The cancer had taken over Steven's body. He would probably do OK through the Holidays, but he would not see another summer. The surgeon, however, did what he could and constructed a bypass around the blockage. Steven would now be able to drink clear liquids. It wasn't a hamburger, but it could be his favorite Mountain Dew.

On December 1, 1997 Steven passed away.

Clearing out his desk my mother found coupons for pizza and Mexican food. He had held onto hope.

**********
Thank you, Steven, for helping me remember that food is a blessing not a curse. It is for my nourishment not for my gluttony and my emotional psyche.

Thank you for helping me remember that I have a choice. Every day. You did not.

Your trial was horrible in a way that I will never have to try to understand, yet you found the good and the positive and didn't give up.

Thank you for helping me want to do better when it comes to food, to stick to the goals I have that seem so shallow compared to what you went through. The humdrum of daily living goes on for us still here and I often forget the perspective you taught.

Thank you, Steven, for helping me remember.

36 comments:

Sally said...

What a beautiful post Julie. Thank you for sharing.

Janine said...

Julie, that was so beautiful. Thank you. It really made me see food in perspective. It also made me appreciate Steven all the more. I had no idea what his daily trials were. So thankful we can call you family!

Deb said...

Thank you for this post, Julie. It is exactly what I needed to read today. I've been really struggling with my attitude toward food and toward myself. Now I'm feeling grateful and I feel resolved to try harder.

Suzanne said...

Thank you for sharing this beautiful post with us. Stories like these help put life into perspective. Your brother sounds like such a special person. I'm so sorry for your loss.

Julie W. said...

I told your mom that I hoped Steven had a big Mexican dinner waiting for him on the other side. Thanks for letting us share in the special tribute to your brother.

Susie said...

I'm crying as I read this but am grateful to you for sharing it Julie. I get so crazy about food, misusing it etc. Thanks for sharing a sane perspective-that it is a blessing to us. Thanks for sharing your little brothers life with us as well.

Fine Art by Jennifer said...

After reading this post, I had dreams about sharing some things with you about that time right after Steven died. I'd have to dig them up though. Thanks for sharing your thoughts.

Lesa said...

That was a very neat post. Sorry you had to see your brother go through that. Thank you for sharing a special place in your heart. I enjoyed reading it.

Julie said...

Thanks so much for all your kind comments.

Laura said...

I just keep reading this over and over. So very well put.

Sister Babcock said...

A blessing that we could all learn so much from you and from Steven vicariously, expanding the impact of the experiences.

Kelly said...

Charlene brought your blog to my attention. I am your second cousin on the Davidson side.

Steven sounds like he was an amazing kid. I think about the three 14 year olds in my home (twins and a niece) and am in awe of this kid.

Thank you for sharing that.

Kelly (Taylor) Olsen

Mom to Many - Cheryl said...

I can only imagine how trying this must have been for both you and your family.
Losing someone is hard at new cross roads that make you think of them. They are never gone from your heart.

((hugs))

Carl and Shirley Mautz said...

Julie, thank you for sharing this with us. Steve really was an amazing young man and he will always be remembered in our hearts forever. Your family is so special to the Mautzes. Life's lessons should never be taken for granted.

Stacey Keller Thompson said...

thanks Julie, beautiful

Nichole said...

I am writing you with tears dripping on my keyboard. That was beautifully written and I am so sorry for your loss, but happy that you did get to know and love your brother for 14 years!
Xo

Marianne said...

Beautiful Julie. Thanks for sharing. XOXOXOX

Ailinh Harris said...

Julie, I appreciate you sharing this post. It was very beautiful.

Jean said...

Amazing post, beautifully written. I'm stopping by to thank you for visiting my blog. stop by anytime! Jean

Anonymous said...

Beautiful! I have a son who has gastric issues and food is every important to him as well. When Sean was 5, he had his esophagus removed and his colon put in its place. It took over a year before Sean could eat normally again. For many months, tubes going into his stomach and small intestines fed him formula. He collected coupons, pictures of food, make lists of foods to eat when he could...so much like your brother. Sean still has to have tube feeds at night since his body cannot absorb food, but he can finally eat by mouth.

http://www.caringbridge.org/visit/rawlinsboys

Shelly

kara lynn said...

wow! thank you for sharing. i can always use amazing stories like that. thank you thank you!

April @ HomeHinges.com said...

This was so touching. Thank you for sharing something so personal. The pictures of your brother really touch my heart. Thanks to you and Steven.

Senja said...

That was touching and honest. Thank you for sharing. I also lost my little brother when he was 13 after having battled with a very rare disease for 4 years.

You have a beautiful family. :)

Dean and Sheri said...

I never knew coupons could make me cry.

Sandra said...

So lovely. Thank you for sharing. I can't imagine how hard that was for all of you. Food is a blessing, thanks for the reminder.

Betty said...

I would like to remind you of something else. Early in Steven's illness when he was unable to eat for short time periods because of Chemotherapy, I asked him if he would continue to join us for our evening meal at the dinner table. He complied with my request without complaint. Whenever we were at home, we sat together at the table in the evenings. His one request was that I not serve some of his favorite foods. Sitting at the table gave us a chance to be together and talk. It provided a feeling of normalcy. It helped give structure to Steven's day. I am so grateful that we had this time together even though it must have been extremely difficult for Steven to sit and watch the rest of us eat during those last six months.

Patti Hanan said...

This is so beautiful, Julie. It puts things into perspective. Steven is rejoicing now.

Anne said...

Thank you for sharing this.

Shawnie said...

I should have read the warning about the "serious post" part. Yep, time to be grateful for all the little miracles in my life I forget to notice. Maybe I won't be so mad at the scale this morning.

Saimi said...

Beautiful post! My dads wife of 10 years died of the same cancer. The irony was she had so many food allergies that what she could eat was so limited anyway, then she gets cancer that prevents her from eating period!

Thanks for sharing your story! Visiting from MMB

Charlotte said...

What a touching post. It's funny how much we can take for granted.

Mormon Mommy Blogs said...

I so needed to hear this tonight... you have no idea. Thank you.

Dixie Mom said...

I'm so sorry that any child would have to go through what he did.
Thank you for reminding us how important it is to enjoy life, including the things we eat! When so many of us are concerned about dieting, we should be more appreciative about the ability to eat and enjoy foods.

Joy For Your Journey said...

Wow. That was a bit hard for me to read. My DIL brother recently died of cancer and my brother-in-law is under going aggressive treatment right now. He will probably have to have a bone marrow transplant and luckily we have found a match.

But about food. That was rather piercing as well. I have really struggled with food these past few months and your post made me realize that I am going about this all wrong.

Thanks for the insight.

ladyozma said...

This moved me so much. Thanks for sharing.

One of the things we learned when my son had cancer is that chemotherapy changes the way things taste. My little boy used to eat everything under the sun. One of the first signs of his illness was his lack of appetite. He had a cancer on his right kidney that took up the entire right half of his abdominal cavity. It shoved all his vital organs to the left wall of his abdomen. It also squished his little stomach so he could barely eat anything.

After he started chemo, all he could stand to eat was grilled cheese. Grilled cheese for breakfast. Grilled cheese for lunch. Grilled cheese for dinner. For an entire year.

Once, the head of the PICU felt so bad for him, she got him this gourmet grilled cheese from a fancy deli. It had a mixture of fancy bread and fancy cheese. Because of how small a space his stomach had, it took him an hour and a half to eat it. But he loved it.

I can understand fully how you feel about learning about food and appreciating it. 100%.

Thank you for sharing this. ((HUGS))

Stephanie Bishop said...

I am catching up on some of your posts today and was very inspired by reading about your brother and his battle with cancer. Each time I savor a new holiday flavor, I am going to remember your writings and your brother who suffered so much. It is going to help me get through the season being more grateful for food. Thanks for being brave and writing this so others could be inspired.