Thursday, February 24, 2011

Battle plan

So many people have expressed concern with Steven's cancer diagnosis that we have decided to do a blog to keep our family and friends informed. Steven helped me with the name of the blog and the title of this post--he's in war mode. I've been trying to get something up for a few days here, but it has been so overwhelming. Our hearts and minds are full and I don't even know where to start. Here are some answers to a few questions that people ask us. Hopefully now that the basics are out in the open, we can put up some stories and pictures and maybe even have Steven share some of what he is going through in future posts.

What is Steven's diagnosis?
Steven has been diagnosed with osteosarcoma, a rare cancer in the bone usually found in children and adolescents. The tumor is in the upper part of his right tibia. The tumor is about 7 cm. It hasn't spread anywhere else, and one of the doctors said it would be about stage 2b.

How did you find out?
For a month or even two, Steven has been walking with a limp. It has mostly been very mild and I thought it was an injury. In the week before I took him in, it had gotten worse. He said it didn't hurt him , but one evening I saw him dressing for bed and near his knee was very swollen. I called the pediatrician the next morning and he took an X-ray. When the doctor got the results he sat us down in the office and told us it was a tumor and it looked serious. I had a hard time processing this--I still had 'injury' going through my mind.

The pediatrician called the children's hospital and they sent us there right away for an MRI and C.T. scan. The nurse wrote down the clinic where we needed to go---it was the hematology/oncology clinic. When I read that paper it finally hit me that they thought he had cancer. That had to be the scariest, hardest days of my life so far. I didn't sleep that night and then the next day Steven had a biopsy and a port placed in his chest for his chemo. The biopsy results confirmed that he has osteosarcoma.

What is the treatment like?
Steven will first have 10 weeks of chemotherapy. After that, an orthopedic surgeon will remove the tumor and do either a bone reconstructive surgery or amputate his leg. When they remove the tumor, they will examine it to see how many of the cells have died and at that time will give us a more accurate prognosis. Depending on the tumor's response to the chemo, he will have either 20 weeks of the same kinds of chemo, or they will add two new drugs and continue the therapy for 30 weeks. He will start physical therapy shortly after the surgery as well.

The chemotherapy involves three drugs: Cisplatin, Doxorubicin, and Methotrexate. The first two he takes together and receives an infusion at the hospital. He will have a break of about 2 1/2 weeks and then will return for an infusion of Methothrexate. Although the Methotrexate infusion only lasts for about 4 hours, he stays in the hospital for 2-5 days until it is flushed from his body. He'll come back the next week for another round of Methotrexate and then start the cycle again.

What are the side effects?
There are so many side effects that it is downright scary. The main ones are nausea, vomiting, hair loss and mouth sores. A serious result of the chemo is that it kills off blood cells and so they keep very close tabs on those. He will have to come in for blood transfusions when his red blood cell and plama counts are very low and when his white blood cell counts are low, he is at risk for infection. The docs say that all patients at some point end up in the hospital with fevers and are treated for a bacterial infection--some more than others. Let's hope it is infrequent for Steven.

Will he be able to go to school and church?
The doctors really encourage us to keep life as normal as we can. He can go to school if he feels well and his white blood cell counts are high enough. He will need to avoid crowds, especially when his counts are low, but can always go outside.

How is he doing?
He started with the chemo on Thursday and has done a lot of sleeping. He doesn't feel like eating and has thrown up a few times. I can tell that he is nervous and scared about what is going to happen. He understands that he needs the chemotherapy to beat the cancer and finds some solace in the video game console in his hospital room. Right now he is listening to music on his iPad and has been smiling. But mostly he has been sleeping the last few days.

How are you doing?
I can't even begin to describe how scary and nerve-wracking the last week has been. I have never in my life been so scared. The first and second days were by far the worst. Slowly, I am trying to come to grips with this new reality. I really have felt the love and prayers of so many of you. To make this week even harder, we found out that my little sister's melanoma is back. She has been a huge support for us and even for Steven. They are determined to beat cancer together.

What can I do to help?
We really will need help. We are looking at lots of hospital stays in the next year. I really do have a great support system between family, church and friends. Thanks for all the prayers and thoughts. Everything is so helpful. As far as Steven goes, he loves cards in the mail, comments on the blog and facebook, visits (these might be limited depending on blood counts and things), and phone calls from his close friends and family. Thank you, everyone, for your concern. This is going to be a very hard year.

Steven's orthepedic surgeon said to him, "People ask me, 'Will I be the same after this is over?' I tell them, 'No, you won't be the same. You will be so much stronger. You will be awesome. "


  1. You're already awesome, Steven, so I can't even IMAGINE what you'll be like next year! We love you so much!

  2. We love you. Steven you are a strong boy. God knows how special you are.
    Grandma B

  3. Steven, I love the battle title. You're going to beat it. Here's a quote from Winston Churchill it reminded me of:

    I have nothing to offer but blood, toil, tears and sweat. We have before us an ordeal of the most grievous kind. We have before us many long months of toil and struggle.

    You ask what is our policy. I will say, it is to wage war with all our might, with all the strength that God can give us....

    You ask what is our aim? I can answer in one word: Victory. Victory at all costs. Victory in spite of all terror. Victory however long and hard the road may be.

  4. We love you guys and we're praying very hard for both Steven and his Auntie.

  5. Thanks so much for the blog. We love you guys so much and are thinking about you all the time. Way to go Steven for being so brave. Seth talks about you a lot and prays for you too.

  6. We love you. Steven you are a strong boy. God knows you are special.
    Grandma B

  7. Sonja, Steven, and Family. Ivan and I just read the blog and wanted you to know how much we've been thinking of you and praying. Dylan and Ella (even though she hasn't met you yet) are praying with us. We just wanted you all to know how loved you are! We still think that Steven is one of the smartest kids we've ever met!
    Love, The Tornes Family

  8. We love you all and we are praying for you. We will do anything we can to help, just let us know. Thanks for this blog, we were hoping you AND Steven would do this so we can always know what is happening.
    Love, Brent and Lindsay

  9. Steven- if you can handle Alex, you can do anything!! We are always praying for you and thinking of you. If you're ever in need of a sword or lightsaber fight, give us a call!! Keep smilin!

  10. Steven, we are Carter's grandparents in California. We are praying for good things for you. The Browns

  11. Steven, Thanks for having a blog. I'll come and see you again. Love, Grandpa

  12. Steven,

    Glad you've got your boxing gloves on! Fight hard!
    You'll be first on our visiting list the next time we come to Utah.
    Your family is definitely one of our favorite families!
    Love,The Bergesons

  13. Steven, I am an old friend of your mom and aunt Alisa... I am rooting for your progress each day and will be a faithful follower to your blog! You have oodles of love going your way!

    Love- Jon, Lindsay, Belle and Sam

  14. casiiiinneljkkkn ....that was Tyler saying he can't wait to play with you when all this is over. You are so brave and we're so grateful Tyler has such an amazing cousin to look up to. We love you, Steven.

  15. We are sending you lots of love from here in Ohio! We will be fasting for you this next Sunday and praying for you. Steven, you are such a brave kid.

  16. Steven,
    We think a game you should buy for your ipad is Cut the Rope. It's really fun. You are really brave. We have a picture of you on our fridge, and we pray for you all the time. Eric is jealous that you have an ipad.
    Eric, Lauren, and Thatcher

  17. We love you guys! Steven is a fighter I can tell! Please let me know again if I can help at all. Make sure you and your hubby make time for yourselves once in awhile to so you can continue to be strong for your family! I can watch the kids anytime or be with Steven at the hospital too! Lots of love and preayers your way!

  18. The Shumways in Kentucky are yelling, "Go! Fight! Win! Yeah Steven!" We miss and love you all.

  19. thanks for answering all those questions.. hopefully it will help you process what you are going through as well. Life changing and so scary!! it hurts so much to grow and learn this much. a day at a time.. slow and steady wins the race.

  20. Steven I'm your mom's aunt. You probably don't remember me but your mom does.
    I'm so glad you are doing this blog. It should help everyone being informed without having to tell what is happening over and over again. The first days of a crisis always seem the worst. You have to get through the initial fear and dread but then you when you start to fight things seem more even and doable. It is alright to hate some days and be mad as well.
    Sonja I know how to babysit and I can come down and help you out whenever you need me. I think there are not only many praying for Steven from here but I'm sure Grandma and Grandpa Johnson are very interested in him from the other side. I remember how much they loved him when you were staying with them in Providence. Grandma kept saying what a bright good little boy he was. We all think he is tough and brave.

  21. Hey Steven! You are one tough kid, holy cow!

    I work with your Dad (sort of, up in Canada) and everyone here is totally rooting for you while you're receiving your treatment.

    Got to say - great blog name! You are a real inspiration for anyone who is going through a bad time too. I hope that you are feeling okay today, and please know that lots of people are thinking about you and your family and wishing you the best!


  22. From Ben:

    I hope that you can beat the cancer fast and get better soon. I have a Mario Bros. hat that I want to give you. I'll bring it by when you're feeling good.


  23. Steven
    We bought Paul and Jill's home in Paradise 20 years ago. We have loved it. Our daughter had a cancerous tumor in her leg 13 years ago and we went through a similar experience as you're going through. She's now 25 and there's no cancer in her leg. She just got married and is doing really well. So will you!

    Diana Ralphs

  24. Hi Steven,
    I want you to know that I'm thinking about you and wishing you the best as you fight this battle! Thanks for the blog to keep everyone informed - it looks like you had a great time in California. Keep up the fight. We are sending lots of good thoughts your way from Morningside!
    Mrs. Bramble

  25. Hi Sonja, My name is Dani and I am Jill's sister in law. I saw this and had to send a few words of encouragement! When I was 17 I was diagnosed with Synovial Sarcoma. Very rare and like your sons found mostly in children and adolescence. If he is at Primary Childrens then he is in very good hands! That's where I was treated and still love going for check ups to visit with the nurses and Dr.s who helped save my life.
    My tumor was 10 cm and wrapped in the main nerve line of my leg. Yes it's messed a lot of things up physically for me but you learn to compensate and go on as if it's normal. I can't tell you enough how many miracles you will witness during this hard time. It also brings the family together like nothing else can. As awful and strange as it sounds those were very happy times, now that I look back. It's hard to see that at the time and probably not so much for the family members but let me tell you God will take care of your son, protect him and have angels round about him constantly. Seen and unseen. I have NEVER before or after this event felt so loved and close to my Heavenly Father. I swear my spirit was on the other side of the veil while my body was taking the brunt of the nasty stuff.He will be protected! If it just get's to overwhelming stop and pause and know that there are miraculous things happening around you.