Monday, February 28, 2011

Was it a dream?

On Saturday night at the hospital, my sister came to visit Steven and stay with us for the afternoon. She's been through cancer before and is going through it again, so she helped Steven download some of her favorite fight songs. It was brilliant to get him some music--why didn't we think of that? It cheered him up quite a bit.

Last night he said to me, "Mom? Was I imagining this? It seems like I remember that Alisa came to the hospital and put some music on the Ipad." I showed him the music and he laughed at himself that he didn't remember.

Maybe we'll wake up and all of this will just be a dream.

Sunday, February 27, 2011

Home sweet home

We are home from round one of chemo! There was some question if we could come home because Steven has been running a slight temperature. When he caught wind of that possibility, he was pretty bummed. All morning he has been asking me "When do I get to go home?" We got home a few hours ago and he got to take a shower. He sat on the heater vent--one of his favorite places. He's sitting on his chair and feeling much better being unhooked from his IV and wrapped in his own blanket. It feels so good for me to be home with my other kids--I've missed them.

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. "