Tuesday, September 28, 2010

Day #6

I'm posting twice today since I didn't post anything last night.

Our day started with a visit from Dr. Rosen (the oncologist) with the results from the bone marrow aspiration. They confirmed that he has ALL type B. They also confirmed that there are no cancer cells in his spinal fluid. Both of these are good things. ALL is the most common and the easiest to cure of the types of leukemia. There are other details that I'm sure the doctor knows but we don't. I told him that I don't want information from him on the prognosis. I'm more concerned with understanding the treatment plan and assuming that it will lead to a cure. Starting today, his is in a 28-day induction treatment period. The chemo will be fairly intense, with the goal to have 99% of the cancer cells gone after the 28 days. He will then continue through the rest of the treatment - the total plan is 2 1/2 years. We'll need to put off some things that we had scheduled for October like his birthday party and visits to Grandma's new lake house. We'll just postpone them until later.

His back was really sore today and he had about 45 minutes when he said his tummy hurt. We tried to go down to the playroom, but he wanted to go back to the room before we got down the hall. He spent most of the day in his bed and hosted visitors. His friend, Kyle, from church came to see him and played for a while. He also watched a couple of movies.

In late afternoon, he started the induction therapy. They gave him a steroid pill (which he'll get 2 every day for the 28 days), and a chemo drip through his central line. There are signs on his hospital door that warn about the hazardous chemicals. They have to double-bag his dirty linens and anyone who may come into contact with his bodily fluids has to wear special chemo-proof gloves. It's really strange to think that everyone has to be protected from the stuff that is being injected into my child. He is still on a fluid drip and has potty about every 30 minutes.

His Aunt Juli brought him a special package. It's from There's a Monkey in my Chair (http://www.monkeyinmychair.org/ ). It's an organization started by a mom whose daughter had brain cancer. The concept is that the monkey goes to school on the days the sick child can't. Katherine will be taking Joey's monkey to Tree House tomorrow.

He had some friends and his sister visit tonight. He was very sick of being in his room, so we went to the floor lobby. Whenever he leaves his room, he now has to wear a mask. Since he can't walk well yet and has to pull around his IV, we put him in a wagon to pull him to the lobby. He was still able to have fun and eat a chocolate shake from his grandpa.

I noticed a little boy walking around the floor who obviously has cancer so I introduced myself to his mom. He just turned 5 in July and was diagnosed with ALL last Feb. He also has the same doctor. I think we'll be getting to know him and his family well. He is the boy of the year for the Wichita chapter Leukemia Society this year. He is here this week because he was having headaches and his platelets are really low - getting more blood transfusions. It was a picture for me of what our next year may be like. His mom is very upbeat. I may try to spend some time talking to her tomorrow.

We may be going home on Friday afternoon. I'm ready to be home, but I'm also nervous. While at the hospital, I know he's safe. I'm not sure what it's going to be like to live with this at home. The doctor said he may be able to go back to preschool next week, but I'm not sure he knows that Joey is usually there full time. I'm not sure how I feel about it. It's going to be hard to keep his life as normal as possible while I'm also very protective of him.

We are feeling pretty good most of the time, which can only be a result of the multitude of prayers for us. I've never experienced anything close to this before - being part of something so painful and scary but also something so sweet as seeing the body of Christ come together to lift up one little boy.

Playing checkers with Amber

His monkey

Playing with Kyle

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