More Scans...

(From Monday) As we wait for our appointment at Children's Hospital, Kelby is playing trains with other children that are waiting. There are people from all stages of this difficult walk. Parents walk in with tired sick children in their arms. Other bald headed children wait and play with a little more energy. Everyone has their own story. These stories can impact the lives of others. One such family is that of little Michael that we've been seeing everyday at radiation. My heart has hurt for their family since the first time I saw them. They reminded me of us when we first found out about Kelby's cancer...the raw nerves, the tender hearts. Time makes you stronger...or harder. I'm not sure which or if it could be both. It is harder for me to watch them than it is for me to have Kelby there. Little Michael reminds me of a big Anika. Please, as you pray for Kelby mention him too. His parents are strong, sweet, gentle people that long for prayer from as many as possible just as we do. I wish I could know everybody's story. I wish everyone know mine.

Kelby has made a friend in the waiting area. Precious is her interaction with others on her own. She starts kindergarten in September. I wonder how she'll handle herself. Her spirit is sweet and strong. I'm sure she'll triumph, though I want to protect her from hurt feelings and other difficulties she'll endure without me. But, we must begin to let go at some time.

I am feeling more anxious today. It is a physical feeling that I have...I'm not even thinking about anything, I just feel anxious...

(From Tuesday) This update was started on Monday, but didn't get it done until today. I spent the evening last night ''redecorating" the website to give it a new look. I just did my kitchen in orange & pink gerber daisies because they are cheery. That seemed appropriate for the site too.

We got into our appointment right away yesterday. I told Dr. Park about these mystery pains of Kelby's. Since she is going out of town next week for 2 weeks, she thought it would be a good to do a couple scans before she leaves town rather than waiting. So, tomorrow after our last round of radiation Kelby will have a bone scan again. She'll also get injected for another special scan that they will do on Friday. That scan is called an MIBG. It is a radioactive isotope that is picked up specifically by neuroblastoma...most of the time. I gather that in about a quarter of the cases, it doesn't pick up at all. The MIBG results we are hoping for would show pick up in her arm, but no where else. If it doesn't show up anywhere, then the scan will be worthless. If something else shows up already then we'll know that this is going to be spreading quickly and we won't be able to keep up with it just by radiation alone. So, after we get the scan results, we'll be discussing further some of the available studies. There are some experimental medications that do not have the harsh side effects of traditional chemotherapies. They are at least systemic where the radiation is only local. The problem is that they may or may not help us in any way. Also, we can only get these medications if Kelby qualifies for the study, meeting all their criteria. Some of the studies specify that you have to be out from radiation a couple weeks. If the treatment we choose isn't effective or the side effects are not good, we can choose to stop at anytime. We may have to get Kelby to take a bunch of pills and visit the doctor at Children's more often...but that can't be worse than driving down there everyday for 3 weeks. Hopefully by the end of the week we'll have a better idea of what will be happening.

Besides all this cancer stuff...I'm excited to have a day off on Thursday! What will I do with myself, with the girls? We'll probably have to go to Costco...but that's okay...that's real life! I am glad I got the website redecorated. Now I can work on some other project. I always have to have some kind of project. God forbid I should relax. I don't know what is wrong with me and why I can't just relax. Maybe I feel my most relaxed right after I finish a project. Okay, so I guess that means that as soon as I post this update I can relax! Bye for now.