Weekly Update

Well, not too much to update this week. This was my first week back to work. As it stands I am going to go to the office Tues, Wed, and Fri. and work from home Mon. and Thurs. Rick's mom watches her in the morning until 2pm when she has to go to work, then my mom watches her until about 6pm when I get home. It's definitely been an adjustment for both of us. I hate leaving her, but I have to get back in the saddle and start making money to pay for the Doctor bills that are starting to roll in. What a catch 22. She's sick so I want to spend every minute with her, but because she's sick I have to leave her and go to work to make the money to pay for her treatment. She's been pretty fussy in the evenings too, so I know she's not adjusting to it too well either. Although, Miss Thing did start eating baby food this week. We had carrots last night and tonight for dinner and she LOVED it. I tried them and they aren't too good, but I guess when all you are used to eating is milk, any change is pretty tasty. Boy, wait until she gets to try chocolate and ice cream and all the wonderful things in life! She hasn't rolled over since that first time that we caught it on video. She's on the verge again, and if she would stop sucking on her fingers and use that arm to push herself up, she would have it no problem. She's pretty funny to watch, b/c she has her momma's temper and gets so mad. She's learned this neat new thing...screaming at the top of her lungs with this high pitched scream which I swear is so high pitched, all the dogs in the neighborhood can hear it like a dog whistle and come running! So she uses this neat little tool that she has learned to express her frustration when she can't push herself completely over.

I spoke with Oncology yesterday. We are scheduled for our 1st MRI since diagnosis Jan. 30 at 8:30am. Then they will do her physical exam that same afternoon at 2:00. We will post the results when we get them of course.

Again, we just want to express to all you who visit this blog daily, email and post comments, how much your sweet words and encouragement mean to us. I can't tell you how many times I have started crying with either happy or sad tears at the wonderful things you all say. We love all of you. PLEASE KEEP US IN YOUR THOUGHTS AND PRAYERS, IT REALLY IS WORKING!!!!

Sheila

The Treatment Plan....for now anyway

We met today with one of the Oncologists at Palmetto Richland, Dr. Laura Pirich. We had a full physical exam. Madelyn is 16lbs 5oz and 25 inches long.

At this time, with everything coming back so well Madelyn's prognosis is very promising. Neuroblastoma more often than not regresses in infants with favorable conditions like Madelyn has, but there are no guarantees. The plan from here on until something changes is to have a physical exam every three weeks and an MRI of her chest and abdomen every six weeks. At three week intervals during the physical exam, we will draw blood for standard CBC and Chemistry profiles and periodically we will check urine catecholamines (VMA and HVA) that can be indicative of changes in neuroblastoma. We may see some progression of the disease before it regresses. We cannot be sure that this disease has peaked or stopped, so close attention is required.

The primary tumor in Madelyn's chest can grow to press on her spinal cord, so we have to watch for signs and symptoms. More likely, her liver can become enlarged due to multiple tumors and press upward on the diaphragm which would make her breathing a little more stressful. We'll take it day by day.

The next appointment is 1/29/2007 where we'll do a physical exam and MRI in the same day to try to minimize these trips to the hospital.

My plan for the blog is to keep posting Madelyn's normal development information (due next: sitting upright) and post new pictures.

On another note, we are trying to get some of your contact information together so we can update our records and there are some thank yous we want to get out as well. For those of you who submitted Madelyn's name for a prayer list, please send Sheila an email (sheila.bell@gmail.com) with your info and the church name, address, and point of contact so we can correspond with them too. Sheila and I plan on visiting as many of these churches as we can with Miss Madelyn to show those who prayed and continue to pray for our family the power of prayer.

Thanks to everyone for your continued support.

The Bell Family