Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Tuesday, February 13, 2007

Update on VMA/HVA levels

On 1/30/2007 we had our followup visit after getting new MRIs. At that time we took some urine for her regular VMA/HVA levels. For those of you who forgot what those are, click here to review. Her levels on 1/8/2007 were:
VMA: 223
HVA: 160

From her urine on 1/30/2007, both levels have risen sharply. Her new levels are:

VMA: 911
HVA: 423

Upon speaking with Dr. Ron we discussed the results, which initially floored us. The rise was to be somewhat expected because her liver is larger, so there is more neuroblastoma tissue in her body. Sheila and I just didn't expect this much.

Madelyn has a little bit of an upper respiratory infection right now (from me, sorry). She hs a mild inner ear infection and has some fluid in her nasal passages and throat. Otherwise, she is developing so well. On 2/12, her weight was 17lbs 6.5oz. She is doing everything well.

Dr. Ron says that our main focus is her behavior and her general presence. The main things we are watching for are difficulty breating (assuming she's not sick with a cold) and her appetite (which is great right now). If we see any behavioral changes in these areas, we'll have to revisit our current treatment plan. Right now though, we are staying the course.

I noticed a vein on her right side over her liver and remembered seeing a picture of a 1 month old infant with hepatomegaly (liver enlargement) secondary to neuroblastoma and the skin on the abdomen was very thin and vascular (lots of veins). Sheila and I talked and we are going to begin taking pictures daily of her torso and I want to start measuring her abdomen. Her torso will increase in circumference due to normal growth, but I want to measure her all around, then center line abdomen to center line of her spine for each side. While the circumference should increase, it will help us know how she is changing bilaterally and we can chart out both the circumference from center line to center line aswell as monitor the ratio between the two. We hope for a normal progression and regression, but looking at her is so subjective. To say it looks bigger gives no quantification, and those of you who know me know that I am a details and number guy. No one as said to do this, but its free and can indicate changes that we should know about. Seeing her everyday makes it difficult. This should help. At least we can do something because these 3 weeks between visits are killing us.

We missed church Sunday because Madelyn was sick, and we didn't want her exposed to new infectious stuff or to bring her maladies into the nursery at SeaCoast.

I am coming to the end of my time at TSFG (2/23 - last day). I am really going to miss those guys and I hope we'll stay in touch, but I am a realist. I promise to make an effort, and this is a record to remind myself to do so. For all of the things that may frustrate me about the job, I do love the people. I'll be starting at Blue Cross Blue Shield (round 2!) on 2/26/2006. I would have liked to take some time off, but we really can't afford to not earn as much as we can while the getting's good. Sheila is doing fantastic! She and Debbie Thrash have "inherited" a subdivision and they are busy getting organized to market the heck out it. Sheila started really pressing because of the time she had to spend with Madelyn over the holidays and during the diagnosis of this stuff. Like any sales job, aany dry period takes time to recover, but she's on the right track.

Thanks for all fo your continued prayers and support.

The Bell Family