Welcome Sophia Hope Bell!!!

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

Friday, January 19, 2007

Update - VMA/HVA results

Hi all, and thanks for visiting! I have noticed that visitation to the site has waned a little bit. I know you're all busy and we appreciate those of you who take time out of your busy schedules to stop by. With us in a wait and see mode now, there are fewer medical updates then before. We will continue to keep you up to date on her continued development.

Sheila and I are a little concerned with her liver. She seems to have some enlargement, but this is sort of expected. We received the results of the VMA/HVA urine tests performed on a specimen drawn on 1/8/2007. VMA (Vanillylmandelic acid) and HVA (Homovanillic acid) are end-products of the catecholamine metabolism related to neuroblastoma. For our situation, this is a non-invasive way to monitor Madelyn's disease. Between the raw values found in her urine and the ratio of the two, doctors can deduce how her disease if progressing without radiation (although we will be doing MRIs every 6 weeks to visualize the tumors). The values we got today were

VMA: 223
HVA: 160

The only value we had from before was a VMA of 359. Obviously this is a significant drop, but use caution when reading this. The initial results from urine taken on 12/13/2006, were sent from Palmetto Richland to Quest Diagnostics, a local laboratory. The Oncology group sends their VMA/HVA tests out to another lab, and this is where the most recent results came from. SO, in our minds, the recent results are our baseline. We'll have a repeat VMA/HVA every three weeks, ad we'll document those results here. While there is nothing that indicates we should read a lot into the decrease we see from the two tests, at least the value did not increase. If this decrease is as it reads, neuroblastoma can still progress and we could see a future increase. While this is a good non-invasive test, it is used by our Oncology team as a reference point and not a sole indicator of Madelyn's disease. All disclaimers aside, we were happy to hear that the results were in and did not indicate anything we should be concerned about at this time.

ACTIVITIES: Sheila bought Madelyn some Baby Einstein books today. She LOVED the book of colors, and we established a while back that her favorite color (as determined by her physical reaction) is red. The first page is red, and she absolutely lit up when she saw it.

FOOD: Madelyn is in her third day of peas. She makes this awful face, but after a few spoonfuls moves toward the spoon to shorten the distance to her mouth. We're still deciding what the next food should be. Please vote on your favorite using the poll on the right side of the page.

Sheila has been working regularly, and both grandmas have been pitching in to watch her. Having them both nearby is a God send for us. I probably should tell them that in person since I've told the entire WWW.

We are getting into a regular schedule for church. We were members of Seacoast (http://www.seacoast.org) in Mt. Pleasant when we lived in Charleston. We attended the Columbia campus and loved it. It is a great environment to worship. If you enjoy music, friendly people, and a straight-forward message then we encourage you to attend Seacoast near you. If you don't live near a campus, they have Podcasts for you Ipod users, Windows media files for download, and a new Internet Campus (currently in Beta).

Enough for now. We'll post more good news soon. Thank you for keeping us in your prayers; you are in ours. Next visit is 1/30/2007 for an MRI and physical exam.

The Bell Family


Anonymous said...

Hi Bell's,
I'm so happy that things are going well for you all! I think about little Madelyn everyday! Such a big girl - rolling over by herself!! I can't believe that you've gotten her to eat peas...quite an accomplishment. We tried to give Anna Claire peas on several occasions, but she makes a horrible face and then spits them out all over herself, me, the kitchen wall, etc. The ONLY way I can get her to eat them is if I put a little in sweet potatoes. I was hoping that sweet potatoes would be a choice on your poll, but it wasn't so I'm casting my vote here. Try sweet potatoes!! I think I could give Anna Claire ANYTHING as long as it's mixed with sweet potatoes. Also, I don't know what brand of food you are using, but after trying several I found an organic one, Earth's Best, that is really good & Anna Claire seems to really like it. They have a lot more variety & food combinations than Gerber did. Anyway, your family is constantly in my thoughts & prayers. As always, if there is anything you need-please don't hesitate to call.
April Braswell

NB Warrior said...

Happy Friday Bell Family!! =)

Glad to see you guys are getting encouraging news with the VMA/HVA results.

I tried sending an email to Sheila regarding getting help with signing up for the list-serv. Let me know if you still need help.

I agree with April, Peas was the first thing we tried with our little David recently and he was not to happy with it. I unfortunately can not see your poll on the site, but it might be that I'm at work right now and I'm surprised that I can even view these blogs. From Peas we went to Green Beans and then to Carrots. He hasn't really liked anyone of those, but I keep trying! =)

Well, if you guys don't have anything to say on her status, keep us updated with pictures or some more funny videos! Love em!! Keep them coming! =)

Michelle Ugarte

Anonymous said...

sheila, rick and madelyn, thanks for the update, and yes you most certainly need to tell the grandma's how much they are appreciated. this coming from a grandma myself. lol. the babe is growing , her world is expanding. try the hard cover animal books, my grandson ethan, 3 months old loves them, they have so many colors for them to look at. he is in total awe of them. i'll bet maddie will enjoy them. baby einstein is an excellent choice also. prayers are continuing. never let yur guard down. and everyone PLEASE continue with the prayers. they are so powerful. love jackie w.

Anonymous said...

Rick - nice oinking. I loved listening to her laugh. I forgot how much fun it is to hear that whole belly laugh. Love, Erica

Anonymous said...

Hi Bell Family,
We are first time bloggers from Norfolk, Va. Our daughter in Columbia, Cindy, asked us to pray for you. She also introduced us to this page. Carolyn has shared the information with the Ladies Prayer Group (Sisters in Faith)at Cornerstone Baptist Church. They meet each Friday, but lift you up constantly. If Carolyn were to vote on the veggies, She would vote for the carrots or for sweet potatoes. Bob would prefer to skip the veggies and have some ham! As grand parents many times over, we may be choosing which baby food we eat soon!
Love the pictures! Especially the loli pop!
Keep the Faith!
In Christ's Love
Bob & Carolyn

Mitchell said...

Hi Bells!! I am so happy to hear about Madelyn's test results. I am praying for her every night and you guys too!! I love her pics. Give Madelyn and the dogs a kiss for me..xoxo
My favorite veggie was squash..
Grandma is great, I know that too!!
Love ya, Mitch

Anonymous said...

Ricky and Shelia,
Our prayers are with you and we love you and your little one very much. If there is anything we can do please let us know. Be strong and know that Madelyn will pull through this. Both of you and Madelyn are in God's hands, all you have to do is believe. Keep us updated!