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
4 comments:
Madelyn
We will continue to keep you in Prayer.
You are a Sweet baby girl
God Bless you and your family
My family and I are keeping you in our thoughts and prayers. We wish you all the best in life and know that God has a plan for Madelyn...she's an angel on this earth!
Hello, my name is Michelle Ugarte and I found your blog through my Google Alerts on Neuroblastoma. My daughter was diagnosed with Neuroblastoma on 11/08/2004. She was 18 months old at the time. She had similar biology as Madelyn, Favorable Shimada, MYCN non amplified and I can't say that I have heard of the DNA Ploidy. But it sounds like you have the odds in your favor. I'm not sure if you have found this "list-serv support group yet, but if you haven't there is a wealth of knowledge to be found with all of these families that are going through the same thing as you. Here is the link to the support group if you are interested : http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=n-blastoma&A=1
Well, anyways.... You can visit our blog to see the links to the many families that have been affected by this horrible disease. My daughter is now almost 4 years old and cancer free. She has been since May of 2005 when her tumor was removed after 7 rounds of chemo. We are having a MRI tomorrow for regular check up and the MIBG on Thursday and then the Bone Scan on Monday. We are praying for continued good results. Since she had good biology it is very rare that it will come back, but like you said, you can never be sure.
Well, if you decide to join the list, you will find that doctors are apart of the list, parents of children who are going through treatment right now, parents of children who have finished treatment and unfortunately there are the parents who have lost their little ones to this beast. But if you aren't comfortable with the way things are going with your daughter, there are MANY MANY other people on the list who can give you advice during this difficult time.
I will add your blog to my site so I can check back on your family. I will keep Madelyn and both of you in my prayers.
Have a wonderful evening.
The Ugarte Family
Hi, I found you through Michelle! I just wanted to say "Good Luck and God Bless! I will keep your family in my prayers!"
Your video of her rolling had me cheering and crying also... I remember when my little one (20 months now) was just at that stage. I told someone that THIS is what it meant to be a parent, you want SO bad to fix it, help her but the best way to "help" is to let her do it herself and it KILLS YOU! I remember being SO proud... funny how they change your priorities, triumphes ect huh? LOL Anyway, watching the vid I thought... I want another, so thanks for THAT! LOL
I will keep checking back in hopes of more good news... and cute videos. Maybe I can live vicariously through ya'll??? LOL You will understand that statement in a few months when she becomes even MORE mobil, it starts with rolling over and THEN... look out, with in a few days I think she could roll anywhere in the house under 2.2 seconds! LOL
Hugs- T
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