Welcome Sophia Hope Bell!!!

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

Saturday, December 16, 2006

First Post

As most of you are reading this as something I referred you to through conversations, phone calls, or emails, I have to thank you for just showing up. I had done some "blogging" but never committed to it because I find myself doing so many other things. Well, that has changed. The purpose of this blog is to serve as a resource in keeping my friends and family updated on the condition of my beautiful baby girl, Madelyn. In the chance that some of you don't know us very well or at all and are here to read about our journey, let me begin by filling you in on who we are.

My name is Rick Bell and I am married to a great young woman, Sheila. We are your typical yuppie family living in central SC. We have a pretty good life. Good friends and family. We met in 1996 and married in 2003. In 2005, we decided we wanted our DNA to mingle and see what we could make. After some effort, which included the use of some pharmaceutical assistance, we conceived in December 2005. Our due date was September 23, 2006. We were having a girl! Time flew by, and many times my wife wondered aloud, "Will I be a good mother?". All we wanted was a healthy baby, and on September 20, 2006 we got what we asked for.

Madelyn Grace Bell was born 7lbs 9oz and was 19 3/4 inches long. She has the feet of a 3 year old, but we figured that would work itself out. Everyone who saw her said what we knew, "She's perfect!". We took her home on September 22 at an average speed of about 25 mph.

After she was home, everything was great. Her initial visits for post partum checkups all went well. On October 17, 2006, we noticed that her left eye was a little red and swollen. Having served in the Army as a medic and working for a few years in different intensive care units, I figured just what the doctor would order - rule out conjunctivitis though topical antibiotics.

We followed this treatment for the defined period and saw no improvement. We asked to see an eye doctor and were referred. We visited the eye doctor and we continued the same treatment but changed topical antibiotics. We returned after a week when we were told by the doctor that it appeared to be getting better and to give it some time.

With my background, I was OK with staying the course. My wife Sheila, however, was not as patient as I was. We called our pediatrician and got an opthalmic eye drop (as opposed to an ointment) to see if we could get better results and the physician obliged. Another week and and no improvement led my wife to request a visit with a second opthalmologist.

On December 12, 2006 we visited Dr. Ed Cheeseman with the opthalmology group at Palmetto Richland and USC School of Medicine. I did not attend this appointment as I had to work. My wife was excited about the possibility of getting a new perspective on what ws going on with our daughter's eye and returning those beautiful eyes to normal. She called me at work at about 9:30 AM. She said that Dr. Cheeseman wanted to rule out Horner's syndrome. I had never heard of this, so I performed a quick web search. I scanned through and quickly determined that the root causes for this were all pretty significant. The most common cause in children Madelyn's age is injry to teh brachial plexus, a nerve in the sympthetic chain that affects innervation to the face and eye. The sympathetic nervous system is that which we don't control. Mdelyn's eye was "drooping", not swollen. Her pupils were not evenly dilated. Her left eye was not the same color as the right. We don't control these things willfully. Hopefully that explains it.

I rushed down to the doctor's office to hear it for myself. When I got there, Dr. Cheeseman had given her 1 drop of Iopidine (aproclonidine) in each eye to test his diagnosis. When I arrived, Madelyn's eye was normal. Her pupil was dilated. The lids were equal. Unfortunately, this meant she did have Horner's syndrome.

The doctor advised us that this is primarily the result of injury during delivery. She would have normal vision, and could possibly have plastic surgery to releive the drooping. That upset us because the psyche of a young child, especially a girl, is deeply affected by their appearance and self esteem. He also said that we needed to rule out any other causes. The primary one he felt was worthy of mentioning was a condition called neuroblastoma. We scheduled MRI scans of her head, nack, chest, and abdomen for Friday, 12/15/2006.

That night, Madelyn was not herself. She was lethargic and cried terribly when she was not sleeping. Possesing a healthy appetite, we was concerned when she really didn't wake for feedings. We did not know at the tme what the drops were that she had been given, so we called the hospital and were connected with Dr. Cheeseman who advised us to take her to the children's ER at Palmetto Richland. She was admitted and watched until Thursday as she began to return to normal Wednasday night.

We returned to the hospital on 12/15/2006 for the MRI scans. We sat impatiently awaiting Madelyn's return. She came back to us and was crying, so her recovery from the conscious sedation (chloral hydrate) was going well. Shela fed her and all was well. We were told that the scans with contrast could not be completed because Madelyn woke as they were to inject the contrast. I asked if we would need to come back Monday, and the nurse said, "They may have enough information". An incomplete test that finds nothing must be completed, so we were immediately concerned that something was wrong.

Dr. Cheeseman cam in to speak to us and gave it to us straight out. Madelyn has neuroblastoma. We were devastated. He went on to explain that she had a tumor in her left chest that measured almost 4cm across in her middle back area. They suspected some local lymph node involvement. What almost stopped my heart was when we were told her liver was involved. We had read briefly about NB, but this meant something: it had spread to the other side of her body. I almost dropped her in grief as I exploded when I asked for clarification. "Do you mean tumors in her liver?", I said. When told yes, I was crushed.

We were set up with a appointment with the pediatric oncologists on Monday, 12/18/2006 and managed to drive ourelves home after about an hour of just soaking this in and holding Madelyn tighter than ever before.

This is the day our life changed forever. Subsequent posts will be made as often as we can to bring everyone up to date as contacting everyone is impossible. Feel free to make posts here in support of our baby girl.

Thank you and God bless,
The Bell Family

1 comment:

The Preister's said...

I am reading your story from the begining as time allows and just wanted you to know that I can feel your pain in your words. Your story feels like our story somewhat...the fear of the unknown and the greater fear of the known.

I am glad to hear Madelyn is NED, as our daugther Charli is now. However, even when in NED status...it is still hard to grasp sometimes.

God Bless.