Tuesday, September 29, 2009


Summer Babe
Madelyn during treatment with her big sister

Another cutie pie, another story of hope and faith and trust...meet Madelyn.

Here is the beginning of Madelyns story:

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

Initially Madelyn was diagnosed with Stage 4s, but later testing revealed she was in fact stage 4, and therefore required chemotherapy as part of her treament plan. She recieved 4 rounds of chemotherapy and the MIBG scan continued to light up slightly in her chest area, so it was decided to do another 4 rounds of chemo. Madelyn was declared NED in August 2007! Praise Our Lord!

Madelyn still continues to go for regular scan check ups, her latest being in August, and as you will see from her latest post, she remains NED and more scans are needed for the foreseeable future!

We continue to pray for you Bell family and that your gorgeous Maddy will continue to remain NED forever and always! Sending you hugs and love and support always!

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