Welcome Sophia Hope Bell!!!

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

Saturday, December 30, 2006

Blog Layout Change

If you'll notice, we have added a slideshow of images of Madelyn on the right side of this site. This is fed from Picasa (Google's web photo album site). If you click on the pictures you can view them better. We'll periodically update the images for all of you to see. If there's one or more that you like, you can order prints. The images are high resolution, so most of them would be of great quality up to 20x30.

Here is a link directly to the Web Album if for some reason the feed blips.

Thanks for continuing to support Madelyn.

The Bell Family

Thursday, December 28, 2006

Maddy's First Chrsitmas is in the books

Christmas was wonderful! We had lots of family around and Madelyn had a blast. She's developing so well. She is very close to rolling over. It should not be more than a week now. She's flinging the leg for momentum and has a very determined look on her face.

We removed the bandage from her surgical wound over her liver. I have seen lots of stuff as a medic in the army and working in ICU departments, but for a closed wound this one bothered me just a little. The edges are a little jagged, but that is probably due more to the way its healing. It is larger than I expected, but still not bad. I just think what we would be looking at had they chosen to operate on her chest, and feel relieved with what we actually did.

Sheila and I talked last night about Madelyn's condition. Sheila stated that when she looks at Madelyn, she doesn't see a "sick" child. I told her, however, that I do. It's odd to me how I look at her. I see her almost at a cellular level. There are things in her body that aren't supposed to be there. Her eye is really drooping at times, and you can't help but wonder if the eye is getting worse or if the sympathetic nerve pathway will ever be the same. If I haven't explained how her eye is related to her condition, let me do that now.

The tumor in Madelyn's chest started from her sympathetic nerve chain in her chest. It IS the nerve, not a tumor near is that presses on it. The sympathetic nervous system is the part of your nervous system that controls things you don't think about. When you open your eyes, you don't think about opening them equally. When you look at a bright light, you don't think to constrict you pupils to allow less light in. When its hot, you don't think about sweating. The sympathetic innervation (nerve connectivity) to her left eye and cheek have been interrupted by the nerve growing to become a tumor. If these tumors stop growing, there is no guarantee that the chain will return to 100% function. When the doctors originally said they were going in to her chest to possibly resect (cut out) the tumor in her chest, if they had done this, the nerve would be gone and it would never be right again. Right now we don't know how it will turn out even if the neuroblastomas stop growing and change to ganglioneuroblastomas or ganglioneuromas.

It seems petty to think about her having normal eye function when her life is technically still in danger, but you want your baby to be as normal as possible. When I think about her growing up and beginning her socialization, I worry that anything not seen as "normal" will cause her problems. Children can be cruel, and I have read where adults are still dealing with the psychological impact of having a droopy eye. Within 10 minutes, we heard conflicting statements from two surgeons on whether she would grow out of this, and the surgeons are partners in practice. Its not my research. As I said, it seems petty but what else can I do?

Right now, we are waiting for the results of the genetic analysis from California. The doctors don't expect anything back before next week. We may have an MIBG scan next week. In this test, they would inject Madelyn with a radioactive isotope of Iodine that usually bonds well to neuroblastomas. The purpose of the test is pretty much to see how well MIBG works on her tumors and how effective this will be as a future diagnostic test.

It scares me to death to think that right now we are just waiting and this thing could be growing. Again, I think about this at a cellular level. Are there more neuroblast cells today than yesterday? Are there less? Are the cells maturing as we hope? We aren't in a hospital, no one is sticking a needle in my baby, but part of me felt better when we were actively doing things versus waiting. I do trust our doctors, though, and I have faith she'll be fine but the waiting is torture.

Thanks to all of you for taking the time to visit the blog and for your continued prayers and well wishes. We love you all and you continue to inspire us with your kind words and outporing of love. The best part of our day is when Sheila gets a text message on her phone that a new message has been posted. We read them aloud to each other, often looking at each other and saying, "Who is that?" because you have told so many people about Madelyn and people we have never met before are stopping by to wish Madelyn well. I can be pretty cynical, but this is amazing that people still care.

The Bell Family

Monday, December 25, 2006

Merry Christmas!!!

Hi everyone! We hope your Christmas has been as enjoyable and memorable as ours. We went to mass this morning at St. Joseph's in downtown Columbia. Madelyn was sound asleep when the organ fired off the first notes of music, and she only returned near communion for a brief appearance. The congregation sang "Silent Night", which she seemed to enjoy probably because I sing it for her all of the time.

We had dinner this afternoon at Ron and Patty's. It has been your pretty standard Christmas, which is great compared to what we have been going through.

Thanks to everyone who continues their vigilant prayers for Madelyn and our family.

Happy Birthday Jesus and Merry Christmas!


Sunday, December 24, 2006

Christmas Eve is Upon Us!!!

If you notice a little number to the right of this post, I added some code to track visitors to the site. 30 unique visitors yesterday and 19 so far today. And I have been slack posting new info, but its not completely due to laziness. We are enjoying time at home with Madelyn, something just a few short days ago we didn't think would be possible. Thanks be to our Lord Jesus Christ.

I have also changed the settings by which you leave comments. You no longer have to sign up with Google to leave a comment. You can leave an anonymous comment, but please leave something to identify yourself so we know who has been by.

Madelyn is pretty happy. She has had a little trouble getting back into the routine we worked so hard on. Friday night she was up 4 times and pretty unhappy when she was awake. She slept most of the day of surgery, so this is kind of expected. Nothing we can't handle though, and far and away better than sitting in a cold hospital room watching her vital signs.

We went out yesterday for a few hours of shopping. We avoided the crazy areas (Sandhills, Columbia Place, HARBISON) and ventured to Camden. I am still in shock that Sheila left her yesterday, but uncle Ronnie and aunt Liz did a great job.

The retail part of Christmas has been largely forgotten this year, which in itself is a blessing. Through all of the stuff we've gone through recently, we should come out of this Christmas in better shape than usual. The doctors encourage us to be hopeful that this disease will go into spontaneous remission because everything looks so good. We've spent less money than we usually would during this time. We didn't have time to do anything but concentrate on Madelyn. All things considered, this is the best Christmas ever.

Today we are getting ready for Santa. We'll most likely go to Christmas Mass tomorrow. Thank you for your continued support through prayer, phone calls, and an abundance of well wishing cards. We'll try to keep things up to date. Until we get the results of the tumor biopsy back (projected for the 1st week in January) most of our posts will be about Madelyn and her development. She is close to rolling over and seems unaffected by the surgical wound on her belly.

Thank you for stopping by. We'll post more again tomorrow.

With our sincere wishes for a truly blessed holiday season,
The Bell Family

Friday, December 22, 2006

Bone Marrow is Clear!!!

Dr. Neuberg just called to say that he looked at the marrow biopsy himself and we were still waiting on some more stains, but her marrow looks to be free of neuroblastoma or if there is any involvement, it's definitely < 10%, our critical marker. We are going to wait to talk to him, and he should be around before 1:30PM. At that time, we'll discuss followup visits and the plan of action from this point forward.

Continue to pray for Madelyn and our family, please. The reason why I state the obvious is because whatever all of you are doing, it is working. We picture all of your faces, bowing your heads to pray for our little girl. I imagine you all praying at the same time, and everyone's thoughts and prayers seem coordinated, traveling to God's ears. I wonder if the sheer strength of the signal is why our little Madelyn is doing so well. I think God is pleased with the movement that all of you have begun in support of Madelyn.

The future is still uncertain, but undoubtedly today is the happiest day of my life.


We're Going Home Today!

Yippee!! Dr. Adkin's (our Surgeon) came in this morning to tell us that she is doing great. Eating, peeing and pooping, no fever and seems completely normal so there is no reason for us to stay! Dr. Neuberg our Oncologist came in as well and said that we do not have the results of the bone marrow biopsy yet...within the next hour or so. We are waiting to get the results of that. If it is negative for cancer...then obviously that is good and we are staged as 4S, however, if the results are positive that the cancer has spread to the bone marrow and it contains 10% or more, then we are staged as a 4. Let's pray for negative results!!!

We will update later when we find out!

Thursday, December 21, 2006

Maddy's First Meal Post-OP

Okay everyone...baby girl has eaten a little and is doing very well. Of course now, after getting to eat, we have seen a big smile on her face and as she sleeps she sighs w/content. Oh yeah...guess what is happening to the extra gas from anesthesia...yep you guessed it!!!:o)

Just wanted everyone to know we are all doing well and hanging in there and thank you again for all of your thoughts and prayers!

Post-op update

We have moved to room 1022. It's a little larger than 913, so we're sprawling out. We asked for and received 7 pillows. Sweeeeet!

Madelyn's vitals are strong. She has no fever, so infection is not a concern at this time. She is receiving IV fluids to maintain her volume. She frequently wakes and grumbles. Her throat is scratchy from being intubated. She was extubated in recovery and breathing fine on her own and her O2 saturation levels are great. She appears to have some discomfort and the staff is controlling her pain with Tylenol. No narcotics, just Tylenol. I flash to how different this would be had they gone through with the thoracotomy.

Around 6PM she took her first fluids by mouth, starting with 3 oz of Pedialyte. She kept that down pretty well. Dr. Reddy came in and wrote orders for us to run a trial feeding. She hasn't consciously smiled yet on the outside, but considering my girl hasn't eaten in almost 24 hours, she is definitely smiling on the inside!!!

IF for the next 24 hours...
1. Madelyn does not develop a fever over the next 24 hours, AND
2. Her pain begins to subside and can be effectively controlled with Tylenol, AND
3. She has nornal I/O (inputs and outputs...you figure it out)
I feel pretty confident she will be coming home with us by Saturday.

We should find out more about the bone marrow biopsy tomorrow. At this point we have stopped hoping it will not show involvement with the bone marrow. We have unwavering FAITH that it will not.

Again, we cannot thank all of YOU enough for your continued prayers for Madelyn's remarkable recovery to continue.

With much love for our friends and glory to God for all His blessings,

The Bell Family

Surgery Goes Well

First things first...Madelyn went into surgery at 9:04 AM and as of 12:10 PM is out of surgery, through recovery, and is comfortable in room 913 at Palmetto Richland Hospital. Sheila, Kaitlyn and I are accompanied here by Ron and Patty Chrestler (Sheila's parents), Betty Lunsford (my Mom), Ron Chrestler (Sheila's brother) and Liz Nield (Ron's girlfriend). Friends of the family April Braswell and Jim Selbee stopped by to offer support (THANKS!).

Now that you know that she is OK, I must tell you about what has happened so far today. For those of you have prayed for Madelyn, please read this post in it's entirety. The effects of your efforts and God's grace (get it, Grace?) can be seen today.

We left a little late for the hospital, but considering we got everything done yesterday as far as pre-registration, we had some time to spare. We arrived at 5:40 AM and went to the designated area on level 3P.

We proceeded as planned and everything went smoothly as we were moved around 6:20 to the pediatric holding area. We remained there waiting for anesthesia to come by and explain their role and the plan for sedation and then for Dr. Adkins and Dr. Reddy to come by and discuss the preliminary plan going in to the OR.

We had a little friction with the anesthesiologist due to some of our questions regarding Madelyn's care during the procedure. I take some responsibility for this. I am a details guy. Its what I do. My questions may sometimes be rhetoric to help me gain a comfort level with someone. The point is, we were looking for some assurance that everything had been covered. During the winding down of this conversation, Dr. Adkins came in to, as he said, "Complicate things a little". Having not heard the results from the bone scan, we braced for the bad news.

Dr. Adkins had taken last evening as an opportunity to review the MRIs again and consult a colleague from Memorial Sloan Kettering Cancer Center named Dr. Michael LaQuaglia. According to Dr. Adkins, he is widely known as one of the premier pediatric oncology surgeons in the country. We learned this morning that the bone scan showed no evidence of bone involvement. This most likely puts Madelyn as a stage 4S. Any bone involvement would have made her a level 4 and a high risk patient.

So, having learned this and taking into account the negligible gain made by attempting to biopsy/resect the tumor in her chest, Dr. Adkins and Dr. Reddy felt it was best to biopsy the liver rather than perform a thoracotomy (open chest). The primary tumor is near the aorta, but no evidence exists to suggest that the tumor is involved with surounding tissues. We would be looking at a lower risk, equal reward biopsy as the liver shows multiple lesions and is considerably more easy to access. This less invasive procedure gives us a calculated improved risk over the thoracotomy. That is the facts.

The truth is that the last minute deviation from the strategy we discussed not 36 hours earlier took us for a loop. We talked it through as we do, verbalizing the pros and cons to both. We accepted Dr. Adkin's recommendation and they got with anesthesia to change the sedation plan accordingly.

Madelyn moved to surgery at 8:45 and her procedure began at exactly 9:04. Plametto Richland uses a paging system similar (exact) to those in most popular restaurants. We knew where she was the whole time.

Funny thing happened next. Surgery was over. It took about 10 seconds for you to read the words above "and her procedure began" and that her surgery was over. It seemed that quick to us as well. This was good news. She was still waiting for Dr. McRedmond (Pediatric Oncology) to perform the marrow biopsy. Dr. Adkins came out to see us, and we met with him with no idea what we were going to here. This man had just seen my daughter's liver. Not on a scan, but up close and personal.

From here to the end of this post, read it very carefully because if you are a person who has lost faith, prepare to get it back.

Dr. Adkins described the tumors on Madelyn's liver as nodules he expected to find similar in size to blueberries, but instead presented more like macadamia nuts. having never had the disposable income to throw $9/lb on NUTS, I asked him to simplify it for me. Well, macadamias are larger. So, as you read, you're thinking that larger is bad. You are thinking wrong.

Cancer cells act, as describer by Dr. Adkins, as juvenile delinquents. As they grow, sometimes they mature. This is what we are looking at. Cells that are maturing into less delinquent cells, ones that are less harmful. To summarize, in Dr. Adkins gross (eyeball) examination, it was better than he expected. Aggresive neuroblastomas do not do this.

We still have to wait for more definitive results to come in on the MYCN gene amplification, hyperdiploidy, cell histology, etc. The current prognosis as stated by Dr. Adkins and Dr. Neuberg is:

Assuming the bone marrow biopsy shows no neuroblast tissue and the histology of the liver biopsy tissue is favorable, we will most likely be in a "wait and see" pattern. The liver tumors are not very vascularly involved (veins and arteries), and appear to be maturing. We will watch the tumors closely using imaging tests (X-Ray and MRI) as well as urine levels of VMA and HVA. What we expect is going on is that the tumors are maturing and may spontaneously cease growth. If this is true, as Madelyn grows, the tumor in her lung may go away on its own. That means no chemotherapy, no resection, no radiation.

Reality check: Madelyn still has active neuroblastomas in her body. It has metastasized from the primary location in her chest cavity to her liver. She is 3 months old.

We will earn more this week as the results of the bone marrow biopsy come in. I expect those to be negative. Regardless, I believe I am in the presence of a miraculous works by my Lord Jesus Christ.

Thank you for your prayers for Madelyn. She continues to recover. We are by no means out of the woods. Madelyn has cancer. I also believe these doctors are telling us honestly what they see, and they see a disease that appears to be yielding to a stronger force.

More updates to come.

Message to the Friends of Madelyn

(Some of the information we provided about today is duplicated here. This is the content of an email we sent to friends and family. If you did not receive the email, I apologize.)

Today we had the final pre-op labs and her bone scan. We won't find out the results of the bone scan until the morning, which is when she goes to surgery. It has been moved up to 7:30 AM on Thursday 12/21/2006. Right now here's the plan.

Depending on the results of the scan, if there is nothing seen in the bones then the tumor resection will probably be less aggressive than if the bones are involved. If the bones are involved, then the resection will probably be a little more aggressive, but not to the point where her life would be put at significant risk. The exact plan for resection cannot be finalized until they can visualize the tumor in her chest. We must determine the involvement with surrounding tissue such as other organs, blood supply, etc. So, let's assume the best...

If there is no bone involvement, then the resection of the tumor will most likely be less aggressive. The tumor in the chest cavity is the primary tumor (where this all began). Depending upon the results of the biopsy, the treatment may range from a wait and see to beginning chemotherapy in the near future.

Tomorrow, when Madelyn comes out of the OR she will be moved to pediatric recovery. When she is through there she will most likely move to the Pediatric Intensive Care Unit (PICU). She will be listed in the directory at Palmetto Richland, so when she is assigned a room you may try to reach us there if you can't get us by cell (poor coverage in the hospital). She will most likely be hospitalized until Christmas Day at least.

Kaitlyn is here with us as well. She is hanging tough. Her love for her baby sister is very evident and please keep her in your prayers as well. She's growing into a beautiful young woman and we wish that she did not have to be exposed to this part of life yet, but the situation is what it is.

This is our prayer tonight...
Dear Lord,

Thank You for being with us in this, our time of need. We pray that Your will is that this child shall come through this critical procedure well and closer to a full recovery. We pray that You be with us all tomorrow. Lord, we pray You will be with Madelyn every step. We pray for our physicians, that they possess their full capacities in mind and dexterity in their hands. May You bless everyone working to see this child through this terrible disease be equally blessed.

Lord, please be with our family and friends. May You keep everyone's thoughts positive and please, make Yourself evident to those who don't know You. Your presence has been so apparent to us since learning of Madelyn's illness. The movement that has begun in support of Madelyn and our entire family is of such magnitude, no one can deny Your work. Tonight, hundreds if not thousands of people including countless people we have never met are praying in Your name for Madelyn to be rid of this disease. Their support is the simplest and most powerful love we can know. They expect nothing in return for their prayers, time, or money and give to us because they love us. They love us as You told them they should.

Lord, our spirits are lifted and our faith is strong and this is all because of You. In times like these it is easy to lose sight that others have needs and may be going through trials of their own. Lord, please be with them as You have been with us.

In Jesus Christ we pray, Amen.

Tomorrow, your faces and kind words of support and prayer will sustain us through the endless waiting.

May God be with you all,

The Bell Family

PS - We did this blog in a kind of catch up mode, entering a lot of information in the last day or so but we kept the post times accurate to the timeline. From here forward, we will try to post timely information, so please use this as your primary source of information on Madelyn's status. Feel free to post comments for our entries. Madelyn looks forward to hearing from you.


The bone scan is at noon, and I call in the morning to do all necessary steps for pre-op. I ask about labs, specifically a type and cross for replacement blood, and I am assured that she will be and blood will be on hand should the need arise. Bleeding is my primary concern. So, we also learn that at noon, the nuclear medicine personnel will inject her with a radioactive isotope which will be used in the scan to identify potential involvement of the bones in this disease. Then the tracer, as it is called, absorbs into the system for a few hours and then the scans are done at 3PM. We coordinate for the labwork and injection of the isotope to be done concurrently to attempt to minimize Madelyn's discomfort. Our good intentions are for nothing as the nuclear med staff is cinfused by the change in protocol and the nurse who attemots to stick her fails to get access to her veins in two tries. The nuclear med tech Ryan tries for Madelyn's 3rd stick and pulls it off nd we get the blood we need and inject her. Total time: 1.5 hours. We'll return at 4 PM for the scan.

In the meantime, I cram some food in my face and we visit Outpatient Surgery to pre-register and talk with anesthesia. We head up to the 9th floor where the PICU is and try to understand the logistics of where we will be until Madelyn moves into her own room.

At 4 PM we return. Madelyn is not sedated. She is, however, strapped in and restrained. Anyone who knows Madelyn knows this is a no go. Her arms must be mobile, and especially her hands. They go straight to her mouth lately, and she was very unhappy. Luckily for us, if you look at it that way, she was so upset during the blood draw she eas exhausted and went to sleep rather quickly. We stepped out to check voice mail and make some quick calls to get Kaitlyn, my 14 year old daughter, here so she can be with us. We returned and I looked at the monitor. The scan is not radioactive like an X-Ray. Quite the opposite. Madelyn is radioactive and the cameras see her radioactivity. I am no sure how it works, but the scan appears rather simple. Everything is black and radioactive partcles show as white dots. Small white dots are present on the screen and some appear to be normal. I focus on what appears to be some concentrated areas, but then remind myself, "You don't know what the hell you are looking at!". She wakes during the scan, and I sing her to sleep to complete the study. We head home after finding out we won't know the results until the morning. I am concerned that the technician sees something and will not tell us. I am concerned that they are afraid to tell us on the phone. I remember that regardless of the results, the next step is surgery and that is quite serious and requires my full attention. I travel to Florence to meet Kaitlyn and Kelli andreturn home by 8PM. Sheila's brother and girlfriend have arrived from NY and we have spaghetti before settling in for the last "normal" night with Madelyn for a while.

Through all of this, she has been so normal. She shows no sign of illnes and continues to develop normally. She would have rolled over in the next few days. We'll pick up there again soon.

Wednesday, December 20, 2006

The surgical consult

I go to work and plan to meet Sheila at the hospital at 2:30. We arrive at Dr. reddy's office and he again talks to us like adults and oozes of confidence. We are realistic about our the situation but cannot help but be hopeful.

For the first time, we hear that chemotherapy is not a predetermined component of Madelyn;s treatment. We are scheduled for a bone scan on 12/20/2006 at noon. Here is what we took from the meeting:

If there is no bone involvement as identified in the bone scan, then the procedure to biopsy the tumor, previously understood to be a possible aggressive resection (surgical removal) of the tumor, may be less aggressive. If there is involvement, then aggressive resection of the primary tumor inthe chest would be considered keeping in mind that her success in surgery is paramount. If this occurs where there is no bone involvement, depending on what is found in surgery we may be in a "wait and see" mode. WOW! The fact that chemotherapy may not be a foregone conclusion is a surprise to us and our spirits are lifted. If there is bone involvement, then cheno would most likely be in order, but we have been prepared for this all along. So there is no bad news in my mind, only reality and wht we are going to do to cure my baby.

We had been working on the plan that surgery would be on Friday. We are surprised to get our OR date moved up to Thursday at 7:30 (less than 36 hours from now). Drs. Reddy and Adkins will both be in on the surgery, and by this time I can hardly restrain my hopeful thoughts.

I again look at Madelyn. I love this child. Sounds ordinary and common but it is anything but. I have asked to trade places with this child so many times. In a short while, she will be lying on a cold operating room table with a tube in her throat, a chest tube for drainage, and a scalpel approahing her skin to open her chest cavity to the open air. I have never experienced this. I am 34 years old. She will be 3 months old tomorrow. My heart truly aches. I have had pain in my chest today. I am undoubtedly sick about this and only pray that God's will is that this child will someday know how much her mother and I love her and grow up just as we envisioned when we asked God to bring her to us.

Tuesday, December 19, 2006

The initial oncology meeting

We were told we wold meet with Dr. Laura Pirich. We did some research and she did her pediatric oncology fellowship at Northwestern and got to work at the Children's Hospital in Chocago, rated in the top 10 of all children's oncology centers in the US. Good news. We ended up meeting with Dr. Neuberg instead and felt pretty comfortable with him and understood we would be working with the knowledge and experence of the entire team, so we are OK with the deviation from our expectations. We learn that we are still in the diagnosis phase and cannot begin treatment until we understand the full extent of the disease and "stage" it. To begin this, we will do a bone scan this week and get a biopsy of the tumor in the chest as soon as possible.

Dr. Neuberg allows us to see the scans for the first time. I am surprised by the size of the tumor in her chest as it relates to her heart. Not much difference. Then we look at the liver. There are multiple lesions there and my heart breaks more. I look at my precious angel and am reduced to rubble again. Dr. Neuberg encourages us that treatment, when successful, will address this and I try to not lose faith. We need to run a repeat VMA and HVA test on her urine and Dr. Neuberg discusses surgery with us. Sheila is a realtor, and her broker in charge is a former pediatric nurse whose husband is a pediatric endocrinologist at the hospital and he recommended Drs. Reddy or Camps. Dr. Reddy agrees to break protocol and accepts us as his patient. We are encouraged. We have nothing against any doctors there, but a someone with professional knowledge who recommends a colleague is as good as gold. We are to meet with Dr. Reddy on Tuesday 12/19/2006 and we can hopefully schedule surgery Wednesday or Thursday.

Dr. Reddy calls us at home @ 8:30 and we discuss his findings from the scans and we are more pleased. He exudes confidence and at this time, this is what we need. We'll meet tomorrow but he assures us that he can operate on Friday, 12/22 at noon or before. This is happenening quickly.

Monday, December 18, 2006

12/16-12/17 - The long weekend

Calls and visitors turned out in droves and the weekend was nothing but research, prayer, and fellowship. We anticipate the best and he worst and eagerly await Monday as we can meet with the oncologist and begin to formulate a plan to save our baby.

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