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.

Rick

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!

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...
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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.
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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.

HECTIC!!!!

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.

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.

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.

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.