Welcome Sophia Hope Bell!!!

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

Thursday, December 21, 2006

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.


Unknown said...

God is SO very good! You don't know me but I know Leesah. She had asked me (and others) to pray for your daughter, and we have. Earlier this morning I told her "With all those prayers going up, God is bound to answer them". He is so faithful! I will continue to pray for Madelyn and her maturing cells. May God bless you and your family with continued miracles this coming year!

Stacey said...

What a blessing! The power of prayer is amazing! Your precious Madelyn has been in the thoughts and prayers of lots of people. Your family has made such an impact on so many people. We will continue to pray for all of you! If there is anything we can do, please let us know.

Stacey and Jason Starnes

Cheryl furman said...

Our prayers and thoughts are with you all at this difficult time. We love you all with all our hearts and Madelyn is going to be just fine. Tim and I have faith in the miracles of god. You two are very special people to us. We are so happy to hear that she is doing well after surgery. We love you.

Cheryl & Tim Furman

Bridget said...

I am so very happy to hear that things are really looking up! Yeah!! If Miss Madelyn is half as tought as her Mommy, she will come out of this stronger than ever and with a smile on her face!! Your entire family, including Kaitlyn, the Chrestlers and Mrs. Lunsford, have been in my thoughts and prayers daily! I wish there was more I could do than just pray but right now, that's seems to be the best thing! I know that this time next year Medalyn will be healthy and happy and rooting for the Steelers with her Daddy!!

I love you all!!
Bridgey :-)

yammy23 said...

Rick, Sheila, Katlyn & Amazing Madelyn,

Amazing Madelyn who has brought joy and laughter to her family.....now brings strength, courage and miracles....our prayers and thoughts are with you.

Roy & Yasmine

Amanda Lynn said...

I am an online friend of Tina's, and my heart has ached for Madelyn and your entire family since Tina sent out the request for prayer. I, along with many others, forwarded that request to many prayer chains, and as you are seeing now, the power of prayer is an amazing thing. There is no way to ever know how many people have your little one in mind these last few days. Continue to stay strong for Madelyn as you have. May God continue to bless you and your family now, and forever.

Lesah said...

Rick, Sheila, Madelyn and Kaitlyn,

I'm so glad the surgery went well. Please know that you are in my heart. I know that I am far away, but please know if you need anything..please call.

I love you all.

Dieterly Family said...

What an amazing, amazing day! I have been waiting for an update on Madelyn and your family, wishing and praying that there was something more that I could do. But as I sit here with tears running down my cheeks I realize that the greatest thing that we could give you all is the gift of prayer and love and healing. And not just in body but in spirit. No one can read this and not believe in the power of God and miracles! May you continue to feel the power of the Holy Spirit as he moves in your lives this Christmas and throught 2007 and beyond.

Merry CHRISTmas indeed!

David and Glenda Dieterly

Unknown said...

Rick and Sheila,

I certainly want you to know how very much you guys are in Jenk's and my thoughts and prayers. As you very well know, The Lord has Madelyn Grace right in the center of His powerful hand...right now!! and He will keep her there forever!! He also has His powerful arms around the entire Bell family and His hugs are filled with Love, with Courage and most importantly with Healing for Madelyn...I can just feel it and I know you can also...Our love is with you and you both know if you need anything, please call us...God Bless you all. Now, let's get Madelyn well and at home!! Sounds like a good plan to me....We love you...Jenks and Colie
ps Sheila...I'm using my "gmail" account...thanks to you and Rick!!

Unknown said...

Sheila and Rick,

Daniel and I have had Madelyn and ya'll in our prayers constantly! I have also started a prayer circle throughout most of south georgia and the carolinas :) and I know it is helping. We will continue to think of ya'll throughout this time.


Annie Lee and Daniel

Samantha O'Rourke said...

I was very happy to hear from Kaitlyn that the surgery went well. Madelyn wil still be in my prayers and I pray that Madelyn holds a very healthy and happy future.

Have a Merry Christmas!

And I Love You All, and will be in my prayers!!


Becky Dillon Priester said...

Praise the Lord Almighty for your wonderful news !! We will continue to have Faith and Pray !!
Merry Christmas !

Anonymous said...

I am so happy to hear some good news here! She is precious! I hope the good news continues to pour in on you guys. I will have special prayers sent your way often! Let me know if I can do anything for any of you!! Cyndi and Seth

Anonymous said...

Our daughter was born at 29 1/2 wks. and weighed only 2 lbs. 15 ozs. I had to have an emergency c-section, and she was cut as the doctor hurried to get her out. She stayed in the hospital for 2 months, and had to get 2 blood transfusions from her daddy. As a firm believer in St. Jude, we placed the prayer of St. Jude in her plastic incubator. We had 5 churches praying for her, and after 2 months and many prayers, Savannah finally came home. She is a healthy, bright, beautiful nine-year-old now. As someone once told me, "God only gives you what he knows you can handle." We will pray for you, and please know that God knows that you can handle this. Our prayers are with you. (We are former members of St. Joseph's)

Audra Dowell, audradowell@hotmail.com

Anonymous said...

Dear Bell Family,
Our daughter was born at 29 1/2 wks. and weighed 2 lbs. 15 ozs. She needed oxygen, two blood transfusions, and we were told the day I was leaving the hospital that she may have a brain tumor or may have some sort of complications. As I started to cry, I asked my husband that if God were to choose two people that He thought could handle this, would He choose us? We both agreed that we could handle whatever He threw our way with His help.
We were lucky enough to have 5 churches praying for us, and people of all denominations that gave their prayers and support. As a firm believer in St.Jude, we kept the prayer taped to her incubator. She was cut on her stomach as the doctors hurried to get her out during my emergency c-section. After two transfusions and many delays, she finally came home, and her brain filled in normally. She is now a healthy, bright nine-year-old. Someone once told me that "God only gives you what He thinks you can handle."
I know that it's difficult to believe, but I truly believe that God chose the two of you for a reason, and one day, He will reveal to you why He did. We will keep you and your precious angel in our prayers.

By the way, we are former members of St. Joseph's.

May God bless you,
Audra Dowell, audradowell@hotmail.com