Phew...lots to update!

Well, first of all I apologize for not updating before now. Things have been really hectic w/work & everything else. Anyway...we did round 2 of chemo. It was a long day, but my mom and dad were there with Rick and I. Thank goodness for the Starbucks Kiosk in the Heart Center, YEAH! She tolerated the medicines very well. Towards the end she started getting sick and vomiting, but they gave her an injection of the antinausea medicine with her fluids and she was as good as new. She was happy and eating fine. We continued the antinausea medicine for the next two days and she never once vomited or acted like she didn't want to eat. We finally met the third doctor, Dr. Kevin McRedmond on the day of Chemo. He is part of our team and he knows all about Madelyn, but we have never actually met him. He talked with the other 3 doctors and they all decided because Madelyn's Neutrophil count stayed so low for so long, we would start giving her injections of Neupogen. This medicine won't keep her counts from going down, but will help them rebound faster. Rick has been giving those to her every night before bathtime. I just can't bring myself to give her a shot, so I leave it to him. Not only is it a shot, but the medicine burns when it goes in, so we try to hurry up and put her in the bathtub so she can be happy again, it seems to be working.

As you can all see from the new picture above, I took her to get her Easter pictures last week. I must tell you all, the dress she is wearing is one that she picked out herself. I found 2 dresses that I loved, the one above and another one. I liked the other one better, but they both looked cute on her. I couldn't decide between the two, so I held them up in front of her and asked her which one she liked. I couldn't keep Madelyn from grabbing the one above...I think she liked the polka dots.

On Sunday we had the baby dedication at church. It was really nice. Betty (Rick's mom), my mom and dad, Rick, Me and Madelyn were there in front of the church. Pastor Larry asked Rick to tell the church about Madelyn and everything that is going on. He did really well talking about the technical stuff, but when he started talking about the emotional stuff and thanking the church for their prayers, we all got very emotional. Madelyn did really well, she was quiet and just kept looking at the lights and stuff and at the end, she waved bye-bye all by herself. It was really cute.

We were scheduled for lab work on Monday and Thursday this past week. With the Neupogen shots, Madelyn's ANC counts have been very high...which is good. They bottomed out at 72 a few weeks ago, and on Monday her counts were 2083. We thought this was very high, but apparantly with the Neupogen shot, normal levels are around 10,000, so as of yesterday her count was 3064, so we still need to go up more.

Blue Cross Blue Shield has a program set up for "Critical Care Patients" which are patients who have long term illnesses and a lot of high dollar claims. We were assigned a Case Manager, Rebecca, who will be our advocate between BCBS, the hospital and anything else we need her for. This is great because there are so many claims, EOB's and bills coming in that we can't keep them straight. She will do research for us if we need her to, she provided us with some financial support info. that we need to apply for. She really is great and best of all this service is FREE!!!!! We met her on Tuesday and she will follow up with us every week to keep up with Madelyn's progress and to see if we need anything. She couldn't believe how advanced Madelyn is.

I also forgot to tell you all last week one day, it was about 5:00am, Madelyn woke up to eat, but didn't scream like she normally does...she was just laying in her crib playing and TALKING...that's right, over the monitor I heard those words that I wish I would have heard second to "MAMA"..."DADA". Yep, so all she says now is "DADA", but the way she says it is so funny, she gets so high pitched and says "DADA". So, I of course contemplated waking Rick to tell him, b/c just the day before we were betting on what she would say first. I woke him from a sound sleep and told him to listen to her and do you know what he did? Threw his arms up in the air and screamed "I Win". He didn't remember that part when I asked him about it later that day:o)

Tuesday night we noticed that Madelyn's neck, where one of her incisions were was red. We watched it on Wednesday and kept taking her temperature, but it seemed to get worse. It was red and had a knot under it. So Thursday when we went in for our routine lab work we asked to see the doctor. Dr. Kevin waited for her blood counts to come back and sure enough her white cell count was up, due to the absess in the incision. We are on antibiotics 3x's/day for 7 days and topical ointment the same. It seemed better today and not as red, so hopefully we can get that cleared up w/no other problems.

WOW, this is a lot and I am sorry for waiting so long to update, but as you can see we have been pretty busy. We are scheduled for MRI on 4/9. Madelyn will have to be sedated so it will be an all day thing at the hospital. Rick and I were concerned about having this MRI if it wasn't going to change our course of treatment. After her not holding her oxygen levels when she was sedated when they put in the portacath, we were concerned about putting her to sleep again for an unnecessary scan. All 4 doctors met Wednesday about Madelyn and conclusively agreed that it was necessary to see the progress of the chemo. The way Dr. Kevin explained it was that we need to make sure that the tumor size is shrinking completely, and if we did it only at the beginning and the end, it for some reason it got a lot smaller, then grew before the end, we wouldn't be able to see that w/only a scan at the beginning and the end. Rick and I feel better about the purpose of the scan, but are still really concerned about sedating her. They will schedule round 3 of chemo after the scan, so we will let you know when we do.

Also, please visit Kerith Bell's site. A girl I went to school with was at church when a woman stood up and starting telling a story about a 6 month old little girl diagnosed with stage 4 Neuroblastoma. Her counts were down so they had to postpone her second round of treatment. My friend went up to her after church and said "you are talking about Madelyn Bell?" and the woman said "no, Kerith Bell." I visited her site and it is uncanny how similar our lives are. I spoke with Jessica, Kerith's mother and we are convinced that we are living parallel lives, her in NC and us in SC. Please keep Kerith in your prayers as well!

We will update and let you all know how everything is going. We are sorry for being so slack. We appreciate your thoughts and prayers.

All our love,
The Bells

Blood Counts are back up!

Sheila here. Well I got back into town late last night from going to NY to my Aunt's funeral. I was sad that it was so late, b/c I knew that Madelyn would be sleeping. As much as I wanted to run in the house and snatch her out of her crib and kiss every bit of her chubby little face, the mom in me talked me out of it and said "if you wake her up, she may have a hard time going back to sleep". But as luck will have it...she sensed that I was home and woke up just before I crawled into bed at about 2:30am. So I got to feed her and love on her. I swear I am NEVER, EVER leaving that little girl again until she goes off to college!!

I took Madelyn to the clinic today to have her blood counts done. I am always so nervous about bringing her to the hospital, b/c if her counts are down and she is so much more suseptible to catching things...I am just amazed that I have to bring her to the place that sick people go!!! Anyway, her counts are back up. Her ANC count last Thursday was 72, it needs to be at least 750 for them to do the next round of Chemo, her count today was 1053. Everything else was up too:
White: 7.2 last week to 8.1 this week
Hemoglobin: 11.2 last week to 11.1 this week
Platelets: 462,000 last week to 604,000 this week

With all that being said we are moving forward with round 2 of chemo tomorrow. We have to be at the Clinic at 8:30 in the morning and can expect to be there all day. The drugs that are being administered tomorrow are Carboplatin, Cyclophosphamide and Doxirubicin. We should be able to see the MIBG scans from 2 weeks ago tomorrow as well.

Little Madelyn is still her same happy, gorgeous self. She has learned to wave bye-bye and is sitting up longer and longer on her own. I can't believe that she is going to be 6 months old tomorrow, stinks that we will be celebrating at the Oncology Center. She is starting to loose her hair. It is really rough and brittle and is rubbing off in the back where she lays her head. It is the same bald spot that she got when she was real little, but this one is bigger. Looks like we will be using the cute little hats I bought for her afterall. Well, tomorrow is going to come very early and is going to be a very long day. I will close for now, but we will update on how she does tomorrow. Please keep us in your prayers. Pray that Madelyn will be just as strong through round 2 as she was through the first round. Pray that she will tolerate the 2 new drugs they are introducing and she will continue to tolerate the old drug that they used in round 1. Pray that all of this that our family is going through will a thing of the past as we move on to a very long and happy life with beautiful, brave, baby Madelyn!!!!

We love you all,
The Bell Family

Update - Chemo is postponed

The second round of chemo has been postponed. Madelyn's counts came back Wednesday the 14th and her ANC was 72, down from 270. 270 is very low, so you understand how bad 72 is. The good news is her other counts are good. The plan is to check her counts again Monday the 19th and if her ANC is above 750 we'll do chemo Tuesday the 20th.

Otherwise, she is doing well. No fevers. Her spirits are good and she is pretty normal.

Sheila's great aunt Velma passed away Thursday morning. Sheila flew up to NY for the funeral. This is her first time being away from Madelyn and she is hating it. I asked my mom to stay with me for assistance. I am pretty sure I can handle it, but I think it makes Sheila feel better. Now at least she knows I am not feeding Madelyn Cheetos and beer. Sheila is flying in to Charleston Sunday night, and I am sure it will be a reunion to remember.

I want to send out a public "Thank You" to my uncle Sam and aunt Dianne, Dianne's mother Edna, and Bethlehem Baptist Church in Conway, SC. I received a letter from Sam and Dianne on the 17th and enclosed were 3 checks, one from each of them. I can't thank them enough. More so than the money, they have been in contact and praying for Madelyn and our family which is always needed. People ask how we get through this. It is through the power of all of the prayers that lift up our family. It is our intent that when Madelyn is well enough to be out to visit everyone that has helped our family. We receive prayer grams in the mail all of the time and we do read each and every one. It is humbling how awesome people really are. I used to look at the world in such a cynical manner, and I still find myself in shock at some of the atrocities that occur in our world daily. I do, however, have a view into the nature of the goodness of people and am thankful that there are people who love one another because that's what God wants us to do.

I'll update again Monday evening when we know what we are doing next.

With much thanks and love,
The Bell Family

Repeat Blood Counts and MIBG scans

So, we have more blood counts.

The ANC (Absolute Neutrophil Count) is normally >1800. Madelyn's was 1610 on 3/1/2007. It is now in the severe range of <500. Neutrophils are the precursors to white blood cells. Without them, new WBCs fail to be created and she is at a very high risk of infection. So we are to avoid taking her out and no one who is sick in the slightest can be in contact with her. We have to call the doctor if she has fever of >101 or two temperatures >100.5 twice in the same day. Unfortunately, her count only has to be >750 to be treated, so she almost definitely will not be back to full ANC by Thursday the 15th, her next scheduled chemo. We anticipate that she will be immunocompromised for at least the next 2 months.

Madelyn had her MIBG scans this week. It consisted on administering the redioactive iodine isotope and letting her body absorb it. Ideally, the neuroblastoma cells will absorb it well and irradiate in the scans so we can understand everywhere the disease is in her little (19lb) body. We'll have the results when we return to the clinic on Wednesday the 14th.

On a positive note, her lymph nodes are noticably smaller.
On the other hand, her hair is becoming brittle and is starting to fall out.

I need to jump off of here. I'll post more tomorrow.

Love
The Bell Family

First Blood Counts post-chemo

All of Madelyn's counts were good on 3/1, but this is the time where they will continue to drop. We have another appointment on 3/5 to do repeat blood work. We are giving her the Lugol's solution, which is simply iodine tincture. This is to protect her thyroid from the radioactive iodine required for the MIBG scans. We will have 3 days of scans 3/6-3/8. We're not sure when we'll have the results. These scans should show any neuroblastoma in her body. This depends on how the neuroblastoma tissue takes up the dye. The reasons we are getting this done is that now, since she has started chemotherapy, the tumors may actually change and the neuroblastoma tissue may start to go away. It is not possible to differentiate between a tumor with NB or one that has shifted to another type of tissue. So, the MRI might show the tumor is the same size, but an MIBG would hopefully show less or no "glow" from the dye, thus the NB tissue would be going away.

Madelyn is her most vulnerable this weekend, so we will be camping here. Sheila is running out today, but Maddy is staying put with Daddy.

We are still trying to sell the boat to help pay for medical bills. Since I changed jobs, we don't get a full paycheck for me until 3/16 so things are a little tight. Hopefully it is only temporary. ERA realtors have sent some money through their inter-office mail. We are probably going to refinance Sheila's car loan for a lower rate and consolidate her student loans. I know this may seem a little too much info, but I want you all to know that have offered to help that we are trying to get things in order so we can weather this. If we do need help in the future, it won't be before we have exhausted our
options.

I want to take this opportunity to thank Judy Lennon for taking the lead on our fundraising efforts. Larry Maio, our pastor at Seacoast, brought our situation to the congregation last week and they sent us $100. It feels good to know that in this cynical world we live in, people are still good and love one another.

I am going to stop now as I am being beckoned to help clean the house. THank you all and we love you very much.

Round One

I am sorry we haven't posted anything. The wireless connectivity here at the hospital has been a little haywire.

Madelyn went to recovery at around 12:45PM on Friday. She had some oxygen saturation issues in the OR and recovery and had to have her upper airway frequently suctioned and received a repeat breathing treatment in recovery.

The central line was placed in her facial vein/internal jugular. They tried to go for her external jugular which would be a little off her center line of her body, but it was too small. She has two small incisions on her neck and one on her chest. The port-a-cath was placed under her skin between her right nipple and clavicle.

We came up to the room on Friday at around 2PM. Madelyn continued to recover well. She was a little groggy and was really congested. In surgery they gave her a good amount of fluids and this would make her sound more wet.

She began her first chemo treatment at 7PM on Friday. This consisted of the first drug, Carboplatin, going in over the course of an hour and then a dose of VP-16 (etoposide) @ 8PM given over two hours. They then push more fluid. When the first drop of carboplatin went in, I had trouble holding back the tears. You want to protect your children and keep them from harm. You baby-proof your home so they don't drink the Drano. Then for some reason we cannot understand, you're forced into a situation where you have no choice but to shoot them up with stuff that can eat through plastic, which is why special tubing and glass bottles of medicine are what they use. We have to change her diapers with gloves on so we don't absorb the small amounts in her urine. Crazy...

Friday night was pretty uneventful other than our crossing the threshold of innocence. We have poisoned our child, but its all we can do for her now.

Normally, they would give her the daily treatments 24 hours after the last one began, but to get us out of here at a reasonable tim eon Sunday we have changed the interval to 20 hours. Saturday @ 4PM they began just VP-16 alone using the same delivery as Friday. This went fine. Infants seem to tolerate this first round very well, and to be honest, Madelyn is handling it better than I am.

So, its Sunday morning and the last VP-16 for the weekend is scheduled for noon. It will take two hours to run in and then they will push some fluids and send us home.

We have a book from the patient educator with all of our instructions. I will have to review it to be sure, but we're going to be in the clinic a lot for blood tests and checkups.

The drugs, in a very general sense, work to stop actively dividing cells from dividing. The other effects are that her immune system will be suppressed due to the inhibition of good cells like red blood cells (RBC), white blood cells (WBC), and platelets will be impacted as well. The effect of each is:

Low RBCs (Anemia)
RBCs carry hemoglobin, which carries oxygen through the blood. When this is reduced, Madelyn will be a little tired and fatigued. She may show signs of paleness in her skin and especially her mucous membranes (inside her lips and eyelids).

Low WBCs (Neutropenia)
WBCs fight infection, so she will be more prone to bacterial infections. For this, we are giving her antibiotics.

Low Platelet Count (Thrombocytopenia)
Platelets are the clotting components of the blood. With a low platelet count, Madelyn can have issues with bleeding. If she is cuts, gets nosebleeds, etc. we may have issues stopping it. She may get more bruises. We have to be very careful of her bumping her head.

We just spoke with the team and we are going home this afternoon. We have our instructions and will be back in the clinic on Thursday. We have an MIBG scan scheduled for March 6th as well as a hearing test (one of the meds can affect hearing). We had an echocardiogram and her cardiac function is good. She still has a small opening from her right to left atrium but this should close as she continues to develop.

We need to make some calls as her prescriptions are not all that common for pharmacies. We'll update you as things develop. Thanks for your continued prayers. I also wanted to thank our pastor Larry Maio for coming by on Friday. His coming by was a great relief. Also, Judy Lennon came by and is taking the lead in helping us establish a fund for Madelyn's medical and non-medical needs. Judy also brought by Madelyn's new favortie toy, Froggy.

Well, we need to get ready to go home and for her last chemo treatment for this round. The next round will be March 15th and will be all day in the clinic, but no overnight stay in the hospital.

Thanks again for everything!

Update - At the hospital

Madelyn went into surgery at 11:15 and is getting a central line put in for chemotherapy administration. This is a straightforward but serious procedure. The port will be below the skin which will help us when bathing her and reduce her risk from infection. So far, everything is OK. We'll post more when we know. The procedure should take no longer than 90 minutes.

Dr. Pirich called yesterday to tell us that there is neuroblastoma in her bone marrow. The extent to which it is involved is difficult to determine because it was a cluster of cells rather than dispersed, but it doesn't change the treatment plan and most likely will have no effect on the outcome. It's a little discouraging, but it makes our decision to treat even easier.

We have internet access at the hospital and will check periodically and update the blog as we get a chance.


Rick