Welcome Sophia Hope Bell!!!

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

Monday, December 10, 2007

Ck out this link

Thanks to the update from James Runde's site, I found out that CNN had a little blip on Neuroblastoma yesterday. Neuroblastoma finally got some airtime! I wonder if Dr. Cheung, who was one of James doctors was one that any of our doctors talked to. I know that a few different times our surgeon and our Oncologists have called Memorial Sloan Kettering for advise.

http://www.cnn.com/video/#/video/health/2007/12/09/snow.cookies.for.kids.cancer.cnn

Heres an idea, instead of making Christmas cookies this year buy them and help out a great cause:

http://www.cookiesforkidscancer.org/Pages/Page.aspx

Love,
The Bell's

Saturday, December 8, 2007

Friday Update

Well, what a Friday we had...let me begin. We were at the hospital at 9:30 for the MRI at 11:45. They bumped us up b/c the child before Madelyn had to cancel b/c of a cold. I was absolutely dreading all day and afternoon w/Madelyn not being able to drink or eat. We were originally scheduled for 2:30, but the called me at 7am to ask if we wanted to be moved up and I said "absolutely". We had the dr. listen to Madelyn b/c she has been a little stuffy, but they said she sounded great. She went in about 11:00 for her MRI. While she was in Rick and I went to the clinic to see if there would be someone to read the scans and give us the results on Friday. Rick has to fly out on Sunday for California for work and won't be back until Thursday and we just wanted to know the results before he went, b/c God forbid the news was bad, I didn't want to get it alone and he would have had to fly back early if we were to start treatment again. They told us that there were a lot of patients on the Oncology floor and only 1 doctor so we wouldn't get the results until Monday....bummer!

Anyway, she came out of the scan and was awake before they could even get her back to the Peds. Sedation room that we were waiting for her in. There was only one nurse rolling her gurney back and she woke up in the elevator and was trying to climb out of the gurney. Luckily, one of the nurses from the Oncology clinic recognized her and stopped to help get her back in the gurney until the got her back to the room. She came too pretty quickly, drank about 2 glasses of apple juice and we left. Rick went to work and Madelyn and I stopped by Stein Mart before going home. Madelyn hadn't had anything to eat all day, so she was eating Teddy Grahams and drinking her water and was fine.

We got home and she had a couple bites of lunch, but not much. She just wanted to play. So we were playing w/her toys and went into her room to color. We were coloring when I realized her hands and lips were purple and she was shivering and was freezing cold. I put a sweatshirt on her and grabbed her comforter and decided to sit on the couch with her until she warmed up. I called the Peds. Sedation number just to ck w/them to see if this was normal. I thought maybe it was the sedation medicine still getting out of her system. This was at 3:30. We sat on the couch and she fell asleep immediately. She slept for about 2 hours. I decided that was long enough so I tried waking her up to give her some juice or something. She didn't want to wake up very easily. She was very groggy and just not herself. I called Rick to tell him. We decided to watch her and and thought maybe it was from having such a long day. After hanging up from him I felt her head and it was burning up. I took her temperature in her ear, in one ear it was 103.7 and in the other it was 104.2. I put her in the car, called Rick and told him to meet us at the ER.

We got to the ER about 6pm. While on the way there, I called our Oncologist and told him what was going on and he said to take her to the ER. He called ahead and told them we were on the way. We got there and didnt' even wait 2 mins before they called us back. 2 doctors came in to talk to us. We really liked the Resident, he was very calm and concerned. Which is what we needed b/c we were both a nervous wreck. We told him that we were just here this morning for an MRI and he said " I know I read the scans"...and paused. At this time a wave of emotion came over me. There were the 2 docs and a nurse in the room w/us, Madelyn was burning up, and it felt all too familiar from almost 1 year ago to the day when we got the worst news of our lives, that she had Cancer. They knew something that we didn't and in my mind, I don't know if it was b/c I was sick about finding out the results of the scans, but I just clumped it all together and assumed that one thing had something to do with the other. It turns out that it didn't. They doctor looked at her right ear and said it was very infected. This surprised us, b/c Madelyn hasn't been fussy or even pulled at that ear one time. I told them that this past week her right eye has had some yellow icky stuff coming out of it too and her right nostril has had some nasty, green/brown boogies too. He put all of that together and decided that it was H-Flu, which is a bacterial infection. We are on 10 days of antibiotics and after Tylenol, her fever was gone and we were home by 9:30 last night.

We sweet talked the Resident Dr. and he let Rick look at her scans and the findings of the Radiologist...MADELYN'S SCANS ARE CLEAR! Even better, the dead leisions that were in her liver are gone and her liver is completely clean. They tissue of her primary is still in her chest, but has not changed and the Radiologist said NO EVIDENCE OF NEUROBLASTOMA!!! HOOORAY! We are so thrilled. I also forgot to post her VMA/HVA levels. They are actually down and that is great. VMA-12.6 (down from 15.1 a month ago) HVA-16.9 (down from 23.9 a month ago)

What a wonderful Christmas present. We are so grateful for Madelyn's health. Please contiue to pray for Madelyn's health and every child who is fighting this terrible disease. We want to wish you all a very Merry Christmas and a very happy New Year. We will be kissing 2007 goodbye and welcoming a very happy, HEALTY new year!

Love,
The Bell's

Monday, December 3, 2007

December Update

Well, for those of you who were aware that our first scan since Madelyn was declared NED was postponed because we fed her too close to the sedation time. We usually do well with this stuff, but they didn't call with details and we slipped up. We rescheduled for 12/7 at 2:45PM, and we will remember not to feed her after 7:30AM, I am quite sure of this. It should be a LONG day, but the hope is that we get confirmation that everything is still going well.

Madelyn is continuing to develop into a great little person. She has so much personality. My favorite thing is when she gets really excited about something. She oohs and ahhs without prompting. It's genuine excitement.

On the 2nd we had the annual Cancer Center Christmas party at Saluda Shoals Park in Irmo. Afterward, we rode around the park and looked at all of the lights, just like we did when we were in NY with the exception of the snow! I encourage anyone who has an evening free in Columbia to make it over to Saluda Shoals this holiday season.

The message at church this past weekend was about our purpose. I felt like the speaker was talking directly to me as I have been struggling lately with what my life's purpose is. I ask you to pray for my family and me that we continue to grow closer to each other and God, and that I can see God's purpose for us when the time comes.

Love,
The Bell Family (Rick)

Friday, November 16, 2007

VMA/HVA Results

I am sorry we haven't posted the results until today, but we just got the results at the beginning of the week. VMA 8/29/07- 15.1 VMA 11/12/07 - 15.1 HVA 8/29/07 - 22.7 HVA 11/12/07- 23.9. Per our Oncologists, although the HVA is slightly elevated, they are still in normal levels so they are not concerned at all. Madelyn had her flu shot on Tuesday and did very well with it.

Everything is go ahead for the 29th, we will update when we know something.

Wishing everyone a wonderful Thanksgiving!

The Bell's

Monday, November 12, 2007

O So Long It's Been!!

I feel like each time I post, I must apologize for how long it has been since our last post. I guess, I should just post more often, then I won't have to apologize! Well, life has been very fun and busy! Since Madelyn had her port out on Oct.1, we had the go ahead to go to PA and NY. Madelyn met her Great Grandmother for the first time. My Grandmother fell in love with her, of course, who can resist those eyes and that smile. We made our way to NY and stayed a week with my brother and his girlfriend. We went apple picking, went to a pumpkin patch and went to a petting zoo. We went to the NY State Mueseum and to a the Saratoga Springs Children's Mueseum. We had a blast. I will update with pictures later. We stopped over in Fulton (the little town I am from) and stayed with Chuck & Jackie, long time family friends, and made our way on to VA for the night where we stayed with my friend Erin. Finally we made it home and boy are we still exhausted!!!!:o) While in NY we met a new friend of ours, Mackenzie Lanae, her link is to the right. She too has fought NB and won! She is the most precious little one and her and Madelyn hit it off from the first minute they met. We met at a play area at the mall in Albany and people kept asking if her and Madelyn were twins! She has the most beautiful blue eyes and the kindest heart. Madelyn and I know that we will be life long friends with her and her mom Michelle. Please pray for Mackenzie as she will have a G-tube put in on 11/28 to help her with eating. Mackenzie's primary tumor was in the same place as Madelyn's, in her chest and the surgery to remove it damaged the muscles that help her swallow.

We have an Audiology checkup tomorrow afternoon to ck to make sure Madelyn's hearing is fine after the chemo. We will get her a flu shot after that. She has a dentist appointment next Tuesday where they will ck out her 6 shiny teeth. We are all anxiously awaiting our drs. appt. on the 29th. We will have the standard ckup with the clinic - urine test & labwork and then at 11:45 we will have the MRI to make sure everything is still clear. I am expecting good news, but as they told us during chemo, this is the hardest part. Holding your breath until we get the final word from the Dr. We still haven't gotten her VMA/HVA numbers from the 8th. Hopefully we will hear today or tomorrow. I will post those results as soon as we get them.

We want to tell you all how much we appreciate you all cking in on Madelyn, the words of encouragment and the emails that we get. As you can see from previous posts, about James Runde and Grace Oughton, this is a terrible disease. We have gotten GREAT news but it is a long road. We just continue to pray for Madelyn and that her disease NEVER comes back and that she just stays a wonderful, healthy blessing from God, because that is what she is!

We love you all!

Monday, October 29, 2007

Please pray for The Oughton Family!

Brave little Grace Oughton earned her angel wings at 6:23am this morning. Please pray for this family in their time of need.

Grace's Website

Thursday, October 4, 2007

Cardiology Results

Well, it was a brief visit. Madelyn was great. The cardiologist stated that the PFO was a pinhole and they would see us back in 2 years. She has no limitations on her activity other than until we run another echo, no scuba diving. When told that she couldn't scuba dive, Madelyn showed no emotions. I think she's OK with just snorkeling for a while.

We also had her monthly visit at the Children's Cancer clinic. Her blood tests all came back great. She walked unassisted around the entire office and was the talk of the clinic. We submitted a urine sample for VMA/HVA levels and should have those results in 2 weeks.

Madelyn's surgical incision looks good. Unfortunately, they placed an occlusive dressing on the site that adheres to the steri-strips. We removed them tonight and replaced them with some we have at home. She took a bath tonight and is now officially back to her routine.

Sheila is getting some birthday pictures done at Portait Innovations next week before they depart for PA/NY. We'll post them on Picasa when we get them. Just in case you want to see all of the picture albums, go to this address

http://picasaweb.google.com/rick.bell

Monday, October 1, 2007

The port is out!

Madelyn had surgery today and had her port removed. There is really nothing to speak of about today. We were headed for home by 10:30 AM. We asked for, and received, the port for our keeping. Some would think it's odd, but it's a small symbol of what she has gone through this year. Dr. Adkins said he was going to cut off the flexible catheter part, but he left it on. The tip of this catheter was in the atrium of Madelyn's heart for 7 months. It's weird to think about.

The post-treatment echocardiogram was done last week to determine if there were any ill effects from the chemo on her heart. The preliminary results show nothing, but there is a point of concern. The initial echo we had on February showed that Madelyn has a PFO (patent foramen ovale). This is a hole in her heart between her right and left atrium. Most children have this, but the expectation was that it would close as she continued to develop. It appears that is not the case and she still has it. About 20% of the population walking around today has this and it is not in itself a major issue, but we are seeing a congenital cardiologist on Wednesday. We have now found out how serious this could have been with her having a catheter in her heart. The likelihood of having clots from the catheter tip are greatly increased over a normal person, and if a clot had formed and passed through this opening to her left atrium, the clot could have been forced out the her body, possibly her brain, which could have resulted in a stroke. If forced out of the right atrium, it could go to her lungs which would be a pleural embolism, which is life threatening as well. Without the catheter, her likelihood of having clots for in this space is more significant than a normal atrial wall. We're taking this seriously, but we're not going to stress until we see the cardiologist and hear what the have to say. There is a procedure that offers a repair through a catheter ( no open chest surgery) but she is not automatically a candidate nor is it something we just choose to do. Placing a catheter in her heart and having someone sew the hole shut opens the door for serious complications. I think the degree to which the blood flows between the chambers and the size of the opening will determine what course we take.

Madelyn came home and ignored doctors orders. She was very playful in the early afternoon, but she did get fussy later in the evening. This could be a direct result of not getting her normal bath time. She loves playing in the tub.

Please continue to pray for Madelyn and our family. It works. We know.

Love,

The Bell Family

PS - If you can, please visit some of our friends links on the right. There are families still in the thick of their fight. It doesn't matter that you don't know them or they don't know you. We appreciate all of your comments, but one of the truly amazing things about the comments here are the ones from those people we haven't met yet. We are all children of God and that's what binds us. We'll meet sometime, either here on Earth or later in Eternity. It makes sense to introduce yourself now. Thanks!

Tuesday, September 25, 2007

WE ARE 1 YR OLD!!

Wow, how fast this year flew by! I guess that is to be expected normally and with all that we had going on this past year, I just can't believe she is 1, talking, WALKING and the most beautiful, precious thing I have EVER seen! Her birthday party was fabulous! Thank you all who came to celebrate not only Madelyn turning 1 yr. old, but the fact that we are officially NED(No Evidence of Disease)!!! The status we have been hoping and praying for every single day of these past 9 months!!

We had an appt. w/the Surgeon today, who has scheduled us for surgery on Monday, 10/1 to have Madelyn's port removed!! YEAH! We are so happy, but again concerned w/another surgery w/full anestesia. Please pray that all goes well. We will find out the results of her echocardiogram from today, tomorrow. I will post those results later.

We love you all and stay in touch. We will post updates on Madelyn's progress and of course new pictures for you all to ooh and ahh over, how can you not?!?!:O)

Pray for all of our NB friends who are still going through this journey. Helpful words of encouragement and prayers truly do help!!!

Love you all,
The Bell's

Tuesday, September 18, 2007

James Runde

James Runde earned his angel wings last night at 9:30pm. PLEASE pray for his family through this most difficult time. You can visit his website and read his story here.

Wednesday, September 12, 2007

PLEASE, PLEASE, PLEASE READ BELOW!

I don't know if you all know or not but September is Childhood Cancer Awareness Month and I can't even begin to tell you how much awareness we need of this disease. I can't beg you enough to please watch the attached video and do everything you can, blast email to everyone you know, that this is Childhood Cancer Awareness Month and send this video link!

Also, please pray for James Runde and his family. They need all our prayers right now through this difficult time! James Runde's Site
Thank you all!

Monday, September 10, 2007

THE UPDATE WE HAVE ALL BEEN WAITING FOR!!!

First of all, let me start this post out by apologizing to you all for not updating before now. We did get news last week, but nothing firm. You see there were about 5 different tests we were waiting for results of, and of course they all don't come in at the same time. So I will just update you all on the results that we do have, we are still waiting on one.

We already gave you all the update on the MIBG scan. The MRI showed that the liver looks great, no tumors, the lymphnodes show no tumors on either side of the neck and the primary tumor shows more than the 90% shrinkage size that the doctors gave us as a marker. The primary tumor shrunk from 9cm to 1.99cm. We looked at the MRI's from Feb. and compared them to Friday's and I can't even describe the difference. This is all wonderful news and we are so very happy. The radiologist that looked at Madelyn's scans said that the "very, very faint glow" on the right side of the chest from the MIBG was not totally clear in the MRI. Apparantly, from being asleep so long before the MRI, things were more relaxed and covered that spot up. The Oncologist talked to the Radiologist extensively about the area and they came to a concensus that it was just normal tissue taking up some of the dye, not Neuroblastoma tissue. Rick and I of course would have liked to have more conclusive evidence that this IS NOT Neuroblastoma, but they could not say for 100%, but they are the experts and feel strongly that it is nothing to worry about. Madelyn's bone marrow came back negative as well. We had to wait for the results of that test, apparantly they were having a problem with the test of Madelyn's and a few others.

We are still waiting to hear back on her VMA/HVA counts. They usually take 1-2 weeks and w/Labor Day we are hoping to hear this week. They have been at normal levels for the past 5 months or so, so we are not expecting them to be elevated.

All and all we have received EXCELLENT results and are so very happy that her Cancer is gone. We are so hesitant to say gone b/c there are no guarantee's in this journey. No the tests did not show any glowing, but it doesn't get to a cellular level. We are talking this wonderful news and just going to enjoy it. That is all you can do is take everything day by day.

When we went in to have her MRI on Friday before labor day, the nurse decided to do lab work even though there weren't any orders. Surprisingly she was neutropenic, her counts were way down. So we just stayed in labor day weekend and enjoyed being together. That is always fun!!

On another happy note, Madelyn now has 2 top teeth and 2 bottom teeth. As soon as they top ones hang down enough to get a cute toothy smile picture, I will post it for you all to see. I am in amazement that she will be 1 year old in only 10 days! My God this year flew by!! Preoccupied w/things I guess. She is also on the verge of walking. She kept taking 2 or 3 steps to me this evening from the couch or her walky toys. It won't be long before I'll be chasing her around the yard!!

Please remember, September is Children's Cancer Awareness Month...pass the word!!!!!

As soon as the VMA/HVA results come back in normal levels, we will get the official NED status from the Oncologists!!! YEAH!!!! Then we will schedule Madelyn's surgery to have her port taken out, since we won't be doing anymore chemo, HIP, HIP HOORAY!!!!!!! After that the game plan is to go back once a month for urine test and lab work. As long as those continue to stay at normal levels, we will only do an MRI every 3 months, until we are clear for about 5 years, then I believe they monitor her once a year. WHAT A BIRTHDAY PRESENT FOR HER!!!

We are so grateful to you all for all the kind, encouraging words that you have sent us and all of the wonderful people who have prayed for us! We could not have made it through this long, emotional journey without you all and for that we will forever be grateful. We love you all and please continue to keep Madelyn and our family in your prayers. Let's pray that this beast, Cancer, stays away FOREVER! We will definitely keep the blog updated, because life has just begun w/Madelyn and we would love for you all to still be involved.

All our love,
Rick, Sheila and Madelyn

Tuesday, September 4, 2007

Big Day is tomorrow

Tomorrow is a pretty big day. I (Rick) am not a "jinx" person, so I can be honest. I think tomorrow the doctors are going to tell us that Madelyn is NED (no evidence of disease). This means we'll be stopping treatment, removing her port, and scheduling regular checkups to monitor her status. If not, I don't know what they could say. The MRI showed nothing in the preliminary images. The MIBG was negative with the exception of a very very faint spot in the R chest where she never had disease before. The MRI showed nothing, but it wasn't clear due to some atelactasis (deflating of the lung) which probably would not have occurred had we done the MRI first and the bone marrow biopsy last like we have the other 3 times. This is the reason that I haven't really gotten too excited, because its no EVIDENCE of disease, not 100% without disease. With the knowledge that we are limited by the technology and testing parameters, something could be missed and stopping treatment can pose some risk. That's my worry. I said it. Now that it's out in the open, I am very hopeful that the worst, from a physical perspective as far as what Madelyn has endured, is behind us. We know we'll get uneasy every three months for scans. We worry about relapse. We are afraid to stop treatment. Will the chemo she has received predispose her to leukemia later? Again, a rant.

We await the news with guarded joy. We normally wouldn't admit this out loud but all signs point to a good outcome and I feel we should be allowed to embrace it, even if only for a moment.

As her father I feel its my #1 job to staunchly defend my daughter's right to live. I need to be strong for my wife. Early on, it was easier for me because we had such a learning curve and when she had questions, I generally had the answers. Now the situation is so nebulous that I have had to say recently that I just don't know when asked what criteria would make surgery an option, or what's the likelihood of so and so, what patients relapse the most, etc. Every day I question my ability to make these decisions and be strong for my family. Most of you who know me probably wouldn't think that about me. I am generally very clear that I think most of the time I am the smartest guy in the room. Well, that's OK when it comes to little stuff. It's OK when a mistake now and then is acceptable. Madelyn is the one who gets sedated, cut on, poked with needles, is at risk for infection, throws up at the sight of the activity center at the hospital. I hope one day she knows that I would much rather it be me than her, not just so she wouldn't hurt, but because I could handle it better than watching her endure it. It hurts more than trading places.

Mark this one down as a therapeutic entry for me. Writing here helps me deal with this and whether or not anyone reads it, it serves a purpose.

Thank you for your continued support and prayers. With all of the things Madelyn is learning, we haven't started to teach her to pray yet. I'll work on that this week.

Love
The Bell Family

Monday, August 27, 2007

MIBG Scan Results!

Well, the scans went on as planned last Tues. Wed. and possibly Thursday. We deprived Madelyn of her normal afternoon nap in hopes that she would nap during the long scan on Tuesday...and it worked. She fussed at first, but slept through the whole thing. Rick went with me so we both could distract her when she was fussy. Wed. my mom and I took her and she didn't do as good as Tues. She didn't sleep, so she screamed the whole time until I discovered how much she loves gum. I was blowing bubbles and snapping it and she just laid there and watched and laughed. Once we were finished the Nuclear Medicine Tech. told us they would call us after the radiologist had a chance to look at them and tell us if we needed to come back on Thursday. I was fine w/that until they called us a couple hours later and told us we needed to come in the next day for scans too. I started thinking about this and really drove myself into oblivion. I remember the last time we did this after round #4, we had to go in the 3rd day, it was positive. I couldn't decide if this was a good thing...they didn't see anything and wanted to make sure they didn't see anything or a bad thing...they saw areas that glowed and wanted to make sure of the extent of the glow. We ended up calling the Oncologist Wed. night, just b/c we couldn't take it anymore. He didn't have the results...so we waited.

Thursday we went in for the last day of scans. She fussed, but slept though half of this one. I asked the tech. after when the results would be done. He said they would be read that afternoon, but it takes 48 hours for them to get it to Oncology. He told me I could have the Oncologist call to get the results and they would get them that afternoon. So I talked w/the nurse in Oncology and asked her if she could ask the Dr. to call over to get the results and she said she would.

I got a call from Dr. Roberts about 3 hours after we left the hospital. She said...that all areas that showed cancer before, the lymph nodes, liver and primary tumor in her chest were NEGATIVE, meaning no signs of cancer. They said there was a faint glow in the right chest, but she never had anything in the right chest before, so it is unlikely that during treatment, a new spot started. They said the radiologist said that it was a "very, very faint glow". They told us that they are not concerned but we will rule it out completely with the MRI on Friday. They said sometimes the tissue absorbs the iodine and that could be the glow. We are ecstatic, but cautiously happy! The thought of this area in the right chest is just in the back of mind and will not go away. Although the Dr's. say they are not worried, I need them to confirm before I go shouting from roof tops and jumping up and down!!

So to sum it all up, there is not any more cancer in the existing previously affected areas. They are going to rule out the area in the right chest. The positive or negative for cancer was only part one of this final diagnostic testing. Now, we need to do the MRI and bone marrow biopsy on Friday to rule out cancer involvement in the bone marrow and to observe the size of the primary tumor. Per the Dr's. if the primary hasn't shrunk 90% or more from the original size, then they want to do surgery to remove what is left. However, if it has shrunk 90% or more or COMPLETELY, then the only surgery we will be doing is to remove Madelyn's port, which will be a WONDERFUL DAY OF CELEBRATION!!!

Thanks for checking in, we will keep you all informed of the results.

Countdown to Madelyn's 1st Birthday...24 days!!!

Thursday, August 9, 2007

Quick Update!

We got a call from the clinic today to let us know the schedule for all the testing at the end of this month. Labs-8/13, 8/16, 8/23. MIBG Scan on 8/21, 8/22, 8/23. MRI and bone marrow biopsy 8/31. We go for labs on 9/5 and to meet w/the Oncologists to discuss results and to talk about what to do or not to do next. We will get the results of the scans before 9/5, so we will post them as soon as we can.

Click the link to the right for James Runde and read his families latest post or copy and paste this link in your browser http://www.babiesonline.com/journal/journal_view.asp?be=o/our_boy. As you all pray for Madelyn and my family, PLEASE, PLEASE, PLEASE pray for the Runde family and especially for James. Pray that his pain is minimal and that he fights and beats this disease. Neuroblastoma truly is a beast!!!

Thank you all and we love you!
The Bell Family

Wednesday, August 8, 2007

8th and Final Round of Chemo is done!!!

Whooohoo!!! We finished our 8th round of chemo yesterday and it went very well. Madelyn didn't get sick or anything. It is almost like she knew that this was it. We made it through the long day at the clinic and now we wait. We will begin testing the end of this month and we will decide then where we go next, if anywhere. We are doing counts Mon. and Thurs. next week and the week after. Please pray that her counts stay up and that we make it through this final round w/no illness or hospital stays.

I took the girls this morning for their pictures. This was the first ones we have had done professionally with the two of them. They are adorable together. I'll post more later.

Keep on praying!!

We love you all,
The Bell Family

Wednesday, August 1, 2007

Getting ready for hopefully the final round of chemo!!!

Well, countdown to hopefully the final round of chemo...round#8. Anyway, just a brief update from the past week and a half. Madelyn has been sick. Last week she ran a fever of around 100.9 down to 99.3 all week. She really had us all on edge. She was throwing up, very tired and didn't want to eat, which if you all know Madelyn, you know something isn't right if she doesn't want to eat. We brought her into the clinic last Wed. for counts and saw the Dr. They accessed her port and gave her 2 hrs. of fluids and antibiotics via her port and called me in a perscription to give her at home. They took a culture of her port and there was no infection there. They believe she had a virus of some sort. We called the dr. everyday w/concerns about her temperature and her temperment. On Thursday night, he told us to take her temp. at 9:15pm and if it was 101 or above, bring her in to be admitted. At 9:15, her temp. was 100.9...figures! Glad it wasn't over 101, but there is some comfort when you have a child w/Cancer and they are sick of being in the hospital where all the drs. are to carefully monitor her. Although the Dr. said all they would do it is watch her, so we figured we could do that here and be in the comfort of our own home.

Madelyn's counts were up on Monday so we stopped giving her the Neupogen shots. We go back in the morning for counts. She has been coughing and sneezing a little bit. Running a low grade fever too. We'll see how her counts are tomorrow. Rick and I are skeptical of doing chemo next week if she isn't feeling well. You can see it in her face that all this chemo is starting to take a toll on her. She's more icky than before. She is crawling around like crazy and pulling up on everything. She says all kinds of funny words now. The funniest is her sister Kaitlyn is here for the summer. We got her to say sissy, but she has to say it in this high pitched voice and she says it like siiiiiiis.....ssssy! Too funny.

Please keep praying for Madelyn that she stays well and that we get through the LAST round of chemo next week w/no issues! Also, please continue to pray for all of our friends to the right!!

We love you all!
The Bells

Friday, July 20, 2007

Madelyn is 10 months old & Round 7 is complete!

I know we are only posting when we are finished w/each round of chemo. There really isn't too much to update on this next course, b/c we aren't running any diagnostic tests. This round of Chemo we were at the clinic 3 days, Tues., Wed., and Thurs. Tuesday we were there all day. It was a tough day. Madelyn was sick all day. She got sick any time we gave her anything to eat. It could have been because the AC was broken, and it seemed like it was 300 degrees in there. I think the heat, the drugs and just being in the clinic made her sick. Wednesday and Thursday they were full in the Oncology clinic, so they moved us over to the Hematology part. Basically, it is just some rooms around the corner. She did great there. She slept the entire time the drugs were running. 3 hours each day and we got to go home. I truly believe with Madelyn getting older, she is associating the clinic, the smell of it and being there w/feeling sick. She was absolutely fine on Thursday in the Hematology room. We came around the corner to the Oncology section, near the rooms we normally get chemo in and she started vomiting. We are scheduled for labwork next Wed., then Mon. & Thursday the next week and on Mon. 8/6. If counts are up and fine, we will do HOPEFULLY THE LAST AND FINAL ROUND OF CHEMO ON 8/7!!!! It will be one day, a very long day, but only one day.

Other than that, Madelyn is growing like a weed, 29 1/2 inches long, and 23lbs. She turned 10 months old today. She is so much fun. Her vocabulary is growing and growing. She is crawling and pulling up on everything. We had to drop her crib down to the lowest setting so she won't topple over the top, and we no longer have our metal coffee table in the living room.(small incident today where my mom put her down so she could use the bathroom and came back and Madelyn was trying to pull herself up and banged her head). My brother and his girlfriend were down from NY 2 weeks ago. Had a great time. We took the boat out on the lake and went swimming and just had fun. My best friend Erin and her family came down from VA last weekend and again we had a blast. We went to the zoo, the mall, took the boat out on the lake and just hung out. Her 20 month old son Tate is Madelyn's boyfriend. Got cute pics. of them in the bathtub together!!!

Keep praying that these last 2 rounds of chemo will shrink the tumors enough so we won't have to do surgery and that the cancer is gone! Also, please pray for all of our friends listed under "Sites you should visit"!!!

We love you all,
The Bell Family

Monday, July 2, 2007

Round 6 is complete!

So sorry it's been so long since our last post. Although, like they say...no news is good news! We made it through round 6 without a hitch. Madelyn got sick twice, but that is to be expected, it was a long day and she received 3 of the 4 drugs. We have been keeping pretty busy with work and trying to enjoy the summer. We are scheduled to have round 7 on July 17th, as long as her counts are back up. My brother, Ronnie and his girlfriend Liz are coming down from NY this weekend. We are VERY excited. They haven't seen Madelyn since her biopsy in Dec...wow are they in for a surprise!!!

Madelyn has 2 shiney white teeth on the bottom front. She is cutting one or two on the top now. She has some new words...baby, eye (she will point at your eye too), watey (we think this is water, she kept saying it at the lake this weekend). She hasn't crawled or walked yet. She really, really doesn't like being on her belly long enough to learn to crawl. She will get up on all fours, and if you are distracting her enough so she doesn't realize that she is on her belly she is okay, but as soon as she realizes it, she squeals at the top of her lungs!

Everytime we go to the clinic and Madelyn has chemo or labwork or anything done, they give us coupons. This is for the kids to buy toys or games or things with. I wasn't really sure what I was supposed to do w/them, b/c believe me when I say we don't need anymore toys. The Child Life Specialist came up to me on Tuesday and noted that I hadn't cashed them in. So we cashed them in and got $60 worth of gift cards to Target. I went on Wednesday and Madelyn bought herself a Radio Flyer wagon and it is cool. It has to flip up seats in it w/seatbelts and drink holders that she loves to ride around our neighborhood in. We gave our friend Carsen a ride in it the other day and they had a blast!!!
We found out at the clinic last week, that Madelyn qualifies for a wish through the Make-A-Wish Foundation. She has to be 2 1/2 - 3 years old before they can give her her wish. So...we are very excited about that! Also, they told us about the Journey Beads. They gave us a list of all of the different things that the patients get beads for (i.e. finger sticks, biopsy, diagnosis, MRI, etc). I have to go through my calendar and see how many of each that she will get...believe me, it will be alot and then we put it on a string w/her name and it starts w/the diagnosis bead and continues on until we are NED (no evidence of disease). Then, she can take it to school someday and tell everyone in show and tell the journey she has been on!!

Notice a new link to the right...Keria Grace. This is our brave little friend in Texas who is facing surgery on Thursday to remove the Neuroblastoma tumor in her chest just like Madelyn. Please pray for her and her family that they all remain strong and brave through what is ahead of them.

Please continue to pray that all of Madelyn's tumors shrink enough so that we do not have to have surgery when chemo is over!! Thank you all for your continued support, prayers and kind words.

We love you all,
The Bells

Tuesday, June 19, 2007

Round 5 is complete

Its been a while since we posted. Madelyn had round 5 of chemo on 6/5. We had a little issue with that. The physician that wrote the orders for her chemo wrote for the wrong drugs and Sheila didn't catch it until after it was over. Basically, Madelyn has begun Course 2 of chemo. The drugs are the same as Course 1, but the order and combinations change slightly. Sheila received the roadmap for treatment on the 4th and we went in for treatment on the 5th. We didn't figure we needed to check anything as the roadmap states clearly the treatment plan for the entire round, however, from what we understand the physician wrote for the same combination as course 1 round 1, not course 2 round 1. They admitted the error and Madelyn should not have any issues as she was to get this combination in course 2 round (about 6 weeks from now). The trouble is the principle of it all. This is a huge oversight and we have discussed this to some extent with the staff. We have been told an incident report is going to be filed and we plan to follow up on this.

On to better news. Madelyn's vocabulary is growing. She can say:

Da Da (first words)
Na Na
Ma Ma
Ball
Bubble
Dog
Wow
and now....

Uh oh!

She is trying to get crawling, but seems to get frustrated easily, so we'll continue to work on it.

Her first teeth popped through last week. She has two little toofers on the bottom. They came through together and she did not appear to have much pain. There is a white ridge on her upper gum, so it may not be long until the top ones come in.

She is going through a stage now where she doesn't go to bed smoothly. She goes to sleep while nursing, but during transfer to the crib she awakes and is WIDE awake. ON the bad side, this is a problem we need to address quickly. On the other hand, she is so darn cute when she gets back up. Irresistible!

Course 2 Round 2 (or round 6 if you like) is set to begin 6/26. We have altered the roadmap to accommodate the mistake. Basically round 5 and 7 have been reversed. Rounds 6 and 8 stay as is outlined on the roadmap. Her chemo should only be 1 day this time since there is no VP-16 (runs over 3 days). The plan is to go through to the end of course 2 (round 8) and reevaluate.

ERA Mortgage hosted a fundraiser at Sheila's office. In a little over 3 hours, they raised $1600. Many of my BCBSSC colleagues were there. We have expressed our thanks before, but to be clear, we truly appreciate what everyone has done for us.

This has been pretty short and sweet, but hopefully this gets you up to speed.

Thanks to everyone and please keep us in your thoughts and prayers.

The Bell Family

Thursday, May 31, 2007

Big Update - Chemo Continues

We got the results back from the MIBG and Madelyn still has some faint glowing in her left chest. This implies that she still has active disease. The plan from here is to do 4 more rounds of chemotherapy. Most likely we will have to do surgery at the end if the primary tumor in her chest is not 90% reduced.

We are scheduled to begin the next four rounds on 6/5/2007. This Friday, we are going to the zoo. There is an event going on that is just for chronically ill children and their families. Kaitlyn is coming down this weekend.

There is not much else to tell, but we're pretty down about this. We hoped that she wouldn't have to endure any more of this, but it appears we have no choice.

Thanks for your continued support.

The Bell Family

Sunday, May 13, 2007

Quick update!

Happy Mother's Day to all. Just wanted to give you all a quick update from this past week. We went in on Monday and Thursday to have lab work done. We've been giving her the Neupogen shots for 10 days now. Even while receiving the shots we found out on Thursday that her white cell count was ...2.5, down from 13 on Monday and her ANC count was 325, down from 11,310 from Monday. So we knew that this weekend would consist of staying inside and not taking Madelyn out. We had originally planned to go to church on Sunday and then brunch and then take our Mom's out to dinner for Mother's Day, but b/c of the circumstances, we decided to just stay at home and cook for everyone. While I was at Wal-mart on Friday, I found a little kiddie pool that I picked up for this weekend. I decided that since we couldn't go out and have fun, we would have a blast while staying in. And from the picture above...you can see that that is exactly what we did...had a blast.

We did get some good news this week. After the VMA/HVA test that the did at the end of April we found out that they are all within normal levels. When I say normal, I don't mean normal for a baby w/cancer, I mean normal for a baby Madelyn's age w/out Cancer. This is fantastic news. When we first started Chemo in Feb. if you all remember, her VMA count was 911, a baby her age w/no cancer's top normal range is 22.5, as of April 30 Madelyn's VMA level was 16.7. Back in February Madelyn's HVA level was 432, a baby her age w/no cancer's top normal range is 36.4, as of April 30th Madelyn's HVA level was 23.5. Like I said, good news right?!?!?!

We are so torn w/emotions for these next couple of weeks. Tomorrow (Monday) we have a follow up Eye. Dr. appt. w/wonderful Dr. Cheeseman, Opthalmologist. He is the Dr. who diagnosed Madelyn and had to break that life changing news to us on December 15, 2006, then after that appt. we go to the clinic for bloodwork. On Thursday we are scheduled to have her port accessed and bloodwork done at 12:30 in the clinic, then off to the hospital to Peds. Sedation for her MRI and her bone marrow biopsy. The following week, Wednesday, May 23rd, we will have the radioactive injection for the MIBG Scan. Then we wait for the wonderful news that we are N.E.D.- No Evidence of Disease. We have talked about after we get this diagnosis, we will have a big party on June 16th to celebrate the wonderful news and to thank everyone for all of the continued support and prayers!

Keep praying and we will keep you all informed of the outcomes.

Friday, May 4, 2007

Chemo is DONE!!!!

We went in and completed the last (scheduled) round of chemo yesterday! Madelyn was pretty good. She slept for 1/2 the time. She got a "Certificate of Achievement" for Bravery During Treatment from the hospital staff and some Target gift cards. We got home around 2PM. She starts Neupogen shots (yes, they were prescribed this time!) today and continues for 7 days. It seems like we are anticipating some issues with her non-white cells (RBCs and platelets) so we have lined up information for a directed donation of my blood and Sheila's platelets for Monday.

Right now the plan is for 2 weeks of recovery from chemotherapy and then on 5/17 we are planning to get an MRI done and an MIBG done the following week, 5/24. After that, we hope to get a return of NED (No Evidence of Disease) report.

We'll keep you all informed as more information becomes available.

The Bell Family

Thursday, April 26, 2007

Update

Well, we got through the hospital stay OK. Madelyn came home on Friday and her upper respiratory symptoms have persisted a little bit, but we manage that with Benadryl. Her counts have recovered as of 4/24, so we will most likely begin the 4th (hopefully final) round of chemotherapy 5/1-5/3. This should be done as outpatient as the others have been.

Madelyn will receive Neupogen during this next round. As you have read, Madelyn's white blood cell counts got down to 0 last time, and this will hopefully prevent that this time. Her red cell count took a big hit as well, but Neupogen will not help with that. We are trying to line up a directed donation from me to her should she need blood products during the next round.

About 3 weeks after the final round, we will repeat EVERY diagnostic test we've ever performed to determine the status if her disease.

On the good stuff, she is doing well and developing normally. She is a character. During her hospital stay, she would break out her little fake cough when hospital personnel would come into the room. She loves The Backyardigans program. I never thought that at 7 months she could watch it so intensely, but she knows what she is looking at, and by the way, if you walk in front of the TV she does whatever is necessary to look around you.

She is eating well and is building some upper body strength so hopefully she can start crawling within a month or so.

That's it for now. Thanks for your thoughts and prayers. We think of you often.
The Bell Family

Thursday, April 19, 2007

Update - At The Hospital (4/19)

This post will be one of the most straightforward you'll see here...

Madelyn spiked a fever of 101.3 yesterday around noon. She wasn't quite herself, and with the fever we called the clinic and we went in around 1PM on 4/18. They accessed her port and took blood for cultures (determine if there is bacteria in her blood) and do a repeat CBC with differential and chemistry. With a fever >101, she would be admitted and given a broad spectrum antibiotic in leui of the cultures, where if some bacteria is found in her blood (bacteremia) then we could supplement with a specific antibiotic for the type of bacteria.

We stayed in the clinic until around 5:30 when we moved to room 1025. Madelyn was very tired yesterday. She ate normally, but still wasn't herself.

We had extensive conversations regarding the fact that Madelyn was not prescribed Neupogen (helps with white blood cell creation post chemo). Her WBC count yesterday was 0.3. Her counts are lower than ever. From now on, it is pretty clear that we will use Neupogen to support her immune system from here on out whenever she has chemo. I could rant about this for days, but I'll stop there.

She had her 2nd dose of IV antibiotics at 10PM and went to bed. She had a restless night and was up a couple of times for extended periods. SHe also had Neupogen IV last night and will continue to receive it in the evenings.

She does not have a fever now. Her blood cultures are negative so far (we have to let them grow for a few days to be sure). Her WBC count was up to 1.0 this morning. Her hemoglobin is lower than it has been, which points to why she is probably tired.

We'll be in the hospital until we meet some criteria:

1. Afebrile (without fever) for 2 days
2. Negative blood cultures for 2 days
3. Generally improved behavior and appearance
4. Blood counts that would not leave her in a severely compromised situation

The good news is that this may happen as soon as Friday. She has no fever, the cultures are negative thus far, she is playing and having fun, and her counts are slowly coming up.

I have to go now. Please keep us in your thoughts and prayers.

The Bell Family

Tuesday, April 17, 2007

3 rounds down, 1 to go!!!!!

Sorry it's been so long since we updated. Time really does just get away from us. Well, we went for lab work on Tuesday, last week to see if Madelyn's counts were high enough to go through Round 3...they were...barely. The team wanted her ANC count about 1000 in order to go through with it and hers were 1035. She did really well. We were outpatient so we had to go in for a full day on Wednesday, then Thursday and Friday morning. On Wednesday she had 3 drugs (Etoposide, VP-16 and Doxirubicin) The VP-16 can only be given for 1 hour w/in a 24 hour period, so that is why we had 3 days of it instead of 1 full day. Looking at our "road map" it looks as though that will happen for round 4 as well. Wednesday night Madelyn didn't do too well, she was very fussy, up all night wanting to be held,needless to say it was a long night for Rick and I too! I think it was just from all of the drugs that she had received through the day, b/c she did better Thursday and Friday night. They accessed her port on Wednesday, but instead of accessing it every day, they just left the needle in for the 3 days. That wasn't much fun, b/c she couldn't splash and act crazy in the bathtub, but I figured it was better than sticking her everyday. I got a chance to sit down w/the Oncologist on Friday and look at the MRI scans. His copies seemed to be much better than the ones we got. I am amazed at how much smaller everything was. We compared the scans from Jan. 30 to the ones from Monday. Her primary tumor in her chest in Jan. was so big that it pushed her windpipe all the way to the side of her neck. However, the one from Monday, showed the windpipe going straight up and down. I got to see a great picture of her liver too (that's not something a new mom thinks she'll ever say in her lifetime:o) The one from Jan. looked (not to gross anyone out) like tapioca pudding w/tumors all through it. The one from Monday didn't show anything. I left there feeling really good about the decision we were forced to make and go ahead w/treatment. It makes it alot easier bringing her to the hospital as much as we do and sitting there during treatment knowing that it is working.

Madelyn went to her first birthday party on Sat. Our friend Carsen is going to be 1 tomorrow, so we went to her house and had a blast. Then on Sunday, we went to another birthday party for a friend of mine from college. Her daughter turned 1 too! Her party was at The Plex, and they had one of those big blow up jungle gym things w/a slide. I climbed up through it and Rick handed her to me and we got to go down the slide. She didn't really care either way, she got WAY more excited about the ice cream cake that we had!

Round 4 is scheduled (count dependent) for May 1st at 10am. We had to go this morning for lab work. Dr. Neuberg called me this afternoon w/her counts and boy was I disappointed. They are lower than they have ever been. Her white blood counts which should be between 6.0-14.0 were 1.9, almost non-existent. Her ANC count isn't the lowest it has ever been, but is the 2nd lowest at 190 (should be over 1000). I am so upset b/c I had a conversation w/the Onologist on Friday to ask if we would be giving her the shots that we did after round 2 to keep her counts up. It worked and we didn't have to be quarantined and of course worried about germs, but didn't have to be neurotic about them and he told me she wouldn't be anymore susceptible to them because he doesn't feel that her bone marrow is infected w/Cancer anymore. This didn't sit right w/me, but he is the Dr. Now I am so mad that I didn't insist on the shots. We are 4 days post chemo and she has already almost bottomed out. Her counts are all going to go downhill from here and then she is way more susceptible to infection. The Dr. said to me today, if she runs any kind of fever to call them and we will be admitted to the hospital for no less than 2 days. Needless to say, we are continuously taking her temperature, wiping EVERYTHING down w/Clorox Anti-Bacterial wipes and we won't be leaving the house for a couple weeks. The Dr. then said to me..."well at least we'll know for next time". I should have said "I did know for this time, but you said differently"! Well it is what it is and it's too late now. So we just sit on pins and needles and wait until Tuesday when we go for lab work again. I'm sorry to sound so irritated, but I am!

Please pray that we get through this time w/no sickness or infections and that the cancer continues to shrink and go away...FOREVER!!!!!

We love you all,
Rick, Sheila and Madelyn

Tuesday, April 10, 2007

Interim MRI results

We have reached the 3 week point after the most recent round of chemotherapy. It's time for round 3 which will be given over 3 days. She will receive cyclophosphamide (cytoxan) and etoposide (VP-16). The VP-16 will be given over 3 days, so we'll have a full day on Wednesday the 11th and half days Thursday and Friday.

Her blood counts were good. Her platelets were 318,000, up from 84,000. Her white blood cell (WBC) count is 4.5, the lowest we have seen yet, but her ANC is 1035, which is still above the threshold for treatment. Her hemoglobin is 10.6, which is consistent with what we have seen previously.

On Monday (yesterday) Madelyn went in for a mid-treatment MRI to check how she is responding to the first two rounds of chemotherapy. We were a littel hesitant about this because of the problems she had during anesthesia when her port-a-cath was placed. For this test, however, she only needed to be sedated a little deeper than sleeping to ensure she did not move for the 1 1/2 hour test.

She came back to us around 2:30 and began to rouse quickly. Sheila was allowed to feed her and the world was good again. We packed up and went home. With the MRI complete, our focus then shifted to the results. Has chemotherapy been effective? What if there has been no change? What if it is worse? What then?

I had a softball game Monday night @ 7:30 against the "new" BCBS Blue Dogs. When the game was over (we won 17-2, I was 3-3) I had a few beers with the guys as a way to keep my mind off of the results. With our chemotherapy appointment scheduled for Wednesday, we asked the doctors to take their time and we would review the results then.

Sheila called me about 9PM and said doctor Kevin McRedmond had called her with the results. She was in tears and instantly I felt sick. I quickly realized that with a scheduled appointment on Wednesday, there is no way they would call with bad news that late at night. According to the radiologist and oncologists, all of Madelyn's affected areas show a 50-75% REDUCTION in tumor size (also a reduction in tumor count in the liver). I fell to my knees and cried like a baby.

I hung up with Sheila and called Kaitlyn. She had softball practice and was not home yet. I spoke with Kelli and explained things to her. I then called my mother and left her a message.

I didn't come home until 10:30. I had a few more beers and reflected on the good news. This is surely the work of the Lord. Yesterday in the hospital, as we left her with Dr. Hubbird (pediatric sedation), I felt overwhelmed. I had to stop in the hallway and gather myself. Most people figure that as you go down this path, you become more accustomed to dealing with stress, shocking news, potentially negative results, etc. I reached a limit Monday. I sat in the sedation waiting area waiting for Madelyn to return and told Sheila that I just felt like crying but didn't know why. Now, we finally have some fresh good news. We of course approach this with guarded joy, and its still in her and we will have many more nights of worry. But for now, I have to say it feels good to take just a minute and realize that the last 6 weeks have begun to reverse this curse and we may be on the way to complete recovery.

I hope everyone had a happy Easter and for at least moment truly remembered the purpose of the holiday. I love my backyard because of my dogwood tree. Only two days removed from Easter, the blossoms are gone. I love that flowering tree. I touch the petals, each tip appears stained in blood and I think of what Jesus did for all of us and I am grateful. God did not do this to us, but he did allow it to happen. Now when I pray, I thank Him for all of the blessing I have and ask for his will to be that Madelyn does not suffer and that he use her as a testimony to the power of the Lord and prayer.

Thanks to everyone for their continued prayers and support.

Love,
The Bell Family

Friday, March 30, 2007

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

Monday, March 19, 2007

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

Saturday, March 17, 2007

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

Friday, March 9, 2007

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

Saturday, March 3, 2007

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.

Sunday, February 25, 2007

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!

Friday, February 23, 2007

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

Tuesday, February 20, 2007

For Better or Worse...

I entitled this post "For Better or Worse" because some things have changed and our path to wellness for Madelyn is about to take a new course.

Sheila's 30th birthday was 2/15 and we had a small outing on 2/17. As Sheila and I said goodbye to Madelyn to go out for the evening, I noticed that the lymph nodes in her neck on the left side were considerably larger than I had ever noticed. This alarmed us and we called the on call oncologist Sunday. We scheduled an appointment for Monday (2/19) and waited.

Sheila and I were armed with questions before the meeting. We wanted to know definitively what we were looking for to tell us that we should no longer wait. We felt impotent and that we may be waiting too long.

When we met with Dr. Pirich, she examined Madelyn and we all sat down to discuss her findings. To her, this is a significant finding and her gut feeling is that Madelyn's disease can no longer be treated with just supportive care and we should begin chemotherapy. Finally, someone was ready to take action. Suddenly, we were both very quiet when we began to look forward to what the near future holds. While we were now going to attack this disease, the effects of chemotherapy on our beautiful baby girl flashed through our minds. Nausea, vomiting, diarrhea, brittle hair and hair loss are the most common side effects seen within days of treatment. Other, more haunting effects, lay down the road with literally no end in sight.

We initially questioned whether we should even choose to go with chemotherapy. Could this just be her lesions getting larger before they get smaller and disappear? Are her nodes enlarged because she has been sick?

The next step is for us to get a baseline before chemotherapy. This includes another MRI session which includes her head, neck, chest, and abdomen as well as a repeat bone marrow biopsy/aspirate. This was scheduled for today. We went in at 7:30 and she was on the table at 8:45. Everything went well and we had her back and on the way home by 12:30. Dr. Pirich called at 4:30 to tell us that:

1. The size of the lesions in her liver are relatively unchanged from 1/30, but the number had increased.
2. The primary tumor in her chest appeared only slightly changed with some increased tumor tissue toward the left neck.
3. The nodes in her left neck were larger.
4. The nodes in her right neck were now large enough to consider pathological (with disease).

We were previously unaware of involvement of the right neck due to the fact that previously they measured less than 1 cm. This is significant because to Dr. Pirich this changes her stage from a Stage 4S to a Stage 4 (most serious). I read the staging requirements and lymph node involvement for Stage 4 is "distant". I am not sure how distant is defined so I am not overly alarmed. Dr. Pirich's feeling that we should begin treating with chemotherapy are reinforced by the MRI findings.

Regardless of her stage, the treatment is the same for Madelyn. Sheila and I have accepted that chemotherapy is the next logical step. Dr. Pirich provided us with drug facts on the four agents. The plan is to have a "round" of chemotherapy which is 4 separate sessions 3 weeks apart. The first session will be this weekend. Madelyn goes in Friday for a central line and will be admitted for the first run of chemotherapy after that. We still wait to hear the results of the bone marow biopsy, which should come back Thursday.

Once she is admitted, we will also have a echocardiogram (sonogram of her heart) and hearing test. Some of the meds after heart rhythm and hearing, so we need a baseline for that as well.

If there is any good news, it is that at the end of this round of chemotherapy, we expect to stop tumor growth and actually reduce the size of existing tumors. We will do some tests at the end of the second round to determine efficacy. After the first round of chemotherapy this weekend, we hope that future chemotherapy can be done in the clinic and will not require admittance.

I will update this posting periodically. Please check back and thank you for your continued prayers for Madelyn.

Love,
The Bell Family

Tuesday, February 13, 2007

Update on VMA/HVA levels

On 1/30/2007 we had our followup visit after getting new MRIs. At that time we took some urine for her regular VMA/HVA levels. For those of you who forgot what those are, click here to review. Her levels on 1/8/2007 were:
VMA: 223
HVA: 160

From her urine on 1/30/2007, both levels have risen sharply. Her new levels are:

VMA: 911
HVA: 423

Upon speaking with Dr. Ron we discussed the results, which initially floored us. The rise was to be somewhat expected because her liver is larger, so there is more neuroblastoma tissue in her body. Sheila and I just didn't expect this much.

Madelyn has a little bit of an upper respiratory infection right now (from me, sorry). She hs a mild inner ear infection and has some fluid in her nasal passages and throat. Otherwise, she is developing so well. On 2/12, her weight was 17lbs 6.5oz. She is doing everything well.

Dr. Ron says that our main focus is her behavior and her general presence. The main things we are watching for are difficulty breating (assuming she's not sick with a cold) and her appetite (which is great right now). If we see any behavioral changes in these areas, we'll have to revisit our current treatment plan. Right now though, we are staying the course.

I noticed a vein on her right side over her liver and remembered seeing a picture of a 1 month old infant with hepatomegaly (liver enlargement) secondary to neuroblastoma and the skin on the abdomen was very thin and vascular (lots of veins). Sheila and I talked and we are going to begin taking pictures daily of her torso and I want to start measuring her abdomen. Her torso will increase in circumference due to normal growth, but I want to measure her all around, then center line abdomen to center line of her spine for each side. While the circumference should increase, it will help us know how she is changing bilaterally and we can chart out both the circumference from center line to center line aswell as monitor the ratio between the two. We hope for a normal progression and regression, but looking at her is so subjective. To say it looks bigger gives no quantification, and those of you who know me know that I am a details and number guy. No one as said to do this, but its free and can indicate changes that we should know about. Seeing her everyday makes it difficult. This should help. At least we can do something because these 3 weeks between visits are killing us.

We missed church Sunday because Madelyn was sick, and we didn't want her exposed to new infectious stuff or to bring her maladies into the nursery at SeaCoast.

I am coming to the end of my time at TSFG (2/23 - last day). I am really going to miss those guys and I hope we'll stay in touch, but I am a realist. I promise to make an effort, and this is a record to remind myself to do so. For all of the things that may frustrate me about the job, I do love the people. I'll be starting at Blue Cross Blue Shield (round 2!) on 2/26/2006. I would have liked to take some time off, but we really can't afford to not earn as much as we can while the getting's good. Sheila is doing fantastic! She and Debbie Thrash have "inherited" a subdivision and they are busy getting organized to market the heck out it. Sheila started really pressing because of the time she had to spend with Madelyn over the holidays and during the diagnosis of this stuff. Like any sales job, aany dry period takes time to recover, but she's on the right track.

Thanks for all fo your continued prayers and support.

Love,
The Bell Family

Wednesday, January 31, 2007

Big Day! New MRI on 1/30

We had a day today! Originally Madelyn was scheduled for an MRI @ 9:30 and doctor's visit with the oncology team @ 2PM. The day started out well...

At 7:30AM, we received a call from the radiology folks. Madelyn was scheduled for an MRI of the head, neck, chest, and abdomen @ 9:30. The other time she had an MRI, she was supposed to have contrast as well, but woke up when they attempted to administer the dye. Since everyone felt it was unlikely that she would stay asleep this time too, she needed to be anesthetized. Of course, anesthesia was not ordered, so we were told it was very likely that we would have to reschedule as in this person's 4 years at Palmetto Richland, he had only once seen the same thing actually happen the same day. We told him he was about to see his second.

We called our friend Beth Selbee, an anesthesiologist @ PR. She confirmed that if they called up and requested someone, there were people available. We arrived at 8:45 and at 10AM we turned our baby girl over to them. Oddly, we were there as they initiated sedation, and it was a little unsettling to both of us. For Sheila, she had never seen it before and I had, but the fact that it's your baby wipes away all logic and you ache. We left them to go get some breakfast and the scan began around 10AM.

We sat impatiently in the surgical waiting area. At around 11:30, our table was ready (they give you the PagerNet devices to call you). Only one parent can go back, so Sheila went. I sat there until they called me back @ 12:25 (long 55 minutes) and said they had been moved to outpatient surgery for the final recovery stages. When I got to room 9, Sheila was feeding her and Madelyn's eyes were open and bright (she had not eaten since 5:30). We convinced the nurse to leave in the IV and shut it off so that oncology could draw blood if necessary to minimize her pain and discomfort. We left at around 1PM to grab a bite and head off to the 2PM appointment.

After we ate, we checked in at the oncology center and signed in at the office at 1:55. We were brought back quickly and gather Madelyn's vitals.

Weight: 17lbs 10oz (WOW!)
Height: 66cm (26in)

From there, we were seen by a resident and she performed a physical exam. Once she was done, we waited for Dr. Neuberg to tell us the results from the MRI. At 3:30, he came in and told us that he could not yet tell us anything because he was having difficulty comparing it to the last results because he couldn't visualize both at the same time. He told us he would call us with the results later. So, around 4PM we left for home.

Dr. Neuberg called around 6PM to tell us that (1) the tumor in her chest had not changed and (2) the tumors in her liver had become larger. We expected this regarding the tumors in her liver as her liver is visibly larger and can be felt on physical exam. So, we are going to stay on this course. Everyone is still optimistic that this can still regress on its own given her positive gentics, histology, and ploidy.

I am changing jobs and returning to Blue Cross Blue Shield of SC at the end of February. Given that we will be transitioning to a new group insurance plan, we may change the appointments to no come in March to avoid high COBRA costs. Her current medical bills are in excess of $50,000 and as of now we have been billed well over $10,000 of that. Some of the bills are being adjusted, so we don't really know the damage yet.

We have been attending Seacoast for the last three weeks, and honestly I look forward to Sunday morning. Madelyn will be in the Baby Dedication on 2/25/2007 at the Columbia campus. This ceremony allows Seacoast families and friends to gather for a special occasion of dedicating their children to the Lord and committing to raising their children in a Godly home. We encourage our friends in the Columbia area to attend if possible.

For your viewing pleasure, we have a video where Madelyn's has discovered raspberries, if you know what we mean.

Thanks fo your continued support and check back often.

The Bell Family

Wednesday, January 24, 2007

I just had to share this with you all!


Attitude

There once was a woman who woke up one morning, looked in the mirror,and noticed she had only three hairs on her head.

Well," she said, "I think I'll braid my hair today?"
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.

"H-M-M," she said, "I think I'll part my hair down the middle today?"
So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.

"Well," she said, "today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.

"YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

Live simply, Love generously, Care deeply, Speak kindly.......

Leave the rest to God!!!

Tuesday, January 23, 2007

4 Month Check Up Today!

We saw Dr. Riley (Pediatrician) this morning. Madelyn weighs 16lbs 9.5ozs and is 26in. long. She is in the 75% for head circumfrence, and 95% for height and weight. She passed the physical with flying colors. The rash she has on her forhead may be eczema or just a winter rash, we have to see how it changes as the season changes. Dr. Riley measured her liver and said it seems to have grown. Last time it we 2 fingers high and this time it was 3 fingers. We'll know more about that next Tuesday when we meet w/Oncology and have the MRI's done. I talked to her about our feeding regime. I explained that it seems like by evening time Madelyn is starving to death and all she wants to do is eat. She said that is a cluster feeding and Madelyn is just storing up for overnight, considering she goes 7-9 hours without eating. But she told me to keep introducing the veggies and fruits and once we get through them all to start feeding her 2-3 times a day w/veggies, fruit and cereal. By the time she is 6 months old she should be on cereal & fruit in the morning, veggie & fruit for lunch and cereal & veggie for dinner and milk in between as needed. I can't believe how fast she is growing up! I read today that within the next month or so, she "should" be able to sit up with supervision of course and say "mama" & "dada", I will truly have a heart attack when that happens. Understand now that she has been "talking" mumbo jumbo for a while now, but to me she is still that helpless little baby I brought home from the hospital! Well, I guess there really isn't anything we as parents can do to stop them from growing up, I guess I just didn't realize how fast it happens!!

Friday, January 19, 2007

Update - VMA/HVA results

Hi all, and thanks for visiting! I have noticed that visitation to the site has waned a little bit. I know you're all busy and we appreciate those of you who take time out of your busy schedules to stop by. With us in a wait and see mode now, there are fewer medical updates then before. We will continue to keep you up to date on her continued development.

Sheila and I are a little concerned with her liver. She seems to have some enlargement, but this is sort of expected. We received the results of the VMA/HVA urine tests performed on a specimen drawn on 1/8/2007. VMA (Vanillylmandelic acid) and HVA (Homovanillic acid) are end-products of the catecholamine metabolism related to neuroblastoma. For our situation, this is a non-invasive way to monitor Madelyn's disease. Between the raw values found in her urine and the ratio of the two, doctors can deduce how her disease if progressing without radiation (although we will be doing MRIs every 6 weeks to visualize the tumors). The values we got today were

VMA: 223
HVA: 160

The only value we had from before was a VMA of 359. Obviously this is a significant drop, but use caution when reading this. The initial results from urine taken on 12/13/2006, were sent from Palmetto Richland to Quest Diagnostics, a local laboratory. The Oncology group sends their VMA/HVA tests out to another lab, and this is where the most recent results came from. SO, in our minds, the recent results are our baseline. We'll have a repeat VMA/HVA every three weeks, ad we'll document those results here. While there is nothing that indicates we should read a lot into the decrease we see from the two tests, at least the value did not increase. If this decrease is as it reads, neuroblastoma can still progress and we could see a future increase. While this is a good non-invasive test, it is used by our Oncology team as a reference point and not a sole indicator of Madelyn's disease. All disclaimers aside, we were happy to hear that the results were in and did not indicate anything we should be concerned about at this time.

ACTIVITIES: Sheila bought Madelyn some Baby Einstein books today. She LOVED the book of colors, and we established a while back that her favorite color (as determined by her physical reaction) is red. The first page is red, and she absolutely lit up when she saw it.

FOOD: Madelyn is in her third day of peas. She makes this awful face, but after a few spoonfuls moves toward the spoon to shorten the distance to her mouth. We're still deciding what the next food should be. Please vote on your favorite using the poll on the right side of the page.

Sheila has been working regularly, and both grandmas have been pitching in to watch her. Having them both nearby is a God send for us. I probably should tell them that in person since I've told the entire WWW.

We are getting into a regular schedule for church. We were members of Seacoast (http://www.seacoast.org) in Mt. Pleasant when we lived in Charleston. We attended the Columbia campus and loved it. It is a great environment to worship. If you enjoy music, friendly people, and a straight-forward message then we encourage you to attend Seacoast near you. If you don't live near a campus, they have Podcasts for you Ipod users, Windows media files for download, and a new Internet Campus (currently in Beta).

Enough for now. We'll post more good news soon. Thank you for keeping us in your prayers; you are in ours. Next visit is 1/30/2007 for an MRI and physical exam.

The Bell Family

Monday, January 15, 2007

Update

Well, Madelyn is an old pro at rolling over now. She rolls to the right side from her back to her belly. But once she gets there, she gets mad b/c she wants to be back on her back so she can roll over again. Now we need to work on rolling from back to front. We have moved on from carrots to peas and at first she didn't seem to like them too much, then she couldn't get enough. Something else we learned is that she loves new sounds that Mommy & Daddy make at her. Please click here to look at the video where she heard Daddy making an oinking sound for the first time!

We love you all!
The Bell Family

Friday, January 12, 2007

Weekly Update

Well, not too much to update this week. This was my first week back to work. As it stands I am going to go to the office Tues, Wed, and Fri. and work from home Mon. and Thurs. Rick's mom watches her in the morning until 2pm when she has to go to work, then my mom watches her until about 6pm when I get home. It's definitely been an adjustment for both of us. I hate leaving her, but I have to get back in the saddle and start making money to pay for the Doctor bills that are starting to roll in. What a catch 22. She's sick so I want to spend every minute with her, but because she's sick I have to leave her and go to work to make the money to pay for her treatment. She's been pretty fussy in the evenings too, so I know she's not adjusting to it too well either. Although, Miss Thing did start eating baby food this week. We had carrots last night and tonight for dinner and she LOVED it. I tried them and they aren't too good, but I guess when all you are used to eating is milk, any change is pretty tasty. Boy, wait until she gets to try chocolate and ice cream and all the wonderful things in life! She hasn't rolled over since that first time that we caught it on video. She's on the verge again, and if she would stop sucking on her fingers and use that arm to push herself up, she would have it no problem. She's pretty funny to watch, b/c she has her momma's temper and gets so mad. She's learned this neat new thing...screaming at the top of her lungs with this high pitched scream which I swear is so high pitched, all the dogs in the neighborhood can hear it like a dog whistle and come running! So she uses this neat little tool that she has learned to express her frustration when she can't push herself completely over.

I spoke with Oncology yesterday. We are scheduled for our 1st MRI since diagnosis Jan. 30 at 8:30am. Then they will do her physical exam that same afternoon at 2:00. We will post the results when we get them of course.

Again, we just want to express to all you who visit this blog daily, email and post comments, how much your sweet words and encouragement mean to us. I can't tell you how many times I have started crying with either happy or sad tears at the wonderful things you all say. We love all of you. PLEASE KEEP US IN YOUR THOUGHTS AND PRAYERS, IT REALLY IS WORKING!!!!

Sheila