Happy Birthday Little Miss Madelyn!

First I want to say, each and every minute that we have with Madelyn Grace truly is a blessing. Watching this little miracle turn 2 this weekend was amazing, we are so thankful for her and every blessing in our life.

So, Madelyn is now in Preschool and absolutely loves it! She can name each and every one of her friends at school and both of her teachers. She talks about them every day and can't wait to get there. She still gets a little upset when we drop her off, but she is getting used to it. I think I am getting used to it too, b/c I don't cry that much anymore either!:o)

Madelyn's birthday weekend started on Tuesday. My friend Cathy and her 4yr old son, Parker, Madelyn and I all went to Charleston to see The Backyardigan's Live Show. She of course loved it and couldn't get enough. She danced and sang and when Pablo would go off the stage in his dancing red shoes, she would scream, "Paaaaaaaaabbbbllloooooooo, where are you?!" She was so cute and got a t-shirt, Tasha barrettes and a glowing Backyardigans wand. (She's not spoiled)

We then had a fun little Blue's Clue's birthday party at Madelyn's school on Friday. My brother and Liz flew in for her parties and brought a surprise for us. Our great friends from NY's son, Mitchell who is 10 and is like a brother/son to us came with them. He had so much fun chasing and catching lizards. And Madelyn LOVES him. They chased each other around the house and she got so upset when they left today.

We had an Elmo Birthday party at the Bounce Around on Saturday and had so many of Madelyn's friends there. She had so much fun and is growing so much, in every aspect. Her emotions are at an all time high. She gets so happy, excited, sad, mad and ANGRY!! Phew, the tantrums that she can throw now vs. 6 months ago, don't even compare. She is learning so much from school. She had a couple different songs that she sings on a regular basis, she can count to 10 in Spanish and knows all of the days of the week. She got her first homework assignment on Friday. They are learning the classroom rules, so we have get to review them.

I have added some new pictures to the slide show. Enjoy and adore them, I do every single day!

Thank you for checking in and we love you all! Remember that September is Childhood Cancer Awareness Month, pray for all those children who battle this horrible disease everyday.

With love,
The Bell Family

Meeting with Neurosurgeon done!

First of all, I would like to say that today, September 5 is exactly one year to the day that we got the news that Madelyn was NED!!! Praise God!!!!

Well, we met with Dr. Smith the Neurosurgeon on Wednesday. Everything went well and we really liked him. He was straight to the point and Madelyn really took to him after warming up to him. He really liked her too, but what's not to like. Dr. Smith agrees with Rick and I. He said the tumor by Madelyn's spine IS NOT CANCER! He said if it is not causing her pain or interfering with anything neurological, then we are not going to mess with it. We can monitor it with the regular MRI's that we are doing every 6 months and if we see any change from the MRI's or if it starts causing her pain then we will obviously reconvene and re-evaluate, other than that we are not going to mess with it!

Ms. Madelyn has started preschool. She's been there 2 weeks now and she LOVES it. At first she kept saying that she wanted to go to church, because the nursery at church is the only nursery she has ever been too. But now she says everynight when I say goodnight to her, "go to school tomorrow". She is only going 3 full days a week this year, we'll put her in 5 days next year. We have already seen a change in her, she sings different songs, talks about the kids at school and just seems more independent. We went to an open house last night and it really is amazing the things that they start teaching at such a young age. The teachers kept commenting on how smart Madelyn is and how she loves to go up to the wall that all the letters are hung on and tell them what each of them are. Ok, so I am going to brag for a minute, this is some of the new things Madelyn has been doing:

Knows every letter of the alphabet to say and while looking at the letter
Knows 1-11 numbers while looking at it
Counts to 20
Counts to 5 in Spanish
Can spell her first, middle and last name
Can write an "M" "A" and kind of write a "D"
Starting to know her left from her right, we have been working on this this week.

She truly is an amazing little girl who will be 2 on the 20th of this month by the way!!! We are going to have a birthday party at school for her on the 19th and then we are having another birthday party for her at the Bounce Around on Saturday. My brother and fiance, Liz, are coming down for it, we are so excited.

Her next checkup at the clinic is on 9/30. The will test her VMA/HVA and hopefully everything will be just fine for another 2 months. We'll update when we know the results.

Just wanted to update you all and thank you so much for keeping up on Madelyn's progress. She continues to amaze me everyday and I am so in awe of her.

Also remember September is Pediatric Cancer Awareness Month and more specifically Sept. 13 is National Pediatric Cancer Awareness Day. Let's remember all of those who are battling, or have battled this terrible, terrible beast! Please click on this link to sign a petition to draw more of the National Cancer Research funds for Pediatric Cancer Research. Amazingly enough only 3% of the research money goes towards researching cures for children's cancer...what a shame. But please sign the petition and do your part in helping to change this.

Lots of love,
The Bell's

60 Minutes Australia Clip on Neuroblastoma

Please click this link to see one of our friends Dylan Hartung's family and Olivia Lambert's family interviewing w/60 Minutes Australia (where they are from) about Neuroblastoma. It just gives a tidbit of what families who have children with cancer go through. Please pray for Dylan and Olivia and all families fighting this fight!

We have reached the 1 year mark!!!!

Madelyn had her 1 year checkup last week. Earlier in July, we submitted her sample for VMA/HVA analysis and got a high reading. We have had a few false results, so we asked the staff to resubmit and everything came back normal, so going in to her 1 year MRI we felt pretty good. She is healthy in appearance and developing great!!! She knows her entire alphabet, can count to 20+, knows her colors and shapes, and is close to recognizing her numbers by sight. She is beginning to develop a golf game that will put Dad to shame very soon. So, when we went for our visit Wednesday for the MRI the most we were worried about was how the anesthesia would go.

If you recall, Madelyn has had some odd reactions to anesthesia, or that's our best guess. The last two times she was put under anesthesia, Maddy would develop a high fever about three hours after the MRI was over. We changed to some older drugs, pentabarbital and fentanyl. The only issue is that it takes longer to come out of the deep sleep. The day began with the power and A/C going on the blink at the hospital, getting moved to a different area that had spot coolers (it was still 85 degrees in there), and not starting the MRI until about 2:45PM. Everything went pretty well and we left the hospital about 9PM. We had to return on Thursday around 1:30PM for the results.

We came in at 1:30 on Thursday and immediately the resident said her MRI was good, so we could relax. When Dr. Neuberg came in he went over the MRI:

1. Her chest looks good. The tumor size is now 2.7cm x 1.1cm x 2.0cm. Now they are able to visualize the tumor and it partially encases the subclavian artery (from the chest to the arm) and it butts up to the carotid artery (head and brain) and esophagus. We asked if this was a concern and the answer was not at this time. We (Sheila and I) are still concerned that as these vessels grow, the remaining masses could restrict bloodflow. We plan to watch that closely and ask about it going forward.

2. Her liver looks almost normal.

3. Her neck looks the same, and her nodes are marginal (around 10-11mm). This has not changed.

So, her neuroblastoma appears to be in check and the doctor even went as far to say that based upon the findings, her cancer may have evolved to ganglioneuroma, a benign tumor that will not progress any further. This is GREAT news.

There was, however, a slight punch in the gut that we are still dealing with. There appears to be a mass near her spine at the T12 level. From the report it is extradural (outside of the spinal column). This is new, but upon reviewing her films, the radiologists stated this has been there all along, since December 2006. (We are getting her films on DVD today for our review). Initially, we were shocked and not thinking very clearly. The doctors deduce that since it has been there for almost two years and she appears to be completely healthy as far as leg strength, balance, etc. that we should not be concerned. All it took was a few hours of quiet time for both Sheila and I to quickly decide that this is not sufficient. We think we HAVE to know what this is and have begun steps to get referrals for neurologists/neurosurgeons to dial this in. My quick research turned up no likely candidates. She is asymptomatic and looks fine. The countless number of possibilities for what this mass could be deeply concern us and while it appears to be isolated to this single tumor now, if it is something like another type of cancer, we want to catch it while it is still outside of the spinal column and not spread to other parts of her body.

The bad part is that this "new" finding is casting a shadow over the great news that the neuroblastoma is in check and she has been free of this scourge for over a year now. We have read frequently where children have been declared NED and relapsed between 6 months and 1 year. Relapse is obviously not good, but it usually goes beyond "oh yeah, the cancer is back". It is frequently more aggressive and because treatment has not been delivered during the NED phase, it sometimes progresses under the radar even more than the original disease. For this we are very grateful.

As far as the tumor near her spine, we asked and received a referral to see a pediatric neurosurgeon. (This post was written in two sittings, so please bear with me) We have looked at the report and the radiologists state there that based upon the etiology (appearance and shape) that it looks like a benign peripheral nerve sheath tumor or a benign vascular mass. Our hope is that the neurosurgeon agrees. We requested to be referred directly to a neurosurgeon because it eliminates the need to be seen by a neurologist who practices pretty much the same clinical medicine that a neurosurgeon does, but cannot go forward if a biopsy is required for definitive results. The appointment is September 3rd.

Again, thanks for taking the time to check in with us. Your continued support is not taken for granted and we love you all for caring about Madelyn.

Rick

It's been a while!!!

I just wanted to provide a quick update as to what's been going on...

Madelyn is doing great! Her vocabulary grows every day and her cuteness is off the charts. She does look just like daddy!

We recently went Richmond for the 4th and visited with Erin and Corrie. I got in a round of golf while I was there (84, not too bad for never playing there before) but we got rained out on Saturday for pool time. Billy fed us like kings on Saturday...king crab legs, ribeye, lobster tails, bacon wrapped shrimp, and I think there were vegetables too. Rick (Erin's dad) made homemade ice cream cake. It was better than the store bought stuff!!! We fought the traffic coming home and a good time was had by all.

Sheila's real estate business is picking up despite the gloom and doom reports of the state of the real estate market. Work for me is going OK, as always, it's day to day. Kaitlyn HAS A JOB!!!!! We are very proud of her. She is working at store at Tanger Outlet in Myrtle Beach. She hasn't been up to visit yet this summer, but we're hoping for her to be here in a week or two.

Madelyn had a monthly checkup a week or so ago and we scheduled her MRI for 7/30. We got her VMA/HVA results back and they were higher than the month before. Immediately we were concerned, but many of you will recall the false levels we got last year in June and earlier this year in March. We are getting a repeat test and should have that back before the MRI.

So, that's a little blurb about what's been going on. My apologies for not posting more often. When things are going well, we tend to post very little and when we get a scare, suddenly we post like professionals.

If you are reading this, chances are you are a special person to our family. We appreciate you thinking about us (maybe just Maddy, who can blame you) and if we can do something for you, please let us know.

Love,
The Bell Family

Well...we are back from NY!

Hello all and thank you for stopping in! We have had a busy time since the last post. Rick, Me, my Mom and Madelyn all flew up to NY to visit my brother last week. We went for 5 days and wow we had so much fun. Madelyn did so good on the plane. Everyone even commented to us as we were getting off the planes, how well she did. (You know when we were getting on, they were all rolling their eyes thinking "great this kid is going to be screaming the whole time") But she didn't, instead she played with the fold up tables, the blind over the windows and read her books. So we went to visit my brother and Liz and they got engaged while we were there!!! We've known since January, but it was a surprise to Liz and we also had a surprise birthday party for her. It was a weekend full of surprises. It was a very busy weekend, but we got to see a lot of people we haven't seen in a long time. While in NY, we visited Chuck E. Cheese for the first time and Madelyn had a blast. Didn't realize how old I was getting until I found my self grunting and groaing while climbing through the hamster looking tubes that they have for the kids. Boy, I'll be glad when Madelyn is big enough to go through by herself. She rode on the rides, ate pizza and played games, she is GREAT at Skeeball!

While we were in NY, my partner texted me to tell me that Madelyn's picture was all over Bi-Lo Grocery Stores. Come to find out, Children's Chance teamed up with Bi-Lo and placed tubes at the registers to help raise money for Children's Chance and they used Madelyn's picture and another little girl. I'm sure as adorable as both of them are, it should help to raise a lot of money.

We had our montly check up yesterday and to my amazement, Madelyn hates going to the doctor even more than last month...I didn't think it was possible. She screamed bloody murder the entire time. They could only get her temperature, weight and a short exam. So...I have no idea how tall she is. She stood on the scale long enough for me to catch a glimpse of 29lbs. The doctors say she is doing great and we will schedule the next MRI in July, ALMOST 1 YEAR SINCE THE COMPLETION OF TREATMENT!!!

We are still working on potty training. Hopefully, with the new and improved potty chair that sings and can sense when she goes and lights up and spits out stickers as a reward, we can get her to start using it. Either that or it will just scare the crap out of her. Just kidding, she likes to sit on it (with clothes on or off, doesn't matter) and dance and smile while it is singing.

Other than that, life is great and we are so happy to be doing normal stuff. Last summer was a lot different for us. We can actually do normal things this summer. Madelyn goes to school in 96 days...not sure what to think about that. I am so happy that she will be in an environment where there are other children and she can do normal 2 year old things, but I'm going to miss popping in at the house when I have an extra minute and getting to love on her. Well, such is life I guess.

Again, thanks for checking in and we truly appreciate your thoughts and prayers.

Lots of Love,
The Bells

Check out Maddy's Story on Children's Chance Site!

We received an email from Children’s Chance, which is a local organization that helps families with children with cancer asking for pictures of the kids who have or have had cancer so that they could use them in the grant requests that they send out. We provided them to Children’s Chance and the Public Relations Director asked me to send her more pictures and Madelyn’s story so that they could post it on their “Meet the Families” portion of their website. So I did and I thought you would all like to read it! Here is their site, scroll down to meet the families' portion for Maddy’s story!

http://www.childrenschance.org/

If you are interested, browse the site, there is really good info on there!

Maddy is doing great! I got a call last week and talked w/one of our Oncologist's, Dr. Kevin, who has been researching the reaction that Madelyn has had after here MRI's. What he found was that last summer 6/15/07, the FDA issued an alert for Propofol, the medicine they use to put Madelyn to sleep during her MRI's. They stated that a cluster of children were experiencing chills, fever and body aches 6-18 hours after receiving Propofol. The alert also stated that it could last up to 3 days. Luckily, it did not in our case. But THANK YOU Dr. Kevin for finding this study. Now before Madelyn's next MRI, we will be meeting w/Peds. Sedation to figure out what else we can use to put her to sleep. I am just so grateful that he figured it out. I can't begin to tell you how scary it was when she started shivering and spiking such a high fever in such a short period of time.

Lots of love and we'll post more later. Thanks for continuing to check in on us! We truly love reading all of your posts!!