Hope you enjoy our Christmas card to you all!

Just wanted to take a minute to wish everyone a wonderful Christmas. Per the last ckup, Madelyn is doing great. Our Oncologist had best physical exam she has ever had. VMA/HVA came back normal and we are scheduled for her 6 month MRI the end of this month, the 27th. We are staying in SC for the holidays. We had originally planned to go to NY this year, but my mom started a new job and couldn't get the time off, so my brother and Liz are coming here. We are all doing ok through this difficult time of year. Madelyn had her clinic Christmas party at the zoo a couple weeks ago and we also had dinner with the Carolina Gamecock's last week. We met the team and Steve Spurrier and had pictures taken.

Kaitlyn is here through the week and we are having a blast. Feels cold enough for snow tonight, but we just got through 75 degree weather all week. Supposed to go back up to 70's for Christmas eve and Christmas day. Maybe we'll go to the park or something, just feels plain weird!:o) Going to Christmas Eve service at church and then Liz is making us an Italian Christmas dinner. I'm really excited and then we are having dinner at Rick's mom's house Christmas day. Maddy has seen Santa a couple of times and got pictures. She asked for a "Thomas the Choo Choo" for Christmas. We'll have to see if she gets it. She say's "Santa brings me toys if I am a good girl", it's really cute!

Merry Christmas, God Bless and remember the true meaning of the season!
With love,
The Bell's

Merry Christmas to all!!

Send your own ElfYourself eCards

Sorry it's been so long...

Well, we made our 12 day trip to NY for my best friend Corrie's wedding and my other best friend Erin's grandmothers funeral. Madelyn and I were both in the wedding and it was awesome. Madelyn did really well, at the end of the evening she got fussy, but it had been a long day for all of us. Other than that, she got to see the blizzard of snow as we left NY on our long 14 hour drive back to SC. We followed snow plows out...how appropriate! As you can see she was a little pirate princess for Halloween. She went trick-or-treating for the first time and loved it. She is growing so fast. Everything is normal...going through the "terrible, terrible two's" as I like to call them. She has her own attitude, way of doing things and agenda and if it doesn't go along w/what she wants...WATCH OUT!! We are working on this. She loves school, she is still only going 3 days a week, but she loves it and asks to go on the days she isn't there. She is taking ballet and Rick asked her the other day, "Do you like ballet?" and she answered "I LOVE ballet Daddy". She knows so much I can't even begin to type it all, well I'll type a little: Counts to 50, counts to 15 in Spanish, knows all of her months, all of the days of the week, of course her alphabet and can spell her first, middle and last name. She can write an M, A and a D. She likes to write 9 too.

Well our next ckup with the clinic is Nov. 25 so we will update when we hear that everything is still good! Thanks for cking in and please keep praying for all those families in the midst, those who have not begun and for those who have lost their battles to this awful disease.

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!!

Good News is Still GOOD!!!

We got Madelyn's VMA and HVA back Wednesday and they were at the level they were before March. This indicates a temporary increase due to increased Tylenol intake during her March while she was frequently sick and teething. Had it still been elevated, we would have been left wondering why but now with the MIBG results, we can sleep well for a while knowing this was just an anomaly.

Now we know to monitor her consumption of things that will increase VMA/HVA levels and try to take the results in stride.

Kaitlyn has been ROCKIN the softball field. She has frequently been the leading hitter for her high school varsity team (Carolina Forest) and tonight they won in the first round of the playoffs. Last week, KB played a brilliant game against Myrtle Beach where she went......

5 for 5 with 8 RBIs and she HIT FOR THE CYCLE. The HR of the cycle was a 3 run walk-off.

WHOA!!!!!

She has moved up to leadoff hitter from earlier in the season being pinch hit for. Her grades are OK (could be better), but she's doing a pretty good job of balancing her heavy softball schedule with school. We are VERY VERY proud of her. This weekend they travel to Graniteville (near Aiken) to play the #2 team in the state, Midland Valley. Our hope is the girls have some fun and play to their potential and as well as they've played together in the last 7 games, they have a shot.

Well, thanks for checking in and keeping up with our saga...

The Bells

GOOD NEWS!!!!

Well, the scans are complete. We had to go back today (Friday) for the 48 hour scan (48 hours after injecting her with the radioactive iodine isotope) and we were done around 1PM. From there, it was bated breath until about 5:30, when we began to wonder why they weren't calling. Was it bad news and they were trying to come up with the next step because they knew we would ask? We had the on-call physician paged (Dr. Roberts) and she called us back after about 20 minutes. She said that she had been busy with admissions and hadn't had a chance to look and there was no report from the radiologists in her medical record either. She said she would call us when she had a chance to look at the images and discuss them with radiology.

She called back at 7:21PM and told us that the nuclear medicine radiologist had not read the scans yet, but the general radiologist and she had both looked at the scans and there was NO EVIDENCE OR RELAPSE!!! Everything looks the way we would like. This scan sort of "glows" in areas where neuroblastoma cells would take up the iodine isotope, but they saw nothing but normal uptake (brown fat, salivary glands, etc.). Her privates were glowing, but that was because of her bladder and the fact she gets so upset her pees her diaper.

We are still awaiting an official nuclear medicine reading, but I expect nothing other than what we've already heard. This week has been one of my worst ever. Between speculating how Madelyn's disease returning will after all of us, mostly her, and how upset she gets when she goes through these scans, my heart has been so heavy. Today, after the scans, I returned home with Sheila because I didn't want to be too far from her like we were last Friday when the MRI results came back.

Right now, we are busy fielding phone calls from friends and family, and to be honest, I just want to talk to my wife and take just a minute to thank God for everything. This week we were tested, and I would be lying if I said "I knew it". But reading our previous post, we knew there was a chance that this was coincidental and had a simple explanation. There was also a chance that her disease was back. Luckily for all of us, God's Will has won out again, as it always will. I would find myself selfishly praying for Maddy's scans to be clear, and apologized mid-sentence, and prayed that His Will was for her to be OK and of not, He would help see us through. Nothing feels better than trusting in Him.

I am going to hurry Sheila off the phone, so I am sorry if she hangs up on you. But we are going to go sit on the deck, talk about Madelyn, and bask in this moment for just a short time. We know that the future will be filled with these tests for the rest of her life. While it was difficult, it will definitely prepare us better for the future.

Our love and prayers for all of you,
The Bell Family

Initial Scan Results and 6 month update

Well, we didn't quite get the rubber stamp we hoped for. Madelyn had her VMA/HVA sent out on March 18th and the results were that while they were still in normal range, they were higher than last month. We had Madelyn's MRIs on Thursday April 3. The day was not too bad, even though Madelyn couldn't eat all day.

That evening, we had a recurrence of the post-MRI fever we had back in December. About 3 hours after the scans were over, Madelyn went downhill quickly and began having chills. We took her temperature and it was 98.4. We took it every 5 minutes and watched it climb to over 103 in about and hour. We gave her Tylenol at the first measurement above 100 and rushed to the ER. By the time we really got settled in the treatment room, she had leveled off and then the fever began to break. They did a cath for a urine culture and drew blood for a CBC and blood culture. I convinced the physician to do a chemistry panel as well since I was pretty convinced there was no infection. This is the second time after an MRI that she has had this, so we wanted to get an educated guess at why. Obviously you suspect the anesthetic (propofol) or the contrast for the MRI. Both were met with doubt from the staff because they felt that the propofol should have been metabolized after a few hours and the contrast is considered a very low anaphylactic risk. They actually tried to brush it aside and call it another coincidence. Madelyn's blood work came back with nothing EXCEPT her blood sugar was high (190). They wanted to repeat with a finger stick and it came back at 130. So we will get it checked on the 9th by doing a fasting blood sugar test with our pediatrician. After conferring with the oncology staff, we are at least in agreement that next time we must come up with a different approach. We asked about the MRI results, but they weren't posted, or at least that's what we were told.

The next day, Friday the 4th, we got the call we didn't want. The MRI showed that her cervial (neck) lymph nodes were larger bilaterally than previously measured in December. They still appear to be within normal range (~1 cm), but this coupled with the increase in VMA/HVA concerns the staff. According to the physicians, they see no changes in the chest and liver. I'll come back to this later.

When I say it concerns the staff, I am alluding to the fact that Madelyn's disease could be back. Our diagnosis on September was "no evidence of disease", not cured. The concerns have forced us to do a series of diagnostic MIBG scans Wednesday the 9th through Friday the 11th. We go in tomorrow at 1PM for Madelyn's injection of radioactive iodine, and return at 3PM for her longest scan. The scans on Thursday and Friday are relatively short in comparison.

For a refresher, the MIBG injection is absorbed into any neuroblastoma cells that may be in Madelyn's body. Rather than examining Madelyn's tissues through an MRI, the MIBG will "glow" where the radiation is absorbed. When we did the MIBG in the fall, there were no obvious areas that showed disease, and we hope this is still the case.

For some of you, and definitely for us initially, we were floored. Sheila ran straight away about what the possibility of having to begin treatment again would mean; surgery for a port again, chemo, losing her hair, and considering how much she dislikes the hospital a much rougher time if it is required. We do have a reason to hope and I'll tell you why.

There were no visible changes in the chest and liver. The disease that was there before appeared to be gone or dormant in the fall. These tissues were one thing and one thing only...cancer. The lymph nodes, where morphology changes were seen this time, by their very design get larger under certain conditions. Anyone who has been to the doctor and had them feel your neck and jawline know that they are palpating for lymph node enlargement. And wouldn't you guess, Madelyn was sick in mid-March, and not just a little bit. She has had some bouts with inner ear infections, and our trip to the ER the day of the scans showed redness in the right and left ears; not necessarily an infection. Now for the VMA/HVA.

As I stated earlier, her VMA/HVA were elevated in comparison to the prior measurement but still within normal range. While researching this test over a year ago, I recalled that a number of factors other than neuroblastoma can cause elevations in the catecholamines. The week of the test was a few days removed from Madelyn's biggest bout with a cold/flu in March. She is also cutting molars now, and required some pain relief. She was getting it twice daily when the tests were done...Tylenol. You can view the list here.

So, what we have are two reasonable explanations for the changes in her diagnostic tests. This is the hope we cling to. Those of you who know me know that optimism is not my nature. Maddy has changed me, because hopelessness will not help her, Sheila, or myself. She believes nothing can hurt her. She is fearless. She has faith in us and knows when she calls, we'll be there. I can be more like her. I just have to have faith in my Father too.

It is our hope to have some results by Friday. We'll update as soon as we know. Please, for just a moment, close your eyes, picture Madelyn's beautiful face and say a prayer for her.

Thanks,
The Bell Family

Anticipating 6 month follow up MRI!

HAPPY EASTER!!! We had a wonderful Easter. We went to church this morning and then to Cracker Barrell for brunch. After we ate, neither Maddy or Mimi made it home before they fell asleep in the car. So we all came home and took a 2 hour nap and then woke up and fixed dinner. Our good friend Charles came over for dinner and my mother-in-law. It was very nice. We have discovered Maddy's pure love for ham, man she eats it up!!

Well, we were scheduled for 3/13 for our 6 month follow up MRI, but we postponed it due to Madelyn was sick w/a cold an ear infection and we weren't comfortable putting her under sedation when she was congested and wheezy. So we are scheduled for 4/3 at 12:30. We are preparing ourselves for it again. Emotionally, it truly takes me about 2 weeks to prepare myself for the sedation and anticipating the results. We did have our checkup last week and they said everything feels fine. Exams are much harder now, Madelyn does not like anything about them. She screams when the touch her w/a blood pressure cuff, thermometer or even their hands to examine her. We don't go as often as we used to so, she just doesn't like it anymore...I really can't blame her. She's been through enough exams and hospital visits to last a lifetime of a normal child.

My brother and Liz came down last week for a visit. Madelyn can say very clearly, Liz & Ronnie now. It was a great visit! We went to parks and the St. Pat's Day parade downtown. It was a WONDERFUL. We are possibly going to NY in May. We have tried to keep it to a maximum of 2 months between visits.

Mom is doing ok. We are all still trying to cope w/the loss of my father. Sometimes it doesn't seem real and other times it seems too real! We will be ok, time will make it easier I hope.

I have posted some new pictures on the slideshow so, please be sure to check them out.

Well, we will post the results of the MRI as soon as we get them. Let's pray for clean scans and great results!

Happy Easter,
The Bell's

What a fun day!

Well, we went to Playhouse Disney Live today. I wasn't sure how Madelyn would do sitting in an auditorium for 1.5 hours...but SHE LOVED IT! She really got into dancing to the music and got so excited she squealed when Mickey and Minnie came out, and really shrieked when Pooh and Tigger came out. It was so much fun. Mom and I took her and then we went to the park and played for a little while. She has the sniffles and a cough so we are battling that right now. Rick just got over a flu/cold thing that made him sleep about 36 hours straight. I am trying to avoid it, but kinda hard when you are surrounded by sickness! Everything is going good. My brother and Liz are coming down on 3/12. We are really excited to see them. Liz and I are going to run the St. Patricks Day 5k race on 3/15. Rick, my mom, Ronnie and Madelyn are going to watch us then we are going to the parade, it is going to be fun.

We are all still adjusting to life without my dad, but overall I think we are going to be okay. We found a grief support group that meets once a month, so Rick, my mom and I are going to go to that. The next meeting is Tuesday, 3/4. I am looking forward to talking to other people who feel like I do and to see how they have dealt with the pain of losing a loved one.

Madelyn's been doing great. She cut 2 more teeth on the bottom next to her two front teeth. She is trying to cut 2 more bottom molars. It really would be so much better if they just all came in at one time. But can you imagine the horror...go to bed at night and wake up w/a full mouth of chompers!!! Yikes! Her VMA/HVA levels were normal this month. We are scheduled for her MRI on 3/13 at 12:30. I really wish we could have gotten in early in the morning, but they were booked for the whole month except the day we have to register her for school. YEP THATS RIGHT FOLKS SHE IS GOING TO SCHOOL. We are signing her up for private school/day care 3 days a week. We are really excited, well I am. Rick is having a hard time with it. But I just keep thinking about how much fun she will have w/the other kids. She LOVES going to the nursery at church, so I really think she is going to do well with it. We will update when we get the results of the MRI. We have an appt. w/our Oncologists on 3/18 to go over the MRI, but no way am I going to be able to wait 5 whole days for the results...so hopefully we can update sooner than that.

Thanks for the continued prayers and thoughts for our family. We appreciate them so much!

With love,
The Bells

It's been too long...

Well it has been a long time since our last post, but we have been getting back to "normalcy" whatever that may be:o) We got through the funeral. It was a beautiful service and Rick did a wonderful job putting together a picture disc set to music. A lot of friends and family came down from NY. It is terrible the circumstances, but we got to see a lot of people we hadn't seen in awhile. My brother and Great Aunt Mary from PA stayed until 1/16 to help us clean out my mom and dad's house. We got my mom's stuff in storage and she is now living with us. We are so glad she is staying with us. It is good for us to all pull together to get through this time. Madelyn loves having her "Mimi" around all the time, and so do the rest of us!

Rick finished his last class and has 2 more to finish before he graduates w/his BSBA. He is going to clep or dantes them so he should be done pretty quickly. My best friend for the past 20+ yrs got engaged over Christmas, we are so excited. She is getting married in Oct. so we are busy planning the wedding.

Kaitlyn is going to the prom w/her boyfriend Keegan. Madelyn and I are meeting her and Kelli(Kaitlyn's mom) in Florence tomorrow to shop for a prom dress, hard to believe how fast she is growing up.

Madelyn has cut two top molars. Pediatrican was surprised and asked her "Madelyn, why are you cutting your teeth out of order?" I should have looked at her and told her that Little Miss Madelyn marches to the beat of her own drum, she definitely does not follow the "norm"! She can count to ten, has been able to for about 2 months now, knows A, B and C. We have been working on colors...she knows red, blue, white and purple. When she doesn't feel like working on them everything is purple! She got a potty chair for Christmas and was doing so well with it. She would only have maybe 2 accidents in her pull up a day. Then we threw a monkey wrench in our progress by going to PA for 5 days for Aunt Jessie's funeral and then coming home to lots of people in and out for my dad's funeral. Now she really has no interest in it at all. She just likes to have her pants pulled down, sit on the potty for about 10 seconds and then takes off running through the house and lauging naked!

Everything else has been going really good. Her VMA/HVA levels were normal last month. We go back on 2/20 for a ck up at the clinic and they will do her levels again. Then we will schedule her MRI for March. That will be 6 months post treatment...can you believe it? It seems like yesterday, but also seems like a lifetime ago with everything that has happened.

We want to thank everyone for the cards, phone calls, prayers and support while we were/are dealing with the death of my father, it has beenl so wonderful. We are truly lucky to have each and every one of you in our lives and we just wanted to say thank you!

With love,
The Bells

Update on the Services for Ronald Chrestler

I am posting this preliminary information here so that family and friends can plan accordingly to attend the services of Sheila's father, Ronald Chrestler. Note the word preliminary. This is the information we have now and some specifics are not set, but this should get everyone the information required to make decisions about travel, lodging, etc. As information becoms available, we will update the site as often as possible as it is difficult to contact everyone by phone.

1. The services are tentatively planned for Saturday January 12, 2008. No time has been chosen yet as some of the particulars of the service have ot been decided. The services will be held at:

Powers Funeral Home
832 Ridgeway Road
Lugoff, SC 29078
http://www.powersfuneralhome.net/
Click here for a map

2. We have negotiated a special hotel rate for those of you who will be traveling from out of town. The hotel information is:

Quality Inn and Suites (3 miles off I-20 exit 92)
850 US HWY 1 South
Lugoff, SC, US, 29078
Phone: (803) 438-9441
Fax: (803) 438-5784
Click Here for Map

To get the rate of $49 for any length of stay between 1/10/2008 and 1/13/2008 please call the hotel directly and mention that you are using the group "Chrestler Group"rate.

3. Memorial Fund

The family has established the Ronald Chrestler Memorial Fund and asks that in lieu of flowers to send a monetary contribution for the family for immediate needs that are the result of this tragic event. Make checks payable to:

Ronald Chrestler Memorial Fund

If you are not attending and still wish to give, please mail your check to

Ronald Chrestler Memorial Fund
c/o Patricia Chrestler
88 Choctaw Circle
Elgin, SC 29045

Again, thank you for proactively checking this blog to keep up with this situation and keeping our family in your prayers. We will publish more specific information as it becomes available.

With love and thanks,
The Bell and Chrestler Families

Not such a happy start to 2008!

First, let me start by telling you all that we got Madelyn's VMA/HVA results on Friday and everything is still normal, we are scheduled for a check up at the clinic on 1/27.

Now let me tell you another one of the hardest posts I've had to type. My family and I while here in Pennsylvania for my Great Aunt Jessie's funeral received word yesterday that my father has died. It was completely unexpected and we are trying to cope. We are heading back to SC tomorrow to begin planning another funeral, I feel this one will be much tougher. Aunt Jessie was a 95 year old woman who led a full, happy life, while my Dad was 51 and did not.

We do not have any of the logistics of the funeral planned out yet, but hopefully when we do, Rick can post if for you all.

Please keep my family in your prayers through this most difficult time.

Thank you,
Sheila

Happy New Year!

Wanted to quickly post and tell ya'll we are all doing fine. My great aunt passed away last week, so Maddy, my mom and I are leaving this am for Pennsylvania for the funeral.

Maddy is doing very well. She has been a sick w/a cold, but other than that she is great. Growing and CLIMBING on everything. We had her ears pierced last week and she looks adorable.

Nana bought her a potty chair for Christmas. We have been experimenting with it. She has gone stinky in it 3 times in the last 3 days. I know...TMI, but I am so proud of her. We are still waiting on her VMA/HVA results from Thursday, but when we get them, we will post it.

Anyway, we love you all and wish a happy, healthy 2008 for everyone.

Love The Bells