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