Madelyn Bell's Status Page

Contributing Author - David Haas with a word about Cancer Support Groups

2011-09-09T08:43:00.002-05:00

Cancer Support Groups

According to the American Cancer Society, cancer support groups are known by several different names. Group therapy, group psychotherapy, psychosocial interventions, and psychosocial treatments are four examples. Cancer support groups, by any name, are invaluable tools in the cancer treatment arsenal. While they are not treatment, in and of themselves, they are effective resources for helping patients cope with their disease. Cancer provides a unique experience for each and every person, whether one is diagnosed with breast cancer, a rare aggressive disease like mesothelioma, leukemia, or another malignancy. The journey is different for everyone, and the ways in which people cope are different, too. All cancer patients need a good support system, and cancer support groups are the best way to address that need.There are many different kinds of cancer support groups, and they vary in makeup, structure, and activity. They often include people with the same cancer type or treatment type. They may be ongoing or time-limited. Some support groups are open to patients only, while others welcome family members and caregivers into the fold.Support Groups And Group TherapyCancer support groups are sometimes considered group therapy and, in many ways, they are very therapeutic. But they differ from traditional group therapy. Licensed counselors (therapists, nurses, psychologists, psychiatrists, and social workers) usually facilitate traditional therapy groups, but cancer support groups are led by their members. Typically, they are led by cancer survivors or trained professionals from within the group.Group therapy tends to be long and involves in-depth personal growth, while cancer support groups gather to address immediate concerns and manage current situations. Support groups can be held just about anywhere and, unlike group therapy, they are usually free to join. Community Support GroupsCommunity support groups are a good way for cancer patients and survivors to become active in their own cancer community. Meetings are held in hospitals, churches, schools, community centers, and group members’ homes. Cancer treatment centers can provide the names of local cancer support groups. National groups with local chapters include the American Cancer Society’s “I Can Cope” program, the Cancer Hope Network, and Gilda’s Club.Online Support GroupsOnline support groups are the ideal support network for cancer patients and survivors. For people experiencing treatment side effects, or those who cannot leave their home for another reason, online communities are the way to go. Internet support groups and discussion forums allow patients to maintain their anonymity. They can share their fears, frustrations, and feelings honestly with people who understand what they are going through. Whether patients face treatable skin cancer, breast cancer surgery, or a mesothelioma prognosis, cancer support networks can provide comfort, support, hope, and knowledge of the disease one is going through. Research has shown that support groups reduce anxiety, relieve stress, and improve quality of life.

By: David Haas

You can reach David via email at davdhaas@gmail.com or visit his personal blog at http://haasblaag.blogspot.com/

Wow...it has been a long time!

2011-01-21T09:01:00.002-05:00

Well, as you can all see, Sophia Hope was welcomed to our family on November 29th. She weighed 8.11lbs and was 20 inches long. It was an amazing day and Madelyn is just loving being a big sister. I am so sorry it has been so long since we updated, but, life has been chaotic with a newborn in the house. It seems like ages ago that Madelyn was this small:) Madelyn has been doing great. We are attending open houses for Kindergarten because, although she misses the public school cut off to turn 5 and start school by 19 days, we are planning on placing her in a private school for kindergarten. She will stay in the school that she is currently in for Pre-K and is very excited. She is doing so well academically, she is reading, writing doing math problems and is just amazing!

Her next scheduled check up at the clinic is in April. If all comes back well at this check up they will have us back for checkups yearly instead of every 6 months....very exciting, but very scary! At Madelyn's 4 year old check up they discovered that her hearing was not normal. She has a hard time hearing anything below 15 decibels on the left ear and 30 decibels on the right ear. We are scheduled to see the ENT on Wednesday. The audiologist confirmed that the hearing problem is in the middle ear on the right side. We will find out more at the appointment on Wed.however, our concern is that this hearing loss developed during chemo. We will update when we know more.

The local Non-profit that we volunteer for and Rick serves on the board for has a local consignment shop that donates a portion of all their proceeds to them. Their name is Palmetto Thrift Store. They are doing a large advertisement in the local Columbia magazine and Madelyn will serve as their "poster child". We are very excited and are going to the photo shoot on Monday.

Having a new baby in the house is so great! I forgot what it was like to be sleep deprived, smell like spit-up and change what seems like 10,000 diapers a day, but I wouldn't trade it for the world. It is a different situation to be a new parent again. I find myself at certain points questioning Sophia's health. I freaked myself out the other night, because I was convinced that her right eye looked droopy like Madelyn's did. With Madelyn, our first year was a whirlwind. If you asked me when she talked first or when she sat up or rolled over or crawled, I wouldn't be able to tell you without looking at pictures and dates. During that time frame, my main concern was when her next chemo was scheduled or our next appointment at the clinic or what her blood counts were. I am really trying to step back and just enjoy all the wonderful, amazing things that come with having a newborn and really have to consciously tell myself that "Sophia does not have cancer too...just enjoy your beautiful girls!!"

Thank you so much for checking in and we love you all!!

The Bell Family (which has now extended:))

Kenny McKinley with Madelyn in 2008

2010-09-20T23:25:00.004-05:00

Kenny McKinley in December 2008 at the annual "Evening with the Gamecocks", an event to bring awareness to the pain and tragedy of pediatric cancer. He is pictured here with my daughter Madelyn. He was very gracious and Madelyn thought he was awesome. His death comes on Madelyn's 4th birthday. God, we pray that You... bring peace to his family and friends and show us the purpose of this tragic loss.

First Day of Pre-K

2010-08-23T12:00:00.003-05:00

First day of pre-K, or better known around our house as "big girl school". She is growing up way too fast for us.

Madelyn Goes to the Driving Range

2010-05-17T21:28:00.004-05:00

Madelyn's 1st golf outing...enjoy! For her first time out and never having swung clubs with this much weight, I was amazed. I rotated it in quicktime, but it didn't take on the upload. took over half an hour to upload, so "twist it!" (you'll get the reference once you watch)

Just a Quick Note

2010-02-27T20:40:00.002-05:00

We hope you all are doing well and we continue to thank you for checking in. Madelyn is doing great. We believe she saved the "terrible twos" up to really let us have it in the threes!!!:) She is full of spunk, personality and has her own agenda...and she won't hesitate to tell you what it is. I tell Rick she takes after him and he tells me she takes after me...go figure!!! Our next checkup is on April 15th. We are on 6 month intervals now, so if everything goes well, we won't need to go back until October!!

We had the opportunity to participate in the USC Dance Marathon last weekend. Every year they have a 24 hour dance marathon and all the money goes to the Palmetto Health Children's Hospital (This is the hospital that Madelyn was treated at.) They raised $144,000!!!!!!! We spoke to the dancers and told them Madelyn's story and tried to explain how important the money is that they raised for the hospital and without it, there wouldn't be nearly as many happy endings! There were 1,000 dancers and they all did a cheer for her. At first she was shy, but by the time we left, she was on stage by herself hoola hooping!!

We are truly blessed for our healthy baby girl, our family and friends....all of you who still think of our family and check in on us. Thank you and please continue to pray for all those who are starting, in the midst or at the end of their battle against this terrible, terrible monster!!

We love you all!

Merry Christmas!

2009-12-13T13:32:00.004-05:00

Hello all, I know that it has been a while, but like the old saying goes...no news is good news!! We have been wonderful, as you can see from the picture above, Madelyn is growing and doing wonderfully! We are getting ready to travel to NY for the holidays. We will be leaving Sat. and coming home in 2010!!!:) We will also get to have dinner w/the Carolina Gamecocks and coaches on Thursday...this is always fun to see the kids get so excited to see "real football players". Funny thing is, I don't know who gets more excited the kids or the parents:) Check up at the clinic scheduled on Wednesday, normal check up w/catecholamine levels tested. Blood tests from weeks ago were normal as well. Of course, we will let you all know how it turns out. In the meantime, please have a fabulous Christmas and remember what this season is about. Thank you God for all of our friends and families and the blessings that you give us every single day! Happy Birthday Jesus!!!

We love you all,
The Bell Family

Scans are negative!!!

2009-08-26T18:06:00.002-05:00

Scan results came back with no issue and VMA/HVA came back as well and are on par with what they have been, No more scans for the foreseeable future!!! Just wanted to drop a quick update for those of you that are checking here. Thanks for your thoughts and prayers!

Rick

2 more weeks for scans!

2009-08-06T13:37:00.002-05:00

Hello all! Just wanted to drop in and let you all know we are having a fantastic summer. We've been to NYC, my brother's wedding, the beach for a few days and are truly just enjoying our family! Maddy is scheduled for her ckup at the clinic along with a EKG & Echo following her checkup on 8/18. MRI is scheduled for 8/21 at 7:30am. Please pray that the scan proves negative and Ms. Maddy is still cancer free!!! I will update with the results as I get them.

Thank you for cking in and please keep praying!
The Bell Family

I know...it's been way too long!

2009-07-16T21:04:00.002-05:00

Well the old saying, no news is good news rings true here in the Bell household too. Madelyn has been doing great. Growing and learning and amazing us everyday! The last ckup at the clinic went really well. She actually allows the Drs. to examine her now. But poor, poor Nurse Trisha can't get w/in 5ft. of her to take blood pressure, height, weight and temperature. She screams, yells, cries, kicks and hits until she moves away from her. I have now become an expert at doing all of these things for them, b/c she puts up a fight w/me, but if they all leave the room, she let's me do it:) Dr. Kevin said he went back and read her chart front to back before our last ckup and said that she is amazing and truly is a miracle to be here today. That really is an eye opener on this side of treatment and coming from your Oncologist!

I had an opportunity to volunteer last month at Camp Kemo. It is a camp that the Children's Hospital puts on for 1 week and is for all kids that are in treatment or are finished with treatment and their siblings. It was AMAZING!!! I knew a lot of the people but met so many more wonderful people that volunteer their time for a whole week to give these kids 1 week of normalcy and fun! Of course, Drs. and nurses are there on standby in case they are needed but other than that they do so much stuff...swimming in the pool, firemen come w/a fire truck, they take boats and jet skis out on the lake, camp fires, woodworking, arts & crafts and so much more. It was such an amazing experience that I am going to be a camp counselor next year. I am so excited and figure I'll get the training out of the way next year and then when Maddy turns 4, she can go and be a "Peanut". Then we can do this together for 1 week a year. That will be our thing to do and I am so looking forward to it.

We have become really involved in Children's Chance. Rick is now a board member and I try to volunteer and do what I can as much as possible. Our family is representing Children's Chance in their Run/Walk fundraiser next week. I'm not really sure what that entails but who cares! We get to walk and raise money for such an awesome organization!

We went to NY a couple weeks ago for my brother and Liz's wedding. Maddy was the flower girl and was so stinking cute. She did so good and I was so proud of her. While we were there we also had 2 days to visit New York City. Kaitlyn was with us this time and we had a blast. We saw so much and spent great time together. We are back now and trying to get back to normal. Madelyn's next check up is Aug. 18 w/an Echo & EKG and then an MRI on Aug. 21. Dr. Kevin said if that turns up clear, then we will move out to 6 month ckups at the clinic instead of 2 and 6 month MRIs. If we do that for 1 year and everything still turns up clear, then we will sit down and talk about what to do next. Stop MRI's all together or go yearly, we'll see. Rick and I talked and said we would be fine stopping them all together and just doing VMA/HVA to monitor. Not invasive and all it takes is a urine sample and that should be a good way to monitor catecholamines. I guess we'll cross that bridge when we get to it.

Thank you all for checking in and for all your continued thoughts and prayers. I will try to do better about updating more often. Life is good and time just gets away from us. Trying to enjoy all the good stuff in life!!!

Lots of love,
The Bell Family

Just a quick update!

2009-04-16T21:00:00.003-05:00

Thank you all for stopping in. We just wanted to update you all and tell you that Madelyn is doing great. Last week she had strep throat again...5th time in 4 months. Needless to say, our new pediatrician, Dr. Haile, who Madelyn absolutely LOVES, thinks that she may be a carrier for strep. We have to go next Thursday to get her last 2 immunizations and to have her tested to see if she is a carrier. If she is, we will need to decide whether to have her tonsils out or not. We had our ckup at the clinic on Tuesday. They said that she is growing like crazy and looks great. The physical went well, Dr. Pirich said she didn't feel anything abnormal. Her lymph nodes were a little swollen, but that goes along w/the strep from last week. We go back in June for a ckup and then again in August. Her next MRI is scheduled for August and if that all comes back clear they said we may just follow VMA/HVA and not do MRI's. We will find out the results of this weeks VMA/HVA in a week or so. I will update then. We are all anxiously preparing for my brother's wedding in July and can't wait. I ordered Madelyn's flower girl dress the other day and can't wait to see her in it.

Madelyn has definitely come into her own. She is opinionated and doesn't waste a second on telling you what she thinks and how she feels. It is so amazing to watch her grow and yes, frustrating at times. I actually find myself arguing, bar taring and trying to reason w/a 2 year old all the time! She is doing great w/potty training. We wear our Princess/Dora panties at home and b/c she gets distracted at school she wears a pull-up, but we are working on that.
Other than that life is great and we are thankful everyday for our healthy little Madelyn Grace. I am planning on taking her to Disney on Ice at the end of this month and then her dance recital is on 5/9. I will definitely post those pictures!

Thank you so much for checking in. I will try to do better at updating more often.

All our love,
The Bell Family

Please sign the petition below!

2009-03-11T21:38:00.002-05:00

Cure Childhood Cancer Petition! This will be one of the most important petitions you will sign!

Thanks!

MRI proves continued NED!

2009-02-22T14:32:00.003-05:00

Well, if you read the title, I am sure you can guess how the MRI went. We showed up @ 9:30 as the nurse told us too, but found out after getting there her table time was 9:30, so were really supposed to be there at 8:00am. This entire MRI this time has been a scheduling NIGHTMARE, but it all ended well. She did great w/the sedation and was VERY loopy well into bedtime. Couldn't walk very well, her legs were wobbly and she was talking so funny and making no sense. Dr. Kevin came and examined her in the Pediatric Sedation room we were in b/c she wasn't very with it. He said she was doing great and if scans came back clear, we wouldn't see them again until April. We were home by 3:00 and Oncology called me by 5:00 to tell me the scans were clear! We are so relieved and continue to pray for all of those families who are starting or are in the midst of their fight. We do ask for all of your prayers for our pastor and his son, Jonathan, click here to visit his website. He was born w/a malfunction in his heart and has had 2 open heart surgeries and is not even 4 weeks old yet. He hasn't been home yet and continues to fight. PLEASE visit his site and leave Larry and Nan some words of encouragment and of course say some prayers, b/c we sure know that prayer works!!

We love you all and thank you for your posts and emails!
The very happy Bell Family!!!

Happy Valentine's Day!

2009-02-14T16:26:00.002-05:00

Hope you all are spending the day with the ones you love! I sure am, we had a pleasant day toodeling around the house doing household chores, then Maddy and I took a nap and now we are going out to "have fun" as she likes to call it. Just wanted to wish you all a Happy Valentine's Day and let you know Madelyn's MRI is Monday. We have to be at the hospital at 9:30 and then meet w/the Oncologists after to review the scans. Please pray that all goes well while she is sedated, remember she has to be sedated more than a normal child having this scan b/c of her reaction to Propofol. Also, of course, please pray that the scan is negative for any disease! We love and appreciate you all for cking in on us!

God Bless,
The Bell Family

Update on VMA/HVA

2009-02-02T12:06:00.003-05:00

Good preliminary news for Madelyn's 6 month checkup. Her catecholamine (VMA/HVA) results are back. They are normal and her VMA is the lowest ever! This is a good non-invasive indicator that nothing major is going to be seen when we do MRIs later this month. We still need to proceed since cancer works at a cellular level and we may not be able to see what isn't shifting her catecholamine levels. Any way, this is good news and hopefully the studies will show the same thing, that Madelyn continues to have no evidence of active disease.

Love and thanks,
The Bell Family

First 2009 Update

2009-01-24T10:39:00.002-05:00

Everything is going well so far in 2009 with the Bell family. Madelyn is continuing to develop well. There are no apparent medical concerns right now. No colds, flu, etc. and the dreaded C word is not rearing it's ugly head right now. Our 6 month scans are a little delayed. They were supposed to be next week, but due to forces outside of our control, we're getting pushed back to 2/16. A word to everyone who has to deal extensively with health organizations. You must manage your own care!!! They are generally unreliable when it comes to organizational skills and requier constant oversight. Sheila asked for Maddy's MRI to be scheduled in November and was not done. Six phone calls and repeated assurances from the staff at the hospital still didn't get it done. We've let that go and will wait another 2 weeks or so to hopefully get some good news.

Sheila is extremely busy as the housing market, while in news reports is still gloomy, seems to be picking up. Contracts and closings are again hitting the schedule and we're quietly optimistic that 2009 will be better than 2008.

Work at the Cross continues to be challenging in every way, the technology challenges as well as the politics. 2009 has been fun so far and it's hard to believe that January is almost over.

We know not as many of you still visit this site, but we appreciate those of you who still stop by every now and then to check on us...or honestly, check on Maddy.

Sheila and I seem to be spending more time on Facebook than this blog, and if you're on please look us up. We're trying to get FB and this blog linked so we can have one stop shopping for our friends.

Thanks to all of you and we love you all for thinking of us.
Rick, Sheila, Kaitlyn, and Madelyn

Hope you enjoy our Christmas card to you all!

2008-12-21T22:05:00.002-05:00

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!!

2008-12-21T22:03:00.001-05:00

Send your own ElfYourself eCards

Sorry it's been so long...

2008-11-06T15:12:00.004-05:00

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!

2008-09-22T21:42:00.004-05:00

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!

2008-09-05T12:05:00.005-05:00

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

2008-08-08T22:09:00.004-05:00

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!!!!

2008-08-04T08:11:00.009-05:00

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!!!

2008-07-09T19:32:00.003-05:00

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!

2008-05-21T14:42:00.003-05:00

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!

2008-04-28T21:55:00.003-05:00

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!!!

2008-04-24T22:28:00.003-05:00

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!!!!

2008-04-11T19:26:00.004-05:00

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

2008-04-08T21:45:00.004-05:00

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!

2008-03-23T20:56:00.002-05:00

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!

2008-02-29T21:13:00.002-05:00

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...

2008-02-09T09:21:00.000-05:00

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

2008-01-08T03:30:00.000-05:00

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!

2008-01-05T22:57:00.000-05:00

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!

2008-01-02T09:14:00.000-05:00

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

Ck out this link

2007-12-10T10:03:00.000-05:00

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

Friday Update

2007-12-08T09:53:00.000-05:00

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

December Update

2007-12-03T22:49:00.000-05:00

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)

VMA/HVA Results

2007-11-16T16:19:00.000-05:00

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

O So Long It's Been!!

2007-11-12T11:37:00.000-05:00

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!

Please pray for The Oughton Family!

2007-10-29T09:39:00.000-05:00

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

Cardiology Results

2007-10-04T19:54:00.000-05:00

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

The port is out!

2007-10-01T21:54:00.000-05:00

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!

WE ARE 1 YR OLD!!

2007-09-25T22:06:00.000-05:00

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

James Runde

2007-09-18T20:52:00.000-05:00

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.

PLEASE, PLEASE, PLEASE READ BELOW!

2007-09-12T22:34:00.000-05:00

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!

THE UPDATE WE HAVE ALL BEEN WAITING FOR!!!

2007-09-10T21:01:00.000-05:00

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

Big Day is tomorrow

2007-09-04T22:42:00.000-05:00

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

MIBG Scan Results!

2007-08-27T20:42:00.000-05:00

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!!!

Quick Update!

2007-08-09T21:04:00.000-05:00

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

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

2007-08-08T15:01:00.000-05:00

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

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

2007-08-01T21:49:00.000-05:00

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

Madelyn is 10 months old & Round 7 is complete!

2007-07-20T22:29:00.001-05:00

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

Round 6 is complete!

2007-07-02T22:09:00.000-05:00

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

Round 5 is complete

2007-06-19T22:08:00.000-05:00

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

Big Update - Chemo Continues

2007-05-31T13:26:00.000-05:00

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

Quick update!

2007-05-13T16:57:00.000-05:00

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.

Chemo is DONE!!!!

2007-05-04T12:44:00.000-05:00

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

Update

2007-04-26T13:50:00.000-05:00

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

Update - At The Hospital (4/19)

2007-04-19T10:44:00.000-05:00

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

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

2007-04-17T21:57:00.000-05:00

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

Interim MRI results

2007-04-10T10:20:00.000-05:00

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

Phew...lots to update!

2007-03-30T15:19:00.000-05:00

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

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

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

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

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

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

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

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

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

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

All our love,
The Bells

Blood Counts are back up!

2007-03-19T20:29:00.001-05:00

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

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

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

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

We love you all,
The Bell Family

Update - Chemo is postponed

2007-03-17T08:32:00.000-05:00

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

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

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

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

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

With much thanks and love,
The Bell Family

Repeat Blood Counts and MIBG scans

2007-03-09T21:29:00.000-05:00

So, we have more blood counts.

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

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

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

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

Love
The Bell Family

First Blood Counts post-chemo

2007-03-03T12:39:00.000-05:00

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

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

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

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

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

Round One

2007-02-25T10:37:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks again for everything!

Update - At the hospital

2007-02-23T11:16:00.000-05:00

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

For Better or Worse...

2007-02-20T16:38:00.000-05:00

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

Update on VMA/HVA levels

2007-02-13T20:54:00.000-05:00

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

Big Day! New MRI on 1/30

2007-01-31T08:58:00.000-05:00

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

I just had to share this with you all!

2007-01-24T10:57:00.000-05:00

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!!!

4 Month Check Up Today!

2007-01-23T14:48:00.000-05:00

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!!

Update - VMA/HVA results

2007-01-19T00:30:00.000-05:00

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

Update

2007-01-15T21:57:00.000-05:00

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

Weekly Update

2007-01-12T23:11:00.000-05:00

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

The Treatment Plan....for now anyway

2007-01-09T00:01:00.000-05:00

We met today with one of the Oncologists at Palmetto Richland, Dr. Laura Pirich. We had a full physical exam. Madelyn is 16lbs 5oz and 25 inches long.

At this time, with everything coming back so well Madelyn's prognosis is very promising. Neuroblastoma more often than not regresses in infants with favorable conditions like Madelyn has, but there are no guarantees. The plan from here on until something changes is to have a physical exam every three weeks and an MRI of her chest and abdomen every six weeks. At three week intervals during the physical exam, we will draw blood for standard CBC and Chemistry profiles and periodically we will check urine catecholamines (VMA and HVA) that can be indicative of changes in neuroblastoma. We may see some progression of the disease before it regresses. We cannot be sure that this disease has peaked or stopped, so close attention is required.

The primary tumor in Madelyn's chest can grow to press on her spinal cord, so we have to watch for signs and symptoms. More likely, her liver can become enlarged due to multiple tumors and press upward on the diaphragm which would make her breathing a little more stressful. We'll take it day by day.

The next appointment is 1/29/2007 where we'll do a physical exam and MRI in the same day to try to minimize these trips to the hospital.

My plan for the blog is to keep posting Madelyn's normal development information (due next: sitting upright) and post new pictures.

On another note, we are trying to get some of your contact information together so we can update our records and there are some thank yous we want to get out as well. For those of you who submitted Madelyn's name for a prayer list, please send Sheila an email (sheila.bell@gmail.com) with your info and the church name, address, and point of contact so we can correspond with them too. Sheila and I plan on visiting as many of these churches as we can with Miss Madelyn to show those who prayed and continue to pray for our family the power of prayer.

Thanks to everyone for your continued support.

The Bell Family

Madelyn Rolling Over!

2007-01-04T23:33:00.000-05:00

Check out the video of Madelyn rolling over for the first time. She has been on the verge for a couple weeks now. While Rick and I were eating dinner she was playing on her play mat. She got quiet all of a sudden and when we looked, she had her legs turned over and her belly. She had her right arm stuck under her. That was when we caught her and started video taping her. As you can see from the end of the video...Mommy and Daddy acted very obnoxious, but are so proud of her!!

More GREAT news!

2007-01-04T09:52:00.000-05:00

We got the results of the liver biopsy back today (about 10 minutes ago). These tests hold the final keys in staging Madelyn's disease and assigning her to a risk category. To catch everyone up, I wanted to review why these tests are so important.

The biology of her disease has had her staged as a 4S. Stages 1-3 are primarily localized tumors (in one place only), so we knew she was a 4 or 4S. The "S" in 4S means special, which is good. For more explanation read the following:

Stage 4: Any primary tumor with dissemination to distant lymph nodes, bone, bone marrow, liver, skin, and/or other organs, except as defined for stage 4S.

Stage 4S: Localized primary tumor, as defined for stage 1, 2A, or 2B, with dissemination limited to skin, liver, and/or bone marrow (i.e., limited to infants younger than 1 year). Marrow involvement should be minimal (i.e., <10%>. More extensive bone marrow involvement would be considered to be stage 4 disease. The results of the MIBG (metaiodobenzylguanidine) scan, if performed, should be negative for disease in the bone marrow.

She is a stage 4S because
a. She is under 1 year of age
b. The disease has only spread to the liver
c. No bone or bone marrow involvement was observed
(no MIBG scan has been done and will probably not be indicated in Madelyn's case for now)

While being staged as a 4S is great (low risk groups are limited to stages 1, 2A/2B, or 4S), she still could be intermediate or high risk based upon the results of the biopsy.

The three tests that were performed on the tissue were
MYCN Status
Shimada Classification
DNA Ploidy

The values that we could have seen are:

MYCN Status: Amplified (BAD) versus NonAmplified (GOOD)
(If this is amplified, Madelyn is almost definitely high risk)

Shimada Classification: Favorable versus Unfavorable
This is more or less a test of the histology (the study of tissue sectioned as a thin slice).

DNA Ploidy: DNA Index (DI) >1 is favorable, = 1 is unfavorable.
DNA ploidy is basically a test that measures the DNA content within tumor cells. Neuroblastoma cells with increased amounts of DNA are termed hyperdiploid, and in infants, hyperdiploid cells are associated with earlier stages of disease, better response to therapy, and thus a generally better outcome than diploid cells.

For some of you this review has been pointless, but I wanted to make sure all of the information was here to better explain to you the significance of the results we got today.

Dr. Neuberg called today to let us know that:

Shimada Classification (cell histology) is FAVORABLE. Good news!
DNA Ploidy is 2.08. Anything greater than 1 is GOOD. And finally....
MYCN Status (we've been dreading this) is NOT AMPLIFIED!!!! FANTASTIC NEWS!!!!

(the primary source for this information can be found here in table 1)

All of our hopes and prayers so far have been answered. All 3 tests came back with the results we prayed we would get.

The plan going forward is to do a physical exam every three weeks (starting January 8th at 1:30PM) and an MRI every six weeks (around the beginning of February). This also means no chemotherapy or radiation at this time!!! The reason he wants to watch her so closely is because the tumor in her chest is close to the spinal cord and right now she can't tell us if she has issues due to that (numbness, motor problems, difficulty breathing, etc.) The good news is that she rolled over last night for the first time, so she's developing well.

Please check back because I have to run. I'll check and make sure I left nothing out, but to sum this posting up, we got some great news today and we thank you for all of your prayers.

We love you all,
The Bell Family

Welcome 2007!

2007-01-02T09:39:00.000-05:00

We had a very quiet New Year's Eve, except for the neighbors fireworks. We stayed home with Ron and Patty and the 5 of us rang in the New Year! We are really excited and hopeful for the New Year! Only good things and good health for 2007!

We should hear something this week about the results of the liver biopsy. We will let you all know as soon as we do!

Thank you all for the continuous support.

Blog Layout Change

2006-12-30T16:12:00.000-05:00

If you'll notice, we have added a slideshow of images of Madelyn on the right side of this site. This is fed from Picasa (Google's web photo album site). If you click on the pictures you can view them better. We'll periodically update the images for all of you to see. If there's one or more that you like, you can order prints. The images are high resolution, so most of them would be of great quality up to 20x30.

Here is a link directly to the Web Album if for some reason the feed blips.

Thanks for continuing to support Madelyn.

The Bell Family

Maddy's First Chrsitmas is in the books

2006-12-28T11:14:00.000-05:00

Christmas was wonderful! We had lots of family around and Madelyn had a blast. She's developing so well. She is very close to rolling over. It should not be more than a week now. She's flinging the leg for momentum and has a very determined look on her face.

We removed the bandage from her surgical wound over her liver. I have seen lots of stuff as a medic in the army and working in ICU departments, but for a closed wound this one bothered me just a little. The edges are a little jagged, but that is probably due more to the way its healing. It is larger than I expected, but still not bad. I just think what we would be looking at had they chosen to operate on her chest, and feel relieved with what we actually did.

Sheila and I talked last night about Madelyn's condition. Sheila stated that when she looks at Madelyn, she doesn't see a "sick" child. I told her, however, that I do. It's odd to me how I look at her. I see her almost at a cellular level. There are things in her body that aren't supposed to be there. Her eye is really drooping at times, and you can't help but wonder if the eye is getting worse or if the sympathetic nerve pathway will ever be the same. If I haven't explained how her eye is related to her condition, let me do that now.

The tumor in Madelyn's chest started from her sympathetic nerve chain in her chest. It IS the nerve, not a tumor near is that presses on it. The sympathetic nervous system is the part of your nervous system that controls things you don't think about. When you open your eyes, you don't think about opening them equally. When you look at a bright light, you don't think to constrict you pupils to allow less light in. When its hot, you don't think about sweating. The sympathetic innervation (nerve connectivity) to her left eye and cheek have been interrupted by the nerve growing to become a tumor. If these tumors stop growing, there is no guarantee that the chain will return to 100% function. When the doctors originally said they were going in to her chest to possibly resect (cut out) the tumor in her chest, if they had done this, the nerve would be gone and it would never be right again. Right now we don't know how it will turn out even if the neuroblastomas stop growing and change to ganglioneuroblastomas or ganglioneuromas.

It seems petty to think about her having normal eye function when her life is technically still in danger, but you want your baby to be as normal as possible. When I think about her growing up and beginning her socialization, I worry that anything not seen as "normal" will cause her problems. Children can be cruel, and I have read where adults are still dealing with the psychological impact of having a droopy eye. Within 10 minutes, we heard conflicting statements from two surgeons on whether she would grow out of this, and the surgeons are partners in practice. Its not my research. As I said, it seems petty but what else can I do?

Right now, we are waiting for the results of the genetic analysis from California. The doctors don't expect anything back before next week. We may have an MIBG scan next week. In this test, they would inject Madelyn with a radioactive isotope of Iodine that usually bonds well to neuroblastomas. The purpose of the test is pretty much to see how well MIBG works on her tumors and how effective this will be as a future diagnostic test.

It scares me to death to think that right now we are just waiting and this thing could be growing. Again, I think about this at a cellular level. Are there more neuroblast cells today than yesterday? Are there less? Are the cells maturing as we hope? We aren't in a hospital, no one is sticking a needle in my baby, but part of me felt better when we were actively doing things versus waiting. I do trust our doctors, though, and I have faith she'll be fine but the waiting is torture.

Thanks to all of you for taking the time to visit the blog and for your continued prayers and well wishes. We love you all and you continue to inspire us with your kind words and outporing of love. The best part of our day is when Sheila gets a text message on her phone that a new message has been posted. We read them aloud to each other, often looking at each other and saying, "Who is that?" because you have told so many people about Madelyn and people we have never met before are stopping by to wish Madelyn well. I can be pretty cynical, but this is amazing that people still care.

The Bell Family

Merry Christmas!!!

2006-12-25T17:09:00.000-05:00

Hi everyone! We hope your Christmas has been as enjoyable and memorable as ours. We went to mass this morning at St. Joseph's in downtown Columbia. Madelyn was sound asleep when the organ fired off the first notes of music, and she only returned near communion for a brief appearance. The congregation sang "Silent Night", which she seemed to enjoy probably because I sing it for her all of the time.

We had dinner this afternoon at Ron and Patty's. It has been your pretty standard Christmas, which is great compared to what we have been going through.

Thanks to everyone who continues their vigilant prayers for Madelyn and our family.

Happy Birthday Jesus and Merry Christmas!

Rick

Christmas Eve is Upon Us!!!

2006-12-24T13:59:00.000-05:00

If you notice a little number to the right of this post, I added some code to track visitors to the site. 30 unique visitors yesterday and 19 so far today. And I have been slack posting new info, but its not completely due to laziness. We are enjoying time at home with Madelyn, something just a few short days ago we didn't think would be possible. Thanks be to our Lord Jesus Christ.

I have also changed the settings by which you leave comments. You no longer have to sign up with Google to leave a comment. You can leave an anonymous comment, but please leave something to identify yourself so we know who has been by.

Madelyn is pretty happy. She has had a little trouble getting back into the routine we worked so hard on. Friday night she was up 4 times and pretty unhappy when she was awake. She slept most of the day of surgery, so this is kind of expected. Nothing we can't handle though, and far and away better than sitting in a cold hospital room watching her vital signs.

We went out yesterday for a few hours of shopping. We avoided the crazy areas (Sandhills, Columbia Place, HARBISON) and ventured to Camden. I am still in shock that Sheila left her yesterday, but uncle Ronnie and aunt Liz did a great job.

The retail part of Christmas has been largely forgotten this year, which in itself is a blessing. Through all of the stuff we've gone through recently, we should come out of this Christmas in better shape than usual. The doctors encourage us to be hopeful that this disease will go into spontaneous remission because everything looks so good. We've spent less money than we usually would during this time. We didn't have time to do anything but concentrate on Madelyn. All things considered, this is the best Christmas ever.

Today we are getting ready for Santa. We'll most likely go to Christmas Mass tomorrow. Thank you for your continued support through prayer, phone calls, and an abundance of well wishing cards. We'll try to keep things up to date. Until we get the results of the tumor biopsy back (projected for the 1st week in January) most of our posts will be about Madelyn and her development. She is close to rolling over and seems unaffected by the surgical wound on her belly.

Thank you for stopping by. We'll post more again tomorrow.

With our sincere wishes for a truly blessed holiday season,
The Bell Family

Bone Marrow is Clear!!!

2006-12-22T12:47:00.000-05:00

Dr. Neuberg just called to say that he looked at the marrow biopsy himself and we were still waiting on some more stains, but her marrow looks to be free of neuroblastoma or if there is any involvement, it's definitely < 10%, our critical marker. We are going to wait to talk to him, and he should be around before 1:30PM. At that time, we'll discuss followup visits and the plan of action from this point forward.

Continue to pray for Madelyn and our family, please. The reason why I state the obvious is because whatever all of you are doing, it is working. We picture all of your faces, bowing your heads to pray for our little girl. I imagine you all praying at the same time, and everyone's thoughts and prayers seem coordinated, traveling to God's ears. I wonder if the sheer strength of the signal is why our little Madelyn is doing so well. I think God is pleased with the movement that all of you have begun in support of Madelyn.

The future is still uncertain, but undoubtedly today is the happiest day of my life.

Rick

We're Going Home Today!

2006-12-22T12:19:00.000-05:00

Yippee!! Dr. Adkin's (our Surgeon) came in this morning to tell us that she is doing great. Eating, peeing and pooping, no fever and seems completely normal so there is no reason for us to stay! Dr. Neuberg our Oncologist came in as well and said that we do not have the results of the bone marrow biopsy yet...within the next hour or so. We are waiting to get the results of that. If it is negative for cancer...then obviously that is good and we are staged as 4S, however, if the results are positive that the cancer has spread to the bone marrow and it contains 10% or more, then we are staged as a 4. Let's pray for negative results!!!

We will update later when we find out!

Maddy's First Meal Post-OP

2006-12-21T20:59:00.000-05:00

Okay everyone...baby girl has eaten a little and is doing very well. Of course now, after getting to eat, we have seen a big smile on her face and as she sleeps she sighs w/content. Oh yeah...guess what is happening to the extra gas from anesthesia...yep you guessed it!!!:o)

Just wanted everyone to know we are all doing well and hanging in there and thank you again for all of your thoughts and prayers!

Post-op update

2006-12-21T20:28:00.000-05:00

We have moved to room 1022. It's a little larger than 913, so we're sprawling out. We asked for and received 7 pillows. Sweeeeet!

Madelyn's vitals are strong. She has no fever, so infection is not a concern at this time. She is receiving IV fluids to maintain her volume. She frequently wakes and grumbles. Her throat is scratchy from being intubated. She was extubated in recovery and breathing fine on her own and her O2 saturation levels are great. She appears to have some discomfort and the staff is controlling her pain with Tylenol. No narcotics, just Tylenol. I flash to how different this would be had they gone through with the thoracotomy.

Around 6PM she took her first fluids by mouth, starting with 3 oz of Pedialyte. She kept that down pretty well. Dr. Reddy came in and wrote orders for us to run a trial feeding. She hasn't consciously smiled yet on the outside, but considering my girl hasn't eaten in almost 24 hours, she is definitely smiling on the inside!!!

IF for the next 24 hours...
1. Madelyn does not develop a fever over the next 24 hours, AND
2. Her pain begins to subside and can be effectively controlled with Tylenol, AND
3. She has nornal I/O (inputs and outputs...you figure it out)
I feel pretty confident she will be coming home with us by Saturday.

We should find out more about the bone marrow biopsy tomorrow. At this point we have stopped hoping it will not show involvement with the bone marrow. We have unwavering FAITH that it will not.

Again, we cannot thank all of YOU enough for your continued prayers for Madelyn's remarkable recovery to continue.

With much love for our friends and glory to God for all His blessings,

The Bell Family

Surgery Goes Well

2006-12-21T12:16:00.000-05:00

First things first...Madelyn went into surgery at 9:04 AM and as of 12:10 PM is out of surgery, through recovery, and is comfortable in room 913 at Palmetto Richland Hospital. Sheila, Kaitlyn and I are accompanied here by Ron and Patty Chrestler (Sheila's parents), Betty Lunsford (my Mom), Ron Chrestler (Sheila's brother) and Liz Nield (Ron's girlfriend). Friends of the family April Braswell and Jim Selbee stopped by to offer support (THANKS!).

Now that you know that she is OK, I must tell you about what has happened so far today. For those of you have prayed for Madelyn, please read this post in it's entirety. The effects of your efforts and God's grace (get it, Grace?) can be seen today.

We left a little late for the hospital, but considering we got everything done yesterday as far as pre-registration, we had some time to spare. We arrived at 5:40 AM and went to the designated area on level 3P.

We proceeded as planned and everything went smoothly as we were moved around 6:20 to the pediatric holding area. We remained there waiting for anesthesia to come by and explain their role and the plan for sedation and then for Dr. Adkins and Dr. Reddy to come by and discuss the preliminary plan going in to the OR.

We had a little friction with the anesthesiologist due to some of our questions regarding Madelyn's care during the procedure. I take some responsibility for this. I am a details guy. Its what I do. My questions may sometimes be rhetoric to help me gain a comfort level with someone. The point is, we were looking for some assurance that everything had been covered. During the winding down of this conversation, Dr. Adkins came in to, as he said, "Complicate things a little". Having not heard the results from the bone scan, we braced for the bad news.

Dr. Adkins had taken last evening as an opportunity to review the MRIs again and consult a colleague from Memorial Sloan Kettering Cancer Center named Dr. Michael LaQuaglia. According to Dr. Adkins, he is widely known as one of the premier pediatric oncology surgeons in the country. We learned this morning that the bone scan showed no evidence of bone involvement. This most likely puts Madelyn as a stage 4S. Any bone involvement would have made her a level 4 and a high risk patient.

So, having learned this and taking into account the negligible gain made by attempting to biopsy/resect the tumor in her chest, Dr. Adkins and Dr. Reddy felt it was best to biopsy the liver rather than perform a thoracotomy (open chest). The primary tumor is near the aorta, but no evidence exists to suggest that the tumor is involved with surounding tissues. We would be looking at a lower risk, equal reward biopsy as the liver shows multiple lesions and is considerably more easy to access. This less invasive procedure gives us a calculated improved risk over the thoracotomy. That is the facts.

The truth is that the last minute deviation from the strategy we discussed not 36 hours earlier took us for a loop. We talked it through as we do, verbalizing the pros and cons to both. We accepted Dr. Adkin's recommendation and they got with anesthesia to change the sedation plan accordingly.

Madelyn moved to surgery at 8:45 and her procedure began at exactly 9:04. Plametto Richland uses a paging system similar (exact) to those in most popular restaurants. We knew where she was the whole time.

Funny thing happened next. Surgery was over. It took about 10 seconds for you to read the words above "and her procedure began" and that her surgery was over. It seemed that quick to us as well. This was good news. She was still waiting for Dr. McRedmond (Pediatric Oncology) to perform the marrow biopsy. Dr. Adkins came out to see us, and we met with him with no idea what we were going to here. This man had just seen my daughter's liver. Not on a scan, but up close and personal.

From here to the end of this post, read it very carefully because if you are a person who has lost faith, prepare to get it back.

Dr. Adkins described the tumors on Madelyn's liver as nodules he expected to find similar in size to blueberries, but instead presented more like macadamia nuts. having never had the disposable income to throw $9/lb on NUTS, I asked him to simplify it for me. Well, macadamias are larger. So, as you read, you're thinking that larger is bad. You are thinking wrong.

Cancer cells act, as describer by Dr. Adkins, as juvenile delinquents. As they grow, sometimes they mature. This is what we are looking at. Cells that are maturing into less delinquent cells, ones that are less harmful. To summarize, in Dr. Adkins gross (eyeball) examination, it was better than he expected. Aggresive neuroblastomas do not do this.

We still have to wait for more definitive results to come in on the MYCN gene amplification, hyperdiploidy, cell histology, etc. The current prognosis as stated by Dr. Adkins and Dr. Neuberg is:

Assuming the bone marrow biopsy shows no neuroblast tissue and the histology of the liver biopsy tissue is favorable, we will most likely be in a "wait and see" pattern. The liver tumors are not very vascularly involved (veins and arteries), and appear to be maturing. We will watch the tumors closely using imaging tests (X-Ray and MRI) as well as urine levels of VMA and HVA. What we expect is going on is that the tumors are maturing and may spontaneously cease growth. If this is true, as Madelyn grows, the tumor in her lung may go away on its own. That means no chemotherapy, no resection, no radiation.

Reality check: Madelyn still has active neuroblastomas in her body. It has metastasized from the primary location in her chest cavity to her liver. She is 3 months old.

We will earn more this week as the results of the bone marrow biopsy come in. I expect those to be negative. Regardless, I believe I am in the presence of a miraculous works by my Lord Jesus Christ.

Thank you for your prayers for Madelyn. She continues to recover. We are by no means out of the woods. Madelyn has cancer. I also believe these doctors are telling us honestly what they see, and they see a disease that appears to be yielding to a stronger force.

More updates to come.

Message to the Friends of Madelyn

2006-12-21T02:56:00.000-05:00

(Some of the information we provided about today is duplicated here. This is the content of an email we sent to friends and family. If you did not receive the email, I apologize.)

Today we had the final pre-op labs and her bone scan. We won't find out the results of the bone scan until the morning, which is when she goes to surgery. It has been moved up to 7:30 AM on Thursday 12/21/2006. Right now here's the plan.

Depending on the results of the scan, if there is nothing seen in the bones then the tumor resection will probably be less aggressive than if the bones are involved. If the bones are involved, then the resection will probably be a little more aggressive, but not to the point where her life would be put at significant risk. The exact plan for resection cannot be finalized until they can visualize the tumor in her chest. We must determine the involvement with surrounding tissue such as other organs, blood supply, etc. So, let's assume the best...

If there is no bone involvement, then the resection of the tumor will most likely be less aggressive. The tumor in the chest cavity is the primary tumor (where this all began). Depending upon the results of the biopsy, the treatment may range from a wait and see to beginning chemotherapy in the near future.

Tomorrow, when Madelyn comes out of the OR she will be moved to pediatric recovery. When she is through there she will most likely move to the Pediatric Intensive Care Unit (PICU). She will be listed in the directory at Palmetto Richland, so when she is assigned a room you may try to reach us there if you can't get us by cell (poor coverage in the hospital). She will most likely be hospitalized until Christmas Day at least.

Kaitlyn is here with us as well. She is hanging tough. Her love for her baby sister is very evident and please keep her in your prayers as well. She's growing into a beautiful young woman and we wish that she did not have to be exposed to this part of life yet, but the situation is what it is.

This is our prayer tonight...
*****************************************************************************************************************************************************************
Dear Lord,

Thank You for being with us in this, our time of need. We pray that Your will is that this child shall come through this critical procedure well and closer to a full recovery. We pray that You be with us all tomorrow. Lord, we pray You will be with Madelyn every step. We pray for our physicians, that they possess their full capacities in mind and dexterity in their hands. May You bless everyone working to see this child through this terrible disease be equally blessed.

Lord, please be with our family and friends. May You keep everyone's thoughts positive and please, make Yourself evident to those who don't know You. Your presence has been so apparent to us since learning of Madelyn's illness. The movement that has begun in support of Madelyn and our entire family is of such magnitude, no one can deny Your work. Tonight, hundreds if not thousands of people including countless people we have never met are praying in Your name for Madelyn to be rid of this disease. Their support is the simplest and most powerful love we can know. They expect nothing in return for their prayers, time, or money and give to us because they love us. They love us as You told them they should.

Lord, our spirits are lifted and our faith is strong and this is all because of You. In times like these it is easy to lose sight that others have needs and may be going through trials of their own. Lord, please be with them as You have been with us.

In Jesus Christ we pray, Amen.
******************************************************************************************************************************************************************

Tomorrow, your faces and kind words of support and prayer will sustain us through the endless waiting.

May God be with you all,

The Bell Family

PS - We did this blog in a kind of catch up mode, entering a lot of information in the last day or so but we kept the post times accurate to the timeline. From here forward, we will try to post timely information, so please use this as your primary source of information on Madelyn's status. Feel free to post comments for our entries. Madelyn looks forward to hearing from you.

HECTIC!!!!

2006-12-21T01:37:00.000-05:00

The bone scan is at noon, and I call in the morning to do all necessary steps for pre-op. I ask about labs, specifically a type and cross for replacement blood, and I am assured that she will be and blood will be on hand should the need arise. Bleeding is my primary concern. So, we also learn that at noon, the nuclear medicine personnel will inject her with a radioactive isotope which will be used in the scan to identify potential involvement of the bones in this disease. Then the tracer, as it is called, absorbs into the system for a few hours and then the scans are done at 3PM. We coordinate for the labwork and injection of the isotope to be done concurrently to attempt to minimize Madelyn's discomfort. Our good intentions are for nothing as the nuclear med staff is cinfused by the change in protocol and the nurse who attemots to stick her fails to get access to her veins in two tries. The nuclear med tech Ryan tries for Madelyn's 3rd stick and pulls it off nd we get the blood we need and inject her. Total time: 1.5 hours. We'll return at 4 PM for the scan.

In the meantime, I cram some food in my face and we visit Outpatient Surgery to pre-register and talk with anesthesia. We head up to the 9th floor where the PICU is and try to understand the logistics of where we will be until Madelyn moves into her own room.

At 4 PM we return. Madelyn is not sedated. She is, however, strapped in and restrained. Anyone who knows Madelyn knows this is a no go. Her arms must be mobile, and especially her hands. They go straight to her mouth lately, and she was very unhappy. Luckily for us, if you look at it that way, she was so upset during the blood draw she eas exhausted and went to sleep rather quickly. We stepped out to check voice mail and make some quick calls to get Kaitlyn, my 14 year old daughter, here so she can be with us. We returned and I looked at the monitor. The scan is not radioactive like an X-Ray. Quite the opposite. Madelyn is radioactive and the cameras see her radioactivity. I am no sure how it works, but the scan appears rather simple. Everything is black and radioactive partcles show as white dots. Small white dots are present on the screen and some appear to be normal. I focus on what appears to be some concentrated areas, but then remind myself, "You don't know what the hell you are looking at!". She wakes during the scan, and I sing her to sleep to complete the study. We head home after finding out we won't know the results until the morning. I am concerned that the technician sees something and will not tell us. I am concerned that they are afraid to tell us on the phone. I remember that regardless of the results, the next step is surgery and that is quite serious and requires my full attention. I travel to Florence to meet Kaitlyn and Kelli andreturn home by 8PM. Sheila's brother and girlfriend have arrived from NY and we have spaghetti before settling in for the last "normal" night with Madelyn for a while.

Through all of this, she has been so normal. She shows no sign of illnes and continues to develop normally. She would have rolled over in the next few days. We'll pick up there again soon.

The surgical consult

2006-12-20T01:20:00.000-05:00

I go to work and plan to meet Sheila at the hospital at 2:30. We arrive at Dr. reddy's office and he again talks to us like adults and oozes of confidence. We are realistic about our the situation but cannot help but be hopeful.

For the first time, we hear that chemotherapy is not a predetermined component of Madelyn;s treatment. We are scheduled for a bone scan on 12/20/2006 at noon. Here is what we took from the meeting:

If there is no bone involvement as identified in the bone scan, then the procedure to biopsy the tumor, previously understood to be a possible aggressive resection (surgical removal) of the tumor, may be less aggressive. If there is involvement, then aggressive resection of the primary tumor inthe chest would be considered keeping in mind that her success in surgery is paramount. If this occurs where there is no bone involvement, depending on what is found in surgery we may be in a "wait and see" mode. WOW! The fact that chemotherapy may not be a foregone conclusion is a surprise to us and our spirits are lifted. If there is bone involvement, then cheno would most likely be in order, but we have been prepared for this all along. So there is no bad news in my mind, only reality and wht we are going to do to cure my baby.

We had been working on the plan that surgery would be on Friday. We are surprised to get our OR date moved up to Thursday at 7:30 (less than 36 hours from now). Drs. Reddy and Adkins will both be in on the surgery, and by this time I can hardly restrain my hopeful thoughts.

I again look at Madelyn. I love this child. Sounds ordinary and common but it is anything but. I have asked to trade places with this child so many times. In a short while, she will be lying on a cold operating room table with a tube in her throat, a chest tube for drainage, and a scalpel approahing her skin to open her chest cavity to the open air. I have never experienced this. I am 34 years old. She will be 3 months old tomorrow. My heart truly aches. I have had pain in my chest today. I am undoubtedly sick about this and only pray that God's will is that this child will someday know how much her mother and I love her and grow up just as we envisioned when we asked God to bring her to us.

The initial oncology meeting

2006-12-19T01:03:00.000-05:00

We were told we wold meet with Dr. Laura Pirich. We did some research and she did her pediatric oncology fellowship at Northwestern and got to work at the Children's Hospital in Chocago, rated in the top 10 of all children's oncology centers in the US. Good news. We ended up meeting with Dr. Neuberg instead and felt pretty comfortable with him and understood we would be working with the knowledge and experence of the entire team, so we are OK with the deviation from our expectations. We learn that we are still in the diagnosis phase and cannot begin treatment until we understand the full extent of the disease and "stage" it. To begin this, we will do a bone scan this week and get a biopsy of the tumor in the chest as soon as possible.

Dr. Neuberg allows us to see the scans for the first time. I am surprised by the size of the tumor in her chest as it relates to her heart. Not much difference. Then we look at the liver. There are multiple lesions there and my heart breaks more. I look at my precious angel and am reduced to rubble again. Dr. Neuberg encourages us that treatment, when successful, will address this and I try to not lose faith. We need to run a repeat VMA and HVA test on her urine and Dr. Neuberg discusses surgery with us. Sheila is a realtor, and her broker in charge is a former pediatric nurse whose husband is a pediatric endocrinologist at the hospital and he recommended Drs. Reddy or Camps. Dr. Reddy agrees to break protocol and accepts us as his patient. We are encouraged. We have nothing against any doctors there, but a someone with professional knowledge who recommends a colleague is as good as gold. We are to meet with Dr. Reddy on Tuesday 12/19/2006 and we can hopefully schedule surgery Wednesday or Thursday.

Dr. Reddy calls us at home @ 8:30 and we discuss his findings from the scans and we are more pleased. He exudes confidence and at this time, this is what we need. We'll meet tomorrow but he assures us that he can operate on Friday, 12/22 at noon or before. This is happenening quickly.

12/16-12/17 - The long weekend

2006-12-18T00:58:00.000-05:00

Calls and visitors turned out in droves and the weekend was nothing but research, prayer, and fellowship. We anticipate the best and he worst and eagerly await Monday as we can meet with the oncologist and begin to formulate a plan to save our baby.

First Post

2006-12-16T12:31:00.000-05:00

As most of you are reading this as something I referred you to through conversations, phone calls, or emails, I have to thank you for just showing up. I had done some "blogging" but never committed to it because I find myself doing so many other things. Well, that has changed. The purpose of this blog is to serve as a resource in keeping my friends and family updated on the condition of my beautiful baby girl, Madelyn. In the chance that some of you don't know us very well or at all and are here to read about our journey, let me begin by filling you in on who we are.

My name is Rick Bell and I am married to a great young woman, Sheila. We are your typical yuppie family living in central SC. We have a pretty good life. Good friends and family. We met in 1996 and married in 2003. In 2005, we decided we wanted our DNA to mingle and see what we could make. After some effort, which included the use of some pharmaceutical assistance, we conceived in December 2005. Our due date was September 23, 2006. We were having a girl! Time flew by, and many times my wife wondered aloud, "Will I be a good mother?". All we wanted was a healthy baby, and on September 20, 2006 we got what we asked for.

Madelyn Grace Bell was born 7lbs 9oz and was 19 3/4 inches long. She has the feet of a 3 year old, but we figured that would work itself out. Everyone who saw her said what we knew, "She's perfect!". We took her home on September 22 at an average speed of about 25 mph.

After she was home, everything was great. Her initial visits for post partum checkups all went well. On October 17, 2006, we noticed that her left eye was a little red and swollen. Having served in the Army as a medic and working for a few years in different intensive care units, I figured just what the doctor would order - rule out conjunctivitis though topical antibiotics.

We followed this treatment for the defined period and saw no improvement. We asked to see an eye doctor and were referred. We visited the eye doctor and we continued the same treatment but changed topical antibiotics. We returned after a week when we were told by the doctor that it appeared to be getting better and to give it some time.

With my background, I was OK with staying the course. My wife Sheila, however, was not as patient as I was. We called our pediatrician and got an opthalmic eye drop (as opposed to an ointment) to see if we could get better results and the physician obliged. Another week and and no improvement led my wife to request a visit with a second opthalmologist.

On December 12, 2006 we visited Dr. Ed Cheeseman with the opthalmology group at Palmetto Richland and USC School of Medicine. I did not attend this appointment as I had to work. My wife was excited about the possibility of getting a new perspective on what ws going on with our daughter's eye and returning those beautiful eyes to normal. She called me at work at about 9:30 AM. She said that Dr. Cheeseman wanted to rule out Horner's syndrome. I had never heard of this, so I performed a quick web search. I scanned through and quickly determined that the root causes for this were all pretty significant. The most common cause in children Madelyn's age is injry to teh brachial plexus, a nerve in the sympthetic chain that affects innervation to the face and eye. The sympathetic nervous system is that which we don't control. Mdelyn's eye was "drooping", not swollen. Her pupils were not evenly dilated. Her left eye was not the same color as the right. We don't control these things willfully. Hopefully that explains it.

I rushed down to the doctor's office to hear it for myself. When I got there, Dr. Cheeseman had given her 1 drop of Iopidine (aproclonidine) in each eye to test his diagnosis. When I arrived, Madelyn's eye was normal. Her pupil was dilated. The lids were equal. Unfortunately, this meant she did have Horner's syndrome.

The doctor advised us that this is primarily the result of injury during delivery. She would have normal vision, and could possibly have plastic surgery to releive the drooping. That upset us because the psyche of a young child, especially a girl, is deeply affected by their appearance and self esteem. He also said that we needed to rule out any other causes. The primary one he felt was worthy of mentioning was a condition called neuroblastoma. We scheduled MRI scans of her head, nack, chest, and abdomen for Friday, 12/15/2006.

That night, Madelyn was not herself. She was lethargic and cried terribly when she was not sleeping. Possesing a healthy appetite, we was concerned when she really didn't wake for feedings. We did not know at the tme what the drops were that she had been given, so we called the hospital and were connected with Dr. Cheeseman who advised us to take her to the children's ER at Palmetto Richland. She was admitted and watched until Thursday as she began to return to normal Wednasday night.

We returned to the hospital on 12/15/2006 for the MRI scans. We sat impatiently awaiting Madelyn's return. She came back to us and was crying, so her recovery from the conscious sedation (chloral hydrate) was going well. Shela fed her and all was well. We were told that the scans with contrast could not be completed because Madelyn woke as they were to inject the contrast. I asked if we would need to come back Monday, and the nurse said, "They may have enough information". An incomplete test that finds nothing must be completed, so we were immediately concerned that something was wrong.

Dr. Cheeseman cam in to speak to us and gave it to us straight out. Madelyn has neuroblastoma. We were devastated. He went on to explain that she had a tumor in her left chest that measured almost 4cm across in her middle back area. They suspected some local lymph node involvement. What almost stopped my heart was when we were told her liver was involved. We had read briefly about NB, but this meant something: it had spread to the other side of her body. I almost dropped her in grief as I exploded when I asked for clarification. "Do you mean tumors in her liver?", I said. When told yes, I was crushed.

We were set up with a appointment with the pediatric oncologists on Monday, 12/18/2006 and managed to drive ourelves home after about an hour of just soaking this in and holding Madelyn tighter than ever before.

This is the day our life changed forever. Subsequent posts will be made as often as we can to bring everyone up to date as contacting everyone is impossible. Feel free to make posts here in support of our baby girl.

Thank you and God bless,
The Bell Family