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!
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
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
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
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!!
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
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
