PLEASE, PLEASE, PLEASE READ BELOW!

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!!!

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

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!

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!

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!!!

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!!!

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