Update - At the hospital

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...

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

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

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!

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!

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

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