Phew...lots to update!

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