Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Thursday, April 19, 2007

Update - At The Hospital (4/19)

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

Tuesday, April 17, 2007

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

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