Round 5 is complete

Its been a while since we posted. Madelyn had round 5 of chemo on 6/5. We had a little issue with that. The physician that wrote the orders for her chemo wrote for the wrong drugs and Sheila didn't catch it until after it was over. Basically, Madelyn has begun Course 2 of chemo. The drugs are the same as Course 1, but the order and combinations change slightly. Sheila received the roadmap for treatment on the 4th and we went in for treatment on the 5th. We didn't figure we needed to check anything as the roadmap states clearly the treatment plan for the entire round, however, from what we understand the physician wrote for the same combination as course 1 round 1, not course 2 round 1. They admitted the error and Madelyn should not have any issues as she was to get this combination in course 2 round (about 6 weeks from now). The trouble is the principle of it all. This is a huge oversight and we have discussed this to some extent with the staff. We have been told an incident report is going to be filed and we plan to follow up on this.

On to better news. Madelyn's vocabulary is growing. She can say:

Da Da (first words)
Na Na
Ma Ma
Ball
Bubble
Dog
Wow
and now....

Uh oh!

She is trying to get crawling, but seems to get frustrated easily, so we'll continue to work on it.

Her first teeth popped through last week. She has two little toofers on the bottom. They came through together and she did not appear to have much pain. There is a white ridge on her upper gum, so it may not be long until the top ones come in.

She is going through a stage now where she doesn't go to bed smoothly. She goes to sleep while nursing, but during transfer to the crib she awakes and is WIDE awake. ON the bad side, this is a problem we need to address quickly. On the other hand, she is so darn cute when she gets back up. Irresistible!

Course 2 Round 2 (or round 6 if you like) is set to begin 6/26. We have altered the roadmap to accommodate the mistake. Basically round 5 and 7 have been reversed. Rounds 6 and 8 stay as is outlined on the roadmap. Her chemo should only be 1 day this time since there is no VP-16 (runs over 3 days). The plan is to go through to the end of course 2 (round 8) and reevaluate.

ERA Mortgage hosted a fundraiser at Sheila's office. In a little over 3 hours, they raised $1600. Many of my BCBSSC colleagues were there. We have expressed our thanks before, but to be clear, we truly appreciate what everyone has done for us.

This has been pretty short and sweet, but hopefully this gets you up to speed.

Thanks to everyone and please keep us in your thoughts and prayers.

The Bell Family

Big Update - Chemo Continues

We got the results back from the MIBG and Madelyn still has some faint glowing in her left chest. This implies that she still has active disease. The plan from here is to do 4 more rounds of chemotherapy. Most likely we will have to do surgery at the end if the primary tumor in her chest is not 90% reduced.

We are scheduled to begin the next four rounds on 6/5/2007. This Friday, we are going to the zoo. There is an event going on that is just for chronically ill children and their families. Kaitlyn is coming down this weekend.

There is not much else to tell, but we're pretty down about this. We hoped that she wouldn't have to endure any more of this, but it appears we have no choice.

Thanks for your continued support.

The Bell Family

Quick update!

Happy Mother's Day to all. Just wanted to give you all a quick update from this past week. We went in on Monday and Thursday to have lab work done. We've been giving her the Neupogen shots for 10 days now. Even while receiving the shots we found out on Thursday that her white cell count was ...2.5, down from 13 on Monday and her ANC count was 325, down from 11,310 from Monday. So we knew that this weekend would consist of staying inside and not taking Madelyn out. We had originally planned to go to church on Sunday and then brunch and then take our Mom's out to dinner for Mother's Day, but b/c of the circumstances, we decided to just stay at home and cook for everyone. While I was at Wal-mart on Friday, I found a little kiddie pool that I picked up for this weekend. I decided that since we couldn't go out and have fun, we would have a blast while staying in. And from the picture above...you can see that that is exactly what we did...had a blast.

We did get some good news this week. After the VMA/HVA test that the did at the end of April we found out that they are all within normal levels. When I say normal, I don't mean normal for a baby w/cancer, I mean normal for a baby Madelyn's age w/out Cancer. This is fantastic news. When we first started Chemo in Feb. if you all remember, her VMA count was 911, a baby her age w/no cancer's top normal range is 22.5, as of April 30 Madelyn's VMA level was 16.7. Back in February Madelyn's HVA level was 432, a baby her age w/no cancer's top normal range is 36.4, as of April 30th Madelyn's HVA level was 23.5. Like I said, good news right?!?!?!

We are so torn w/emotions for these next couple of weeks. Tomorrow (Monday) we have a follow up Eye. Dr. appt. w/wonderful Dr. Cheeseman, Opthalmologist. He is the Dr. who diagnosed Madelyn and had to break that life changing news to us on December 15, 2006, then after that appt. we go to the clinic for bloodwork. On Thursday we are scheduled to have her port accessed and bloodwork done at 12:30 in the clinic, then off to the hospital to Peds. Sedation for her MRI and her bone marrow biopsy. The following week, Wednesday, May 23rd, we will have the radioactive injection for the MIBG Scan. Then we wait for the wonderful news that we are N.E.D.- No Evidence of Disease. We have talked about after we get this diagnosis, we will have a big party on June 16th to celebrate the wonderful news and to thank everyone for all of the continued support and prayers!

Keep praying and we will keep you all informed of the outcomes.

Chemo is DONE!!!!

We went in and completed the last (scheduled) round of chemo yesterday! Madelyn was pretty good. She slept for 1/2 the time. She got a "Certificate of Achievement" for Bravery During Treatment from the hospital staff and some Target gift cards. We got home around 2PM. She starts Neupogen shots (yes, they were prescribed this time!) today and continues for 7 days. It seems like we are anticipating some issues with her non-white cells (RBCs and platelets) so we have lined up information for a directed donation of my blood and Sheila's platelets for Monday.

Right now the plan is for 2 weeks of recovery from chemotherapy and then on 5/17 we are planning to get an MRI done and an MIBG done the following week, 5/24. After that, we hope to get a return of NED (No Evidence of Disease) report.

We'll keep you all informed as more information becomes available.

The Bell Family

Update

Well, we got through the hospital stay OK. Madelyn came home on Friday and her upper respiratory symptoms have persisted a little bit, but we manage that with Benadryl. Her counts have recovered as of 4/24, so we will most likely begin the 4th (hopefully final) round of chemotherapy 5/1-5/3. This should be done as outpatient as the others have been.

Madelyn will receive Neupogen during this next round. As you have read, Madelyn's white blood cell counts got down to 0 last time, and this will hopefully prevent that this time. Her red cell count took a big hit as well, but Neupogen will not help with that. We are trying to line up a directed donation from me to her should she need blood products during the next round.

About 3 weeks after the final round, we will repeat EVERY diagnostic test we've ever performed to determine the status if her disease.

On the good stuff, she is doing well and developing normally. She is a character. During her hospital stay, she would break out her little fake cough when hospital personnel would come into the room. She loves The Backyardigans program. I never thought that at 7 months she could watch it so intensely, but she knows what she is looking at, and by the way, if you walk in front of the TV she does whatever is necessary to look around you.

She is eating well and is building some upper body strength so hopefully she can start crawling within a month or so.

That's it for now. Thanks for your thoughts and prayers. We think of you often.
The Bell Family

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

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