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