Initial Scan Results and 6 month update

Well, we didn't quite get the rubber stamp we hoped for. Madelyn had her VMA/HVA sent out on March 18th and the results were that while they were still in normal range, they were higher than last month. We had Madelyn's MRIs on Thursday April 3. The day was not too bad, even though Madelyn couldn't eat all day.

That evening, we had a recurrence of the post-MRI fever we had back in December. About 3 hours after the scans were over, Madelyn went downhill quickly and began having chills. We took her temperature and it was 98.4. We took it every 5 minutes and watched it climb to over 103 in about and hour. We gave her Tylenol at the first measurement above 100 and rushed to the ER. By the time we really got settled in the treatment room, she had leveled off and then the fever began to break. They did a cath for a urine culture and drew blood for a CBC and blood culture. I convinced the physician to do a chemistry panel as well since I was pretty convinced there was no infection. This is the second time after an MRI that she has had this, so we wanted to get an educated guess at why. Obviously you suspect the anesthetic (propofol) or the contrast for the MRI. Both were met with doubt from the staff because they felt that the propofol should have been metabolized after a few hours and the contrast is considered a very low anaphylactic risk. They actually tried to brush it aside and call it another coincidence. Madelyn's blood work came back with nothing EXCEPT her blood sugar was high (190). They wanted to repeat with a finger stick and it came back at 130. So we will get it checked on the 9th by doing a fasting blood sugar test with our pediatrician. After conferring with the oncology staff, we are at least in agreement that next time we must come up with a different approach. We asked about the MRI results, but they weren't posted, or at least that's what we were told.

The next day, Friday the 4th, we got the call we didn't want. The MRI showed that her cervial (neck) lymph nodes were larger bilaterally than previously measured in December. They still appear to be within normal range (~1 cm), but this coupled with the increase in VMA/HVA concerns the staff. According to the physicians, they see no changes in the chest and liver. I'll come back to this later.

When I say it concerns the staff, I am alluding to the fact that Madelyn's disease could be back. Our diagnosis on September was "no evidence of disease", not cured. The concerns have forced us to do a series of diagnostic MIBG scans Wednesday the 9th through Friday the 11th. We go in tomorrow at 1PM for Madelyn's injection of radioactive iodine, and return at 3PM for her longest scan. The scans on Thursday and Friday are relatively short in comparison.

For a refresher, the MIBG injection is absorbed into any neuroblastoma cells that may be in Madelyn's body. Rather than examining Madelyn's tissues through an MRI, the MIBG will "glow" where the radiation is absorbed. When we did the MIBG in the fall, there were no obvious areas that showed disease, and we hope this is still the case.

For some of you, and definitely for us initially, we were floored. Sheila ran straight away about what the possibility of having to begin treatment again would mean; surgery for a port again, chemo, losing her hair, and considering how much she dislikes the hospital a much rougher time if it is required. We do have a reason to hope and I'll tell you why.

There were no visible changes in the chest and liver. The disease that was there before appeared to be gone or dormant in the fall. These tissues were one thing and one thing only...cancer. The lymph nodes, where morphology changes were seen this time, by their very design get larger under certain conditions. Anyone who has been to the doctor and had them feel your neck and jawline know that they are palpating for lymph node enlargement. And wouldn't you guess, Madelyn was sick in mid-March, and not just a little bit. She has had some bouts with inner ear infections, and our trip to the ER the day of the scans showed redness in the right and left ears; not necessarily an infection. Now for the VMA/HVA.

As I stated earlier, her VMA/HVA were elevated in comparison to the prior measurement but still within normal range. While researching this test over a year ago, I recalled that a number of factors other than neuroblastoma can cause elevations in the catecholamines. The week of the test was a few days removed from Madelyn's biggest bout with a cold/flu in March. She is also cutting molars now, and required some pain relief. She was getting it twice daily when the tests were done...Tylenol. You can view the list here.

So, what we have are two reasonable explanations for the changes in her diagnostic tests. This is the hope we cling to. Those of you who know me know that optimism is not my nature. Maddy has changed me, because hopelessness will not help her, Sheila, or myself. She believes nothing can hurt her. She is fearless. She has faith in us and knows when she calls, we'll be there. I can be more like her. I just have to have faith in my Father too.

It is our hope to have some results by Friday. We'll update as soon as we know. Please, for just a moment, close your eyes, picture Madelyn's beautiful face and say a prayer for her.

Thanks,
The Bell Family