We have reached the 1 year mark!!!!

Madelyn had her 1 year checkup last week. Earlier in July, we submitted her sample for VMA/HVA analysis and got a high reading. We have had a few false results, so we asked the staff to resubmit and everything came back normal, so going in to her 1 year MRI we felt pretty good. She is healthy in appearance and developing great!!! She knows her entire alphabet, can count to 20+, knows her colors and shapes, and is close to recognizing her numbers by sight. She is beginning to develop a golf game that will put Dad to shame very soon. So, when we went for our visit Wednesday for the MRI the most we were worried about was how the anesthesia would go.

If you recall, Madelyn has had some odd reactions to anesthesia, or that's our best guess. The last two times she was put under anesthesia, Maddy would develop a high fever about three hours after the MRI was over. We changed to some older drugs, pentabarbital and fentanyl. The only issue is that it takes longer to come out of the deep sleep. The day began with the power and A/C going on the blink at the hospital, getting moved to a different area that had spot coolers (it was still 85 degrees in there), and not starting the MRI until about 2:45PM. Everything went pretty well and we left the hospital about 9PM. We had to return on Thursday around 1:30PM for the results.

We came in at 1:30 on Thursday and immediately the resident said her MRI was good, so we could relax. When Dr. Neuberg came in he went over the MRI:

1. Her chest looks good. The tumor size is now 2.7cm x 1.1cm x 2.0cm. Now they are able to visualize the tumor and it partially encases the subclavian artery (from the chest to the arm) and it butts up to the carotid artery (head and brain) and esophagus. We asked if this was a concern and the answer was not at this time. We (Sheila and I) are still concerned that as these vessels grow, the remaining masses could restrict bloodflow. We plan to watch that closely and ask about it going forward.

2. Her liver looks almost normal.

3. Her neck looks the same, and her nodes are marginal (around 10-11mm). This has not changed.

So, her neuroblastoma appears to be in check and the doctor even went as far to say that based upon the findings, her cancer may have evolved to ganglioneuroma, a benign tumor that will not progress any further. This is GREAT news.

There was, however, a slight punch in the gut that we are still dealing with. There appears to be a mass near her spine at the T12 level. From the report it is extradural (outside of the spinal column). This is new, but upon reviewing her films, the radiologists stated this has been there all along, since December 2006. (We are getting her films on DVD today for our review). Initially, we were shocked and not thinking very clearly. The doctors deduce that since it has been there for almost two years and she appears to be completely healthy as far as leg strength, balance, etc. that we should not be concerned. All it took was a few hours of quiet time for both Sheila and I to quickly decide that this is not sufficient. We think we HAVE to know what this is and have begun steps to get referrals for neurologists/neurosurgeons to dial this in. My quick research turned up no likely candidates. She is asymptomatic and looks fine. The countless number of possibilities for what this mass could be deeply concern us and while it appears to be isolated to this single tumor now, if it is something like another type of cancer, we want to catch it while it is still outside of the spinal column and not spread to other parts of her body.

The bad part is that this "new" finding is casting a shadow over the great news that the neuroblastoma is in check and she has been free of this scourge for over a year now. We have read frequently where children have been declared NED and relapsed between 6 months and 1 year. Relapse is obviously not good, but it usually goes beyond "oh yeah, the cancer is back". It is frequently more aggressive and because treatment has not been delivered during the NED phase, it sometimes progresses under the radar even more than the original disease. For this we are very grateful.

As far as the tumor near her spine, we asked and received a referral to see a pediatric neurosurgeon. (This post was written in two sittings, so please bear with me) We have looked at the report and the radiologists state there that based upon the etiology (appearance and shape) that it looks like a benign peripheral nerve sheath tumor or a benign vascular mass. Our hope is that the neurosurgeon agrees. We requested to be referred directly to a neurosurgeon because it eliminates the need to be seen by a neurologist who practices pretty much the same clinical medicine that a neurosurgeon does, but cannot go forward if a biopsy is required for definitive results. The appointment is September 3rd.

Again, thanks for taking the time to check in with us. Your continued support is not taken for granted and we love you all for caring about Madelyn.

Rick