Things could be worse...

Well, Sophie has had all of the major post-chemo tests now and, unfortunately, that are not what we expected. The ultrasound and CT scans confirmed that the initial tumor is still there - albeit smaller - AND they showed two additional masses. The doctors tell us that these could have been there all along and were masked by the main tumor. There is the main mass on her aorta (beneath the celiac artery and above the superior mesenteric artery) and two others that could be lymph nodes. In addition to 'seeing' the masses, Sophie also had another MIBG nuclear scan that showed neuroblastoma cells. Let's recap for a minute...

There are three types of neuroblastoma cells, classified as:

• ganglio neuroma - mature, benign cells;


• ganglio neuroblastoma - a mixture of mature and immature cells;


• neuroblastoma - immature, malignant cells

Sophie's diagnosis from the initial biopsy was ganglio neuroblastoma.

The MIBG showed the presence of something in all three masses - it could be any one of these at this point, but most likely ganglio neuroblastoma or ganglio neuroma. The doctors are recommending a 'second-look' surgery to see if the last course of chemo shrank the initial tumor enough that it can be removed without jeopardy and to remove the other masses for biopsy. We are tentatively scheduled for surgery November 9th. This is all happening really fast, so bear with us as we explain as we go. Whatever is removed will be reviewed by pathologists to see where the cells fall in the classification above. If everything is able to be removed, and no immature cells remain, we're in the clear. However, if everything cannot be removed or immature cells are found, we will start another course of chemotherapy immediately. Let's all focus our energies on the former!!!

We meet with the doctors again this Thursday (10/26) for final decisions and scheduling. For now, Sophie is back in daycare for a few hours each day. This gives her a break from me and the house, a chance to play with other children, and the time to receive physical and speech therapies. I also get some time to make calls, sort piles of mail (from the USPS and Kindergarten - UGH!) and keep you all updated on what's happening.

Keep your thoughts and prayers coming, we need them now more than ever. This news is so much harder to take and react to than the initial diagnosis. As I explained to the doctor last week, the initial diagnosis inspired us to fight, to give all our energy and focus to the plan and returning Sophie to full health. While our goal is the same, our resolve has taken a hit. We still want the best, but are more tired from the fight. We could so clearly see the light at the end of the tunnel, and somehow a new mountain was plunked down in our path. Fortunately there is still a glimmer at the end, and we haven't lost sight completely.

After all of this, we are assured that Sophie's prognosis remains the same - a full recovery. That's something I can hang my hat on with a smile. The other stuff is just time and energy.

Now for a few more uplifting thoughts. This past Sunday we took the kids to a farm up in Howard County, here are a few pics of us all having a great time. Enjoy, and thanks for reading!