Tuesday, May 13, 2008

It's good to be on this side of that...

I've uttered this post's title phrase so many times now when folks ask me how things are going. It is true. IT is wonderous to be on this side of such an amazing and wrenching journey. Although we're not quite finished, Sophie is technically still in treatment for the OMS, we are well on our way to a full recovery. Sophie has passed all of the post treatment milestones with flying colors. Her scans to date have been clear. We are waiting for the final results of last week's MIBG and CT scans, but have no reason to believe that they would show anything other than all-clear.

Zach is doing so well, I want to pinch myself occasionally to make sure it's all real! His math and reading are at the 2nd grade level. I'm just amazed each time he reads an entire book. I don't know what I was expecting from a first grader, but certainly not such proficiency in both subjects. His pool of friends is ever increasing. We have had more than a dozen birthday party invitations in the past couple of months. For both kid's friends, but still, I can't keep up!

Over the past several months, birthday parties notwithstanding, a good deal of our energy and efforts have been dedicated to reducing Sophie's dependency on the steroid medication that keeps her OMS symptoms at bay. We have successfully tapered from a previous threshold of 17mg every other day to 5.5mg every other day. It was at a half a mg per week, more or less, but we've now reached the point that we can begin the delicate process of completely weaning her from the drugs - safely and hopefully symptom free! We will see an endocrinologist at the end of this month to help with this process.

We have officially moved into maintenance for the ganglioneuroblastoma, with clinic visits dwindling to quarterly! It is sad not to see all of the staff and families that we have become accustomed to seeing each week. But also nice that when we do see them, we can talk about more than a diagnosis or treatment. Many of the children and families that we met through the process are also moving into new phases and it is just lovely to see such healthy, happy faces!

Of course, with each child that beats the disease, there are new children diagnosed. In the past several weeks, two friends have reached out with friends who have a recent diagnosis. Another family from Zach's school struggles with a recurrence and very difficult treatments. My heart hurts to think of the children and families who are beginning and continue to live the fight. My personal wish for each new diagnosis and for fighting through is from our good night prayers...

"Please give our family and all families, peace and love and hope and faith, and health and laughter and joy and patience and courage and strength. Amen."