Thursday, March 22, 2007

Free at last...

Happy Spring everyone!!! So the weather is really shaping up, but the past couple of weeks have been very stressful, full of tests, new schedules, an annoying respiratory bug that has plagued each of us in its own way, little sleep, and weird weather happenings. Today, however, most of that just drifted away as we received news that Sophie's latest nuclear scan, the MiBG, came back clear. This means that the scan did not detect any traces of the cancer - all together now... WOO HOO! The CT scan did show that there is some residual tissue left from the surgery and chemo, but the MiBG confirms that these are mature cells with no malignancy - once again, can I get a WOO HOO!?!

I don't think we had expected anything less than the all clear, but we learned through experience to be prepared for the worst! Her doctor tells us that there is a 10% chance that the ganglioneuroblastoma could recur as growth in the current tissue or the formation of a new mass. This rate drops dramatically after the first year, so we will keep a good eye on her for the next 12 months with regular scans. We expect nothing but great news from here on out!

The news on the neurological from is not as great, Sophie has had a bit of a set-back in treatment. The opsoclonus, dancing eyes, has returned a bit in her right eye, but is not considered severe as it doesn't seem to interfere with her vision, but is noticeable periodically throughout each day. We are doubling her dose of steroids in hopes of reducing the problem. Keep your fingers crossed on this one, we should know if this is effective in a week or so. This small set-back means that the steroid therapy will last longer than the originally anticipated 12 months. Actually the doctor running the study indicated that most children require about 18 months on the steroid therapy before weaning completely. More watching and waiting.

Other happenings include Music Night at school tonight. Zach and his fellow kindergartners and the first grade classes sang a number of melodies, they even had hand movements and some dance moves thrown in! It was very cute, and of course we have pictures and video (pics to hopefully post tomorrow). Zach is doing well on his now forth ADHD medication and we're hopeful we've found a long-term solution. He just started this particular drug on 3/20, so we'll report back when we have more time to observe the affects.

Sophie's hair is growing back - blond! Not quite as blond as before, but light nonetheless. Again, pics are pending.

Mom and Dad are getting through one day at a time. I've returned to work - albeit on a very limited schedule until I can get a handle on all of the post chemo and OMS related appointments for Soph. We're getting there, day by day, week by week.

Thank you all again for your prayers and positive thoughts! They worked and continue to bless our family. Until next time...Peace!

Sunday, March 11, 2007

Catching up...

Okay, so we've been REALLY busy with life lately - so busy we haven't had time to post. But, that's a good thing, right?!?

Since the last post Sophie has completed her second round of chemo and is now awaiting nuclear and CT scans to see what's left of that pesky tumor. We were scheduled for this past week, but we had another little run-in with croup. Harken back to last June when we spent a couple of days in the pediatric intensive care unit for the same illness. This time it was, thankfully, not as intense! However, the first night, Tuesday, gave us a bit of a scare - enough so that we called the paramedics. Sophie was breathing much better once they arrived and we decided to drive her ourselves to the GUH emergency room for treatment. By 6am she was asleep in the ER and we awaited the clinic opening for an appointment scheduled for that day. The nuclear injection was scheduled for that afternoon and the scans for the following day, Thursday. Sophie needs to be sedated for the lengthy scans and any compromise to her breathing and airway is risky, so we're rescheduling for next week.

Next week also begins another chapter in our progress. Mom returns to work after more than seven months. There are still clinic appointments to attend to, physical and occupational therapy, and the ongoing possibility of hospitalization for fever or other complications from Sophie's central line. But, this is a step in a positive direction for everyone, and hopefully a sigh of relief for those that have been covering for such a long time. If you're reading this, thanks you! - you know who you are!!!

Zach is enjoying school, and started his ADHD meds a couple of weeks ago. We're still trying to figure out what does of what drug is best, but we are definately seeing improvement in his ability to control impulses. And, we still have a very creative and energetic boy, so our greatest fears of medicating the Zach out of Zach are thus far unfounded. Whew!

Well, there are a ton of pictures to post, but unfortunately, no time to decide which ones and upload now. Hopefully next week. We just wanted to post a quick update and hello to let everyone know we're still hanging on and in some respects even moving on!

Love and peace to you all!