Tuesday, June 3, 2008

It's 10pm and I just now got an email from Alyssa, Dr. Atlas' wonderful PA to say that Hannah's

MRI's today were clear, NED...No Evidence of Disease

Thank God. When am I going to start feeling the relief? It did feel good to get the good report, now I have to let it sink in a bit and realize that it is the truth. Thank goodness for wonderful people like Alyssa who took the time at 10pm at night, after a family emergency took her away from the hospital this afternoon, to access the hospital's computer system from her home and then email me. Many a doctor could learn from that kind of care.

So, on to the other news for Hannah. On Friday we met with the orthopedist at Schneider's. He evaluated Hannah and then looked at her xrays. At first he said that maybe the films were just of poor quality so we moved to the computer to view them digitally. But, they were no different. The variations that I noticed on the xrays were telltale signs of osteopenia. What? Osteo meaning bone and penia meaning poor (bone mineral density). Basically she has low bone density. We don't know exaclty how low yet because she has yet to have a bone density test, but we know that the bone density is low enough to see through the bones on the xrays. The doctor showed me an xray from a child with a normal bone density. Wow, what a difference. It was more homogeneous, more of a milky appearance and not transparent like Hannah's. Hannah's scans were see through with patchiness and a honeycomb pattern in some places (indicative of osteopenea/osteoporosis.)

What is causing this? It is probably a combination of things. The steroids she was on including the decadron before and immediately after surgery, the horrible megace that she was on for months to increase her appetite, the neurontin she was on to try and stop the leg pains after surgery, her poor diet for several months and the amount of time she was unable to walk, thus not using her muscles and bones. All of those things can lead to a decrease in bone density, especially the steroids.

The treatment? The orthopedist recommended walking, and walking quickly, any type of impact activity. Using the bones in the feet by continuing to walk on them and place pressure on them will eventually help to thicken them. Although it may be painful at times, it is essential to building the bone density. We had been doing the opposite-trying to find low impact activities because she was experiencing so much pain. Hannah was swimming, and being carried around by us quite a bit. We learned that that is not the correct thing right now for her.

We also have to meet with the peds endocrinologist regarding treatment. They may recommend some type of calcium supplement, but there are some risks to children with some of them. We visit with them on June 19th.

Other than that she has been feeling ok. Still stomach pain and nausea in the morning, not sure if that will ever go away. Her energy level is still a bit low, she would sleep every day until 10 or 11 if she could. But as long as it's still NED, we'll take anything else that comes our way.

I'll leave you with Hannah's own ponytail from Relay...

xoxo Kim