Good News!!!

Ellie in her cute hospital scrubs waiting for the MRI. We were supposed to be starting at nine and here it is almost ten. Not bad for having gone without food since midnight. She kept rolling her stroller back and forth in the tiny room.

Ellie can't resist something to climb into. Any drawer or box or basket is where she wants to be.

We had our MRI yesterday for the tumor in Ellie's neck. She did well with no hick-ups. We waited anxiously till they called us and informed us that the tumor appears to be shrinking again and that the lymph nodes that they were concerned about are back to their original size. (They were concerned because the lymph nodes were only enlarged on the side of the tumor, so they were worried the tumor was spreading). Yea!!! This is a big step for Ellie. We recently talked to Dr. E, our cardiologist, and discussed the tumor issue. She said that they won't list any kids for transplant, unless they are cancer free for one year. But unless the tumor is removed, they still don't know for sure if it is a neuroblastoma. They think it is, but a biopsy must be done to know for sure. We are just hoping that it goes away completely so that we can focus on her heart. If she needs a transplant, I want her to have that chance. It's hard to sit back and wait. That's what we have done since she was two months old. Thank goodness for the advancements that have been made. And the six medications that she is on right now. It is hard for me to think where she would be if she were born even five or ten years from now.

On another note, after being intibated yesterday, she is really struggling with her airway. She sounds awful! I feel so bad for her, because this happens every time she goes under general anesthesia. We deal with about two weeks of raspiness and coughing and throwing up till her throat gets better. I wish there was an easier way.

Ellie had another pass out last Saturday night, and the interesting thing is that she had her synergis shot five days earlier. I wondered about this when she was hospitalized last month for this. Looking back at her calender, she has been passing out four to five days after she is getting the synergis shots since November. They usually last for a few days and then we don't get another one for about a month. It's sure a big coincidence if they are not connected. I do think it has helped to have her on iron, because she only had one so far this month.

Anyway, we will take the good news for now and hopefully get more good news at her next cardiology visit. Thanks everyone for all your prayers. They truly lift us up and carry us through days like this.