Maria update

A lot has changed since my last post about Maria. She was scheduled to be at CHOP this past Wednesday for an injection of contrast dye for an MIBG scan on Thursday. Because it took 5 tries to get the line into her little arm, they decided to leave the port in and sent her back home (home meaning my house) with this little Velcro gizmo in her arm to protect it. For everything this little girl has been through, for some reason, this thing didn't bother her! It did have a scratchy edge on it, so I improvised with the tube of a sock to protect her little face after we notice she scratched herself. Here is what she looked like on Wednesday night.

































Thursday, Vince and Lorraine took her back to CHOP for the test. Originally, the radiologist was going to sedate Maria for the scan, but when they realized that the tumor was pressing up against the windpipe, they decided not to do that because the sedative relaxes the muscles around the windpipe. They were concerned about too much airway constriction. Her lungs were completely clear, so they opted to give her general anesthesia. After she came out of that, she has some bronchial spasms and she was put on oxygen. That was Thursday night. The surgery was scheduled for Friday morning. In the morning, the surgeon decided it was best to push back the surgery for two weeks. Originally, he was very adamant that the surgery be ASAP, but he said that he was very comfortable waiting 2 more weeks to be sure the RSV was all cleared up, and that Maria was going to be "just fine." He hinted he had seen some preliminary test results, but said that the oncologist would be in to talk to Lorraine and Vince. They were hopeful that his change of attitude meant good news. And, praise God, all of the tests she had showed no presence of cancer anywhere else in her body. It's very likely the tumor is a neuroblastoma, but the oncologist again stressed that if all went the way she expected, the surgery would be the end of it, no other treatment would be necessary.

Unfortunately..it's now Saturday night and Maria is still there. Her respiration has been too rapid on and off since then, and she's been on and off oxygen. By this afternoon, the doctors were thinking more and more that the problem has more to do with the tumor pressing against the windpipe than anything else. They cultured Maria again for RSV and other respiratory viruses, but they don't expect to find anything because her lungs are clear and her nose is dry. The doctors say that there is no way to know if it's the tumor causing the breathing problems until it's removed and they see what happens. Tomorrow they will again re-evaluate, if her breathing is still irregular, she'll remain until Monday, at which time they will review all of the tests and the surgeon will decide if the surgery needs to be moved up again.

My poor sister has been at CHOP since Thursday with the same clothes...my brother-in-law stayed the first night, but has been back here the last two nights. They thought that both days she was coming home, so he didn't bring anything back for my sister. Tonight, she was going to come home and Vince would stay, but since it's such a critical night, she wanted to be there. So tomorrow, he's bringing Lorraine's stuff back with him...maybe it will be like bringing an umbrella and then it doesn't rain!

If Maria is discharged, my sister and her family will still stay here until the surgery so they are not two and a half hours away from CHOP. We've got plenty of room and I think everyone feels better knowing they can be close by.

I've been on "Aunt Annette" duty since Wednesday. I'm resurrecting all of my mommy skills...I've stocked up with chicken nuggets and macaroni and cheese, I'm giving baths again and kissing boo boos. We went to see "Hotel for Dogs" yesterday, and today we went to the Aquarium. My niece and nephew, who up until Thursday night, have NEVER spent the night without at least one parent in their entire lives, have been troopers. I think their parents are amazed, and I think God has a lot of angels here with Sofia and Anthony.

...And on top of this, our mom, who has cancer, went into the hospital yesterday. She's been in a lot of pain and they need to get it under control. Fortunately, my other sister and my brother were able to go see her today.

But still, there is joy because God is so good. If Maria hadn't gotten the RSV, who knows when they would have found this tumor. And she's in the best hospital in the country for children. And they can stay close even if she is discharged because I live nearby.

Your prayers are working. The test results have been good. If the tumor is malignant, it was caught in time before if became a bigger problem. And her general health is improving so she will be ready for surgery hopefully sooner than later. Thank you for your prayers. My sister knows this is out there and so many people are praying. And she believes prayer works.