9/23 Tues Morning Update

Yesterday was a hard day for Ash. She had an MRI, followed by a biopsy and they also took some bone marrow samples from her back. We are hoping we will get the pathology results today (Tuesday). We had a little bit of a scare at 8pm where she was in pain and having trouble breathing, but soon after her breathing went back to normal and she fell asleep. The good news was that she had a great night's sleep. This morning she said Mommy, Daddy, Lindsey and Mickey Mouse. She seems to be getting her voice back a little bit.

The neurosurgeon has been monitoring her closely because the tumor is pressing against her spine and trachea. The concern is that if the tumor were to put too much pressure on the spine that she could become paralyzed. So they have been monitoring her closely and have decided to operate on her this afternoon to relieve some of the pressure that the tumor is putting on her spine. She was just ordered to get another MRI of her brain area before her surgery. Our hopes were that we would get the pathology reports by now, but we are still awaiting that information. The neurosurgeon just feels it is best if they operate on her right away to help alleviate some of the pressure on her spine.

Adrian is taking Lindsey to preschool today. Our pediatrician thought it would be a good idea to try and keep her routine as normal as possible. She is missing her sister a ton. They are truly best friends. It broke my heart when she woke up in the middle of the night crying and asking for her sister recently. She doesn't fully understand what is going on but she knows that her sister is sick and that she wants her to get better. Lindsey says she likes listening to the prayers and then saying "Amen" .... so we've been praying a lot together.

We'll continue to try to do our best to keep everyone updated. Things are evolving rather quickly.

Oh and as far as visiting hours / information. Anyone who would like to come is more than welcome to visit. We are at Children's Memorial in Lincoln Park. There is a parking garage across the street from the hospital on Lincoln Avenue. We are currently in the PICU on the 2nd Floor - Room 239. I imagine we'll be staying here. Visiting hours are 10-8:30pm. Once you check in at the registration desk they can validate your parking so that you only pay $4 or $5 (I forgot how much it is exactly). Valet parking is the same price.