Monday, April 19, 2010

Monday, April 19, 2010 8:58 PM, EDT

We made it home. The hospital did everything in their power to make sure it was a very stressful day. They pushed her bone marrows back, no one was helpful and there seemed to be an attitude of uncaring about our situation. They also made a new rule that Ally had to drink water before she could leave. She was still groggy and refused to drink, after 3-4 minutes of pleading with her so we could make our train I ended up pouring water on her and just saying to the nurse that she drank some. It was the icing on the cake. Then the whole NYC situation ended with Grampa and Mommy and Ally having to meet on the streets of NYC 1/2 way between the hospital and the Ronald and hailing a taxi there. We are in contact with a patient advocate. They have done some research and the woman has said she found some things that the hospital did not do well. Several different things. We now have a contact person in the neuroblastoma team and things should run much smoother in the future.
Ally did a good job on the almost 5+ hour train ride home. (The train was delayed and then we had to make extra stops because they are doing construction on the tracks.) It was VERY nice to see Daddy at the train station.

Tomorrow Ally begins 2 weeks of a medicine she used before. The big side effect is extremely dry skin/lips and avoiding the sun. They are gel caps, so we are hoping she will be able to take them the way she did over a year ago. We warmed it up in warm water for about 20 seconds, and then she just popped it in her mouth and chewed and swallowed.

That's about it for now, it was a super long day. We are looking forward to 3 weeks off.

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