D Day

D Day has come and gone and we would be willing to pay any amount of money to never have a night like that again. Lets walk through the events leading up to the meltdown.

We went into Thursday night somewhat confident, because half of the nights during the week leading up to D Day, Sinatra was able to sleep from 1:00 am to 4:00 or 5:00 am.  If she could do this on D Day it would be great because then we would only have to keep her calm for 4 hours leading up to the procedure.

Thursday night was going great. Sinatra had a great dinner, nice bath, was happy, and went to sleep easily.  As is the new standard, Sinatra woke up at 10:30 pm to be fed and have her diaper changed.  Proactively, we woke Sinatra at 12:30am to feed her the last big meal before her procedure at 9:30 am the next morning.  She ate a lot of food and went to bed quietly.

Then 2:00 am happened! 

S*!T......... Sinatra woke up with a poop, and D Day is on!!

Of course since Sinatra was up, she was starving, and the odds of her falling asleep were worse than the lottery.  We tried everything to keep her calm. We tried clear liquids but she only wanted milk, we tried playing but she wanted to go to the kitchen, we tried watching Mickey Mouse but she wanted the food network.  We couldn't win. We put her in her crib hoping that she would get tired from crying so aggressively that she would fall asleep, but that didn't work.  We tried everything but Sinatra was on fire all night. Imagine dealing with a child that can't talk, is extremely hungry, on steroids, very hungry, has a diaper rash that almost had her admitted to wound care, did I say hungry, and two parents that are so tired and emotional that they look like Eeyore walking around the house trying to cheer Sinatra up.  

Finally, after what seemed like four days, 6:00 am arrived and we decided to drive her around Huntington Beach. It actually kept her calm until we had to stop the car at a red light, then she would go crazy.  We decided to create a route around Huntington that was all right turns to keep from having to stop the car.  At 7:30 am we decided to head to the clinic a little early for our appointment.  When we got there Sinatra was so mad we couldn't get a good blood pressure reading or take her temperature. Some good news was that Sinatra didn't gain any weight since her visit earlier this week. We also got the news that her ANC was above 3400 which is always good to hear.

At the clinic prior to the procedure. Wow does Sinatra look angry!

When it was time to start her procedure, it seemed very odd for us because we were used to having these procedures performed in the hospital. Today and for the future procedures we will be at the outpatient clinic which doesn't 'feel' like a hospital for some reason. It has all of the equipment, doctors and nurses but there is a weird feeling that it isn't an actual hospital, its hard to explain.  Sinatra finally got her happy drug around 9:35 pm and started to calm down. The next part was unexpected and probably one of the hardest things we have had to experience so far. The doctors wanted us to stay in the room and hold Sinatra while they sedated her.  It doesn't sound to extreme but to watch your daughter slip into an unconscious state is a very hard thing to stomach. This was extremely emotional for us to be a part of and we will never forget these two minutes and how painful it was to watch. 

After about an hour the procedure was done and we were allowed to go see Sinatra in recovery.  The procedure was a success and they got the bone marrow sample they needed to test the MRD and were able to put the chemo therapy into her spinal column.  

When we were debriefing with the doctor about the procedure and what comes next we asked to confirm if Sinatra is done with the steroids that have been causing such havoc on her. We had told Sinatra the night before that it was her last day of steroids, but the doctor told us we had one more day to go........uggggghhhhhh.  We are looking forward to the 'non-roid rage' Sinatra to be back with us.

As for the results of the MRD test, our doctor would normally wait for our next parents meeting, which is on Wednesday January 22nd, to tell us the results, but she knows that we will be a nervous wreck until we hear the results so she said she will call us the second the results are in. 

We will post the MRD results as soon as we get them. Stay tuned...