Thursday, October 13, 2011

Tough Day

Hi Everyone,

Yesterday was a crazy day. Julia had her bone marrow and LP yesterday and of course things weren't as smooth as we would have liked. Julia was NPO (no food or drink) in preparation for the OR yesterday. Once she found out she could not drink she started panicking. She said "mommy I'm not going to that room am I? Tell me the truth mommy. Don't send me to that room." She is so smart that she knows when she is NPO that normally means the OR. As she cried and trembled with fear, begging me to tell her the truth and asking me to promise her she didn't have to go to sleep I looked her straight in the eye and lied. As my 6 year old looked at me to reassure her everything was going to be ok I had to tell her she wasn't going to "the room". Talk about the worst feeling in the world to have to lie to her. She was so anxious that the anesthetist had to drug her before going to the OR. She was so stoned but still managed to cry and beg me not to leave her. I carried her in and they pushed the "sleepy medicine" as I held her in my arms I felt her little body become completely lifeless. I laid her down on the bed and could barely compose myself as I watched them mask her as I left the room. While she was in there the doctors told me that the pressures in her brain were really high. When they do an LP they check for pressure in the brain before taking the spinal fluid. The norm is below 20 and Julia's pressures were 43. Once she came out and went into recovery we were rushed to Optamology to check if they could see the pressure behind her eyes. Thankfully there was no pressure seen in her eyes. In the late afternoon doctors came with the LP results. Looks like she has Aseptic Meningitis (viral meningitis - not bacterial which is the really bad one). Now its figuring out how and why she developed this. There are multiple reasons starting from the simplest (a viral infection or drug induced) to very serious causes like an infection in the brain or PTLD. She is scheduled to have an MRI of the brain today to try and help doctors figure out what's going on. Thankfully she is feeling ok considering. The bone marrow results are not in yet and doctors are anxious to see them and see if it can give them any further answers. She will also have a CT of her chest to look for evidence of disease. This new finding doesn't really give us any answers with what is going on with her counts, kidneys, etc. it just gives us something else to deal with and worry about.....unbelievable.

I can not begin to describe how I am feeling. It feels like being repeatedly kicked in the head when your already down. Instead of moving forward and towards discharge it seems like things are getting more complicated everyday and this admission may be a long one. I am meeting with Julia's oncologist this afternoon to discuss our plan and she will have bone marrow results by then which we will discuss as well. If we're lucky the MRI results may also be back.

I will keep you all posted as I find out more but for now please pray that the MRI is good.


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