Diagnosis, Part 1

Porter Hospital Emergency Room, October 24, 2011

“I don't know what's wrong with your daughter yet, but she's too sick to be here. We are going to do some tests and then she will be transferred to a children's hospital in Indianapolis or South Bend”.

The doctor suspected meningitis, and so he needed a complete blood count and spinal fluid.  While we waited for these test results we sat trying to wrap our heads around how sick she could be. She was vomiting regularly, extremely lethargic, & had a rash (petechiae) all over her torso.

He came back into the room with a very somber, serious look on his face and told us that we needed to sit down and talk.  We could see the urgency in his demeanor.  “The spinal fluid came back clear, so there is no meningitis”.  (A minor sense of relief washed over me).  “However, her CBC showed that her white blood count is nearly 1 million”.  (Ok, that sounds bad.)  “Do you know what that means”? (Um, clearly no.)  “That would lead us to believe that she has leukemia”. 

No. no. no. That is cancer.  That cannot be.  She isn't that sick.

The room goes dark.  Sound goes away.  I can only see her face.  I grab her little hand and sob uncontrollably. I might have uttered oh my god.  “We need to do an MRI and check out her brain to see what else is going on”.  (I really have no idea what he said about the MRI, just that they were taking her out of our ER room to do it immediately).  He needed to talk to an oncologist on site and contact Riley Hospital to consult and arrange the transport.  He left the room with Phoenix, so John and I could die in that room alone.  All I remember is letting John hold me while I cried.  The severity of this situation was more than my brain could process and more than my heart could handle.  What in the hell was going on?

We didn't have much time to wallow, because it seems like seconds after he left, the doctor was back.  The situation was worse.  He showed us the MRI, which showed a couple large hemorrhages and hundreds of tiny pinhead sized dots, which were also bleeds.  Her thickened blood was causing her brain to pool blood.  Her blood was full of leukemic cells and almost no platelets.  My intellect knew this was bad.  Real bad.  I didn't really understand why her brain was involved...is there cancer in her brain?  Everything was so confusing.  My heart was already crumbled from the cancer news, but now it felt like he was telling us that she was dying right now.  His face and his voice told me that he was fearful that she was dying right now.  How can this be happening? How is this possible? How how how how how?  She would have to be transported to Indy by Lifeline Helicopter.  In order to protect her precious tiny baby brain from having a stroke, she would have to be intubated and that meant they needed to put her under with anesthesia.  We had to hug and kiss her before they started that process...because, you know, that was extremely risky also. 

The timeline is so mixed up in my head.  An oncologist came to our room and gave us some print out about leukemia, and confirmed that the diagnosis would be some type of leukemia.  There was a long period of torture as they tried to put a catheter in her and they couldn't.  At some point we had to make phone calls.  I called my boss and friend, Kym.  I don't know what I said, but it was a Monday, and she needed to know that I wouldn't be coming to work.  I made John call our parents.  I couldn't do it.  I didn't want to do it.  Somehow he did... and slowly our family started showing up in the ER to see what was going on.

The intubation went as planned and they said I could go back in and see her.  There she was, with tubes and wires coming out of her, looking so tiny... and so sick.  I laid my head next to hers and rubbed her hair, and told her I was there...and not to be scared.  Somehow I discovered that unlike an ambulance, a parent would not be accompanying her in the helicopter.  I freaked.  Panic set in.  I could not let her be in this awful situation alone!  She needs me with her.  They tried to explain why... there's no space, there is medical equipment, the nurses have to be able to work on her, etc etc.  I couldn't stand it.  I went to the waiting room and laid down on a row of chairs and cried my eyes out.  What if the doctor's worst fears come true, and she doesn't make it?  What if she dies on that helicopter?  What if she dies without us there?! I didn't want her to be away from me and I didn't want her to be alone.  I was absolutely terrified.  I must have sounded like a lunatic muttering to myself and to our relatives. I don't want them to take her on that helicopter.  I don't want them to take her.

This cannot really be happening. This is just a terrible horrible nightmare. Wake up. Wake up. Wake up. 

So many people were there... I didn't want to talk to any of them. I didn't want to repeat what the doctor had said. I didn't want it to be true.

The Lifeline team showed up to take her.  An amazingly calm nurse came to me and told me that she would be with Phoenix the whole way.  She took my cell phone number and promised that she would call me if anything were to happen, and she would call me as soon as they landed at Riley.  Somehow that helped calm me a bit.  And then they took her away.

We stood outside and listened for the helicopter to leave. 

Suddenly it was time for an action plan.  Someone made one, thank God, because clearly I couldn't think of anything besides start driving to Riley.  It was decided that John would go get Diva (our then 13 year old daughter) out of school, and then drive to the hospital.  My Aunt Sue and Uncle Earl would drive my mom and myself, which was a huge blessing because we were in no mental state to drive.  And so we drove for hours, numb from the nightmare, and unknowing when it would end.