Arrival to Peoria

Lucy at the hospital in Peoria

On our Way to Peoria in the Ambulance

I had talked about that "fateful day" a few blogs ago.  The day that started out as any other day, but in the end would end up turning our world upside down.  I thought I would continue talking about that day as it unfolded.

Lucy and I rode in the ambulance from Bloomington to Peoria to the Children's hospital which is also a St. Jude Affiliate (we didn't realize this at the time or if we did, we weren't focusing on that).  Lucy fell asleep on the way there, and I did all my phone calls to family to let them know what was going on.  The ambulance personnel were so kind and so good to Lucy.  They were from El Paso.  It really seemed like one of the longest rides ever.  Zach wasn't with me, he was home packing clothes and driving separate.  He told me later that he drank at least a 12 pack of soda on the way to the hospital and was driving 100 miles an hour.
We pulled into the hospital, and the ambulance driver asked one of the nurses at the station if she could grab a special gift for Lucy. It was the day after xmas, so they had a lot of gifts for the kids.  Then the nurse took us up to our room.  It was a HUGE room. And Lucy had a crib bed, not a regular bed.  I was a little taken back, but then I thought, well that's better for her to sleep in and not fall out.  It was a sad room.  It had all kinds of machines and was designed for a sick child.  It was heartbreaking, even more so because it was MY child who was sick and laying in that bed.  I don't remember a lot from that point until Zach got there.  I know I was anxious and the nurses were trying to keep Lucy busy with the TV.  She was enthralled with it all and not a care in the world.  I am certain she could sense my fear and sadness, she was asking why I was crying.  I told her I was sad because she was sick.  She told me not to cry.  So I tried not to.
I remember them putting an IV in her hand and I honestly cannot remember if she cried or not. We had the IV from the other hospital, but for some reason, they had to put their own in.  Then the whirlwind storm started.  The nurses came in and didn't tell us that much at that time but I do remember when they came in and told us they were going to give her blood products.  They said she needed platelets and blood.  We were so naive about that whole process.  I asked "well, can we just donate and give her our blood? "  We were concerned because of the horror stories you hear about what diseases people can contract from getting blood products.  She said "oh, honey, that's not possible.  First of all, it would take a while because we would have to wash your blood, and type it, and second of all, she needs a lot of products, and if you give once, you won't be able to give for a while in case we really need it.  We ask that parents don't donate blood at all during the duration of why their child is ill".  I was a bit confused, but what could I do, she needed them bad, I didn't know how bad at the time, a number meant nothing to me because I was oblivious to what was "normal".  Her platelets were 2000, a normal range is 150-300 THOUSAND.  Had she fallen and broken any more blood vessels, she could have bled to death.  We had no clue.  It made me sick to my stomach to think about it.  For months later I still couldn't think about it without almost throwing up.
I'm not sure quite of the events after that and in what order they happened.  I do know my family had came up and we were waiting to hear from the doctor. I remember there was a shift change with the nurses. And the nurse had come by to say goodbye and that she was off and would be back Wednesday. (it was Sunday).  Zach said "um we WONT still be here by Wednesday, are you crazy".  It was incomprehensible to us that we would be there for more than a night.  Again, we had no clue what was going on.  Then our nurse came in and Zach asked her something about either the transfusion or something and she said "well, your daughter has cancer you know".  We looked at each other in shock and he said "no, actually I didn't know that at all, nobody has been in here to tell us".  So that is how we officially found out.  What a horrible way. So now we were hunting down a doctor.  We demanded one immediately.
Dr. Fernandez came in and told us that Lucy did in fact have leukemia and that they were running some blood tests to type it (again, we had no clue what this meant).  She said they would know more and have a plan of action after they got the typing back.
I cried.
and cried.....and cried...
I don't remember much of what happened after that up to when Dr. Fernandez came in to tell us the rest of the news and quite frankly, I don't even remember the order of that.  She told us that Lucy had Pre-B ALL, and that was the good kind to have (I'm thinking..whatever...good and cancer in the same sentence).  She said T-cell was much harder to treat so that this was good news considering our situation.  And she was so calm.  Everybody was so calm.  Then she told us that She had called doctor Howard at St. Jude and we had been accepted as a patient.  We were still so confused and naive about what was about to happen.  And we didn't understand what it meant when she said we were accepted as a patient.
My family was still there and they helped to keep Lucy entertained why we were going through all of this in our minds.  I remember Dr. Fernandez taking us into a little room and saying "this is your new normal now"  I had no idea what that meant or how important those words were.  She explained we would be treated in Memphis and that they were waiting on Lucy's counts (I had NO clue what that meant) to see if we could drive her to Memphis or if she needed to be taken by ambulance.  Again, we are hearing this, but not processing it.  We had NO idea how serious the situation was.  I was at a hospital and expected her to be "fixed" and then go home.  Then a social worker came in and talked to us about how to get to St. Jude, the ins/outs, housing, etc.  Housing?? Why would we need housing?? At this point, we also had no clue that St. Jude takes care of the medical co pays and we wouldn't have to pay out of pocket for that.  So in our minds, we are also discussing the fact that we had zero money in our accounts (it was the day after xmas), and we were trying to figure out how we would pay our bills and when do we file bankruptcy. And I'm not kidding.  We were certain we would have to and just wanted to make sure we still had our home.  We also let our work know what was going on, at least what we knew.  I think they told us at that point we would be in Memphis for a couple of months, but I don't think we heard it...at least I didn't hear it.
After that meeting, Zach and I went out in our truck, and we cried.  We sat there with each other and kept asking why.  Why us?  why her?  I was so angry.  So very angry. I wanted to hit something.  We came back up stairs and told our family what was going on.  I don't even think we told Lucy at that point, I'm not sure..I don't remember what we told her.  Here she was the center of attention and the reason we were there, and yet, I don't remember much of her that actual day, all I remember is when I was on the phone talking to somebody and crying she would ask "why are you making that voice?  are you crying?  stop crying".  From that point on, there was NO crying in front of her...EVER.  I also know she was getting all sorts of presents and playing in the bed and eating whatever she wanted, but that's it.  I find it weird.  That was just a few hours that all of this happened, but when I think back to it, it really seems like it lasted for days.
Our family left and said they would be back in the morning. And then a long long long night was ahead of me. I had the hardest time sleeping because here Lucy was attached to all these wires and IV's and I was terrified she was going to pull one of them out.  So I was awake pretty much the entire night checking on her.  She got tangled up a few times.  I do remember sleeping on the floor, and the nurse came in and gave me a sleeping chair.  then I remember one of my friends from highschool coming in to check on us.  That was nice.  I hadn't seen her in years and it was good to see a familiar face.
The next morning, I was anxious.  Dr. Fernandez said that we would be able to drive Lucy to Memphis as long as we could get there in 8 hours.  We said "well, discharge us and let's go".  We called our immediate family and told them to meet us at our house.  Now, Jack had no clue what was going on at this point.  He had not been up to see Lucy and we hadn't even talked to him on the phone.  I do remember my mom coming up to the hospital that morning with my brother and his wife and Lucy saying "Grandma, WHAT are you doing here?".  That just pointed out to me how much she was so unaware.  So we started to pack up our stuff and head home to pack for Memphis.  Zach said "I want all the family to meet us there and I want to have one last normal dinner together before we start this.  Little did we know, what that would really mean....

This video is right before we left to go home and pack up.  My nephew had given Lucy his MP3 player filled with Beatles songs to take with us on the trip.