The Beginning of the End

School Picture 11-17-2010

Wednesday, November 17, 2010 was the beginning of the end - the end of the leukemia that was taking over Nicholas.  Although we didn't start fighting it until a week later, this was the day the ball started rolling.

It was Picture Day for Nicholas.  I remember telling his teachers, "I hope he cooperates, because he'd been crabby recently ..." 

It was the day I called his pediatrician's office to talk about our struggles with his picky eating and potty-training, and I also mentioned his irritability, fatigue, and paleness.  The nurse must have heard the frustration in my voice as I talked about what I thought at the time were, in the grand scheme of things, minor inconveniences.  I am thankful she took me seriously enough to have us come in that day.  I am thankful that our wonderful ped, Dr. Roberts, agreed to see Nicholas at the end of her schedule, because she wouldn't be in the office for the rest of the week.  I am thankful that she took one last, long look at him and decided to run a hemoglobin test.  She came in afterwards, sat down across from me and told me it was very, very low and that she wanted me to take him to the lab at Children's Hospital to get a more accurate read on it SOON.  She thought I could probably wait until first thing the next morning, but now would be a good time.  Trevor would be on his way to Chicago the next morning, so I decided to just get it done.  When Dr. Roberts told me his hemoglobin registered 3.4 [normal being 11.5 - 13] and that he would probably need a blood transfusion, I whispered "Shit" and she said, "That's what I thought."  Not good.

I ran  him up for the test (thanks Mom for meeting me, if only for those few moments), then came home.  Within the hour we got a call that the Hematologists wanted him to come in right away for a blood transfusion.  After some shock and tears, we packed overnight bags and headed back to the hospital.  My mom met us and took Katherine home after Trevor, Nick and I settled into the hospital room on 8 East.  Dr. Sam, the Hematologist on-call, was surprised to see Nicholas not only alert, but joking and playing hide-and-seek at 10 pm.  His anemia was severe - with the typical heart murmur, and high heart rate.  His little body was working hard to shuttle oxygen around, but he still remained playful.

Nicholas finally fell asleep, and soon thereafter he needed an IV in his hand.  Why not earlier?  I don't know.  Grrr.  Anyway, it was awful!  He awoke under the bright lights of the "procedure" room.  Not surprisingly he proceeded to cry and struggle as he was held down, calling the phlebotomists "stupid" and "naughty,"  (thus christening those words into our cancer saga vocabulary).  The transfusion finally began around midnight, while he slept.  I vividly remember laying in the bed with him, staring at the bag of blood - in disbelief - my heart racing, my mind in overdrive, yet I felt frozen.  How can this be happening?  Why would a 3 year old need a blood transfusion?  What is going on?

Eating with "Robot Arm"

I dozed briefly a few times throughout the night.  The next morning they gave us a misdiagnosis: Transient Erythroblastopenia of Childhood (TEC).  To paraphrase eMedicine, it's "a slowly developing anemia that occurs in early childhood (triggered by a virus) and is characterized by a gradual onset of paleness. ... all patients recover completely."  He'd had a fever a few weeks before, which they guess resulted in the cessation of the production of red blood cells.  The diagnosis fit perfectly.  They said although they saw no baby blood cells yet, he should be fine.  His marrow should start making those cells again at any time.  He was released by midday, Thursday November 18 and we were given the green light to go to Kentucky for  Thanksgiving (we were to leave Wednesday the 24th).  First Nicholas needed a follow-up blood test on Monday November 22 to see if his marrow was starting to make red blood cells again and to rule out leukemia and aplastic anemia.

Pants on the head - shirt on the legs! 
That's my silly boy. 
November 19, 201

Uh, whatever.  I didn't let that sink in.  I might have spent a couple minutes Googling leukemia and aplastic anemia, more out of curiosity than a need to know.  I didn't lose sleep - I caught up on the sleep I'd missed in the hospital.  I went out with a friend that Saturday morning, while Trevor played football outside with the kids and took them to lunch.  Then we nursed Nicholas over the weekend after he came down with a virus - vomiting, fever, coughing, etc.

As instructed, I took him in for the blood test on Monday morning.  He was still sick, so he napped that afternoon.  Thanks to a freak November tornado, I carried him down into the basement.  Trevor was stuck in the basement tunnels at work at that time, too.  Katherine and I snacked on chips and watched the news to keep up on the weather as Nicholas continued to nap.  That's when Dr. Sam called with the results of the blood test ... immature white blood cells were found, and that's not consistent with TEC.  We needed report to the hospital first thing the next morning for a bone marrow aspiration.  Pack a bag, just in case ...