Thu, 22 Jan 2004

Diagnosis
Nana and Papa came over to watch AJ in the morning.  We had to get up to the hospital at a reasonably early time.  We drove the truck, which was kind of a mistake.  The parking garage at the children's hospital really doesn't accomodate big vehicles very well.

We went to clinic D, which is the oncology and hematology clinic.  We checked in, and they took Nate to get vitals (temperature, blood pressure, height, weight).  Then they put some lidocaine solution on the backs of both hands, and on his lower back, where the bone marrow sample would be taken from.  Then they sent us into room 2, where we waited a bit.  Some nurses came in, and it seemed they wanted to get started  placing an IV.  We hadn't even seen the doctor yet.  The nurses had orders to take a bone marrow sample from Nate, so that's why they wanted to prepare him.  When they figured out that we hadn't even talked to the doctor yet, they slowed down, and found the doctor.  

Dr. Marina came in and met us.  She's very competent, and tries to keep a bit of levity in the conversation.  Pretty much the first thing she said was that after looking over Nate's bloodwork from the prior day, she's going with a working assumption that he has leukemia.  This was quite a blow for Christa and I.  Nobody so far had said they thought he might have cancer.  We feared that, and had done some reading on it the night before, but here it was right out in front of us now.  As Christa says, it's a good thing she told us with Nate in the room, because it sort of inspires you to stand strong.

The doctor explained that they would use a procedure called bone marrow aspiration to take a sample of his marrow, so that it could be analyzed.  They would put an IV in him, sedate him to make him sleepy, give a local anesthetic in the tissue of his lower back, upper bottom, where the needle would go through to the back of the pelvic bone.  Apparently that's one of the easiest places to take a sample.

She explained that within a couple hours after the sample, she would be able to diagnose if it was leukemia.  There are different types of leukemia, so if it was, then more time would be needed to identify specifically which type it is.

Following the discussion, the nurses came to install the first IV of Nate's life.  It was not a pleasant experience.  I had to hold him in my lap, and help hold his arms.  One nurse helped hold his hand, while the other nurse tried the vein in the back of his hand.  That poke was unsucessful.  They then tried the vein on the back of the same hand, closer to the thumb.  That was a successful stick.  Nate was able to finally calm down after they had taped up the IV.  

We went to the procedure room, just down the hall.  It's a small room, with two beds in it.  They have a TV with a VCR in there, and a cabinet with a bunch of kids videos.  This is a great thing.  We put on a video.  The PNP (Pediatric Nurse Practitioner) that is caring for Nate came and administered a sedative into Nate's IV.  Then we waited.  The idea was for him to get sleepy.  After a bit, he did become sleepy.  However, he never fell asleep.  Anytime anyone moved around him, he kept asking if he was gonna get a prick now.  When the time came, we rolled him over on the table.  Nate kept trying to turn and look behind him, asking "Am I gonna get a prick now?"  The nurses had all assured him, multiple times, that they would tell him when they were going to do something.  They would never surprise him.  So, after they peeled the tegaderm patch off his backside that had the lidocaine cream to numb the skin, and cleaned the site, they told him they were going to start.  I held his shoulders and head down, and a nurse held his feet.  They injected a local anesthetic to help numb the tissue.  Then, they used the large needle (looks like a stainless steel tube) and inserted that into the back of the pelvic bone.  The doctor had explained that they can numb the tissue, but they can't numb the bone.  It didn't look pleasant, and from his crying I'm sure it didn't feel good.  They took a bunch of vials of marrow, which pretty much just looks like blood.  When they were done they pulled out the big needle, and put a bandage on the site.  

Nate rested afterwards, half sleeping, half watching his movie.  The rest of the day is sort of a blur in my memory now.  We met sometime in the afternoon with Dr. Marina, where she informed us that Nate has ALL, or acute lymphoblastic leukemia.  She told us that it would be a couple of more hours before they determined whether it was of the B-cell variety or the T-cell type.  We were definately hoping for the b-cell type, as it's easier to treat.  Apparently the T-cell type likes to move to the spinal fluid, or something like that.  And, it would require radiation treatments to the cranium, or something.  It sure didn't sound good.

Later, we were moved to the day hospital, which is next door to the clinic.  Nate was on hydration, and they wanted to transfuse him.  It was getting late by this point.  The nurse started the transfusion.  About 15 minutes into his transfusion, his temperature had raised by 1 degree C, so they stopped the transfusion.  Two main reasons could be either infection, or a transfusion reaction.  To rule out infection, they needed to do a blood culture from a clean site... that meant another needle stick for Nate.  Poor guy, it had been such a long day, and I had to hold him for yet another "prick", as he calls them.  No infection was determined, so it was ruled a transfusion reaction.  The solution... pre-medicate him next time with Tylenol.  So the transfusion was called off, and we would need to do one the next day.

The doctor found us at some point to give us the good news that the leukemia was of the B-cell variety.  We were dealt a bad hand, but at least there's a good card or two in there.  She explained that sometime during the next several weeks, Nate would be classified as high risk, normal risk or low risk, according to a number of criteria.  This would help determine what his treatment will be over the subsequent months.

We were wiped by the end of this day.  The stress of everything was just overwhelming.  The drive home was so long.  What can you say to each other as your 4 year old boy is sleeping in his car-seat, and you've just learned today that he has cancer?  As I lay Nate into his bed, he rubbed his backside and asked me why he was sore back there.  Apparently the sedative really does make him forget.  For that I'm very thankful.  Late this evening, after everyone was gone and Nate and Andrew were sleeping, we sent an email message out to some friends and family.  If you didn't get the email, please forgive us.  It was the end of the single longest day of our lives.  Here is that
message.
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©2007 Greg Doane