That Day

‘Cause that day in my life…
That day in my life…
I dreamt tomorrow had a prettier face
I dreamt tomorrow would have better things to say
– Poe, “That Day”

Jack had been ill for a few days with odd and varied symptoms that would come and go. Many of the symptoms were flu-like; however, he did not have a cough or runny nose. He seemed less dexterous with his Legos and started getting really upset about it and other small things. Something seemed off with him. After keeping him home from school for a few days, I decided it was time to figure out what exactly was going on.

I called the advice nurse at Kaiser and after describing everything Jack was going through, she couldn’t say there WASN’T something going on…she thought it was best if I spoke to a pediatrician. Unfortunately Jack’s pediatrician was out of the office and all others were booked up. We were given a telephone appointment the following morning. When the doctor called, it was basically a repeat of what happened with the nurse – could be nothing, but could be something – better come in to be sure. I got a clinic appointment set up for that afternoon.

Meanwhile, Jack seemed better than he had been in days. By early afternoon I thought about canceling the doctor visit, but David encouraged me to go ahead and go since we already had the appointment and Jack’s symptoms had been so unpredictable. So off we went! I felt silly taking Jack in when he seemed mostly fine. He was probably just fighting off a cold! I was totally going to be dubbed one of “those” moms who takes their kid in for nothing! They would know how paranoid I am!

The exam went fine and the doctor basically said, hey, it’s not the flu. He’s probably just low on iron. Go get some liquid stuff from the drug store. He turned to leave the room and then looked back at Jack, considering…”Does he look pale to you?” And I said yes, definitely, and he has circles under his eyes. The doc then asked, “Well, do you want to do a blood test just to confirm the anemia? It will only take about 5 minutes.” Sure, I said. I didn’t want to have to come back in a few days if Jack still had this weird bug. I also didn’t want to have to buy vitamins if Jack didn’t need them.

Much to my surprise, Jack didn’t get a finger prick like I did when they tested my hematocrit during pregnancy. Instead, several vials of blood were taken in the Lab. I thought it was strange, but didn’t really question it. I didn’t know how things were done with kids, after all. Jack’s always been fairly healthy. (Btw, Jack was so traumatized by the blood draw! Yikes!)

Home we went, and I tried not to worry any more that night. The doctor had even told me I could send Jack to school the next day. Alrighty then.

The next morning the lab results were available online before I got out of bed. What I saw was the following:

 

Component Your result Standard range Units
Band’s %, manual count 1 0 – 5 %
Neutrophils %. Manual count 7 16 – 60 %
Lymphocytes % manual count 26 20 – 70 %
Monos %, man cnt 1 0 – 7 %
RBC’s, morphology NORMAL
Platelets,bld,ql, man ct DECREASE
WBC other/100 WBC, blood 65 < 0 – %

 

Component Your result Standard range Units
WBC COUNT 13.4 5.0 – 15.5 K/uL
Red blood cells count 3.78 4.00 – 5.20 M/uL
Hgb 10.1 11.5 – 13.5 g/dL
Hematocrit 30.6 34.0 – 40.0 %
MCV 81 75 – 87 fL
RDW, RBC 13.1 12.0 – 16.5 %
Platelets count 110 140 – 400 K/uL

Okay, so, hm…uh low neutrophils? What are neutrophils?

Decreased platelets? What the heck does that mean? And what the heck is WBC Other?? Does he have alien blood after all? He’s been trying to tell me all this time!

Well, maybe that is just what happens when someone has low iron or is fighting something off? His white blood cells are at the higher end. And what do red blood cells do again? That’s probably not good that those are low… Okay, lemme go look at the iron test…

Component Your result Standard range Units
Iron 97 50 – 120 ug/dL
Iron binding capacity, unsaturated 192 100 – 315 ug/dL
Total iron binding capacity 289 236 – 404 ug/dL
Transferrin % saturation 34 15 – 60 %

Well, then…his iron looks great! Yay!

But…uh…what does that mean for that other stuff then? What does it meeeaaaannnn???

So, I started googling. And I’m sure you could guess what kind of results I got – Dr. Google said it could be anything from a staph infection to Lupus OR CANCER. I shut my laptop and headed to the phone – I needed to talk to a doctor ASAP.

The doctor wasn’t in yet! To be safe, I decided to keep Jack home from school after all. I couldn’t decide about going to work but while I was deliberating, the doctor called me back. He told me that Jack was anemic, but not due to low iron. He wasn’t quite sure what was going on, so he had to call a specialist. He said he’d call me back.

Okay, well! No way was I going to work! I decided to work from home. Something was weird here! I sent a message off to my boss and then asked David if he’d be able to drive us to the hospital if necessary. He looked at me with a bit of alarm and said, yes, of course. I promptly took an ativan and waited for the doctor to call back.

I didn’t have to wait long, thankfully. The doctor told me that the specialist wanted to admit Jack for monitoring – probably overnight – so he needed to go to Oakland Pediatrics. That’s where the specialists were located. “And I’ll be watching Jack’s case and here’s my direct extension in case you have any more questions…good luck.”

Oh shit. Oh shit. This doesn’t happen! Doctors from big HMOs don’t give you their direct extensions! SHIT SHIT SHIT! Something is very wrong!

I hung up and buried my head in David’s chest to cry for a few minutes. What is wrong with my baby??

I then steeled myself to get Jack dressed and out the door without alarming him. I packed snacks and we headed out the door. We dropped our dog at doggie daycare along the way just to be safe – we had no idea how long we’d be over in Oakland – before heading out of San Francisco.

Upon our arrival at Kaiser in Oakland, two strange things happened. First, the admitting nurse commented, “Oh good! You have really GREAT coverage!” Uhhhh, okay. I’d never had anyone say anything like that before. Wasn’t it all the same? (Apparently not.)

The second thing was that the nurse printed out a special bright RED card with Jack’s medical information on it. I still have no idea what it means to get this red card (I never thought to ask) but I immediately thought that card was BAD NEWS.

Things are kind of a blur from there – stats, vitals, etc. were taken. A million doctors and nurses and interns I think everyone except us knew what was going on with Jack – they just didn’t want to tell us until it was 100% confirmed. They did say the his blood test had caused some alarm because it appeared he had some odd cells and that could mean either they screwed up the test or he might have leukemia. They wanted to redo the blood test.

At the end of that day, I was really hoping for Lyme Disease or Lupus (as Dr. House repeated in my head over and over, “It’s never Lupus.”). My friend Becky said she was on Team Mono (she’s always on Dr. House’s side!). Hell, that would be okay, too, though! Just please, not cancer. Please, something easier than that.

The next day, cancer (Acute Lymphoblastic Leukemia) was confirmed.

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Comments

  1. Ugh. My heart breaks for you. What an awful experience for you to have to go through. 🙁
    HUGS!! Keep hanging in there!

  2. dear friend, thanks for sharing that story with us. we were following along from the side lines but it was helpful to hear the whole story, and now you can point people back to it who wanna ask questions.. I know that wasn’t easy to write out.. but hopefully it will be part of your healing to tell it. just to make you feel better?! the red kaiser card i believe is for every person who is admitted to the hospital. I got one when I was admitted for labor I think , I can’t remember if it was labor or something that happened pre-labor that I had to be admitted overnight. anyway, I think that is what it is for. BIG HUG to you during this processing/grieving/thinking/remembering.

  3. Oh Crystal! It makes me so sad to think of you all going through this! My thoughts and prayers are with you and little Jack!

  4. Oh my… even though I chatted with you through most of that day before his appointment, it still just takes my breath away. Love you, girl.

  5. My thoughts are with you all right now. <3

  6. I’m appalled it took them a day to diagnose you. We are in Kaiser San Diego and my son was diagnosed same day, i don’t even think we were in the room for 20 minutes before the oncologist walked in, tho it did take 4 days to find out the extent of the leukemia. It must have been a nightmare for you just waiting.

Trackbacks

  1. […] a week into the new year, we were sent to the hospital with Jack and handed the diagnosis of Leukemia. I kid you not – just days before this I had been talking to my friend Becky about child loss […]

  2. […] night, for the first time since the days leading up to his Leukemia diagnosis back in January, Jack had a night terror. If you haven’t experienced these before, consider yourself lucky! […]

  3. […] years ago I woke up to confusing blood test results that Google told me could be very scary. A call to the pediatrician didn’t relieve my fears, […]

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