Back Where We Began

Alec’s been in the hospital since Sunday.  He mostly feels fine, and his cancer is still in remission, but he’s just finished another stage of his chemotherapy, and its typically a time that his blood counts are low.

The issue is his absolute neutrophil count (ANC), which is a measure of how well he can fight off an infection has been at zero since last Friday and on Saturday he started to develop a low-grade fever.  Our guidelines say to call in with a fever above 101 or a low-grade fever that lasts longer than 12 hours.  By Saturday night, his fever did not register and Sunday morning the same thing.  About midday Sunday he started to get lethargic and his fever returned, right around 99.  I took a nap, and when I got up, Laura said I should call the doctor.  I called, and the doctor said to bring him to the ER in Grand Rapids and to pack a bag in case he would be admitted.  I wasn’t sure he needed it at first, but his affect started to decline on the way down: his lips were dry and he could barely speak and was getting dehydrated.  At first, they said it would be 24 hours, and then 48, but it’s four days later and we’re still here.

He’s feeling pretty healthy and eating and playing, but his count has not started to rise yet.  They are giving him antibiotics a couple times a day along with “recombinant granulocyte-colony stimulating factor” (I have a lot of time to Google things!) which stimulates his bone marrow to produce white blood cells.  His white blood cell count started to go up today, but not high enough to make his ANC detectable. We could go home as early as tomorrow, but I’ve heard that before . . .

Anyway, here’s a post I had mostly done but didn’t publish that covers the week before.

Expecting The Unexpected (July 29)

The last month has been full of changes.  Alec’s generally been doing well, but the treatments are changing constantly and we’re never quite able to get a routine down.  A supposed “short” day at the clinic ends up being eight hours, and we’ve gone in expecting a super long day and then end up coming home after an hour.  One thing that doesn’t change is the post-clinic Toys R Us trip.

On Friday, we were expecting a short clinic day and even got to sleep in, not having to get there until 11:30.  He was supposed to have only blood tests, a quick I.V. chemo, and then two leg injections.  His blood levels all came back low, so they started him on a platelets transfusion. About a half hour after the transfusion, his cheeks started to flush and he started clearing his throat.  Allergic reactions are a risk with blood products, so the nurse and I looked him over and saw he was starting to get hives under his chin.

They gave him a Benadryl push, but within a few minutes he had hives everywhere, so they gave him a steroid push.   We moved him from the infusion area to a private room so he could lie down.  The steroids did the trick and his reaction stopped. Even though it looked terrible, his oxygen level and blood pressure were not affected.  He didn’t feel all that bad either, he just got kind of spacey and tired. We had to wait around to make sure the reaction stopped, and we never did get to have the injections.

At the fair!

At the fair!

The other strange event this month was an onset of nausea.  He had a two-week break in the chemo, which coincided with a great trip we made to see Peter Pan at the Ramsdell Theater in Manistee, which he loved, and a trip to the county fair. We also spent a lot of time at the city pool and School Section Lake.  Oddly, though, without the chemo, he developed some regular nausea.  It started at the end of a clinic day when they flushed out his port and he suddenly retched.  (People with a port say they can taste whatever is going in there.)  After that, he spent a couple weeks feeling nauseous every afternoon and having a twitchy stomach.  He had to eat dinner by himself because the sight of someone eating broccoli would set him off.  And the nausea went away when we started chemo back up again.

Right now we’re back in steroid land from yesterday’s injection, he’s been eating all day, which is good, because his weight had gone down a bit.  Unfortunately, we have to go back again Monday for red blood cells and the injections we missed before.  Both of those have risk of reaction, so they will pre-medicate this time.  Because we have to wait for reactions, it will also be a long day.  Or maybe not.  We never know for sure.


10 thoughts on “Back Where We Began

  1. Hey Jon, a source that I use that usually returns a bit more reliable results sooner than Google is MedlinePlus ( which is run by the National Institutes for Health. is also a great site since they cleaned it up a few years ago. I hope they are able to take care of the neutropenia quickly for you guys! We’ll keep you in our thoughts.

  2. Hi Jon,
    So much for your little Alec to go through as we’ll as you and Laura. We keep thinking positive thoughts for you all. It sounds like you are still at the hospital but if that is where it is best for Alec it is better you are there. Hoping things start to turn around soon.
    Love, Mom

      • Have been wondering all day if you got home yet, sorry that you guys are still there, but that is where you need to be. I’m sure you are both getting a little bored and tired of the same four walls. Did you find the web site that has the panda bear cubs on it? It has been on the news as one of the most entertaining for kids! Wish we were closer to give you a break. Appreciate the update on your blogs. Helps to understand what is taking place. Keeping my fingers crossed for a trip home for you both tomorrow. ❤ 2 U.

  3. I’ve been thinking of you and your family lately. I’ve missed your blogging and was hoping your absence wasn’t because of anything bad. It’s good to hear that Alec’s doing well, all things considered.

  4. Pingback: Taking the A Train, Part I | Attention Deficit Whatever

  5. Pingback: Black Friday (And No Shopping) | Alec's Progress

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s