Monday, June 30, 2008

A Request

Jacob has a favor to ask of everyone who loves him, who likes him, or even merely tolerates him :)

He knows you love him and worry about him. He knows you want to know how he's doing. He knows that every time someone says, "How are you feeling?" or "How's the treatment going?" or even "Hey! Your hair's starting to grow in!" that it's a gesture of your love and concern.

But here's the thing: He just wants to be Jake. He wants to be 12 and talk about what 12 year old boys talk about. He can't do much about the fact that he has cancer. But he doesn't want to talk about it all the time. And when he gets asked for the seventeenth time in an hour "How are you feeling?" he'd really like to scream.

He won't. Probably.

But to be on the safe side, try asking him "What did you do last weekend?" (Answer: Saw Angels and Airwaves at the Utah State Fairpark.) Or "What are your plans for today?" (Answer: Clean bedroom and watch the 100 Best Songs of the 90s on VH1.) Or just merely say "Hi. Glad to see you."

I know this puts a burden on all of you. Believe me, when I promised Jake last week that I wouldn't ask him how he's feeling, I didn't realize how many times a day I did it until I had to stop myself.

But Jake's burden is the big one here, and the one that matters the most to me. Whatever will help him bear it, I'll ask. So I'm asking.

But I am allowed to tell you all how he's doing on the blog, so here goes:

Inpatient went well last week. No nausea and no middle of the night queries about garbage bags.
We've just started our 6 week clinic break, which means no weekly visits between inpatient admits. So instead of driving to Salt Lake today, he just had to have a blood draw at home.

Our travel documents for the cruise arrived. We're all very excited. Only 26 days to go!

Jake saw the eye doctor at Primary's for a follow-up ten days ago. Still 20/20 vision--can't get any better than that.

And Jake and I have agreed that Seattle summers beat Utah ones hands down. The two of us were not cut out for the heat. We want clouds and 75 degrees.

But I guess we don't always get what we want :)

Saturday, June 21, 2008

Odds and Ends

1. Chris has the magic touch where time management is concerned. He took Jake to his clinic appointment Monday and it was the fastest on record. They were out of there in 40 minutes and that included accessing Jake, drawing his blood, and giving him a full dose of Vincristine. How come that never happens when I'm around?

2. The reason I wasn't in clinic on Monday was because I drove Emma and Spencer to Camp Hobe that morning. Camp Hobe is a camp for kids with cancer and their siblings. This week was for those ages 6-12, so off we went to introduce Emma and Spencer to the concept of camping. (It's not like it's gonna happen anywhere else--at least not in our household!) I picked them up Friday afternoon. Judging by the amount of dirt engrained on them and their clothes and the non-stop high-volume chatter during the ride home, I'd say it was a smashing success.

If you want to take a look at Camp Hobe and its mission, here's the link:

3. Jake is inpatient today and tomorrow (that's Monday and Tuesday, ignore the part above where it claims to be Saturday, I got distracted in the middle of this post). I'll drive up later to spend the night and let Chris come home. Jake doesn't waste any time settling in these days--he just goes straight for the DVDs and "How long until I get out of here?" demands. Can't say that I blame him.

4. It's hot. I am grumpy about it.

5. On our summer vacation countdown, it's 3 weeks finished, 8 to go. School starts again on August 18.

6. And on a slightly more fun countdown (for the kids' sake, I'm perfectly happy counting down to school starting), 5 weeks from today we'll be somewhere in the Caribbean Sea doing nothing but eating and sleeping and generally relaxing.

I think I can make it that long.

Friday, June 13, 2008

Another First

Today was a long day.

At Monday's clinic visit, Jake's hematocrit count was quite low--26.5 (the normal low is 35.0)

They told us if it fell to 24 they would transfuse. He had a blood draw last night and before 9:00 this morning I got the phone call that the hematocrit level was 21.6--so off to Primary Children's we went.

We were told in the beginning that Jake would almost certainly need transfusions of some sort during this year. We're grateful to have gone this far without. And it wasn't so bad . . . except for the aforementioned long day part.

The Hematology/Oncology Clinic reserves Fridays for emergent cases, so it was nice and uncrowded. They accessed his port, drew his blood, and then we began waiting. It took two hours for the lab to type and crossmatch his blood. We picked a comfy spot in the Infusion Room (a large room with lots of recliners and rocking chairs) and settled in with the first season of Survivor.

The transfusion itself took several hours. He was given two (hmmm, somethings, liters? let's just call it bags) of packed red blood cells. I asked how they get just the red blood cells. The nurse said they spin it. But she didn't know anything more technical. I said that was fine as anything more technical would be beyond me. They infused very slowly for the first hour to make sure Jake didn't have a reaction of any kind. He didn't, so they turned up the rate--it was nice to see the infusion time go from 4 hours to 1 hour.

By the time all was said and done, we'd been in clinic for 6 1/2 hours, getting out just in time for rush hour traffic. Did I mention it was a long day?

For the record, we did not donate the blood Jake used. Jacob is A negative; Chris and I are both A positive. That means Jake could give us his blood, but we can't return the favor. I find myself feeling very kindly tonight to all the A negative donors out there tonight. Thank you, whoever you are.

Now we hope those red blood cells will put some color in his cheeks and some energy in his days.

Tuesday, June 3, 2008


Even less sleep than I predicted. But it was a comfy couch :)

Good news: no fevers this time around, so no waiting while blood cultures are done. Also no throwing up, something we're always in favor of.

Bad news: Jake had an interesting reaction to the Benadryl/Phenergan combination that they give with the Zofran for nausea. He's had this combo at least half a dozen times without any side effects except fatigue, but last night it messed with his mind a bit. Around 1:00 a.m. when the nurse came into check vitals, Jake was not fully with us. Fair enough, it was the middle of the night, but he was also restless and agitated in his sleeping. And when he sat straight up in bed and asked me if I'd taken care of garbage bags and the internet . . . The nurse decided a round of Ativan was in order to calm his agitation. He dropped off to a much calmer sleep within fifteen minutes of the Ativan.

I never got to the point of real worry, which left me free to appreciate the humor of the situation. Jake remembers none of it (When asked what he does remember of the night, he said, "Sleeping") and he's half-convinced I'm making it up about the garbage bags.

When I laughed about it, he said, "You just love laughing at my pain."

"Are you in pain?" I asked.


"Then, yep, I'm gonna laugh."

What else am I supposed to do with an hour of sleep?

(Oh, and he's fine, by the way. Sleeping soundly upstairs, no nausea, just worn out. Going to try and tempt him with McDonald's for dinner.)

Monday, June 2, 2008

First Summer Admit

Jake and I are becoming quite the ICS snobs.

You see, we learned something important last admission--not every ICS room is created equal.

ICS is divided into four pods--A, B, C, and D--in the shape of an X. The charge nurse's desk sits in the center of the X and each pod has it's own nurses' desks and patient rooms. Each room has a bed, a lot of equipment, a TV cabinet, a mobile table/desk, a couple chairs (one of which makes a supposed bed at night), and a bathroom. They're efficient but a little cramped, especially when an IV pole has to be maneuvered to the bathroom in the middle of the night.

Until last admit, we'd only been on B and C pods and had seen no difference except the orientation of the beds. But last time we were assigned an A pod room and our eyes were opened. For starters, the rooms are considerably bigger--big enough to not have to shove all the furniture against the walls when you want to walk to the bathroom. (And speaking of bathrooms, it was at least twice the size of the ones we'd seen before.)

Today, I found out that even A pod rooms can be subdivided and this time we have hit the jackpot, at least as far as I'm concerned. Instead of a chair that pulls out at night, I have an actual couch. A whole couch! And the back flips down to widen at night so I might actually be able to turn over without having to sit up first.

This might be a first--a night in the hospital with actual sleep involved.

Or not--after all, there's still chemo and fluids and vitals checks and beeping IV stands . . .

But at least I'll be more comfortable while I'm not sleeping.