Tuesday, February 26, 2008

Why Today is Better

Because mornings are always better.

Because the sun is shining.

Because we haven't been flooded. Yet.

Because Jake held his weight steady this week, even up just slightly.

Because Dr. Million, our radiation oncologist, is sure that Jake's hoarseness is caused by the radiation and not the Vincristine.

Because Dr. Million had them give Jake a treatment and a half today--making up for the one that got cut short yesterday. So we didn't lose a day.

Because, in looking at the radiation records, I realized they doubled his treatment another day after one of our misses, so as of today, Jake has completed 17 radiation sessions. Only 11 to go!

Because Jake is amazing and makes me laugh.

What could be better?

Why Last Night Was a Bad Night For Me

No reason in particular. It's not like anything really bad happened.

Some days are just harder for me than others.

Chemo day. Jake was already accessed so we didn't have to do that. His blood counts are okay but not great, everything was low. Dr. Afify doesn't like the hoarseness in his voice. She called the radiation oncologist to check if they're radiating the vocal cord area. They are, so it's likely just an effect of the radiation. But Vincristine, the drug he gets every week, could be causing muscle weakness in his vocal cords. We just wait and see.

Radiation went fine until halfway through when the machine quit. Jacob did not want to wait around an hour to have it fixed, so now we can't count yesterday.

Chris is out of town for the week.

I've had an ebbing and flowing migraine for six days.

I keep gaining weight no matter what I eat or don't eat.

I was irritated with everything and everyone last night.

Jacob went to sleep at 7:00, which always worries me.

I had flashing lights in my bedroom window until after midnight as the public works' crews pumped water off Redwood Road.

Thursday, February 21, 2008

Unusual Skills

Things I can do:

1. Sight read really, really well on the piano

2. Play the organ (but only when absolutely pressed)

3. Recite my favorite films/shows verbatim (Star Wars, Firefly/Serenity, Lord of the Rings, Pride and Prejudice)

4. Read wicked fast (between 100-120 pages an hour)

5. Speak Haitian Creole

6. Write killer English-class essays

7. Spend an entire day in a bookstore (if you don't believe me, you've never been to Powell's in Portland)

8. Talk in public/teach a lesson/entertain middle-schoolers in an assembly without getting the least bit nervous

9. Travel to foreign countries without my husband

10. Throw books at people and still manage to be friends with them after (thanks, April!)

Now, I can add one more thing to my list of not-so-common skills:

11. Give IV fluids through a port-a-cath.

The homecare nurse, Karol, came out this morning to access Jake, draw his blood, and teach me how to use the IV pump. I successfully got him hooked this morning under her watchful eyes--and tonight he's having his second round that I did all on my very own.

I'm feeling very pioneer-woman strong at the moment. Who knew I had it in me? I certainly didn't. My friend, Katie, says the great thing about trials is the things you learn to do that you never thought you'd be able to. If you'd asked me two months ago if I could give shots and hook up IV fluids, I'd have laughed myself sick.

But here we are.

Thanks, Jake, for giving me the chance to grow.

Tuesday, February 19, 2008

Two Lists


1. We did come home last night, released at 10:00 p.m. I woke Jacob up at 1:00 and 3:00 a.m. to pee.

2. Jacob had no nausea or vomiting at all this time.


1. Jacob has lost almost 3 pounds in the last week.

2. He's developed mucositis (I think that's it) inside his mouth from the radiation. It's kind of like a sunburn inside the mouth, the skin is burning and then peeling away. There are two problems with this--pain and infection. We've got to keep his mouth as clean as possible right at the time when it's the most painful.

3. We're doing IV fluids for the next five days. I'm using "we" advisedly--I don't have to receive the fluids, but I do have to administer them. Our homecare nurse is coming by tonight to teach me how. Put that on my list of things I wish I never had to learn--right up next to "give shots".

I'm trying to stay positive. After all, Jacob could be in much worse condition. I'm thankful for how well he's tolerating the treatments. His radiation oncologist called him "the iron man" today. And it's true--I'd be weeping and whining all the time by now, but Jake just gets on with it and only occasionally admits to being "a little uncomfortable".

I guess I'm just feeling the weight of lots more days of radiation and lots more weeks of chemo. I'm great in a short-term crisis, but it takes a whole other kind of strength to be in it for the long haul. I guess I'm stretching those muscles now.

Monday, February 18, 2008

Another Monday, Another Treatment

I thought I'd give you a peek into the world of inpatient chemo while we're living it.

Jacob's treatment protocol calls for two weeks in which he receives outpatient chemo followed by one overnight stay. Today is our overnighter. We didn't expect to be here until tomorrow, what with today being President's Day, but they called Friday afternoon and asked if we could come in this morning. Jacob and I stopped at McDonald's for breakfast and were admitted by 9:30.

Admission is to ICS (Immuno-compromised Service) which is where we spent our first four difficult days in January. It's on the 4th floor of the hospital, tucked away with the Infant Surgical Unit and the NICU, safely out of reach of more contagious patients. We feel almost at home now and we're always happy to meet new nurses and doctors and techs.

Admissions always start with accessing the port. Then he's pumped full of fluids until he pees to their satisfaction. Labs are also drawn to make sure his blood counts will support chemo. After four hours (on average), chemo begins. First they give Zofran to prevent nausuea and vomiting. Then they give Vincristine (which is the outpatient drug and is pushed in just a couple of minutes). Normally, this is followed by Dactinomycin, but we're skipping that drug while he's in the midst of radiation. Next is Mensa, a drug to protect his bladder from the effects of Cytoxan.

Right now, 3:30 p.m., he's in the midst of the Cytoxan. That will take an hour or two to administer. Then he'll be given more Mensa and lots more fluids to help move the drugs through his body.

We're actually hoping we might not have to stay here tonight. Because we were here earlier than normal, there's hope that, once the final mensa is given, we can go home. We'll still have to get him up every two hours at home to pee (and make sure he isn't bleeding from the Cytoxan), but Jake would much rather go through that at home than here. I must say I agree. Our fingers are crossed that all will go well and we'll wake up in our beds tomorrow morning.

How do we entertain ourselves, one might ask? Today, it's with the DVD player. First we watched Disturbia, a contemporary teen version of Rear Window. Jake got it for Valentine's Day and was anxious to have me watch it. I liked it. Especially because I watched it in daylight and not in our dark basement. For the last three hours Jake's been watching various episodes of The Supernatural, a contemporary youthful version of The X-Files.

As for me, when Jake isn't sharing his viewing with me, I've got my laptop (obviously), books, and my writing notebook. So I'm good :) Better, in fact, than Chris, who is entertaining the little ones all day. Send a kind thought his way.

Monday, February 11, 2008

"I Know How You Feel"

This is not a phrase I use often. I try to avoid it, in fact, because I think it's very rarely true.

But today, I actually had a chance to use it--and mean it.

Shortly before leaving this morning (today was radiation at 1:15 and outpatient chemo at 2:00), I got a phone call from a neighbor.

Her: "Have you heard about Jameson?"

Me: "No."

Her: "He was diagnosed with leukemia yesterday. They're at Primary Children's."

Jameson is an adorable nearly 3-year-old that lives down the street from us. He has Down Syndrome, which I learned today puts him at a higher risk for leukemia. (Interestingly enough, the same genetic mutation that puts Down Syndrome children at higher risk also makes them more likely to respond well to treatment and recover fully.) The family was happy to learn that he has ALL, which is the most treatable form of childhood leukemia. Still, it's going to be a long road--much longer than ours. After 7 months of various phases of treatment, he'll go into maintenance phase which will last . . . wait for it . . .

3 years!

Suddenly, 42 weeks seems like nothing :)

Jacob and I went by after chemo today (Jameson was in the room next to the one where Jacob spent the night two weeks ago). The first thing Cindy said to me was, "I was thinking that if anyone knows how I feel right now, it's Laura."

I wish it weren't so. I wish no mother ever had to feel like I did six weeks ago.

But hopefully, I can help her see that it gets better.

And Jacob can show Jameson that being bald isn't the worst thing in the world.

Tuesday, February 5, 2008

Blood Counts

Finally, I'm posting something just because I want to, not because something new happened.

In the spirit of passing on all the education we're getting, here's a quick lesson on blood counts as they pertain to Jacob.

CBC: complete blood count. Right now, Jacob gets a CBC twice a week--once when he gets chemo and once when a home care nurse visits our house. His port is accessed and blood drawn through that.

There are 4 numbers that we follow closely from the CBC. They are:

1. White Blood Count (WBC): white blood cells fight infection.

2. Hematocrit (Hct): red blood cells; without enough, you're anemic.

3. Platelets (Plts): help your blood clot.

4. Absolute Neutrophil Count (ANC): this is the big one. No, I'd never heard of it before, either. The ANC measures the body's ability to fight an infection, particularly a bacterial infection. This is the number which determines if Jake has little or no restrictions on where he goes, or if he needs to wear a mask in public, or if he needs to stay isolated.

Why do these numbers fall? Chemotherapy kills all fast-growing cells. Like cancer cells. Also hair follicles (this is why he's bald) and blood cells in bone marrow. His blood counts are mostly affected when he receives the once-every-3-weeks inpatient chemo treatment; the numbers bottom out between 10-14 days after that treatment and then start to rise again.

What are normal values?

WBC: 4.5-13.5
Hct: 35-45
ANC: 1.5-8

It can get confusing with the normal values, because they're referenced to the 3rd power, so, for example, ANC can be given as either 2.6 or 2600.

Transfusions are given if counts fall too far and I give Neupogen shots to Jacob after his inpatient chemo (it helps stimulate the growth of white blood cells)--those shots are given once a day until his ANC is greather than 2.0 (or 2000).

Of course, the reason we do all this is that Jacob's greatest enemy these next months isn't the cancer so much as the threat of infection. His body could easily be overwhelmed if he gets an infection without having the ability to fight it off. That's why we draw blood twice a week. That's why we end up in the ER in the middle of the night for a fever.

There now, don't you feel smarter? Oh, and FYI, Jake's counts on Friday night at the hospital showed an ANC of 3.0--perfectly normal and why they let us come home.

Saturday, February 2, 2008

And the Fun Just Keeps on Leaving . . .

(That one's for you, Neil!)

Really, truly, honestly, I've been planning for several weeks--okay, maybe days--to write up some general information sort of posts. The kinds of medications Jacob's taking, the expected chronology of his treatment protocol, the shots I give him (I'm getting much steadier), the background of blood counts and what they mean and why we watch them.

But life just keeps happening.

Jake started radiation on Thursday, and went Friday as well. Except for having to wear the uncomfortable mask, keep the bite blocker in his mouth to protect his teeth, and lie perfectly still on an extremely hard board while a machine that looks like it belongs on the Enterprise circles around him . . . There's nothing to it :)

We love the people at the Huntsman Radiation Oncology clinic. Diane is the clinical supervisor and we adore her. She has an 11-year-old son of her own and knows just how they tick. (She was also very happy to hear that she would not have to play country music for Jake during his treatment--apparently they've had a run on country fans the last few weeks.)

The treatment itself takes from 10-20 minutes, depending on the day, which means we spend far more time in the car getting there and back. Two treatments down--twenty-six to go.

Chris and I rewarded ourselves last night by planning a Buffy watching party with our dear friends, Neil and Katie. It was supposed to be at their house, on their new flat-screen, HD television. But at 7:00, Jacob was shivering and complaining of being cold. When I took his temperature, it was 100.5--not a big deal, unless you're going through chemo. A temperature between 100 and 101 means watching for the next hour or so to see if it stays elevated. So Neil and Katie came to our house (bringing all the treats--our friends are spoiling us) and I took Jake's temperature between each of the last 3 episodes of Buffy Season 5. It went down, and then it crept back up, and by 10:00 it was 101.5.

A list of what followed: phoned the on-call oncologist at Primary Children's; recited Jake's fluctuating temperatures, his most recent blood counts, and his other symptoms (none); took Jake to our local ER (Timp Regional); had his port accessed, blood drawn for both blood counts and cultures; tried to read while my eyes dropped and I kept slipping down in the very uncomfortable chair next to his bed.

We were only there two hours. His blood counts were normal (for anyone, not just for a cancer patient), his temp had fallen to 99.4 and he had no other symptoms. So they de-accessed his port and sent us home, promising to let us know if the blood cultures showed anything.

Today's he's been fine, normal temperature, no symptoms except tiredness.

So was it a waste of time going to the ER? I prefer not to think about that. Because we can't ever be sure. We can't ever be complacent. And I figure this is my punishment for rolling my eyes over the years at the fussy, overprotective, incredibly nervous mothers who jump every time their child sneezes.

Now I'm one of them :)