Monday, March 31, 2008

Another Admit

Jake's up at Primary Children's today and tonight. It's his first full-drug cycle since January (they omitted the Dactinomycin while he was doing radiation.) We're crossing our fingers waiting to see if adding that back in makes him nauseated. He's enjoyed not having that the last two admits.

Chris is with him today. Tonight I'll drive up and we'll switch so Chris can go to work tomorrow. Jake and I should be home by noon if all goes well.

Hmm, this is an awfully boring entry. I feel the need to be funny. I know--how about The Post of Why?

Why does a 14-year-old go from smiling to scowling in seconds?

Why do nostalgia foods from my childhood never taste as good when I make them?

Why does laundry never end?

Why do The Cookie Bakers of the Night cook at night? And why do their cookies run away?

Why does it take a week or more to lose a pound and only 15 minutes to gain one?

Why is there snow on the ground outside my window?

Why don't children come with instruction manuals?

Why haven't I written anything but blog posts since I returned from Left Coast Crime?

Why am I happier today than I was yesterday when my life is still the same?

Friday, March 28, 2008

And Also . . .

I do not have strep.

I came out of the doctor's office after a rapid culture disease-free.

And then I hit someone in the parking lot.

Okay, I didn't hit the person directly, thank goodness. Just the back of their bumper. We were both pulling out at the same time from opposite directions and I never saw the little black car. Fortunately, the damage was greater to my bumper than to his. Even more fortunately, the man was very, very nice. Or maybe I just looked very, very pathetic. Either way, he seemed much more concerned about my emotional condition than his bumper. I gave him my phone number, but he wouldn't bother with insurance information. I drove away shaking and then burst into tears.

Yes, full-throated sobs over a car bumper.

I think that's known as "absolutely-the-last-straw-that-my-back-can-handle".

I'm better now, both physically and emotionally.

The bumper is still crunched.

Thursday, March 27, 2008

Totally Random

Trying to catch up. It will have to be in short and often incomplete sentences.

1. Jacob is off the pain meds. He's eating (up a little more than 2 pounds this week) and he's going to school. Most days. Whenever he wakes up. It'll be a little longer before I feel good about forcing him out of bed early to catch the bus.

2. He got a 3/4 dose of Vincristine this last Monday in clinic. His hands and feet weren't any better after the adjustment of the last 3 weeks, but they also weren't worse. I'm watching him closely this week to see if there are changes. Yesterday, he did drop a few things. Hard to know if that's neuropathy or just being 11.

3. Washington D.C. is on! (Barring any last minute problems.) Last fall we set up a week-long trip to D.C. for the whole family this June. We've been holding off deciding what to do about it until we were through radiation. Jake would have chemo on Monday, June 9--be in D.C. from June 10-17--then have chemo again on Wednesday, June 18. The doctor said that's not a problem and they want us to be as normal as possible. So here we come, East Coast!

4. Also Klamath Falls. The kids have a week off for Spring Break starting April 14. Jake will have chemo that Monday and then we'll leave Tuesday to drive to southern Oregon to visit family. I found us a great deal on a 2-bedroom condo at the Running Y ranch resort on Klamath Lake, so we're really looking forward to our trip.

5. How do you cope? is a question I'm asked a lot. My answer? Each family copes according to their own personality type. (Yes, I believe each family has its own personality as a unit.) Ours is matter-of-fact, honest about risks without dwelling on them, and the littlest bit (okay, maybe the largest bit) humorous and even, (gasp!) sarcastic.

Example? When Chris asked Jake what Dr. Million said on Tuesday (after meeting her to see how the side effects were resolving), Jake said without skipping a beat, "That I'm going to die."

And Chris didn't bat an eyelash. It's just the way our family works.

(For the record, what Dr. Million actually said was, "You're an amazing kid. Can I see you back this summer?")

Wednesday, March 19, 2008

It Must Be a Good Day Somewhere

I borrowed that from a friend's post today.

Actually, it's a good day right here.

Sun shining? Check.

Jacob eating? Check.

No more pain meds? Check.

I have my voice back? Check.

I know that Jake is feeling better when I have to fight him to do his physical therapy exercises. Whenever an 11-year-old has the energy to roll his eyes, he's feeling okay :)

He's also back above 90 pounds, sleeping well, and making it outside with his friends in the daylight. Such normal, happy things.

So now that he's finished with radiation, what's next? Well, the weekly chemo continues until October. He had a half dose of Vincristine in clinic Monday while we watch the neuropathy in his hands and feet. He has chemo in clinic next Monday and then we'll meet with Dr. Million, the radiation oncologist, on Tuesday so she can see how the side effects are resolving. His next chemo admission will be March 31. And sometime in April he'll have his first set of scans since treatment began.

That will be an exciting/nerve-wracking week as we wait to see how well the tumor has responded to what we've thrown at it. I keep reminding myself of a statistical fact I've learned--that the amount of tumor shrinkage in the first three months is not indicative of cure rate. But it sure couldn't hurt our morale any!

Hope this is a happy Easter week for all. We're looking forward to family, food, Easter baskets, and church. Everything is a little sweeter this year.

Sunday, March 16, 2008

Better and Worse



Jacob is finished with radiation. Let the wild rumpus start!

Apparently, my body has been waiting for that moment to collapse. Within two hours of his last radiation, I started running a fever and got a severe sore throat. (Not nearly as severe as Jake's, of course, but noticeable.) And it's not going away quickly, either. Apart from trying not breathe on Jake when I give him pain meds or start his fluids, I've had to have help in getting him a few places.

Friday morning early he had to be at Primary Children's to see the eye doctor. My parents took him up and happily reported that Jake's vision is still 20/20 in each eye--no apparent damage done to his left eye after 28 rounds of radiation. A minor blessing, perhaps, but one we're very grateful for.

Tomorrow he has chemo at 11:30 in clinic. I'm going to have to deputize that visit as well. I'm afraid I might have strep throat (or, even worse, a return of mono after my initial illness 18 months ago). The last place in the world someone with an infectious illness should be is the Hem/Onc clinic, full of immune suppressed children. So instead of going to Jake's appointment, I'll be making one of my own. Imagine that--other people might need doctors through this time.

I also want to say thank you to all of you who follow this blog and are praying for Jacob. It really is the best help we have. I know I don't have the strength to do this alone--fortunately, I don't have to. Thanks to our family, to our friends, to friends of friends who find us in roundabout ways, and to all the kind people who take a moment to think of Jacob and wish him well. I'm normally obsessive about making personal thank you's, but that's one of those traits that has been shoved aside this last month. I hope to return to it as we settle back into a weekly, rather than a daily, schedule of treatments--but I want you all to know how much your kindness and love is helping.

God bless you everyone.

Oh, and Jacob is doing better with each day. He's been able to eat at least a little since Friday and today he's begging me to let him make crepes. He's still taking pain meds, but not as frequently and not as high a dose. We can see the light at the end of the tunnel and it's beautiful.

Tuesday, March 11, 2008

Home Again

Whew. That was a long night.

Jake's fever never completely left while we were in the hospital (thought it's normal now), but the cultures didn't show anything and it did go down slightly so they started chemo just after midnight. That meant his last dose of Mesna was given at 6:30 this morning. They let us hang around until it was time to go to Huntsman for radiation. (#27--only one more to go!) Now we're home and Jake is sleeping.

He's still in pain. I'm giving him the painkiller every 4-5 hours. It doesn't take away the pain, but it makes it manageable. Chris is going to bring home a Slurpee for him tonight to see if he can swallow that. Yesterday, he weighed 92 pounds, down from his normal of 100. They're not panicked, but they are concerned. I imagine there's a chance we'll be doing TPN (IV nutrition given through his port) this next week. We'll know after we see Dr. Million tomorrow.

But the good news is that radiation will be finished tomorrow. It will take 1-2 weeks for the pain to fade away, but I'm so grateful we made it so far before this happened. I'd been afraid of weeks of him not eating, so coming at the end like this is bearable.

But my mother heart is anxious to see him be himself again. There was a marked change in his condition during the four days I was in Denver. I won't rest easy until it starts to reverse.

Praying for his pain levels and the ability to swallow would be a good thing right about now. Thanks :)

Monday, March 10, 2008

Could You Love Me Less?

So here Jake and I are at Primary Children's for chemo. Earlier we watched the end of EVAN ALMIGHTY, the film with Steve Carrell. As his problems mount up (his beard is growing uncontrollably, animals are arriving in pairs, and God wants him to build an ark in his suburban neighborhood), he looks up into the night sky and says, "I know, I know, everything you do is because you love me."

At that moment, the sprinklers come on and soak him. At which point he looks up again and and says, "Could you maybe love me less?"

Welcome to Jacob's day.

We were admitted to ICS at 2:00 p.m. after his radiation session (#26!). It's nearly 10:00 p.m. and we haven't started chemo. They started fluids, gave Jake a new painkiller to deal with the severe problems he's had swallowing the last few days, and we seemed to be settling in as normal. Then Jake started running a fever. So now they've drawn blood to culture and started an IV antibiotic. Chemo is on hold until they decide if he's got an infection.

Good thing I've got my books, my iPod, and my laptop. God seems to love us an awful lot right now :)

Tuesday, March 4, 2008

#8 and #9

8. Topical steroid cream: over the counter, to put on the skin around his eye that's getting quite red and sensitive from the radiation.

9. Neosporin with Lidocaine: to put on Q-tips and use inside his nose, which is getting fissures from his constant blowing. (Let's face it, there's a lot of junk coming out of his sinuses these days.)

Oh, wait! I thought of #10 . . .

10. Sick siblings: Matt and Emma both stayed home from school today with fevers and sore throats. Jacob decided to quarantine himself at Grandma and Grandpa Sudweeks' new house. You know, the one with the big screen TV. I think it's very noble of him :)

And if there's a #11--I hope it waits until I'm in Denver for the weekend. Let Chris have a turn :)

Monday, March 3, 2008

If It's Not One Thing . . .

It's ten others.

Okay, that might be a slight exaggeration.

But you know, you'd think having cancer would be enough to be getting on with. Chemo, radiation, that's what you need to kill it, right? That makes (math is not my strong suit) exactly two things to think about. Or four, if you want to count each chemo drug of our protocol separately. And all that stuff is done in hospitals, under medical supervision, so I shouldn't have to worry about anything but driving Jake to his appointments.

Yeah, right.

Let's count the things done at home this week.

1. Septra: taken twice a day on Mondays and Tuesdays. It's an antibiotic to prevent pneumocystis, a tricky infection that preys on the immune compromised. It's so hard to treat that they want to make sure he doesn't get it in the first place.

2. Diflucan: another antibiotic, prescribed by Dr. Million on Tuesday to treat thrush, a yeast infection in his mouth. It's a side effect of the radiation. Antibiotics for 10 days should help.

3. Miralax: a laxative. Vincristine is hard on lots of body parts.

4. IV fluids: once a day, Thursday through Sunday. To keep him hydrated while his body is weakening from the cumulative effects of more than a month of radiation.

5. Neupogen: to help his white blood cells rebound quicker after inpatient chemo. An injection in the arm (given by me) once a day until his counts have come up.

6. Food, food, and more food. Whatever Jacob wants, whenever he wants it. Anything that might tempt him to eat in spite of the fact that he can't taste much--anything to keep his weight from falling further.

So that's only six. Not bad, considering what he could be taking (pain meds, for one thing). But today we added one more thing to worry about:

7. Neuropathy: weakening of the muscles in the hands and feet due to the Vincristine that he gets weekly. It's one of the most serious side effects of the Vincristine and one we were hoping to avoid. But no--here we are only 8 weeks into our 42 weeks and the doctor was concerned enough today to skip our weekly dose. Jake was glad not to get chemo today, but instead he met with a physical therapist and came home with a bunch of exercises to strengthen his hands and feet.

It's not a huge deal, except that it feels like it. Part of me worries that skipping the Vincristine this early will give the tumor a chance to come charging back. Part of me thinks it's just not fair to have to worry about one more thing at this point.

But worries come with the territory and I've never been under the illusion that life is fair. Life just is, and this is ours right now.

It reminded me of something an oncologist told Jake in the second week of his treatment: "If it were just about killing cancer, we could do that in a heartbeat--just give you a large dose of arsenic. But as that would kill the rest of you . . . well, we just have to find the balance between killing the cancer and keeping the rest of you alive."

Now we're starting to feel the difficulties of that balance. I'm just grateful every day that our difficulties are so minor. And that Jake takes everything so well.

I wonder where he learned that?