Thursday, December 25, 2008

Bittersweet Christmas Day

First thing this morning, I patted Jacob's cheeks, celebrating the fact that they are the same size--not like last Christmas morning, when he was lopsided and I was worrying.

That was the sweet.

Then I read my Rhabdo-Kids email digest after opening gifts this morning.

That was the bitter.

When Jacob was diagnosed and I joined the Rhabdo-Kids list, a little boy named Diego Fuentes, 4 years old, had just come off treatment a few weeks earlier. I remember reading his mother's emails and rejoicing for his apparent healing.

When he had his first set of off-treatment scans in February, they discovered that he had relapsed. They amputed the arm where the tumor was growing for the second time and started a different chemo protocol.

But the rhabdo kept growing, first in his lungs and then in his brain. For the last six weeks, Diego has been in the hospital as the doctors treated both his cancer and his side effects. His parents made arrangements for all the medical support necessary to let him come home for Christmas before resuming treatment. They planned to bring him home yesterday.

Instead, Diego died in his parents' arms on Christmas Eve at the hospital. He was 5 years old.

Pray for his family tonight, and for as many nights as you think of them. I am.

Diego's Site

Thursday, December 18, 2008

What I Did Today


Shoveled snow. Six inches of it. I'd be happy if it would stop snowing now.

WHAT I DIDN'T DO TODAY:

I didn't help move two storage units' worth of belongings into my parents' new house.

I didn't send Jacob to the dentist with my mother-in-law.

I didn't take a phone call from the dentist telling me Jacob needed at least two teeth pulled.

I didn't take another phone call from the dentist, while directing burly moving men, telling me that he had to pull three teeth and he thought "something was odd" so he took a tissue sample and sent it to a lab.

I didn't cry on the way home (scaring Matt) because I was swept by a wave of what I thought at the time was absolutely senseless fear.

I didn't wrap my arms around Jake the moment he walked in the door, bloody and bruised but unbroken.

Snow away. Six inches every hour if necessary.

Today is a better December 18th.

Monday, December 1, 2008

CHILDHOOD CANCER AWARENESS TREE

Each year during the December holiday season, a 23 foot tree is placed
in Washington DC. The tree is solely decorated with thousands of gold
ribbons (the symbol for childhood cancer), with each ribbon bearing the
name of a child who has, or has had cancer. The tree glitters strong in
our nation's capitol for all to see. Thousands
each year are touched as they are reminded of our nation's youngest
cancer patients.

I encourage families who have had or have a child diagnosed with cancer
to participate in this unique event and support childhood cancer
awareness by adding your child's name to the National Tree. Ribbons are
$5.00 each and can be purchased on-line by clicking on the following
link:www.candlelighters.org/cancerawarenesstree2008.stm. A tribute can
be added in honor or memory of your child.


I wanted to make you aware of this opportunity. I wish I lived near D.C. so we could attend the tree lighting. But at least Jacob will have a ribbon--I donated today in his name.

Candlelighters is an organization that supports the families touched by childhood cancer. One of their most noticeable efforts is to give free books to families. We were given a request form our first week in the hospital that, once filled out and sent in, brought us one of the best books on childhood solid tumors available. They also provide books on helpings siblings cope and dealing with grief and other issues.

As we face the holidays with our child in remission, I'm moved to think of all the groups who have helped us this year. Candlelighters, Make-a-Wish, Primary Children's, Huntsman's Cancer Institute, our neighbors and family members who cooked for us twice a week for ten months . . .

God Bless You Everyone.

Tuesday, October 28, 2008

Jacob . . .

is officially Off Treatment.

OT, as it's referred to on the rhabdo list I belong to. The only acronym I like better is NED--No Evidence of Disease. Jacob attained that status in April, after radiation killed the tumor. And he's still NED today, according to his last treatment scans taken yesterday.

Now I have a page in front of me that is our roadmap for the next 10 years.

Year 1: MRI and chest CT every 3 months

Year 2-3: MRI and chest CT every 4 months

Year 4-5: MRI and chest CT every 6 months

Through Year 10: annual visit for blood draws and exam

There are plenty of secondary things we'll be watching for, side effects of the treatment rather than the cancer. These include delayed sexual maturity (I'm sure Jake will be delighted that I told you that), bone damage in the radiation field (including the teeth), and possible secondary cancers years later (such as osteosarcoma from the radiation and leukemia from the Cytoxan.)

But for now, I actually got Jake to admit that he was excited today. That may have been just a ploy to get me to buy him clothes, but sue me. My 12-year-old is OT and NED. And we are all H-A-P-P-Y.

Tuesday, October 21, 2008

And Then . . .

There was me trying to decide what to write next.

It's been two weeks since his last chemo. He's had his blood draws for that period and his counts are good. On Monday the 27th he has a CT scan and MRI and we'll go to clinic the next day to meet with Dr. Afify for the final time. But not really--because, of course, we don't get to just walk out and pretend this all never happened. There will be scans and exams and probably worrisome moments aplenty over the next five years until Jake is officially declared cured. And I don't think I'm quite ready for all that. I'm still contemplating switching into that gear and wondering what life will look like then.

In the meantime, I've had a copy of Newsweek in my inbox for several weeks waiting for me to do this post. It's the September 15 issue and it has a story entitled WE FOUGHT CANCER . . . AND CANCER WON.

In 1971 (two years after I was born), Richard Nixon signed the National Cancer Act which was supposed to make cancer curable. Instead, almost forty years later, cancer is poised to overtake cardiovascular disease as America's number one killer.

There has been, as Newsweek put it, "a lot of elegant science . . . [but] studies of the mechanisms leading to cancer and efforts to control cancer often seemed to inhabit separate worlds . . . Indeed, it is possible (and common) for cancer researchers to achieve extraordinary acclaim and success . . . without ever helping a single patient gain a single extra day of life."

Why? On the NCI website, one can read that "the biology of the more than 100 types of cancers has proven far more complex than imagined [in 1971]." Cancer is smart. Send a drug up against it, and the cancer cells will develop around it. Like bacteria, cancer cells are constantly learning and mutating.

Metastasis is the greatest enemy. Metastatic cells, those that break off from the original tumor and grow elsewhere in the body, are responsible for 90 percent of cancer deaths. You want to know the really scary thing? There's no way to be certain that you're not leaving metastatic cells behind after treatment. Radiation killed the tumor in Jake's sinus. Forty-two weeks of chemotherapy have killed off any microscopic cells left behind. We hope. But the truth is, there's no way to tell.

The overall mortality rate from cancer has fallen 7.5 percent since 1971. In 1991, 215 out of every 100,000 Americans died of cancer. In 2005, it was 184 out of 100,00. Progress, but slow. Consider that deaths from cardiovascular disease have fallen by 70 percent in the same time period.

However, there's a brighter statistic. Fifty years ago, pediatric cancer was an almost certain death sentence (children with leukemia in the 1940s rarely lived longer than 3 months). Today, 80 percent of pediatric cancer patients live to be adults.

80 percent.

Why? Because pediatric oncologists banded together. With fewer patients, they reached out across the country for advice and help. The Children's Oncology Group (COG) has standardized treatment plans for pediatric patients. At times, 80 percent of children with a particular cancer are enrolled in the same clinical trial (Jake is part of a clinical trial)--it's long been less than 1 percent for adults. Rather than focus on new biological pathways, pediatric oncologists took the weapons they had and learned how to use them in new ways. And along the way, they saved the lives of countless children.

Only they're not countless to their parents.

Bravo. And thank you.

Monday, October 6, 2008

Here We Are

The last night.

Jake has been sung to by the nurses and doctors, he has a "Happy Last Chemo, Jacob" sign on his wall, and he's having his last chemo drug right now.

Let the wild rumpus start :)

Saturday, October 4, 2008

We Are Celebrating . . .

1. Weight Gain. (No, not mine.) Jake hit a milestone last night--he weighs 100 pounds. We haven't seen that number since January. At diagnosis he weighed 105. By the end of radiation, only ten weeks into treatment, he weighed 88. All that whole milk, red meat, and ice cream have finally paid off.

2. 7th Grade. Last week was parent-teacher conferences. Jake is doing wonderfully well--one B+, one A-, and six A grades. Not bad for any kid transitioning to middle school, but I can't help but be extra proud of how well he's doing considering the number of times he's had to miss for chemo and transfusions. Not to mention that he doesn't seem to suffering any cognitive deficits from the toxic drugs they've been giving him for 9 months.

3. Going, going, . . . nearly gone. Forty-eight hours from now, Jake will be in the midst of his last chemo treatment. It really ends. I guess. I'm not sure I believe it. I'll get back to you on that next week.

Wednesday, September 24, 2008

The Blood Came

And we're home. Pulled in just as Emma and Spencer we're getting home, so all is well.

I didn't mention that we also spent several hours yesterday at Primary Children's. Jake had a follow-up eye exam with Dr. Hoffman. Still 20/20--can't get better than that. His optic nerves are a little paler than normal--Dr. Hoffman says that's indicative of damage and almost certainly due to the radiation. They'll keep an eye on it (no pun intended!)--we go back in January for another eye exam.

Yesterday they sent us across the street to the Moran Eye Center for two further tests that he had the first week in the hospital. One where he's hooked up with probes on his ears and the back of his head that measures brain wave and optic nerve activity and also a visual field test to check peripheral vision. He came through both just fine--the first test showed that his left eye (where he got the bulk of the radiation) had slowed down almost imperceptibly in reaction times (a couple thousandths of a second) but statistically unchanged from January.

The good news just keeps adding up and we treasure it.

Oh, and how's this for coincidence? Today there was a little girl being transfued next to us--turns out it was the same girl that had her last chemo in the room next to Jake's last week. The nurses commented to her about going in to sing and she told them "I only have to come back for scans now."

Ah, joyous day.

The Unexpected

But not really.

They decided last week not to transfuse Jacob during his stay for chemo. And vitamins and B12 supplements apparently couldn't make enough of a difference. His hematocrit on Monday was 21 (the low end of normal is 35).

So here we are in clinic, waiting for the blood bank to send up packed red blood cells for transfusion.

It's only Jake's second transfusion in 38 weeks, so we have nothing to complain about. They even let us go out to lunch between drawing the blood for type and crossmatch and waiting to begin. We went down to KFC/A&W on 4th South to eat, which perked Jake up considerably. And he didn't think it the worst thing in the world to miss school :)

Hopefully, this transfusion will be enough to get him through the next (and final) round of chemo. The doctor told us what to expect after chemo on October 6-7: Jake will have the normal two weeks of blood draws to check counts and then he'll come back in for MRI and CT scans. Once we get the clearance from those, we can schedule surgery to have his port removed. (The great benefit of removing the port is that it removes the number one fear of infections so we no longer have to visit the ER with every fever.) The doctor expects all that will be done by Halloween.

Which might move it up on my list from second favorite to first favorite holiday.

Still no blood yet.

Monday, September 15, 2008

One To Go

After today, that is.

This is number 13 out of 14 inpatients. (Good thing I don't believe in bad luck.)

We're tucked away in a quiet corner room, next to someone who is having her last chemo. Talk about an upbeat atmosphere.

Now, you would think that having done this 12 times in the last 8 months, I would have the ritual down pat.

You would be wrong.

I forgot the pillow--Jake's nice king-size pillow. He is reduced to rearranging multiple hospital pillows to try and make himself comfortable.

Other than that, all is well. The 3rd season of Supernatural was released on DVD and came last week, so we're back to watching the Winchester Brothers' adventures. (Jake doesn't like it when I guess what's happening--I tell him I didn't watch years of X-Files and Buffy for nothing.)

His counts are low--his ANC just barely made the cut-off for doing chemo at 748. And his hematocrit is at 24, so he'll likely get a transfusion tonight of packed red blood cells. Might as well get it all done at once :)

Wednesday, September 10, 2008

Last Clinic Treatment

Was yesterday.

And all I can say . . . Why didn't I ask for the very last appointment of the day all along?

Our appointment was at 3:00, so that Jake only had to miss a little bit of study hall, and the clinic was absolutely empty when we got there. Okay, I think there were a few patients in rooms, but the waiting room was dead quiet. Everything went like clockwork and we were out of there by 4:00, giving us a jump on the worst of the rush hour traffic.

I will just have to ask for the late appointment whenever we have follow-up care.

We actually met a new oncologist yesterday. He was very nice and had a med student with him. He asked for a history from us, so the med student could see how the process goes, and he kept asking her things like, "Do you know why he's on neupogen?" and "Why does he take Septra every week?" It was really quite entertaining for us. (For the record, she's good. She got all the answers right. Though Jake wasn't that impressed--after all, he knew all the answers too.)

The most interesting comment came when the doctor was asking Jake about school. And Jake was being, well, twelve. ("Yes, I'm in school. It's okay. I get tired but mostly I'm just bored. Are you done yet?")

The doctor said to the med student, "This was one of my great lessons the first time I entered a pediatric cancer ward. I expected it to be a place of great sorrow and despair, but instead it was full of kids living their lives and families being pretty normal."

Is there sorrow in pediatric cancer wards? Absolutely. But the great thing about kids is how resilient they are and how well, generally speaking, they deal with the side effects. In fact, Jake came to me last night and said, "When you told me I had cancer, it didn't seem that horrible. It was just going to be something I had to do."

So here's to living our lives pretty normal. We're keeping our fingers crossed on Jake's hematocrit--it was 25.2 yesterday. If it goes below 25, they transfuse. He has inpatient next Monday and Tuesday, then another one on October 6-7.

And that will be it.

Wow.

Sunday, September 7, 2008

Whew

Still here, sorry for the long delay. Remember that phrase about life happening? It's been happening all over the place the last two weeks :)

Jake had an inpatient stay on August 25-26. It was uneventful, which is something I aspire to greatly these days. He did throw up right after they'd disconnected his IV to let us go home, so they hooked him back up and gave him an extra dose of anti-nausea drugs. He slept for six solid hours when we got home--I don't think he even rolled over. In fact, I kept going in to make sure he was still breathing. Haven't done that in many years.

And then the next morning, he got up and went to school. Made it the whole day. How can I not be proud of a kid like that?

We've also had a clinic visit since my last post, so that leaves one more clinic visit on Tuesday of this week. I'm not sure I quite grasp that yet. But I'm looking forward to wrapping my mind around the concept.

All has not been perfect. Jacob's body has been put through so much in eight months that it's no surprise his blood counts have trended downward and are getting harder to raise in between inpatient stays. For the last two weeks we've hovered on the edge of a transfusion of packed red blood cells because of his low hematocrit counts. And his ANC has been consistently low this last month. It's the measure of his body's ability to fight an infection, and Jake has been within normal range much of his treatment time. But now, even with the daily shots of neupogen, the ANC isn't rebounding much.

Which led us to Wednesday of last week.

Jake come home from school complaining about how cold it had been and how he'd been shaking throughout the day.

Then he took his temperature--101.5.

In the 30 minutes it took me to talk with the clinic and the oncologist and make arrangements to take Jake to our local ER, his temp went up almost a full degree.

You know how I walk around pretty normal and feel optimistic most of the time? I'm here to tell you that the fear is just a number away and that rising temperature set off every fearful alarm bell I have.

It was a long drive to the ER.

(By the way, I've decided this is the only way to arrive in an ER--when an oncologist has called ahead and said, "You've got a kid coming in who is immune supressed and is running a fever." No waiting around for us. And no big room with curtains between the beds--Jake got his own room with a door and a TV. The only way to go.)

I had packed our hospital bag, fully expecting we would end up at Primary Children's for several days. (Based on the fact that his ANC the day before had been only 800--1500 is the low end of normal.) But we were there only two hours and then came home. His temperature was down to 100 degrees even and didn't change over the two hours, his blood cultures and urinalysis were normal, the chest x-ray was clear, and the blood counts showed that his ANC had come up to 1500.

So I bought him pizza on the way home and kept checking his temperature through the night. By morning it was normal and he went to school for the afternoon.

We are a gladsome family.

Hope you are all the same.

Thursday, August 21, 2008

What are Blessings?

I meant this to be a celebration of Jake's starting 7th grade and making it through each school day with at least some energy. Also, the fact that he has only 7 weeks left of treatment, and two of those weeks he'll have off. So 3 more overnight stays and 2 more clinic visits--that's it!

But then life happens. And so does death.

This morning, the 4-year-old son of our stake Young Women's president was hit and killed by an unlicensed teenage driver. The mother was there--she and her baby had walked down to the bus stop to send an older brother to school. The bus pulled away, Cooper started to cross the street on his bike, and a car turned and ran him over in front of his mother. He was life-flighted to Primary Children's where he died.

I was in the midst of an online discussion about the nature of blessings when my husband called with the news. I've spent a lot of time this year thinking about blessings and trials. Here's some of what I wrote:

I've pondered this thread all month and come to only one conclusion--that I alone can decide what's a blessing for me. Troubles and trials might well be blessings--but I really don't want someone else telling me so. And how does it help to tell, say, Meadowbee, "I believe Jordan's death is a blessing"?

That's what has been on my mind while thinking of this thread. Me and Meadowbee. Jacob and Jordan.

Jacob and Jordan were diagnosed with the same cancer 1 week apart. Almost 8 months later and Jacob has clean scans, 7 weeks left of treatment, and he started 7th grade this week.

Jordan is gone.

Maybe there's something wrong with me, but I never seem to ponder "Why me?" or "Why us?" when bad things happen--I certainly didn't spend any time on that when Jake was diagnosed. But I invariably ask "Why me?" and "Why us?" when good things happen. Why is Jacob doing so well when Jordan is gone? Why has Jacob been given the blessing (and I do think it's a blessing) of enduring treatment so well with so few side effects? I know it's not due to my greater faith or obedience--I've met Meadowbee, and she beats me in both categories by a mile.

Here's what I've decided, the lesson of blessings according to Bluestocking: Good or bad, things happen. What matters is what I do next.

I have a very wise neighbor, Aaron, who lost his mother to cancer when he was young. He told me the following: "In my experience, those who pass through these things come out wiser and better. But that doesn't mean it hurts any less while you're doing it."

I would not want to give up what I have learned and who I have become this year. But if I could make it so Jake never had cancer, I'd do it in a heartbeat. Mothers are funny like that.

It seems to me that those who pass through wrenching trials can go one of two ways. It can isolate you. I've seen this with some of the parents on the rhabdo list--they shut out their friends who lead "luckier" lives and insist that only those going through the same thing can understand them and they have no patience for anything less.

Or it can open you up, leaving your heart and spirit so open that you feel all manner of suffering and pain with compassion. It hurts. But I wouldn't trade it for isolation. "Mourning with those who mourn"--I have a new understanding of that phrase now.

And so tonight I mourn for the Mardesich family--for Cooper's parents and his three older brothers whose lives changed in an instant. If you have a minute, pray for them and for all who mourn in one way or another tonight.

Tuesday, August 19, 2008

Finally Photos

School has begun . . . and so has the celebrating.

I pause momentarily in my joy to bring you photographic proof of our recent vacation.


Matt with Miami in the background


Matt, Laura, Jake, and Emma in Nassau, Bahamas
Jake and Matt with the ship in the background


Jake doing his favorite thing--sitting still and eating


Emma, Spencer, and Jake in front of the water slide


Matt and Jake at dinner enjoying the entertainment

Almost all of us with St. Thomas in the background


Spencer and Emma at Camp Carnival


Laura in Marigot, the capitol of French St. Martin


Why get dressed to eat? Or use a table?


Yes, you can mini-golf


Emma and Spencer and their towel animal
(No, I don't know what sort of animal it's supposed to be)


Tuesday, August 5, 2008

Home

The good news--we're all safely home.

The bad news--the ground is still swaying.

Since I'm out of here again tomorrow (I'm using the word "here" in the sense of the state of Utah, not "here" as in Jake's hospital room, which I'll be out of tonight once Chris comes up to take the night shift) I thought I'd better post at least a little about our trip.

Oh, and no need to worry about the hospital. It's his normal inpatient stay. He's starting on the last third of his treatment protocol, scheduled to end in mid-October. He had a CT and MRI yesterday and everything looks good. Still no sign of the tumor, just a little thickening in the sinus area which is an effect of the radiation. So all is well and good.

Back to our vacation. In no particular order, here's what comes to mind.

1. Lines: Lots and lots of lines. Especially the first day when 3600 people are all trying to get on a ship the size of a village through one small gangway door. That night at dinner, Chris asked, "What time exactly did we board?" Jake's answer: "Define board."

2. Humor: The only way to cope with 3600 people all wanting to be roughly the same place at the same time. Also a nice benefit of being together for any length of time. I think it always surprises Matt and Jake how funny their parents can be. Or maybe they were laughing at us.

3. Nassau, Bahamas: Hot. Sticky. And the hair braiders charge by the braid.

4. St. Thomas: Good snorkeling (or so Chris, Matt, and Emma report.) Jake and I stayed on board, put Spencer in Camp Carnival, and enjoyed the relatively empty ship. A pool almost to ourselves, going down the waterslide without waiting in line, not so much noise while reading . . . a nice day for everyone.

5. St. Maarten/St. Martin: Chris and I left the kids on board (Emma and Spencer safely squared away at Camp Carnival) and went on an island tour. It's split between the Netherlands and France and I particularly enjoyed the hour we spent wandering around the French capitol, Marigot. A wonderful old cemetery with above-ground crypts and lots of conch shells marking the graves of the less wealthy. Some of the dates went back to the days of sugar cane plantations in the 1800s. Also, you just know that a French town, no matter where it's located, will have wonderful pastry.

6. Dining: Summed up in two words--good and lots. My children are now wandering around the house wondering where there 24 hour soft serve ice cream and pizza are. We had our own table in the dining room for dinner and I could have lived off the warm chocolate melting cake alone. The true measure of success? Jake gained 7 pounds.

7. Overheard onboard: Matt and Jake each found themselves the target of some unsolicited comments. As Jake walked through the corridor one night, he saw an irate woman banging on a stubbornly-shut cabin door. As Jake walked past, she turned to him and said, "Don't ever get married when you're older."

As for Matt, he wore his My Chemical Romance t-shirt (with the band members as skeletons on a black background) and caught the eye of some teenage girls who felt compelled to give him a hug . . . oh, wait. That's a different story. Same shirt, though. A small boy came up to him shyly and said, "I like your shirt" and then scurried back to his dad, to whom he said, "When I grow up I want to be like him--kind of cool and kind of creepy."

And now, of course, the fun ends. Laundry, Chris travelling, school starting in less than two weeks . . . oh, wait! School starting is the beginning of MY fun.

Aaahhh, I can hardly wait :)

Friday, July 25, 2008

Celebrations

Monday was our Bon Voyage party at the Make-a-Wish house. Fifty of our dearest family and friends came to celebrate Jacob and wish us farewell on our trip. A few pictures . . .


Jake engraving his star that will hang in the
entrance along with all the other Wish Kids'
stars


Jake with Irene (in the blue) and Carolyn,
his Wish Granters (both strictly volunteer)


The theme was Cruise Night--I don't know
why we're pointing out the volcano :)


The Wish Room--only Wish Kids
have a key and they can visit
whenever they like

Part of the Saratoga gang--Jake, Josh, Matt,
Zach, Keefin, Lochlyn, and Teal
It was a beautiful party and a way to offer thanks to a few of the many people who have helped us this year. I wish we could have invited all of you--distance and time notwithstanding :)
After a busy week (state holiday, Spencer's 7th birthday, getting new front and back doors installed), we're only hours away from our trip. We leave home at 3:30 tomorrow for our flight to Miami.
That's 3:30 in the morning.
No, we did not arrange the flight.
Matt doesn't plan to go to bed at all, but the little ones are already asleep and I'm headed that way quickly.
Wish us luck and no hurricanes!




Wednesday, July 16, 2008

And Also . . .

I once again proved my clumsiness.

(I know that was a post I wrote on my other blog, but I assume some of you read it--if not, I'm clumsy. There, that's the gist of it.)

I didn't walk into any hooks on the bathroom door this time. Probably because this bathroom door didn't have any. But I did draw blood.

As I pulled out the chair to turn it into a bed, I first managed to completely pull apart the bottom half of the chair. And then, when I was putting it back together, I dropped it on my right hand.

Blood ensued.

Fortunately, there are plenty of bandages in a hospital room.

But it was a child's hospital room, so I wore two bright blue crayon-shaped bandages until I got home yesterday and could change them.

What do you think I'll manage to do next time?

Tuesday, July 15, 2008

The Verdict is In

Bruce Willis beats blended clams.

In other words, I thoroughly enjoyed Live Free or Die Hard.

The night was short, the morning was a little bumpy (dry heaves--Jake's, not mine), but we're all together again at home tonight. Jake has eaten dinner and is currently playing his brother's drum set. All is right with our world.

The next two weeks are clinic breaks (which is why we can leave for a cruise) and then we start the last third of the treatment protocol. When we return from the Caribbean, Jacob will have an MRI and CT scan and, barring bad news on that front, will start the last 14 weeks of chemo.

It can't come soon enough.

Monday, July 14, 2008

Here Again

I'm not sure who's getting more tired of these overnight stays--me or Jake.

To be fair, I don't have to be tied to an IV, have toxic drugs pumped into my body, and get up to pee every two hours or less. So Jake wins.

As his reward, he gets to pick what we watch. We've apparently moved off the letter S (no Supernatural or Survivor tonight) and on to feature films. First up--Live Free or Die Hard.

I'm not sure which is more exciting--watching people eat blended clams or watching Bruce Willis save the world. I guess tonight's my chance to find out.

All is well on the medical front--fluids are going, chemo's started, Jake looks great. More or less the same--more or less boring.

Let's hope it stays that way.

Tuesday, July 8, 2008

Summer Fun

We're well into our summer clinic break and loving it! Today was the second week with no doctor's appointments, no chemo, nothing but a blood draw yesterday. Sure, he has to be in the hospital next Monday and Tuesday, but that's so much easier to take when we haven't been driving up there every week for long clinic visits.

Jake's doing great. After a low hematocrit count 8 days ago and a few days' of worrying whether another transfusion was in his future, Jake's count came up 4 points in 4 days. So we were able to enjoy the 4th with no worries :)

The big fun of the last two weeks was the Vans' Warped Tour at the Utah State Fairpark. The Warped Tour is a wide selection of alternative rock bands (I'm guessing there were 30 or 40 playing the day we went) and Matt got tickets for his birthday. One for him, one for Jake, one each for Mom and Dad . . . As the day came closer, all I could think was, "It seemed like a good idea at the time." Of course, at the time I bought the tickets, it wasn't averaging over 100 degrees.

We were able to work out a good deal--two of Mat's friends bought tickets and so I took the 3 older boys up at noon shortly after everything opened. I walked them right to the entrance, made sure they had my cell phone number programmed into the cell phone they were carrying, and gave them two instructions: The one that said Don't Split Up and the one that said I Trust Each of You So Don't Do Anything That Would Make Me Change My Mind.

And then they were on their own for a few hours. I didn't go far--just to a nearby Barnes and Noble where I could enjoy a few hours of cool peace and quiet while still being close enough to rescue them. Chris and Jake came up at 4:30 and I met up with them to hear a couple bands. We found the big boys in time for the show we all most wanted to see--Angels and Airwaves. Jake, fortunately, didn't want to be in the pushing mass of humanity but was happy in a somewhat shaded spot where we could see the side of the stage and had a good view of the crowd-surfers. Which is when Jake proved his eyesight is indeed 20/20, as he said, "Isn't that Matt?"

Yes, it was. Sigh.

Believe me, it could have been worse. I haven't had this much fun people-watching since the Blaqk Audio concert. I did not see any corsets this time, but there were lots of varieties of "What were you thinking?" and "Does your mother know you're wearing that?" But there were also lots of kids that looked like my sons and his friends, teenagers who like music and like live performance and don't feel the need to pierce every available (and some not so available) body part.

So where is my Coolest Mom in the Universe crown?

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: http://www.camphobekids.org/whatiscamphobe.html

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

Home

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.

"No."

"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.

Tuesday, May 27, 2008

21 Down . . .

And 21 to go.

Today marked the halfway point of Jacob's chemo protocol. Week 21 out of 42--now we're on the downhill side!

Jake got the full dose of vincristine today, as he has the last two weeks. His grip is definitely weakening, but he still has decent fine motor control of his hands and he hasn't had any problems with his feet. We're walking the balance--assessing the neuropathy each week to see if the side effects are bad enough to risk a lower dose of vincristine. Right now they're not. Each week we evaluate anew.

To celebrate the day (and make up for the fact that I never did write a 12th birthday post for Jake), I've got some photos entitled:

JAKE THROUGH THE YEARS


1997--1st birthday


1998

1999--with baby Emma


2000--my favorite picture ever

2001--graduating preschool


2002--Grandma and Grandpa Andersen's house


2003--and he can count


2004--Jake with Emma


2005--the ice cream cake that wouldn't cut


2006

2007--with Matthew at Outback

Tuesday, May 20, 2008

Hooray

What a difference a little medicine can make.

When Jake came home last Tuesday, we brought home a new prescription with us--Megace. It's commonly used for cancer patients who aren't eating enough due to appetite loss. (Not for issues of nausea and vomiting, but fortunately that hasn't been an issue with Jake.) I couldn't believe the difference it made. After the last inpatient admission, Jake didn't eat anything substantial for at least four days. This time, he's been eating well and often. He's still hovering around 90 pounds, but at least he didn't drop down 3-4 pounds as he commonly does before coming back. Weight maintenance is our goal. (For Jake at least--Chris and I are another story.)

We also celebrated his 12th birthday last Friday. I had a post in mind, but never got around to it. Maybe this week. Suffice it to say he got the gift he'd asked for and his older brother enjoys even more--an electric guitar. Lessons are forthcoming, that being my only caveat. ("If you're going to have an instrument, you're going to learn how to play it properly.")

Happy Birthday, Jacob!

Monday, May 12, 2008

Admit

Another Monday, another overnighter.

At least this time Jake isn't running a fever. Yet. We've been here since noon and four hours later they're still pumping him full of fluids. He napped for a while and now we've started Episode 1 of Survivor: Australia.

His biggest problem is food. He's definitely gone off the hospital food, even when they'll bring him whatever he wants whenever he wants. Last time we brought up frozen dinners and kept them in the Nutrition Room. This time we stopped at Subway. Hopefully he won't get sick when they start the chemo, because I'd hate to have him start hating Subway.

In other news, we met with the Make-a-Wish foundation ten days ago and had a marvelous experience. (By the way, a piece of pertinent information--lots of people think Make-a-Wish is only for terminally ill children. Not true. Every child between the ages of 2 1/2 and 17 with a life-threatening illness is eligible. So no, Jacob is not dying. Now you can relax and read the story.)

We found out about Jake's eligibility from our social worker the first week in the hospital. I finally emailed the Utah director after radiation was finished in early March. Once they hear from the parents, Make-a-Wish contacts the child's doctor to verify eligibility. Then the family is assigned two Wish Counselors and the fun begins.

Our entire family went to the Make-a-Wish house on Friday evening, May 2. As we opened the door, there was a large sign that said "Welcome, Jacob." We met Irene and Carolyn, two wonderful volunteers who will be our liaisons for everything. The first task was to take our star-shaped wish tokens to the fountain in the backyard. After making our individual wishes (I'll bet you can guess what I wished for), we went up to the second floor where there's a large open space where we could all sit and see how well the members of our family know Jacob. After answering questions ranging from "What is Jacob's favorite kind of music?" to "What is Jacob's favorite store?"(and getting chocolate for each correct answer) Irene and Carolyn got down to business.

They asked Jake four questions: What would you most like to do? What would you most like to have? What would you most like to be? Where would you most like to go? After answering the four questions, they asked Jake to rank them in order from first to fourth.

So what was #1? What did Jake most wish for?

A cruise to the Bahamas.

No one was more surprised than Chris and I, but we're all delighted. Because Jacob has had an increasingly difficult time bouncing back after each inpatient, we've decided to reschedule our Washington D.C. trip to next summer. There would just be too much walking and too many hours of sightseeing for it to work this summer. A cruise, though, is perfect. Food, sun, water, and more food. Emma and Spencer can spend time at the kids' club, Matt and Jake can roam the ship to their heart's content, and we can all do as little or as much as we want.

The arrangements are moving quickly, thanks to the fact that our family is all in possession of passports. I spoke to the travel coordinator today and it looks like we're going the last week of July, sailing from Miami and visiting the Bahamas, St. Thomas, and St. Maarten.

Make-a-Wish insists that families contribute nothing monetarily. All wishes are funded by donations. Utah averages 130 wishes granted a year, with no eligible child turned away and no waiting list. The walls of the house are covered with pictures and stories of children and their wishes. From dirt bikes to horses, puppies to computers, Europe to Disney World, Make-a-Wish has provided dreams for seriously ill children for years. They want these children to have hope.

Chris and I have had to deal with the issue of guilt, knowing that we as a family are capable of paying for this cruise ourselves. But Make-a-Wish insists that it be a gift. So our resolve is this: we may not be allowed to pay for anything on our trip, but we can contribute what we would have spent to Make-a-Wish and help another child and family achieve their wish.

If you're interested in Make-a-Wish and its work, check out the link: http://www.wish.org/

Sunday, May 11, 2008

Jordan McKay Washburn died yesterday, May 10, 1996.

I'll be praying for his family this Mother's Day as I pray for my own dear son.

http://www.ourrhabdoblog1.blogspot.com/

Saturday, May 10, 2008

Happy Mother's Day

Me and baby Jacob 1996

Jacob was born just four days after Mother's Day.

He was born on Thursday, May 16, 1996 at 9:43 p.m. at Virginia Mason Hospital in Seattle, Washington. I was extremely glad to no longer be pregnant. (1996 was definitely the most uncomfortable Mother's Day of my life.)

I've been thinking of another mother and son this week. Bonnie is an online friend of mine whose 26-year-old son, Jordan, was diagnosed with Metastatic Alveolar Rhabdomyosarcoma one week after Jake's diagnosis. He was living in China with his wife at the time he got sick. It was a tricky diagnosis and the treatment has been excruciating with little to no progress.

Last week, Jordan and his family chose to discontinue treatment and move to palliative care. Right after finding that out, I was reading Joan Didion's book THE YEAR OF MAGICAL THINKING for book club and the chapter I happened to be on expressed perfectly what I was feeling for Bonnie's sake.

Joan Didion's only child, a grown daughter, was in intensive care in California. When Joan arrived at her bedside, she told her daughter, "You're safe. I'm here. You're going to be all right."

Joan goes on to write: "It occurred to me during those weeks that this had been, since the day we brought her home . . . my basic promise to her. I would not leave. I would take care of her. She would be all right. It also occurred to me that this was a promise I could not keep."

As I discussed this with a dear friend who has spent her share of time helping people she loves leave this life, she shared some hard-earned wisdom with me. As parents, we can't always make everything right. But we can always keep our promise never to leave. We can promise to hold our child's hand and be with them until the moment that someone from the other side reaches out a hand and promises to keep them safe for us.

As you pray for Jacob, say a little prayer for Jordan and his family, especially his mother and his wife. If you want to know more about this brave family, you can read about their journey at http://www.ourrhabdoblog1.blogspot.com/

Thank you.

Friday, May 2, 2008

Popularity

This is a topic I've been thinking about for a while now.

I belong to a listserv called Rhabdo-Kids, an email list for parents of children with rhabdomyosarcoma. Half a dozen times in the last six weeks, there have been discussions in various emails about how rhabdo (and sarcomas generally) don't have the funding that some other cancers have.

At least three times, someone on the list has used a sentence pretty close to this one: "Nobody knows much about rhabdo at our hospital; leukemia's the popular cancer."

I get their point, really I do. Rhabdo is not as well-funded and it's more mysterious. The treatments are often guesswork, especially when a child doesn't do well on the standard protocol or when there's a relapse.

But that phrase sets my teeth on edge. "Popular cancer."

Try telling that to my friend and neighbor whose son has leukemia. "Oh, don't worry, he'll be fine. He has a popular cancer."

Yes, it's true that ALL, the type of leukemia her son has, has been better studied and has a higher cure rate.

So what? He could still die. This is where I remember the oncologist in the first month at clinic who told us statistics don't always mean much. For every child who's ill, it's 100% or nothing. They get better or they don't. Does it matter to my friend that her son has only a 5-10% chance of dying as opposed to Jake's 20-30% chance? Is it possible to only worry 5%? I don't think so.

Here's what I would like to say to those who used the phrase "popular cancer" (but I won't, because I completely understand the stresses they're under and don't want to make them feel worse--so you get my rant instead!)

Would you feel better if your child had leukemia? Yes, more is known about it. Yes, more funding has been given over the years. You know what the difference is? More than 3000 children a year in the U.S. are diagnosed with leukemia. Between 250-300 a year are diagnosed with rhabdo. I don't think you're saying you want 10 times the children to fall to rhabdo. Yes, it would be great to have more funding for study of this particular cancer. But you know what? All the funding in the world can only do so much. There simply aren't as many kids to study with rhabdo. There are limits to what they can learn from a smaller population group.

I hate rhabdomyosarcoma. I hate that it's so aggressive, I hate that doctors don't always know what to do, I hate that some treatments fail.

But I don't hate that it's rare. I'm delighted that not as many children get it. I don't ever want to be a popular cancer, if that means that thousands more children each year have to go through what Jake is.

And for the love of heaven, don't tell someone whose child has leukemia that they're lucky because their kid got the popular cancer.

Thursday, May 1, 2008

The Post of Pictures

Jake and Emma at Crater Lake, Oregon, the deepest lake (at 2000 feet) in the U.S. They're standing on about 25 feet of snowpack.








Spencer coming out of the men's bathroom, showing off the depth of the snowpack.






Jacob and Spencer--You call this Spring Break?






Our anniversary trip to Zion National Park, where we did 15 miles of hiking in 3 days. Having not collapsed this week, I figure I definitely do NOT have mono any longer.


















Thursday, April 24, 2008

We're Off

Chris and I, that is. Okay, so we didn't make it to Maui in January like we'd had planned. But Zions National Park isn't a bad second. Easy to get to, sunny, warm and no kids. What's not to like?

We'll be gone until Sunday. Grandma and Grandpa Sudweeks are filling the gap with our children. (Thank you!) Fortunately, Jake's temperature has finally come back to normal this morning. He never did get rid of it in the hospital. They cultured him twice and gave him two rounds of IV antibiotics before we came home Tuesday just in case, but it's obviously just a virus and his blood counts are strong enough right now to handle it.

He had fluids the last two nights to help him over the first difficult days after chemo when he doesn't want to eat or drink or do much of anything but sleep. This morning he's up (well, on the couch) watching another Deal or No Deal that he recorded. So all is right with his world.

And his hair is growing back in very nicely after the two weeks of no chemo. Too bad it's just going to fall out again. At least we know it will come back in the end!

Monday, April 21, 2008

Spring Break

Now that we've got the good news out of the way, here's a recap of our spring break trip to Klamath Falls last week.

1. It's an awful lot of driving through an awful lot of nothing. We drove the full 11 hours on Monday. Saw maybe two dozen other cars in the 3 hours between Winnemucca, Nevada and Lakeview, Oregon. Not to be rude, but I'm so glad I don't live in Northern Nevada.

2. Our condo at the Running Y Ranch was very nice and a great deal. We enjoyed the indoor pool, the video game room, the playground, and the fitness room. Chris and I had dinner the last night at the restaurant overlooking the Arnold Palmer-designed golf course. Sirloin with bleu cheese peppercorn sauce and tuxedo mousse for dessert . . . man, I wish I was eating that tonight instead of a hospital cafeteria salad.

3. Had the strangest grocery store experience ever. We went to a little Safeway near the condo on Monday night to get breakfast things. While we were in the checkout line, a guy from the next line over was staring at Jacob. He walked over, staring at Jake all the time, and asked, "Are you the kid in the paper?"

Jake just looked at me, at a loss. It's not like I knew what to say. I discarded my first thought ("Why, do you want to give us money?") and settled for a simple "No."

To which the man said, again to Jake, "But you have cancer, right?"

There didn't seem any point in denying it. When we nodded, the guy continued, "But did you read about the kid in the paper?"

We allowed as that we were from out of state and had just arrived and finally got away and into the parking lot where we all had a fit of the giggles.

Now we just burst out at random moments: "So, are you the kid in the paper?"

4. Beautiful weather. Okay, not the first day, but Wednesday and Thursday were stunning. We returned to the Lava Beds and clambered through the caves, and finally made it to Crater Lake. The sky was blue, the sun was shining, and there was something like 25 feet of snow on the ground. We took the most beautiful photos and now we've crossed something off our list--seeing the deepest lake in the United States.

5. New family. I got to meet, Jeanne, my grandfather's widow. I think we flustered her a little (Spencer will have that effect on anyone) but she was very kind and welcoming and showed us all sorts of things around the house. He was an award-winning photographer, writer, pilot, Marine and too many other things to name. Meeting Jeanne was pure pleasure.

6. Coming home is sweet. Especially after spending a night in Elko, Nevada. That's all I'm going to say, because I'm working on being nicer.

Scan Day

Thank you Dr. Million.

Thank you Hunstman Cancer Institute.

Thank you Radiation Oncology department (Troy, Nancy, Glen, Diane, Debbie . . .)

Today, I would pay every dollar of our 35, 996 dollar bill for radiation myself without blinking.

The tumor is gone.

According to the MRI Jake had this morning, there is absolutely no sign of tumor or tumor markers left where just three months ago there was a tumor the size of a lime. We knew it had shrunk, of course, since it was so obvious in his cheek in January. But we hardly dared hope for this.

Now we start on the next 26 weeks of chemo to mop up any microscopic cancer cells hiding in his blood. In fact, we're in the hospital right now waiting for inpatient chemo to begin. It might be a while, because he's running a fever and they have to culture his blood. But hey! We've already picked up where we left off on Survivor three weeks ago and we have another season waiting in the bag. Plus Jake's favorite game show is on tonight, Deal or No Deal.

Personally, I could watch any amount of mindless entertainment tonight. It's a good day. The best day since January 2.

And tomorrow Chris and I will celebrate our 16th anniversary.

We've already got our present :)

Friday, April 4, 2008

Easter



Some time ago, our wonderful niece, Karin, sent a care package for Jacob and his siblings. Inside were four stuffed Dr. Seuss creatures. On Easter Sunday, I finally got all the kids in one place with their creatures for a photo.



Photos

Jake and Troy, our favorite radiation tech



Troy and Nancy getting Jake ready



The mask is locked down on the sides and top so he doesn't move. The small white squares are the guide marks so that his position was always precisely the same (the table he's on goes up and down to get him lined up with the laser dots coming from the walls--I swear, it was like being inside a sci-fi film). A wonderful tech named Debbie decorated the mask for him--we brought it home when he finished radiation and have it in his bedroom. He has a bite blocker in his mouth to keep his teeth and mouth still and in position. The table itself was narrow and hard and the room was always freezing--the techs got used to grabbing at least three heated blankets every time we came. Once everyone left the room and the 12-inch thick lead-lined door was closed, Jake got to lie there for 15-20 minutes while the machine moved around him and delivered its radiation at precise locations. The only real hardship Jake experienced during these sessions was the time Troy forgot to change the music and Jake had to listen to country.
Don't forget to read the next post down--I was busy updating today :)

The High Cost of Doing Good

We got the bill for Jake's 28 sessions of radiation.

35,996 dollars. And zero cents.

Jacob is now far and away our most expensive child :)

We're very blessed in Chris's job and the insurance it provides. But man! Seeing a number like that is enough to make you look twice.

In other news, Jake and I made it through episode 11 of Survivor: Pearl Islands. That was 4:15 in the morning. Jacob managed to fall deeply asleep until about 8:00 a.m., but I pretty much just listened to my iPod and dozed a little in the chair. Fortunately we were home before noon so I could have a nice long nap.

He never did get sick--hooray! But he's a harder time bouncing back this week. He was tired and dizzy and didn't want to eat or drink for several days. He's back down below 90 pounds. He also had his first fall on Wednesday. Between being dizzy and the neuropathy in his feet, he just went down in the middle of the kitchen.

But here's the great news--he's got a two week break! He just completed the first 13 week cycle of the VAC protocol (he'll do three cycles in all) and after 13 weeks he doesn't have to have any treatment until his next inpatient on April 21. It comes just in time for spring break, allowing us to leave for Oregon without having to have chemo first, and hopefully his hands and feet will recover a little without any Vincristine for two weeks.

More than anything, though, it's a chance to be a little more free. No doctors, no clinic, no hospital--just the home care nurse to draw blood twice a week. And neupogen shots. And antibiotics on Mondays and Tuesdays . . . okay, so not completely free. But a little is better than nothing. And we're going to enjoy ourselves fully.

Tuesday, April 1, 2008

Late Night

Here we are at Primary Children's. 1:30 in the morning. Jake's chemo started at 8:00. He's got one last dose of Mesna to go at 2:00 and then it's just peeing until we go home.

Apparently we're not sleeping tonight. Jake's a big Survivor fan so I bought him the DVD of Pearl Islands for this admission. He's decided he's going to watch the entire season before we go home in the morning. We're halfway through episode 7 now and neither one of us is feeling the least bit sleepy.

The bad news: His neuropathy definitely worsened this week after the 3/4 dose of Vincristine last week. He even has a sign on his door saying Falls Risk. So he only got a half dose today. I don't know if I need to start worrying about that or not. Something to ask the doctors.

The good news: He gained another 2 pounds this last week. And he's had no nausea at all.

Off to watch the 7th episode tribal council.

One thing about Survivor--lots of things that make me say "Things could be worse. At least I'm not (sleeping with hermit crabs, wearing the same clothes for a month, drinking blended octopus and bleeding clams)."

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

BETTER: Jacob

WORSE: Me

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?

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.