Scans and Snow

We may or may not be normal, but waiting four weeks to post scan results does mean one thing--that they were clear :)

Which was the only good part of that morning. Let me explain. No, is too long . . . let me sum up.

Scans were scheduled for Tuesday, December 1st. Chris was in Boston. It was the day after Emma's birthday. Jake and I had to be at Primary Children's at 7:00 a.m. for the CT scan, followed by the MRI at 8:00.

And it was snowing.

Not just snowing. SNOWING.

I do not like driving in the snow. Ever. At all. Period.

Didn't have a choice. (Well, I suppose I did have a choice, I could have stayed home. Or turned around when it became apparent how truly awful the roads were, which was about fifty feet from our driveway. But cancelling meant having to wait until January for scans and I simply could not face Christmas not knowing for certain.)

So off we went, leaving the house at 5:40 a.m. for the normally 50-minute drive.

It wasn't early enough.

By 6:40 a.m., we had finally reached I-15. I had hoped it would be slightly better. It wasn't. No lane lines in sight, four-wheel drive vehicles passing at insane speeds, snow falling so thick and fast that I couldn't see more than five feet.

I have never been so grateful to reach somewhere safely as I was to pull into Primary Children's parking lot at 7:40 a.m. I seriously considered never leaving until spring.

But finally scans were upon us. (Might I point out that, although we were almost 45 minutes late, we were the first patients to make it to the Radiology department that morning. So scans went swimmingly fast.)

I refused to leave the hospital between the end of scans at 9:15 and his clinic appointment at 11:30. So Jake and I found a comfy set of couches on the third floor and he curled up to take up a nap. I, being an experienced hospital mom, had a book with me.

The Hem/Onc clinic wasn't nearly as fast as Radiology. By 11:30, the roads had become more passable, so patients with earlier appointments were finally showing up and everyone was pushed back. We waited. And waited. And waited.

At 1:00, we finally saw Dr. Afify. As always, she was off-hand but direct in reporting clean scans. I'll confess I drew a deep breath of relief. After having had no nerves last time, this time I'd been nothing but nerves. Jake had had a cough for a month and I was sure that, that the least, the chest CT would show signs of something. But all clear and we were out of there at 1:15.

It took us only 55 minutes to get home. What a difference a few hours makes.

We're now halfway to the critical two-year mark. (Almost all cases of rhabdo relapse occur in the first two years off treatment.) And we're now on an every four month schedule of scans rather than every three months. Next scans in April.

Hopefully I'll be able to see lane lines next time around.

Scans

I'm telling myself that waiting more than ten days to post scan results is a sign that our lives our returning to normal.

I don't think myself believes that. I can hear it's taunting voice whispering, "Lazy, lazy, lazy . . ."

Scans were clear. Let the wild rumpus start.

It was an odd day for me. I wasn't nervous. I didn't spend any time pondering the possibility that they wouldn't be clear. And when we were told all clear, I thought, "Yes, now what's the next thing?"

I spent last Monday pondering the meaning of my matter-of-factness. Did I know all was well without having to be told? Did I assume that I would cope when and if I had to with a relapse? Has childhood cancer become simply a minor irritation in the fabric of my real life?

Then on Tuesday, the day after scans, Jacob had to return to Primary Children's for a follow-up eye exam. He hasn't been seen for his eyes since last September when he was nearing the end of treatment. We got the same news last week that we did last year--near enough 20/20 vision as makes no difference, slight peripheral issues with the left eye, no significant impairment from the beginning of treatment.

And an odd thing happened when Dr. Hoffman said to Jake, "You've had an absolutely amazing outcome."

When he said that, I remembered sitting with Dr. Hoffman the first week Jake was in the hospital and being told that the tumor was wrapped around his optic nerve. It hadn't invaded the nerve, but radiation to the site could cause significant damage to the left eye, including blindness.

Instead, we have no significant impairment.

And that's when my glass cracked a little. I sometimes think I carry around much of last year in a glass vase--I can see and recall the events and emotions, but with a clear wall between me and them. But last Tuesday that glass cracked slightly, just enough for me to feel the full memory of what was a small moment from the beginning. Just enough for me to feel an overwhelming gratitude for the smallest blessings Jake's been granted. Would it matter if he were blind in his left eye? Not materially, certainly not compared to his life.

But he's not.

The glass vase is necessary for me to not walk around a constant mess of tears and panic, but that doesn't mean I don't remember. And I give thanks. For all of it.

Six Month Scans

All Clear.

There really aren't too many better feelings in the world than that.

I got the news by phone, since I am currently in Coeur d'Alene with my parents, Emma, and Spencer. It was Chris's job to get Jake to the hospital on June 1 for the MRI and chest CT. I warned him that Jake's least favorite part of it all is the putting in of the IV first (to be fair, an IV in the hand is quite painful). I sent Jake a "thinking of you" email Sunday night, and then waited Monday morning with breath held while taking the kids to breakfast at IHOP. As we pulled into the Costco parking lot (staying in a condo, so grocery shopping was essential) my cell phone rang. I promptly dropped it on the floor of the car and by the time I picked it up it had gone to voice mail.

I called back and got Jake. That was the moment I started breathing. I was quite sure Chris wouldn't have let him call if the news was bad. Not that I could tell from Jake's voice. The word "laconic" might have been invented for him.

"How was it?" I asked.

"Fine," he said.

"Did you get the results?"

(With a touch of surprise, as though he'd forgotten why he called) "Oh, yeah, They're clear."

And now we have three months of no worrying ahead.

I think I'll like this summer.

CLEAN SCANS

What can I add? :)

Okay, I guess I can add that it was snowy this morning. It took us an hour and a half total for a drive that usually is around 50 minutes. But that was the worst part of the day. For me, at least. Jacob would vote having the IV as the worst part of the day for him.

After the IV placement in his hand and blood draw in the outpatient lab, we were off to Medical Imaging where we had the shortest wait in, well, ever. We hadn't been sitting down two minutes when they took him for the chest X-ray. And while he was gone for that, they came looking for him to take back to MRI. All told, we were out of the hospital (for the first time) at 10:15.

Then it was off to Hot Topic (for Jake) and Cheesecake Factory (for me) to kill a couple hours until our clinic appointment with his oncologist at 1:00. A brief hiccup when we arrived in clinic--they sent us back down to MRI because "they want to take a couple more pictures."

In the 120 seconds it took us to get down to MRI, I managed not to freak out. The doctor who read the scans was waiting for us and the first words out of his mouth were "The treatment area looks perfect." So then I could breathe again and listen to the rest of what he had to say. There was a small spot on the very edge of the MRI field that he wanted to look at better. So Jake laid back down and ten minutes later we were back in the familiar surroundings of the Hematology/Oncology clinic.

Where we got to hear Dr. Afify pronounce both the scans and Jacob as perfect. I'm getting to like that word. When she was finished with the exam and asking about school and commenting on his hair, she said, "Jacob is one of those patients that makes my job effortless."

Let's keep it that way, shall we?

Thanks for the prayers that got us here. Now I can breathe freely for the next 3 months.

We Might Need a New Picture

'Cause I really don't recognize the bald Jacob anymore.

I figure it's a good thing that this site lies dormant for weeks at a time. Awfully nice to not be driving to Huntsman every weekday as we were last February, or spending the night in the hospital every three weeks, or taking his temperature obsessively when he didn't feel well.

The downside is he has to go to school every day. But he's being brave about it.

Just a quick note to let you know that he will have his first off-treatment scans on Monday, February 9. MRI and chest CT. We should have the results that afternoon during our clinic visit. Feel free to pray that the scans remain clear as they have been since last spring. Scanxiety has reared its head around here and I can't wait until Monday is over.

Jacob's Thoughts on One Year Ago

(Posted January 3, but written January 2)

Wow. That is all I can say after exactly a year of being diagnosed. Wow to lots of things but mostly wow to the fact that as i'm looking back I have no idea how I actually managed to get through this. Looking back I've realised how hard it should have been when In the midst of it all I hardly thought any-thing of it. I just felt it was normal every day stuff, and now I'm going into after-shock realizing how hard it really was. But so many good things have come of it that I can honestly say getting cancer Is one of the greatest things thats ever happened to me. I've learned so much and I now have a much different outlook on life.

Now Reading back over my moms early posts I feel so strange and I've realised how calm I was in those first four days when I had every reason in the world to panic. Looking back on treatment I think that the hardest week for me was the very last week of radiation when my mouth and throat hurt so bad that I ate nothing and I'd lost 17 pounds. Now exactly a year later it is 11:40 pm and got out of bed twenty minutes ago because I really felt that I needed to wright this now before the day is over. Well I'm almost done all that I have left to say is thank you. Thank you Dr. Afify and Dr. Million. Thanks for all the nurses at primary childrens. Especially Irish, Mitch, Karen, and "The Guy" Ben. Thanks for all the great radiation techs at huntsman especially Troy, Glen, and someone else who's name I cant remember now. Finally thanks for all of you people who didn't even know who I was and had never met me but still kept track of my progress and prayed for me despite not knowing me, thanks for all of that. It has been a hard but great year for me. Good Bye.

One Year Ago . . .

I was somewhere between leaving Primary Children's, picking up Matt, Emma, and Spencer from friends' houses, and sitting them down to tell them that their brother had cancer.

Today is a better day :)

Jake asked if I was going to post today, so this is for him:

I actually didn't sleep well last night. Hardly at all, in fact. I read until 1:00 a.m. and then played solitaire on my iPod until 2:00 a.m. and then lay in the dark staring at my clock until 3:00 a.m.--at some point after that I dozed but I kept waking up. When I woke up at 5:30, I couldn't go back to sleep. It was 5:30 in the morning last year when Jake was admitted to the surgical ward to await a biopsy.

There are, at least for me, only a handful of moments in time that stand out as "My life will never be the same." My children being born is the first to come to mind . . . but I had 9 months to think about that.

10:30 a.m., January 2, 2008 is a moment I never saw coming. I didn't ask for it, I didn't want it, but there it was. Standing in a hallway with a surgical resident whose name I'm not sure I ever knew as he told me, " We found the tissue sample from the dentist. The pathologist has finished his report. I'm sorry, it is cancer."

That is the only time in my life where I remember thinking: "From this moment on, everything changes."

I was only half right.

What hasn't changed? I'm still ecstatically married. I'm still the mother of four children. I'm still a writer and a friend and a woman of faith. I still live in the same house and go to the same church and send my kids to school and balance the checkbook and do laundry and read.

What has changed? Everything is deeper. Everything is clearer. Everything is more precious. Every breath I take I treasure. Every breath my children take, I give thanks.

Oh, here's something else that's changed--I listen to Matt and Jake's music (okay, more Matt than Jake. I'm sorry, Ozzy Osbourne is never going to make my list, Jake!) This summer Chris and I went with Matt and Jake to see Angels and Airwaves in Salt Lake. My favorite song of theirs is called Rites of Spring. Here's the chorus:

If I had a chance for another try . . .
I wouldn't change a thing, it's made me all of who I am inside.
And if I could thank God that I am here and that I am alive
Every day I wake I tell myself a little harmless lie . . .
The whole wide world is mine.

Would I change this day a year ago if I could?

I can honestly say no. I wish I could take away all the fear and grief and the pain and the uncertainty that Jake in particular has had to endure. But I cannot wish undone "all of who I am inside". And I cannot untangle that from Jacob's cancer.

Bless all of you who have prayed for Jake. Bless all those children who suffer tonight, from cancer or anything else. May the blessings walk hand in hand with the trials and may we always have the wisdom to see both.

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

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.

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.

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.

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.

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 :)

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.

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.

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 :)

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.

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.

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.