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.