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

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!

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/

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/

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.

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.

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.