Kyra, the Swine Flu, and the Dramatization of Disease

I stayed with my parents last week, helping my dad out with my mom as she recovers from her recent open heart surgery.

As a rule I don't listen to any news on TV, but this week I've watched more cable news in the last three days than I've seen in the last six months.

Today there was this big news conference about the swine flu and there was video of people wearing HEPA masks and talking about their local pharmacies being sold out of antibacterial hand cleanser.

I decided to do some checking to see if I should be worried or not.

As of 30 Apr 2009 (updated 3 May), the number of laboratory confirmed swine flu cases in the U.S. is:

	Laboratory-confirmed cases		Deaths
State/Country	4-30-09	5-03-09	4-30-09	5-03-09
Austria	1	1	0	0
Canada	19	70	0	0
Costa Rica	0	1	0	0
Denmark	0	1	0	0
France	0	2	0	0
Germany	3	6	0	0
Hong Kong	0	1	0	0
Ireland	0	3	0	0
Israel	2	3	0	0
Korea	0	1	0	0
Netherlands	1	1	0	0
New Zealand	3	4	0	0
Spain	13	13	0	0
Switzerland	1	1	0	0
United Kingdom	8	15	0	0
TOTAL COUNTS (international)	51	123	0	0
Mexico	97	7	506	19
TOTAL COUNTS (Mexico)	97	506	7	19
Alabama	0	1	0	0
Arizona	1	18	0	0
California	14	26	0	0
Colorado	0	4	0	0
Connecticut	0	2	0	0
Delaware	0	10	0	0
Florida	0	3	0	0
Illinois	0	3	0	0
Indiana	1	3	0	0
Iowa	0	1	0	0
Kansas	2	2	0	0
Kentucky	0	1	0	0
Massachusetts	2	7	0	0
Michigan	1	2	0	0
Minnesota	0	1	0	0
Missouri	0	1	0	0
Nebraska	0	1	0	0
Nevada	1	1	0	0
New Hampshire	0	1	0	0
New Jersey	0	7	0	0
New Mexico	0	1	0	0
New York	50	63	0	0
Ohio	1	3	0	0
Rhode Island	0	1	0	0
South Carolina	10	15	0	0
Tennessee	0	1	0	0
Texas	26	40	1	1
Utah	0	1	0	0
Virginia	0	3	0	0
Wisconsin	0	3	0	0
TOTAL COUNTS	109	226	1	1
Source: http://cdc.gov/swineflu/ World Heath Oranization

The only death from swine flu in the United States so far was a a 22-month old Mexican citizen who had crossed the border with his family to visit relatives in Texas. The boy contracted the flu in Mexico and had several underlying health problems preceding the swine flu diagnosis. (source: Texas Department of State Health Services)

Almost all of the large number of swine flu cases in New York can be traced back to over 20 students from a Catholic high school who spent spring break in Cancun and came home sick. The students in New York have all been treated and released and have recovered or are recovering at home.

For the period 1972 to 2001, the number of annual deaths due to garden variety influenza averaged 41,400 per year in the U.S., but that little fact almost never makes the news. (source American Journal of Epidemiology)

I am having a hard time understanding this panic, tens of thousands of people in the U.S. die every single year from the flu and while it is great to be prudent and take precautions to prevent infectious disease, what we have right now is school closings and mass panic.

Enter brain tumors, a topic near and dear to my heart. For the period 2000-2004, an average of 15,596 people of all ages combined died per year from brain tumors. (source Central Brain Tumor Registry of the U.S.)

In 1995 the NCI reported the number of children who died from cancer, broken down by age: (source: NCI SEER data)

Age	Number of Deaths
0-4	558
5-9	523
10-14	503
15-19	691
TOTAL	2,275

So in the U.S, 2,275 of our kids died from cancer in 1995, 569 of them from brain tumors. This number does not account for "benign" (non-invasive) brain tumors, which also kill our kids but in 1995 they weren't being counted.

Today, May 1st, is my niece Kyra's birthday. She would have been 18, a legal adult, but the thing is, she died in 1996 at the age of 4 from a brain tumor. My oldest son Steven was 18 months old when she left us.

We asked why. The doctors told us that pediatric brain tumors are rare, Kyra's tumor wasn't genetic, it was just the luck of the draw. In other words, sometimes sh*t just happens.

Seven years later Steven is having headaches and nausea, not severe, and we're seeing doctors who are prescribing allergy medication and we're drawing blood and finally I get hysterical and they order an MRI and the next thing we know we're staring at pictures of the baseball-sized glowing thing in his 9-year old head as he lapses into a coma.

Random chance? Air pollution? The will of God? Genetics? Too many hot dogs? Not taking the right vitamins?

Sometimes bad things just happen and we just need to bear our crosses, but in this case, nobody has even done the studies.

We know about high fat diets and lack of exercise and pesticides and cell phones but babies don't get cancer from those things.

There's a bill that was introduced late last year, The National Childhood Brain Tumor Prevention Network Act, (HR 653 / S.305). We're asking for $25 million dollars per year for 5 years ($125 million total) to conduct a comprehensive, nationwide study into the causes of pediatric brain tumors. So when a kid is diagnosed with a brain tumor, participating hospitals will take a comprehensive medical history and draw blood, maybe not just from the child but also from family members to see if there is any pattern to these monsters that come from nowhere to grow in our kids' heads.

$125 million over 5 years. $25 million a year. There are homes in San Diego County that cost that much, even in the current economic downturn. Right now our little bill is sitting in the House Committee on Energy and Commerce, waiting for co-sponsors and for someone to care enough to bring it to a vote.

On the news this week, amidst the school closings and HEPA masks and press conferences and unsubstantiated deaths, I hear that president Obama asked Congress to add an additional 1.5 billion to fight the swine flu. (source: Washington Post)

1.5 billion dollars. Just like that. For a disease that has so far affected less than 300 people internationally. A disease that has yet to kill a single American.

Here we are, our little parent groups, jumping through hoops in between doctor's appointments and trying to figure out how to save our kids' lives, trying to get someone to listen to us and give us $40 million less than than what AIG paid its top executives. For a 5-year nationwide study, to try and help the hundreds of our kids that die every year from a disease that nobody understands.

Sensationalistic news reporting is nothing new, but if I hear one more of those incompetent idiots on the cable news quoting hundreds of deaths from the swine flu with data pulled from heaven only knows where, I think I'll scream.

And despite the fact that California has declared a state of emergency and I live only 30 miles from our nation's southern border, you won't find me donning a HEPA mask to go to Costco anytime soon.

Instead, I'll be making yet yet another call to my Representative in Washington in the hope that persistence pays off and he'll put his petty little reasons why not and agree to be a co-sponsor on our little bill.

I'm not holding my breath, but I'm still got to try. For Kyra, Steven, and the too-many-to-list kids I've come to love both in heaven and on earth.

Happy Birthday, Kyra, from the bottom of my heart to the tips of the stars.

- Kathleen

Swine flu information:

• CDC: H1N1 Flu (Swine Flu)
• WHO: Epidemic and Pandemic Alert and Response (EPR)
• PandemicFlu.gov

Kyra

From the bottom of my heart
To the tips of the stars
I miss you baby girl...

Rest in peace, and save a place for me.

May Day

July 1993

September 1994

Spring 1995

May 1, 1995

May 1, 2008

Maybe some day we'll know why...

Today there will be chocolate cake.

Happy Birthday, Kyra. We love you.

Jordan and Kyra and Bad Parenting

How not to set a good example for your kids (I don't remember my parents ever doing anything like this):

Steven and Doug heading out for the tournament

• August 2007: Make arrangements to play in a golf tournament on a school day .
• Wednesday October 3, 2007: Pull the kids out of school at noon to drive 500 miles to the golf tournament.
• Thursday October 4, 2007 (a school day): Spend the day playing a practice round of golf.
• Friday October 5, 2007 (a school day): Play the tournament. Eat way too much food at the banqet.
• Saturday October 6, 2007: Lounge by the pool all day. Get up off the chaise lounge to shower and eat a decadent dinner.
• Sunday, October 7, 2007: Get up late. Pack your stuff slowly. Eat a huge brunch and try not to think about the 500-mile drive home.

View Larger Map

• Sunday, October 7, 2007 (1:00 pm): We're getting a late start, the kids have school tomorrow...
  I-5, Highway 1, I-5... OK, Highway 1 it is.

Sean at Bird Rock Beach

• Sunday, October 7, 2007 (5:00 pm): It's late and we've got 500 miles to go tonight but 17-Mile Drive is so beautiful and any place that beautiful must have great educational value, shouldn't it?
• Sunday, October 7, 2007 (8:15 pm): Wow it's late, and we've got 340 miles to go and the kids have school tomorrow-- let's spend the night in Cambria.

Harbor seals along 17-mile drive

• Monday, October 8, 2007 (8:00 am): Hello, this is Steven/Sean's mother. Steven/Sean won't be at school today, we've been, uh, delayed, getting home ...
• Monday, October 8, 2007 (1:00 pm): Let's drive through the Santa Maria wine country just like they did in Sideways.

The Lone Cypress

• Monday, October 8, 2008 (11:00 pm): Thank God we're home. Kids, get busy on your school work, tomorrow's going to be a rough day and just think of all the work you'll need to make up.

It's been over 3 months and I think I'm still feeling a little guilty about that trip.

But the weather was breathtakingly beautiful and clear and we could see for miles and miles across the ocean and there was nobody on the road because it was a regular school/work day and for that weekend it felt like California might just be God's Country.

Monterey Cypress

And we helped raise a bunch of money for kids with brain tumors and their families.

The last time Doug and I took that drive down the coast together was on the way home from Kyra's funeral, baby Steven strapped into his car seat, Sean a mere gleam in his father's eye, the pouring rain a fitting accompaniment to our tears.

Sunset

Hopefully we did right by our angels Jordan and Kyra, maybe, just maybe they were smiling back at us.

- Kathleen

From The Bottom Of My Heart

February 15, 2007.

Eleven years ago today, four year old Kyra drew her last breath.

We found out that there was a monster growing in 3-year old Kyra's head at the end of June in 1994.

It was like a dividing line in my life. Before that day I had this simple faith in the natural order of things, children bury their parents and not the other way around.

A week before diagnosis

I was seven months pregnant with Steven when I overheard Doug taking the call. I could tell something was wrong but I thought it was his grandmother, not Kyra whom we'd just seen and who had just turned three.

I will never forget our first visit to a pediatric oncology ward. Kyra had surgery, but her tumor was truly inoperable and all they could get was a small sample for biopsy. When we got there, they were waiting for results.

Walking into the ward for the first time took my breath away. There was a newborn in an incubator, crying and crying and his mother would put her arms in the gloves and reach in to hold the baby from the outside. Sometimes the mother wasn't there when the baby cried and I wanted so desperately to hold and comfort that small creature.

Kids riding down the halls on trikes and parents walking behind with IV poles. Most were bald, Kyra was missing a patch where they shaved her head before surgery, but for the most part her long blond hair was intact.

Doug and I stayed at a friend's apartment who was out of town. After that first day at the hospital we went back to the apartment and fell into bed. I woke after about an hour of sleep and went out to the living room, where I cried so hard I threw up, it was like a nightmare that wouldn't stop.

The next day we went back to the hospital, where Kyra's parents awaited the final results of the biopsy and Kyra's prognosis. They left me with Kyra and her new baby brother Gannon while they spoke with the doctors.

Kyra's oncologist came in to meet her for the first time. She did a neurological exam, then moved on to the cognitive portion. She asked Kyra what her name was.

Kyra said, "Kyra Megan Pillsbury, that's spelled K-Y-R-A-M-E-G-A-N-P-I-L-L-S-B-U-R-Y. See my baby brother, his name is Gannon Quinn Pillsbury, that's G-A-N-N-O-N-Q-U-I-N-N-P-I-L-L-S-B-U-R-Y."

Without prompting, she went on to give her address and phone number.

Kyra loved to dress up

The oncologist gave me a look. She said, "well, I guess her cognitive abilities haven't been affected by the tumor. How old did you say she was?"

She was less than 2 months past her 3rd birthday.

I have met many kids with cancer who seem to have abilities beyond their years, and Kyra was exceptional. Beautiful, brilliant and articulate. Compassionate and generous.

She loved babies, and was the sort of person who would befriend anyone having a difficult time.

She loved those little stick-on earrings they make for little girls, and she had a whole collection.

Gannon, Steven and Kyra just before she relapsed

She loved band-aids and could never get enough of them, decorated in different patterns.

She had a jar in her room and she would make people pay her a quarter before they could do any procedures on her.

Most of all she liked to bestow gifts on those who came to visit, she needed lots and lots of those stick-on earrings and band-aids because she loved nothing better than to give them away to her visitors. Those who came to visit may have had to pay a quarter, but they were rewarded with many of whatever she had to give.

She would have given anyone anything of hers if they'd asked, her happiness was never measured by what she had, but by what she could give. At the age of three she knew she already had everything she needed.

Kyra and newborn Steven

She loved Steven, adored him. She held him in her lap when he was three weeks old and sang the Raffi song to him,

Baby Beluga in the deep blue sea,
Swim so wild and you swim so free.
Heaven above, and the sea below,
And a little white whale on the go.

Baby beluga, baby Beluga, is the water warm?
Is your mama home with you, so happy.

My words do not give sufficient honor to what she was.

Cancer is a despicable thief. Near the end, the massive doses of steroids she was taking to control the swelling in her brain made her nearly unrecognizable.

The last time I saw her, two weeks before she died, she lay on the sofa as I was leaving and told me the next time I saw her she'd be wearing a long green velvet dress and she'd have long blond hair.

The world is a poorer place for the loss of Kyra.

Kyra, I'm looking forward to the day when I get to see you in that dress with all that long blond hair.

From the bottom of my heart to the tips of the stars, I love you.

- Kathleen

The Story Behind The Bench

Kyra went to heaven,
and all we got was this bench.
... and it's not enough.

When I look at Kyra's bench, that saying comes to mind-- I'm not sure what that says about me, but I'm sure its nothing good.

When Kyra died, her memorial service was held on a cold and rainy February day in Santa Cruz. The rain seemed a fitting thing, as if the very heavens themselves wept in sympathy for the depths of our loss.

Money was collected for a bench to honor her memory. Kyra loved sunflowers, so there is a sunflower at the top. On the left is a carving of one of her drawings, a sunflower heart. On the right is her hand flashing "I love you" in sign language.

On the day of her memorial service, the bench had not been placed yet. But after the service, we all trudged out to the place where the bench is now. We stood in the mud and the iceplant in the rain dressed in our Sunday best.

Kyra loved decorated bandaids and we all wore two bandaids over our hearts placed in the shape of a cross. Bandaids for our broken hearts. But those weren't enough either.

We dug a hole in the rain and mud and planted the tree that is there now. Kyra's preschool teacher was there with her preschool friends. The kids scattered flowers in the stream that flows through the park and out to the ocean. Steven and Gannon were there, toddlers, Steven was 18 months old and Gannon had recently turned two.

Later on the bench was placed. A short distance away, in sight of Kyra's bench, there is a child-sized bench in memory of another preschool child. It reads "To Infinity and Beyond".

When we were in Santa Cruz, we decided to pay a visit to Kyra's bench. There was a woman sitting on Kyra's bench when we arrived. She lives in the area and she sits there often to smoke and read.

She was very friendly and accomodating when we arrived and offered to take photos of us.

She asked about Kyra.

"Kyra was my niece. She was beautiful and way smarter than any girl that age had a right to be and we found a tumor on her brainstem right after she turned three", was about all I could manage.

The woman asked about Steven and Sean. I told her Steven had a brain tumor too.

I think she was glad to meet one of the families and to hear the story behind one of the many benches that line the cliffs above Santa Cruz.

... and that's all I have to say about that.

- Kathleen

Dear Kyra

Kyra 5-1-91 to 2-15-96
taken 5-1-95

Dear Kyra,

I hope you don't think I forgot your birthday this year.

Fifteen candles this year on your chocolate cake. I'm trying to picture your face at fifteen.

Your brother Ian looks a lot like you did.

We drove up to Aptos, near your house for spring break this year, the place where they hold that golf tournament in the fall where they raise all the money for pediatric brain tumor research. We saw your brothers and your mom there, it was a rainy day and the boys stayed inside and played computer games.

On our way home, we stopped at the Monterey Bay Aquarium. We've only been there once before, it was three weeks before Steven was diagnosed with his brain tumor.

The Aquarium was awesome. Did you ever get to see the jellyfish there? They look like creatures from another planet, bearing little resemblance to any other life form on earth that I can think of.

Beautiful, graceful creatures...

We saw penguins there this time too. I don't remember the penguins from our previous visit, maybe they're new.

Patrice in her favorite spot

Some of the penguins there are from zoos in areas ravaged by Hurricane Katrina. One penguin was named Patrice and she liked to stand motionless at the very top of the exhibit. She didn't even come down when the other penguins were fed because she didn't want to lose her spot.

The giant octopus at the Monterey Bay Aquarium

The giant octopus was out this time too, spreading his tentacles and moving all over his tank. We didn't want to disturb him, so we didn't use a flash, it was dark, and he was moving a lot, but we tried to take a picture of him.

(top) Ronnie, Josiah, Luke, Sean
(bottom) Noah, Ryden and Steven

We went to see my family for Easter. On both sides of our family, all the kids are boys. There's Steven and Sean, and your brothers Gannon and Ian. On my side of the family, there are five little boys besides Steven and Sean. You were the only girl. We adore those little boys but sometimes we wish there was a girl too.

You never got to meet Steven's brother Sean, but I know you'd like him.

Sean loves baseball. He's pretty good too, as far as 8-year old boys go.

Sean and his teammate Luis jumping off the top of the slide

He played baseball for the first time when we were at St. Jude. Some sorority girls came over to where we were staying and brought plastic bats and balls, and Sean played with them.

He started playing right after lunch, and he played nonstop until they went home around 5:30 pm. They decided to leave the bats and balls with him since he loved them so much.

Sean and Luis

Every day after school, Sean would come home and take the bats and balls down to the Target House playground and organize a game with whichever patients and siblings were available to play.

Now he plays Little League.

Steven is doing well in school and is practicing golf. Both boys are getting ready for the summer, which means three tournaments a week for the first few weeks.

Steven misses you and mentions you from time to time, he has always felt a kind of bond with you even though he was so young when you left us. It's one of the hardest things I can think of, to live in a world where kids get cancer.

Steven has a friend in Memphis named Zach who had a stroke last month due to changes in his brain after radiation. Zach had to go back to the hospital last month because his incision became infected.

They got his infection cleared up and he had another surgery to try and create more blood flow to his brain, this time they did a bypass as a short-term solution as well as the procedure they did last time.

Like you, these kids are tough.

There's another boy in San Diego, also named Zac, who won an award in an art contest last September. He had a very similar tumor to yours and he was treated at UCSF like you.

He's a 5 1/2 year survivor and he's getting ready to go to college next year. When they found his tumor, he was getting ready to climb Mt. Whitney with his dad. But that trip was short-circuited, surgery, radiation, chemotherapy, you understand about all that.

Now he's giving it another shot, and trying to raise funds for pediatric brain tumor research. He has crutches and he can't walk the way he used to, but he's doing it. Way to go, Zac.

I didn't want you to think I'd forgotten your birthday. You are special, you are loved and you are missed.

Happy Birthday, dear Kyra.

Much Love,
Kathleen

Band-Aids For Broken Hearts

Our angel Kyra 5-1-91 to 2-15-96

She swam in an ocean of laughter
She danced in a desert of grace
The way that she loved those around her
Was written all over face
-- david m. bailey, brain tumor survivor --

Ten years, ten years since we held you...

For today, we wear bandaids over our hearts.

From the bottom of our hearts to the tips of the stars, we love you.

- Kathleen

You Are Missed

Kyra Megan Pillsbury
May 1st, 1991 to February 15, 1996

Kyra, three days before diagnosis

Dear Kyra,

You're on my mind today, this day is for you, sweetie.

So many memories... Did you know, I see your smile every time your brother Ian's face lights up? It's like a little gift, please keep them coming.

Kyra and Steven (3 weeks old)

Baby Beluga in the deep blue sea,
swim so wild and swim so free,
heaven above and the earth below,
and a little white whale on the go.

Those were the words you sang to him that day, my sweet new little boy, our firstborn son. You looked so good, you'd finished radiation, they couldn't see your tumor any more on the MRI, and your hair was starting to grow back. Things were good.

I remember the first time I saw you, your mother was bathing you in the kitchen sink and it looked like both you and she were both having the most wonderful time, you smiled and splashed as she laughed and crooned to you.

Your first birthday, where your mother tried to make you some healthy sort of cake sweetened with applesauce. Your father took charge of that situation and came home with a proper decadent chocolate cake to celebrate your initation into eating regular food, and that chocolate cake began a family birthday tradition.

Kyra with me shortly after her second birthday

I remember you getting bigger and taller, and all that long blonde hair, those big beautiful eyes.

I remember the video of you right after your brother Gannon was born, all that long blonde hair and you had your baby doll in your lap, you pulled up your shirt and held the doll to your chest and you said, "OUCH!!", even at two you saw how it worked with us new mothers.

You came down to visit just a few days before your diagnosis, there were signs then, more sleeping than usual, some balance problems and tremors in your right hand, but none of us had the faintest idea how serious things would get.

Kyra with her dad right after diagnosis and before surgery

The day you were diagnosed with a brain tumor the bottom dropped out of our world. The tumor was a bad one, terribly aggressive, and because of its location no operation was possible. How could such a thing happen to our beautiful girl?

Kyra after radiation and during her remission

You were this amazing child. We came to visit you in the hospital right after you were diagnosed. I was in the late stages of my pregnancy with Steven. I sat with you and your baby brother in your room while your parents had serious talks with the doctors.

Kyra loved to dress up

Your brother needed a diaper change and I discovered that the act of expecting a child didn't automatically gift me with the knowledge of how to properly install a diaper.

I was in the process putting the diaper on your brother backwards, and from your hospital bed, you corrected me and instructed me in the proper diaper installation technique.

Kyra's fourth birthday

You were barely three and you spelled your name and your brother's name, first, middle, and last for the oncologist the first time she met you. You knew your address and phone number. Your oncologist could do nothing but marvel at what an exceptional girl you were.

You were exceptional in every way, beautiful, ever so smart, so caring and compassionate.

Gannon, Steven and Kyra just before Steven's first birthday and Kyra's relapse

You weathered your trials with a grace and composure most of us could never muster.

Your friend Molly said, after you were gone, "I'm not crying on the outside, but I'm crying on the inside".

Today, maybe we're crying a little on the outside too.

Oh sweetie, we miss you, from the bottom of our hearts to the tips of the stars...

- Kathleen

In Memory of Jordan and Kyra: Trying to Make a Difference

Last Thursday, after the kids got out of school, we made the the 450 mile drive from San Diego to beautiful Aptos on the Monterey Bay in northern California, just a few miles south of Santa Cruz where Kyra's family lives now.

Kyra's father Peter's brother, David Pillsbury, formerly of American Golf and Nike and currently working for the PGA tour, teamed up with the father of another boy, Jordan Stuart, also from northern California, to organize an annual golf tournament for the purpose of raising funds to advance pediatric brain tumor research and to support the families of children with catastrophic diseases. They named their organization the The Jordan and Kyra Foundation.

Last year, we decided to attend with the boys for the first time, we'd made our arrangements and reservations about a month before Steven was diagnosed, the tournament took place in mid-October.

The tournament was scheduled to take place at the end of Steven's first week of radiation. Doug and Sean were planning to drive up from San Diego and attend, but after evaluating the logistics and expense of Steven and I trying to fly out after his radiation on Friday and returning in time on Monday again for radiation, we decided to stay in Memphis.

When the Jordan and Kyra Foundation most generously offered to help us with our travel expenses so we could be there for the event, we got Steven's radiation appointments scheduled so he could have the first one in the morning on Friday and the last one in the afternoon on Monday and we flew out.

They couldn't have ordered up better weather if they'd tried, it was warm, clear, and beautiful. We flew back to the west coast, until we saw the ocean from the plane, we hadn't even realized the depth of our homesickness, really, it was something that we needed to put in the back of our minds in order to be able to survive in Memphis.

We enjoyed our weekend together as a family with lumps in our throats the entire time, knowing that early Monday morning we'd be separated again and Memphis-bound.

It was a pleasure to return this year under more relaxed circumstances. The golf tournament was on Friday, with a banquet following in the evening.

Kyra's uncle David was more or less the master of ceremonies. David is also the person who most kindly arranged for Steven to meet Tiger Woods last December.

Doug got up and spoke emotionally and eloquently about Steven and how recent advances in brain tumor research have given him a better chance of survival.

Of the four families we shared our kitchen with at the Ronald McDonald House in Memphis, Byron, a 12-year old boy diagnosed with a brain tumor a month after Steven, died in April. Another boy, Garrett, just turned 15, suffered a relapse of his brain tumor in May and is now in hospice with weeks or less to live.

Pediatric brain tumors are the number one cause of death from cancer in children today. Although there are more cases of leukemia diagnosed each year, recent advances in the treatment of leukemia have greatly reduced the mortality rate.

The Jordan and Kyra Foundation and other like organizations are raising funds to help researchers find a cure so that kids like these can be saved.

And maybe, just maybe, one day we'll be able to say that Jordan and Kyra, though their lives here on earth were far too short, were able to make a big difference.

- Kathleen

About Kyra

Kyra, the oldest child of Doug's sister, was born on May 1, 1991. She was diagnosed with an anaplastic astrocytoma on her brainstem just after her third birthday in 1994. After a courageous 20-month battle with her brain tumor, she died at home on February 15, 1996 at the age of four, surrounded by her family and friends.

Kyra's Favorite Things

• Decorated band-aids
• Sunflowers
• The color orange
• Canned peaches
• Pasta with parmesan cheese
• Dressing up
• Flashing the 3-finger American sign language signal for "I love you".

Eight years ago today, we bid her farewell.

Grief fills the room up of our absent child,
Lies in her bed, walks up and down with me,
Puts on her pretty looks, repeats her words,
Remembers me of all her gracious parts,
Stuffs out her vacant garments with her form;
Then have I reason to be fond of grief.
William Shakespeare

We miss you sweetie, from the bottom of our hearts to the tips of the stars...

- Kathleen