It’s Tuesday . . .

And Tuesday (the day of the week) reminds me of Tuesday.

This is Tuesday:

Tuesday is the twin sister of Piper. The younger sister of Axel and Spencer. The daughter of Charlie and Jess.  A granddaughter and niece and cousin.

In July 2008 she was diagnosed with neuroblastoma, a rare pediatric cancer.  They fought and fought and fought.  Hospitals and chemotherapy and CT scans and surgery and all sorts of stuff I can’t even pronounce or imagine.

She was brave, a fighter, a strong little girl.  But the lousy cancer was stronger and in January 2009, at home with her family, Tuesday died.

You can go here, to her family’s blog, to read more of her story.  There is also a short, sweet video there you can watch.

You can also go here, to the website her parents are starting.  They hope it will be up by Sunday, which will be Jess’ second Mother’s day without Tuesday.  This will be a place where families who are affected by pediatric cancer can find support.

But more than anything I’d like you to go here.  Some of Tuesday’s friends have rallied this week to raise money for families who are living with pediatric cancers (via http://www.whatchagonnado.org) and it would be wonderful if you would consider helping.  This week, dozens of blogs have rallied together to auction off neat and fun items and a donation of $1 (for most) gives you a chance at them.

I don’t really like the idea of children dying, but it is a sad reality of our world.  And we can do something to help families who live with this reality.

(* photo from here.)

Of Course There Are Others. . . Part 2

Tuesday was just the first child I learned of who was fighting neuroblastoma.  We prayed for her for seven months (we learned about her after her cancer journey started) and it was a roller coaster ride.  The emotions were up when she made progress, and down when she was in pain or having difficulty.

One of the ups was over Thanksgiving and Christmas.  One of my all-time favorite posts was so simple and beautiful. . . just one photo and one word: CLEAN! This was just before Christmas and I’ll tell you, there was great rejoicing at the Moose household that week.

Until the post, only nine days later, the one that said the cancer was back.  And then we prayed again.  And Tuesday fought that cancer with all she had and chemo and radiation and then, all of a sudden, she was gone. I read that post as my children were heading to bed.  I was glad to have a chance to grieve a bit, before sharing the news with them.  We were unable to go to Colorado for Tuesday’s memorial service, so of course we had our own little wagie ride.

The night I sat at the computer to post about it, I learned about another little girl,  Cora.  Not even one year old, she passed away only weeks after her diagnosis with neuroblastoma.

WHAT! I thought this was a rare cancer!?!?

And yet, there are others! Many more!

Like Max, who was diagnosed with neuroblastoma at three years of age.  He fought it for the better part of four years before passing away.  His family is putting together a fun fundraiser in San Diego, if you are able to go check it out.

Then there’s Deqlan, who was not even a year old when he was diagnosed with neuroblastoma.  Amazingly enough, after only a few months of treatments, he’s now showing no evidence of disease.  And has been for over a year!

(No Evidence of Disease.  NED.  They don’t like to say that someone is “cured” of cancer because it has a propensity to come back, kicking and screaming.)

Through some other friends of Tuesday, I’ve also learned of other children with neuroblastoma.

Xander

Devin

Caden

Will

Haven

Adrianna C

Jay

Imogen

Kaitlyn

Tess

Lukas

Connor

Anna

Adrianna G

And Alyssa, Trey, and Sydney, whose web sites I can’t link to (and I’m not sure why.)

(Other children with other forms of cancer, and other health concerns, are listed also.)

“For Tuesday” also maintains a list of those who have passed away.  Today, there are 22 children on this list; 19 of these had cancer.

You could also go to the Neuroblastoma Children’s Cancer Society’s website, where they have a Wall of Fame.

Are you ready for this?  They list

ONE HUNDRED FORTY SEVEN

children who have died from neuroblastoma, and a longer list of those who are fighting.

Are you overwhelmed yet?  ‘Cuz I am.  I am so blown over by the numbers that I don’t even know what to do.

This is hundreds of children fighting cancer and dealing with chemo and radiation treatments; hundreds of parents devastated by watching their precious children in pain; hundreds of siblings worried that they might get sick and wondering why their brother or sister can’t play with them.  Hundreds of aunts and uncles and grandparents and cousins all touched by a terrible cancer.

I am so, so glad that the Tuesday Fiona Whitt Foundation (and I’m sure there are others that I don’t know about) was set up and that we can do something to fight neuroblastoma.  Today is the last day of the Tuesday Blog Party. The money you donate to the Foundation is going towards cancer research in Tuesday’s name.  Please head over to donate, there are some of the give aways that are ending today.  And there are a couple of huge, wonderful vacation packages that were just added.

Let’s kick the cancer for Tuesday and the other hundreds of children who are fighting it.

NMM: Tuesday’s Party Week

notmemonday

Welcome to another edition of this wonderful blog carnival, started by the very energetic and very lovely MckMama!

In honor of the Tuesday Blog Party this week, I’m sharing some things I did NOT do the past week during the party.

I did NOT visit each and every blog advertising a give away.

I did NOT enter a bunch of give aways!  Heck, it’s only $1 to enter, that’s not bad at all!

I did NOT decide NOT to post about my favorites, so as to limit my competition. ;)  I will NOT tell you about the gift cards, the cute little baby shoes, the darling children’s jewelry, the hats and scarves, the DVDs and books, coffee mugs, gift baskets, T-shirts, and sunglasses that are available through this party.

I did NOT spend several hours re-reading the Whitt family’s blog before writing a post or two.

I did NOT spend several hours researching neuroblastoma and other childhood cancers, and then writing this and this. (And I do NOT better understand neuroblastoma now, childhood cancers in general, cancer funding, etc.)

I was NOT excited to see such an overwhelming response to the blog party!

I am NOT hoping that we’ll reach our goal–$3000–today.

I did NOT almost forget to put in my donation for those give aways I did NOT enter.

I am NOT going to say, yet a-GAIN, “please go to Debi’s blog to join us for the Tuesday Blog Party!”

I am NOT going to wrap up Tuesday’s week tomorrow with yet another post about Tuesday and other stuff.

I do NOT wish ya’all to have a lovely spring day!

BPS: Tuesday

Normally on Sunday, we’d be posting our best baby pictures and linking up with Debi to share them with the world.

But this is not a normal Sunday.  This is Mother’s Day.  It is also Jessica Kate Whitt’s first Mother’s Day since the passing of her sweet, precious Tuesday.

This is the reason for the Tuesday Blog Party, to give Jessica Kate something wonderful today.

In keeping with my Tuesday focus this week, I thought I’d share a sweet picture of my little boys from our Wagie Ride.

The “wagie” was one of Tuesday’s very favorite things.  At her memorial service, folks participated in a Wagie Ride for Tuesday.  Those of us who were unable to be in Colorado did our own, virtual, Wagie Rides to remember Tuesday.

Except there was three feet of snow in our yard that weekend, so our “wagies” were actually “sleds.”

wr-driveway3

(And yes, I have blogged about this before.)

When I first learned about Tuesday, I talked about her with the boys.  Together, we prayed for her health.  In December (or was it January?) Debi had a great idea, to make cut-out tracings of our  hands for Tuesday.  We were able to participate in that too, it was a wonderful way for them to make a connection with a girl they had never met.  And I’m finding, too, that simply praying for someone creates a pretty strong bond with that person.  So, it was natural that we would want to participate in the wagie ride.

Please, would you take a moment to visit Debi’s other blog to join us with Tuesday’s Blog Party?  Lots of folks are putting some nice things up for grabs, and it’ll only cost you $1 to have a chance to win.  Plus, the money is supporting the Tuesday Fiona Whitt Foundation, for cancer research.
We are really close to meeting our $3000 goal!  Thank you!

Of Course There Are Others. . . Part 1

Aren’t we having fun? This blog party is awesome!  As of today the amount raised sits at just over $2000!  Our goal is to reach $3000, and we’ve got a few more days to party.  If you haven’t yet, please stop over to Debi’s blog to see the awesome items that you could win.  It just takes a dollar’s donation!

Today I’ve been looking at childhood cancers in general.  I’ve heard some shocking statistics and I wanted to share them with you.

The Candlelighters Childhood Cancer Foundation listed some very sad statistics.

  • In 1998, 2,500 children died from cancer . . . that is more children than died from any other disease
  • Approximately 12,400 children (up to age 19) are diagnosed with cancer every year in the United States
  • Before the age of 20, 1 in 300 boys will contract cancer; for girls, this is 1 in 333.
  • The 5-year survival rate for children who are diagnosed with childhood cancers is almost 80% (although some cancers are much lower than this)
  • There are an estimated 270,000 childhood cancer survivors in the United States; this is about 1 in 640 people between 20 and 39 years of age
  • Unfortunately, 2/3 of survivors live with at least one chronic health condition, such as heart or lung damage, infertility, cognitive impairment, secondary cancers, hearing loss, etc.; thus, childhood cancers affect the child for life

From the American Cancer Society, I learned of the top childhood cancers:

  1. Leukemia (about 33% of all childhood cancers)
  2. Brain and nervous system cancers (about 21%)
  3. Neuroblastoma (about 7%) (the one that Tuesday was fighting)
  4. Willms tumor, a cancer of the kidneys (about 5%)
  5. Hodgkin lymphoma, which starts in the lymph tissues (about 4%)
  6. Non-Hodgkin lymphoma, also starts in the lymph tissues (about 4%)
  7. Rhabdomyosarcoma, the most common soft tissue cancer in children (about 3%)
  8. Retinoblastoma, cancer of the eye (about 3%)
  9. Osteosarcoma, a cancer that starts in the bones (about 3%)
  10. Ewing sarcoma, another cancer that starts in the bones (about 1%)

(Yes, I know that doesn’t add up to 100%; but that’s the numbers they gave!)

Probably the biggest shock, for me, was in the funding statistics.  The Candlelighters’ page said that, in 2007, funding for childhood cancer research was somewhere between $30 million and $180 million.  Funding for breast cancer was allocated at $842 million.  That’s only federal funding, this figure does not include the $256 million from private breast cancer organizations (such as the pink ribbon campaign.)  The 5-year survival rate of breast cancer patients is close to 90%; this has increased since the pink ribbon campaign.  Funding research is making a difference for those diagnosed with breast cancer!

Another important thing I learned from the Candlelighters is that cancer funding is dependent (in part) on the number of people diagnosed per year.  Childhood cancers are less common than adult cancers and are thus funded at lower levels.  However, it has been suggested that another factor should be considered, something that is called PYLL (person years life lost.)  If a woman dies from breast cancer at the average age–61–the PYLL is 16.  If a child dies from cancer at the average age–10–the PYLL is 67.  In other words, an average of 67 years of life are lost for each child who dies from cancer!

I know that the funding question is big and complicated, and I don’t feel qualified to decide who gets the funding.  Several of my loved ones have been impacted by many different cancers.  I’d love to see cures for ALL cancers.

But one thing I do know:  We can help improve the outcomes for children who are diagnosed with cancer.  Tuesday’s blog party is one way we can do this!

Posted in tuesday. 1 Comment »

Neuro-what?

So, one of my first questions when I first learned about Tuesday was, What is Neuroblastoma?

Obviously, it’s cancer, but what kind and what does it do and how is it treated?  I didn’t know, so I looked into it.

The American Cancer Society says that neuroblastoma occurs mainly in young  children and infants.  It is a form of cancer that starts in immature, developing nerve cells (“neuro” meaning nerves, “blastoma” meaning a cancer that affects immature cells.)  It can be found anywhere along the nervous system, either in the adrenal glands (1/3 of cases), or in the sympathetic nerve ganglia of the abdomen(1/3 of cases), chest, neck, or pelvis (the remaining 1/3 of cases.)   Sometimes, rarely, the cancer is so advanced that the doctors can’t tell where it started.  Tuesday’s cancer was initially found on her adrenal gland; it was a whopping 12.5 cm X 15.5 cm.

Neuroblastoma can behave in unusual ways.  Sometimes the cancer cells just die off, or mature into normal ganglion cells.

What causes it?  Good question. Doctors don’t really know.  Researchers have noticed a difference between the cancer cells and the neuroblasts, a normal cell that can turn into a cancer cell.  They have found out that differences in the cancer can lead to a different prognosis for a child.  Which, of course, can lead to different treatment options.

Treatment for neuroblastoma includes surgery, chemotherapy, radiation therapy, and/or retinoid therapy.  The age of the child and stage and specifics of the cancer determine the treatment route.  Tuesday had six rounds of chemotherapy and ten rounds of radiation, and she was slated for a bone marrow transplant (actually, they called this a stem cell rescue because they were planning to use her clean bone marrow tissues.)

The prognosis for a child with neuroblastoma depends on many factors: the stage of the cancer, the child’s age, and certain specifics of the child’s blood and the cancer’s tumors.  Tuesday’s cancer had been considered stage 4, which means that it had spread from her adrenal gland to other parts of her body.

The American Cancer Society also has these statistics about neuroblastoma:

  • It is the most common infant cancer
  • It is the 3rd most common childhood cancer
  • There are approximately 650 new cases per year
  • It is somewhat more common in boys than in girls
  • The child’s average age at diagnosis is 17 months (Tuesday was about 21 months old)
  • About 1/3 of cases are diagnosed by a child’s first birthday
  • About 90% of cases are diagnosed by a child’s fifth birthday
  • About 2% of cases are diagnosed in children over 10 years of age and adults
  • Rarely, it can be detected prenatally by ultrasound
  • About 70% of cases are not diagnosed until the cancer has spread (as in Tuesday’s case)

I hope you have been enjoying this look at all things Tuesday here this week.  I have a few more posts up my proverbial sleeve.  Is this interesting and informative to you?  Do you have any questions you’d like me to answer?  Leave me a comment and I’ll see what I can do. :)

And please, please, please . . . pretty please . . . hop over to Debi’s blog to see what is available on the give away list.  The money raised this week is going to support pediatric cancer research.  Perhaps one day there will be a cure for this terrible disease that has taken so many of our “Tuesdays.”

TT: Mom

It’s Tuesday Week here at the Purple Moose Tracks, in honor of the Tuesday blog party.

This week I am thankful for Tuesday’s mom, Jessica Kate.

I spent some time last night reading through her blog postings.  She wrote a lot after Tuesday was diagnosed with neuroblastoma.  But she actually started blogging months before that.

As I read through her blog for the second time, I was amazed and impressed all over again with her faith, her courage, and her strength.  I think these qualities are what caused me to start frequenting “Go Blog Yourself” back in August when I first heard about Tuesday and her family.

“Faith” doesn’t mean that we won’t have questions, but that we trust God anyway, even when we don’t understand what’s happening.

“Courage” doesn’t mean that we won’t be afraid, but that we will push on and persevere despite the fear.

“Strength” doesn’t mean that we won’t feel weak, but that we will do what needs to be done even when we feel the weakest.

And that all comes through loud and clear in her blog.  You have inspired me, Jessica Kate, and I am so glad that you have shared this journey with us and allowed us to pray for your family throughout these past several months.

If you’d like to join us for Thankful Thursday, you can hop over to Lynn’s blog.

And if you haven’t yet stopped over at Debi’s blog, please take some time to visit today.  You can donate to cancer research and enter give aways all at the same time!  As of right now, there are 63 different give aways listed and the donation total is over $2000!!

Who is this Tuesday?

Some who have not yet met Tuesday might wonder who she is.  I’d be happy to introduce you.

Tuesday is a twin to Piper.

A younger sister to Axel and Spencer.

A daughter to Charley and Jessica Kate.

Born on the 11th of  October, 2006.  Her last day on this earth was the 30th of January

I wanted to share a sweet, short video that Tuesday’s family posted on their blog, but I couldn’t post it here . . . please go here to view it.

But here’s one from you-tube that I can embed here.

. . . and here’s another one.

Tuesday liked the color pink.

They called her “Tootie.”  She had the most beautiful, curly blonde hair.

She loved, loved, loved a good “wagie ride,” as she called the wagon.

On July 21, 2008, Tuesday was diagnosed with stage 4 neuroblastoma.

She endured probably 50 to 100 different procedures during her eight months fighting neuroblastoma.  CT scans and bone scans and MIBG scans, six rounds of chemotherapy, surgery to remove traces of cancer and one of her kidneys.  She was scheduled for a bone marrow transplant (stem cell rescue), but that was postponed there when the cancer started growing again.

She was a very active, energetic child, despite the cancer.

She lost her hair and a lot of weight, but she never lost her spunk or personality.

I think I “met” Tuesday in August, and the Moose family has been praying for her and her family since then.

Eight months of cancer treatment (and all that goes with it) took quite a toll on her family, though, as you might imagine.  And yet, they continue to reach out to others.

This week is Tuesday’s Blog Party.  If you have some time, please go to Debi’s blog today.  Many bloggers have arranged for special give aways this week, and all you need to do to get in on the fun is donate $1 for each you’d like to enter  (although I guess some may have different requirements. . . )  As of Tuesday night, $1000 had been donated to the Tuesday Fiona Whitt Foundation, which is donating the proceeds to pediatric cancer research in Tuesday’s name.

Posted in tuesday. 1 Comment »

WW: Boy Soldiers

December 14, 2007

ww-soldiers-12-14-07

Ok, I couldn’t do this totally wordless today.  I was very impressed with how my boys took little Tuesday in to their hearts.  In the fall, when we started praying for her, they would remember her on their own.  Even after she had passed away, they still wanted to show love to her family.

Want to play along with Wordless Wednesday? Link up over here.

Want to join us for Tuesday’s Blog Party? Click here.

Party With Us This Week!

Do you remember Tuesday?  I do.

In a nutshell, she fought neuroblastoma for eight long, terrible months.  This struggle ended on January 30, just over four months ago.

Eight months.

Struggle ended.

Horrible things to say about a sweet, spunky, two-year-old girl.

We have been grieving with Tuesday’s family.  And now we have an opportunity to bless this family.  How, you ask?  Glad you asked.

Debi has spent some time organizing a wonderful Blog Party.  The goal is to raise money for the struggle against neuroblastoma.  If you visit her fundrasising blog, you can see a list of many people who are posting give aways this week.  You can win all sorts of stuff with a donation of just one dollar.

Just one dollar.

Please join us this week to make this Mother’s Day a little less bitter, and a little more sweet, for Tuesday’s mother.  This week is officially “Tuesday Week” at my blog.  I plan to post about her every day.

And I plan to go party hopping too!  Give aways, here I come!

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