**A Paypal account has been set up to help pay for ongoing travel and medical expenses for David. Just click on the button below

Friday, September 30, 2011

FRIDAY, SEPTEMBER 30, 2011

Good evening.

SEPTEMBER, to many it is just another month - but to those who have a child with cancer or for TOO many of US who have lost a child/young adult to this monster. We know this month as:

CHILDHOOD CANCER AWARENESS MONTH

Below are some facts: Sadly we have been relaying these exact same facts now for years. Wouldn't you think that with all the research out there - these numbers would be changing...... they have not for the many with Osteosarcoma or the many other sarcomas - because these cancers receive only 1% of any money raised.

Heartbreaking isn't it!

The Facts:
- chances are about 1 in 300 children will be diagnosed with cancer before age 20
- Every day 46 children are diagnosed with cancer
- 1 in 4 of these children will die within 5 years
- 2 in 4 will survive 5 years but develop long-term, life-altering and threatening health problems
- Only 1 in 4 will survive 5 years without major problems
- There are no warning signs or unhealthy lifestyles. No regard to race, creed, color, religion, or socio-economic status.
-Most childhood cancers, like Osteo, are still being treated with 25 - 30 yr old treatments with nothing changed in their treatment chemos.
- 3% of all money raised for cancer goes to childhood cancers.

Despite these facts, childhood cancer is considered "rare". Yet, does two classrooms of children diagnosed with cancer every school day, with one-half of a classroom dying from cancer, sound "rare"? It’s “rare” only if it’s not happening to your child. But for over 12,500 children and families in America this year, it will not be "rare". Each will discover the desperate need for increased funding specifically for kid cancer research, while enduring the most devastating experience of their lives.

When many people hear childhood cancer, they may only think of St. Jude and TV ads with cancer kids with round faces (from steroids) and bald heads (from chemo). Yet while it is a leading childhood cancer research center, St. Jude doesn't work exclusively on cancer research and treats less than 5% of all children with cancer. Or perhaps you think of the American Cancer Society and its support for childhood cancer? Unfortunately, in 2008, with $1,078 million of public support; the ACS gave only $4.2 million to childhood cancer research, less than 1/2 a penny for each dollar of support.

Nearly 90 percent of cancer kids are treated by members of the Children's Oncology Group (COG), an international consortium of over 230 hospitals and doctors working together and cooperatively sharing results. This cooperative research allows COG to improve cure rates at a faster pace than any single institution could accomplish alone.

As a nation, shouldn't we prioritize saving our children? The facts on funding suggest we don't. So your help is needed. No child should ever have to ask, "Mom and Dad, what's hospice?"

Please help us cure childhood cancer:

Well, today is September 30th, the end of Childhood Cancer Awareness Month. So, how many of you heard anything about it this past month? Yeah, I didn't hear anything, either. My Facebook is full of gold ribbons; those people get it! They are parents of children with cancer. There are pink ribbons all over everywhere! On cat food, cat litter, salt and pepper shakers, water bottles, coffee cups, etc. EVERYWHERE!!! I don't remember seeing even ONE gold ribbon! The sad thing is, the pink ribbons all stand for support for the Susan G. Komen Foundation. Well, a little known fact of SGKF is that not all of the money they raise goes to breast cancer research. They spend millions of dollars a year on lawsuits! They sue anybody and everybody who uses the phrase "for the cure" (or any facsimile) in their fund raising. I will post a link to the report of what they do. I wish they would give the money that they waste on lawsuits to Childhood Cancer research!! It makes me so angry. I wonder if all the people who think they are supporting breast cancer research really know where their money is going. Yes, I am bitter about this. Our children need help! Our children need a cure! WAY more children die every day from childhood cancer than women. It is the 46/7 rule for kids. 46 children are diagnosed with cancer EVERY DAY, and 7 children die from cancerEVERY DAY! It has GOT to change!! I, for one, refuse to buy anything with a pink ribbon on it. And my favorite color is pink!! Sorry, I will get of my soapbox.
Here is a link reporting the activities of SGKF:
http://www.huffingtonpost.com/2010/12/07/komen-foundation-charities-cure_n_793176.html?ref=fb&src=sp&comm_ref=false

I can't believe this year is so close to being over. It is just screaming by! Our weather is definitely turning to fall!! I love it! All the trees are changing and it is gorgeous! Fall is my favorite season. the only bad part is my allergies are the worst in the fall! So we are living on Sudafed and Allegra (in generic form). Can't wait for the first freeze to kill all the stuff I am allergic to! Bryon and Jennifer are suffering, too. David is a little bit, but I have him pretty drugged up, too.

Thanks for visiting and checking up on David and the Koury Klan. Have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

Sunday, September 25, 2011

SUNDAY, SEPTEMBER 25, 2011

Sorry it's been so long
Good evening.

Wow, I can't believe it has been so long since I posted!! Things have been rather busy. My thoughts have been focused on this time of year, 4 years ago. David had already been to Urgent Care to see why his knee was hurting. That doctor told us he sprained it, as most 13-year-olds are prone to do. He said to ice it, wrap it, and for David to take Aleve for the pain. And it should be fine in 2 weeks; but IF not, take him to his primary care physician. Bryon and I went away for the weekend for my birthday, and I remember being worried about David the whole time. This has been a very long, and busy, 4 years. We still didn't know, at this time, that David had cancer, but we knew something wasn't right. Cancer was the absolute farthest thing from our minds! We would have NEVER guessed cancer!! Especially a cancer we have never heard of! Anyway, that is where my thoughts have been the last couple of weeks.

The end of September is approaching and Childhood Cancer Awareness Month has almost passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen.

Except there's no pushing gold aside. The way is clear for pink. It is frustrating. I really don't blame most people, I wasn't aware that September is Childhood Cancer Awareness Month until it happened to me. I want more funding so there can be a cure, so no other parent has to hear the same words we heard almost 4 years ago. Please get the word out there!!

We have been busy, as I said before. Jennifer is trying to adjust to her new place. She really misses that second bedroom! We had to rent a storage place for some of our stuff, so she is storing some of her 'extra' stuff there, too. And with her helping to pay for it, it is a big help to us!! Poor thing had to move to a much smaller place, but she likes it. And it saves her money!!

David is doing ok. We are starting to get 'scanxiety' as his next set of scans are in less than 2 weeks!! It sucks that this NEVER gets any easier. Actually, as time goes by it can seem to get scarier. Remember, we were told that the word 'remission' is not used for Osteosarcoma. And David still is at high risk for recurrence (duh, it is back in his lungs) so we just pray those stable nodules in his lungs stay stable. It would be nice if they were to just disappear...... *sigh*

I can't believe my precious granddaughter will be 8 months old tomorrow!! Where has the time gone?!?! She is crawling, just cut a tooth, standing up on everything, and just as cute as can be!!

Please continue to pray for the Koury family as we face many changes in our life right now. I have a couple 'unspoken' prayer requests, God knows what they are. Please pray. Thank you.

Thanks for checking in. Have a great evening. God bless you all. We love you.

Kristi and the Koury Klan

Monday, September 12, 2011

MONDAY, SEPTEMBER 12, 2011

Good evening.
Sorry I haven't posted for so long; we have been very busy getting the house all cleaned. I honor of September being Childhood Cancer Awareness Month, I will re-post a 'poem' that I read a few years ago. It is VERY true, as any cancer mom (or dad) will tell you. It brings back many memories for me as I have been there! Here goes:

Cancer Moms I belong to a special group of women My friends and I have an amazing bond. We never wanted to be in this group, Yet we are in it, for life. Maybe we have met, maybe we haven’t, Yet our love for each other is boundless. We know the pain the other one feels, And we share our victories small or huge. Words like chemo, IV, Zofran , bald heads Are always parts of our conversations, As well as roidrage, tears, and meltdowns We always know where the closest puke bucket is, We can hold it in one hand and if necessary, Swallow the sandwich the other hand was holding. We can drive to the hospital , Park in the dark parking garage Make our way thru the halls of the hospital And to the appropriate floor, Settle in a room, turn the TV on, Give instructions to the head nurse, Silence loud beeping IV pumps,


Direct a wagon AND an IV pole To the playroom without hitting anything. Make our way back to the correct room. And all this, mind you, With our eyes closed, at any given time.

We know how to draw blood from lines Sticking out of little kids chests.


We can hold them down with one hand, While a nasogastric tube is inserted in their little nose,


And be on the phone with their dads at the same time. We can live for days on hospital food, And on maybe only one meal a day . We know the names of up to 20 different drugs, Their purpose, dosage and time to be taken. We are always on call, 24 hours a day , Seven days a week. We are used to not always looking our best, Hard to do with only a few hours of sleep. Make up , hair styling, skirts are words of the past . We have become addicted to texting , hospital, clinic, home, wherever… We talk sometimes at all hours of the night , We know we can count on someone to be up.

Then for one of us, the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on. Remember, I said we were in this forever.
We are friends, sisters, temporary nurses, We are each others rock, each others punching bag, We listen, we vent, we cry, we laugh together . We share our lives and our deaths We share our pain and our victories. We are strong, but not by choice , Sometimes we win, sometimes we lose, But never are we defeated. We are not nurses. We are not doctors. We are cancer moms.....

I do not know who wrote that, so I don't know who to give the credit to, sorry. But I know any one of my fellow cancer moms could have written it. We live a life NONE of us want or planned. We know WAY too much about the 'medical field' without the formal training, we had to learn it the hard way. Please help raise awareness for Childhood Cancer. Please remember to pray for all my fellow cancer moms (and dads).

Thank you for checking in. Have a good night. God bless you all.
Kristi and the Koury Klan

Tuesday, September 6, 2011

TUESDAY, SEPTEMBER 6, 2011

Good evening.

Thank you for your prayers for my granddaughter. A couple of the tests they ran came back negative/normal, they are still waiting results on another test. They hope to have the results of that test by the end of this week. Please continue to pray for Jeremy, Lucy, and Elena. Thank you.

I kn
ow childhood cancer isn't just about Osteosarcoma, but I am going to re-post something I posted a couple of years ago. It is a tribute to all the Osteo kids out there~~fellow members of a family none of us want to be part of. Here goes:

Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. I know some of these kids; besides mine. Some I only know through a website; a couple others I know personally. I know these children's lives have forever been changed by an uninvited monster called Cancer~~Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in David's case) from surgery to surgery. And once treatment is over; from scan to scan~~for the rest of their lives!!! I don't know any adult that could handle the brutality of this life, and yet I watched my son and others endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in the children that I have watched go through this than I have seen in all the adults in my life put together! I know I wouldn't handle it as well as these children have. I am so proud of David and the others! They are truly amazing children. I really wish all of you could know David and the other warriors~~you would be richly blessed by these children.


Childhood Cancer does all the above to all children, in different ways, but the end result is the same. They do put life into perspective. We MUST find a way to cure childhood cancer!! Please get the word out there! Please help raise awareness. We have this one month to do it. Then we will be pushed aside for pink and breast cancer. Please! All us cancer parents out there beg all of you to help! Our children are our future!

Thank you for visiting. God bless you all.

Kristi and the Koury Klan

Saturday, September 3, 2011

SATURDAY, SEPTEMBER 3, 2011

Good evening.

Before I post some facts about Childhood Cancer, I have a prayer request. Please pray for my precious granddaughter. She is having some problems, and they were at the hospital with her today. Please pray that the tests they ran come back negative. Thank you.

Here are some very interesting facts concerning Childhood Cancer. I think it is high time that it gets some attention. IT IS ABSOLUTELY A PLAGUE IN THE US: DID YOU KNOW? * In the U.S. almost 3000 children die from cancer each year, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. * Cancer is the number one disease killer of children between ages of 1-20 *1 in 330 will be diagnosed with cancer by age 20. *The incidence of childhood cancer has increased EVERY year for the last 25 years! * In the past 25 years ONLY ONE new cancer drug has been approved for pediatric use. Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments. *At the time of diagnosis in children, the cancer has already spread in 80% of the cases. That is compared to the 20% in adults *As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year. * The National Cancer Institutes federal budget is about $5 Billion. Less than 3% of the budget goes towards all pediatric cancers combined. The rest goes toward adult cancers. Breast cancer alone receives 12%. Prostate cancer receives 7%. *The government recently cut the budget for Childhood Cancer.
You can make a difference. Write to your representative and congressmen telling them you are outraged by these facts.

Thank you for visiting. Have a good evening. God bless you.

Kristi and the Koury Klan

Thursday, September 1, 2011

THURSDAY, SEPTEMBER 1, 2011

September is Childhood Cancer Awareness Month. Each day, 46 children are diagnosed with cancer. Each day, 7 children die as a result of childhood cancer. It is the number one killer disease of our children, more than more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Did you know that 1 in 300 children will be diagnosed with cancer before age 20 and that 35-40,000 are in treatment every day? Yet only 3% of all cancer research money goes to childhood cancer. Our war against childhood cancer is vastly under-publicized and under-funded. It is the Inconvenient Truth America needs to be aware of.

I don’t know how many of you readers have ever been on a pediatric oncology floor. If you have ever walked the halls and seen the smiles or tears on the faces of these little fighters as they play on the little trikes and big wheels. How the moms and dads race behind them with the ever present IV pole. How they have little child-sized masks on because they are at high risk of infection. How the teens hang together and still try to be cool, even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate, hydration, and limb-salvage; and acronyms like ANC and GCSF to their vocabulary, instead of LOL and "sweet". How the poor little babies cry because they can't even relate what hurts. Or if you've ever seen a mom or dad alone in the parent room at 3 am, with their head in their hands, feeling alone, helpless, scared, and mad. I don't know if you've ever visited a Care Page or a Caring Bridge site besides this one, blogs where we tell our kid's stories. How many people do you know who have quit reading your blog because it is too uncomfortable (I know that first hand; a specific member of my family won't read this; someone who I thought would care about David. Guess I was wrong!)? I've seen it all and more. I have seen enough. I have lived through it. I am still living it. I will forever live it. My child is one of those teens, and I am one of those parents. We need awareness and funding. We need a cure!

Again, enough said. Thanks for visiting. God bless you all.

Kristi and the Koury Klan