MONDAY, SEPTEMBER 24, 2012

Please Pray

Good evening. 

Quick update. Please pray for David tomorrow morning at 10:45. He has a job interview. It is only a temporary job, from October 1st through December 31st, but could turn into something permanent. Please pray for David to be able to speak up and talk to the interviewers (3 of them). He is such a shy, withdrawn young man, and he needs to 'get over it' so to speak. He is understandably nervous, but also kind of excited to get the job. He is so limited in what he can do with his physical disabilities that it is difficult to find a job. Plus, Nevada is #1 in unemployment..... Anyway, this is a data entry job, so he doesn't have to stand all day (which he cannot do), or do a lot of walking (which he also cannot do), so this will be the perfect job for him. Please pray for him to be calm and to do well in the interview. Thanks. 

Kristi and the Koury Klan 

Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects. 

THURSDAY, SEPTEMBER 20, 2012

Still September

September is a disease awareness month, which you probably recognized by the gold ribbons displayed on all the corporate advertising on TV and in magazines and the special media reports. 

What’s that? You haven’t seen any? That’s because, for some reason, this class of diseases attracts hardly any public attention. 

If I said “pink ribbon,” you would have immediately thought of breast cancer. “Red ribbon” might be a little trickier, but eventually you would have come up with heart disease. 

But the gold ribbon is nearly invisible. 

It represents childhood cancers. 

Today, as you read this, the equivalent of a classroom full of children will be diagnosed with cancer in the U.S., more than 12,400 a year. About 4,000 child cancer victims will die this year, making cancer the number one disease-related killer of children under 14. 

While 75 percent of childhood cancer cases are curable, for some forms, a cure remains illusive. 

Only one new cancer drug has been approved for pediatric use over the past two decades. For some of the rarest, but most deadly, childhood cancers, no new treatments have been introduced in more than three decades. 

For every one child diagnosed with pediatric AIDS, 15 children are diagnosed with cancer, yet available funding dollars designated for research are vastly disproportionate: $595,000 for each AIDS victim and only $20,000 for each pediatric cancer victim. 

Federal funding for breast cancer research is more than double that for all 12 major groups of pediatric cancer combined. 

The end of September is approaching and Childhood Cancer Awareness Month has 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. 

Even the American Cancer Society -- the outfit that professes to represent all cancers and provide support for everyone affected by the disease -- the organization for which we all come together and raise funds by holding a Relay each year -- has chosen not to recognize Childhood Cancer Awareness Month. 

Go to www.cancer.org and what do you see? The banner at the top of the page is pink and touts the ACS' commitment to fighting breast cancer. 

What if the focus that remains on breast cancer was turned to pediatric cancer? 

I know millions of women are affected by breast cancer. But almost all of them are effectively treated. 

Only thousands of kids are affected by cancer. But many -- perhaps most -- of them die. 

I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold -- more in terms of funding for research, but also in terms of awareness -- to usher in the pink. 

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families. 

Will you spread the word to someone who doesn't know today? Send an e-mail. Copy this to your blog, your facebook, your twitter. Write a letter to a corporation or a legislator. Or to an editor. Whatever it takes. Our children are our future. We need to help give them a chance to live. We need a lot more funding going to childhood cancer research. Please help. 

Kristi and the Koury Klan 

SUNDAY, SEPTEMBER 9,2012

PLEASE READ THIS.....THIS IS HOW WE ALL FEEL. HOW WOULD YOU LIKE TO FEEL THIS WAY?? 
  
**This is copied from someone else's status. It totally hit home :( ** 
  
Did you ever think that the phone could ring and in a matter of a few seconds your life could be forever changed by just a few words…your child has cancer? Neither did I. 
  
Did you ever think that you could hurt so badly (emotionally) that the 
physical pain of it would be almost unbearable? Would you believe you could feel this way and not shed a tear…for weeks? Because your child is watching. 
  
Did you ever think you could call the local children’s hospital 'home?' 
  
Did you ever think that there would be a day when the family/child featured on the news and in the paper as the reason for fundraisers to help cover medical expenses would be yours? Me either. 
  
Did you ever think that you would learn the hard way that the very people who you would have bet would have stood by you and your family in difficult times would be the ones to turn their backs on you or turn on you altogether? 
  
Did you ever think that mere acquaintances or even strangers could become your lifelines and be the very hands of God to you and your family in your darkest days and your times of need? 
  
Did you ever think that you would have to watch as medical professionals donned gloves, masks and gowns to protect themselves from the chemo (poison) they inject into your child in hopes of saving his life? 
  
My child was the first pediatric cancer patient I ever met. Unfortunately I now know that it is MUCH too common. Why don’t we see these kids? Because they are in hospitals or home because of compromised immune systems or…they don’t make it. 
  
Did you ever think that you would have to sit in a conference room and make the decision to treat your dying child with a drug that is likely to cause heart damage, brain damage or secondary cancers later in life? Notice I didn’t say possibly, I said LIKELY. 
  
Did you ever think that there would be a day when you could catch a glimpse of your child as he walks through a room and be compelled to follow him, feel him, stare at him, and compare him to siblings side by side because he might look like there is something a little “off”? Did you ever think that these impulses would last for years and that most cancer moms admit that they last a lifetime. 
  
Did you ever think that the glimpse mentioned above can turn your “normal” day into a nightmare complete with the “kicked in the gut” feeling you are all too familiar with these days? 
  
Did you ever think that your purse/car/kitchen junk drawer would all contain tubes of numbing cream, bulldogs (clips for holding a central line up and out of the way), detachol (medical adhesive remover), zofran (for nausea), a thermometer, and 5/8 needles (because home health always brings the ¾ size that don’t work on a fickle port). 
  
Did you ever think you would have to explain to your other children that their brother might die? 
  
Did you ever think you would have to tell your child that his friend, another child with the same dx, has died? 
  
Did you think you would ever have to see the fear in your child’s eyes that relapse could happen to them, too? 
  
Did you ever think that you would watch your child’s doctors talking in the hallway and try to read their facial expressions to prepare yourself for what you are sure is bad news? 
  
Did you think you would ever have to stifle the anger that you feel when people or organizations brag about the millions of dollars they have spent to “beautify” buildings, cities or whatever when you know that if that money had been spent on pediatric cancer research there would be many, MANY more survivors 10 years from now. 
  
Did you ever think that you could feel guilt when your child is doing well and others are not. 
  
Did you ever think that even when your child is doing exceptionally well that your joy could be robbed with fear and dread ? Of course, you just read another child’s blog and learned that while he seemed perfectly happy and healthy 10 days ago he has since been dx’d with relapse and is in the PICU in a coma and brain damage and might not live through the night. This child could be your child in 10 days. 
  
All of this has happened to us. September is childhood cancer awareness month. Every single day 46 children are diagnosed with cancer. Every single day 7 children die of cancer. The incidence of cancer has increased 30% in the past 30 years. We don’t know why. Cancer most commonly affects previously healthy children with no history of pediatric cancer in their family. 
  
Cancer is an equal opportunity disease. It doesn’t care if you are wealthy or poor, male or female, young or old, black, white or any other color or where you live. All of our children are at risk. Cancer is the number one killer of children by disease. More than AIDS, asthma, and cystic fibrosis combined, yet only one new cancer drug has been created in the past 30 years. 
  
I borrowed that from another family and it is so true. I thought cancer happened to other kids before David was diagnosed, and I'm sorry that I was so blind. 

On another note; David had his oncology appointment and it went ok. He has lost several pounds, however. His appointment to discuss treatment for his abnormal hydrogen breath test will be on October 4th. We cannot wait for that appointment!! We need to get his problem fixed! And only in bizarre-o world do you want an abnormal result for a hydrogen breath test! So we are anxiously awaiting October 4th!! 

Thanks for visiting and checking up on David. Please get the word out there that we need awareness for Childhood Cancer!! My dream is that NO child ever is diagnosed with cancer!!! Have a good evening. God bless you all. We love you. 

Kristi and the Koury Klan 

WEDNESDAY, SEPTEMBER 5, 2012

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 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. 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. 

Kristi and the Koury Klan 

SUNDAY, SEPTEMBER 2, 2012

September!

Good evening. 

We are back from camping. We were gone for 10 days, and we had a great time!! It is bittersweet to be home. It's good to be home, but we know it is the last time to go camping for the year, and that is kinda sad. But we really had an amazing time! The weather was perfect! The nights were a bit chilly, but the trailer has a great heater, and I was wearing my sleeper, so it was cozy at night. 

This is September, and September is Childhood Cancer Awareness Month!! 


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 there 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! 

Remember I asked you to pray for Fiona? Well, please pray for her family; she lost her battle with Osteosarcoma on Friday. We lost six Osteo kids in August. Please pray for all our Osteo family members. Thank you. 

Kristi and the Koury Klan