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 He is such a shy, withdrawn young man, and he needs to 'get over it' so to speak.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 

THURSDAY, AUGUST 9, 2012

Good morning! 

I just wanted to let you know that David and Jennifer both passed the riding part of the motorcycle class. YAY!! Monday I took David to the DMV to get the endorsement on his license. He will get the actual license in the mail. He is so excited!! He went out riding yesterday, and had a blast! Jennifer was able to go yesterday on her lunch break to get her endorsement. So she will be waiting to get her actual license, too. She is really excited. She was able to ride her bike (motorcycle) to work today. She said she did fine. They are both really excited to have their licenses. For David, it is something else on his list of 'living life to the fullest!' We don't know how long we have with him, so we want him to experience all he can in life!! Thank you for your prayers!! They both did great at the class, and on the test! You are allowed to miss 20 points, David only missed 1; and Jennifer only missed 6! They did fantastic! Since we don't have an 'extra' car for David to drive, he can ride his motorcycle! So when he gets a job (won't be easy with NV being one of the hardest hit state in this economy; highest unemployment) he can take his motorcycle to work!! I have Elena, I can't be without a car!! Anyway, I just wanted to say "Thank you" for your prayers. Now just keep an ongoing prayer going for their safety! 

Sonya is having her biopsy today, I will keep you posted on what the results are. Please pray it is NOT osteo! Thank you. 

Thanks for visiting! Have a good day. God bless you all. We love you. 

Kristi and the Koury Klan 

"Things have a way of working out. Never underestimate the power of prayer, faith, and love & above all NEVER underestimate the power of God to see you through!" 

SATURDAY, AUGUST 4, 2012

Good evening. 

Things are going about the same around here. David is back on his Prevacid, so feeling a bit better. At least he's not in pain from his ulcer!! Now we wait for the appointment to get his treatment plan started for the bacteria!! 

Please pray for him and Jennifer. They are taking a motorcycle safety class to get their motorcycle licenses. Jennifer already has a motorcycle, and David can ride Bryon's 'old' one. Anyway, the class was Friday night, all day today, and tomorrow. Today they took the written test, and passed it!! Tomorrow they take the driving (riding) test. Please pray they pass it. I really don't think it will be a problem, but I would still covet your prayers for them. They are doing really good on the bikes!! Jennifer wants her license so she can ride her motorcycle to work and save on gas!!! We just wanted David to take the class so he can have another 'normal' thing for him to do. He had a dirt bike BC (before cancer), but we had to sell it because it was a kick start and he cannot do that with his right leg. So now he can ride Bryon's old dual sport bike! Please pray they pass the test. Thanks!! 

One exciting thing that has happened to us is we got a hot tub. We were talking to some friends of our about the barter system and how we love it! We told them a good example of that was our hot tub. Some other friends of ours moved to Arizona, and didn't want to take the hot tub. We told them we have a brand new generator that we don't want (we already have one, and that new one was free); so we said we would trade the hot tub for the generator. I know that doesn't seem like a fair trade, but the hot tub is really old, and that's the point of the barter system. You have something I want, I have something you want, let's trade. As long as everyone is happy, it works!! So now we have a hot tub. Can't wait until winter when we can go in it when it's cold outside. Even thought it's summer, it is still nice to sit and relax in it. David is loving it, he is in it most nights, as am I!!! 

He had a good time at the camping trip with his bible study group. And now he is counting the days until we go again! We will be camping 3 weeks from today!! I can't wait. There has been a tiny change in plans, however. It won't be just me and David. Rachel will be joining us for a few of the days. But that is ok with me!! I love spending time with my children. Pretty soon she, too, will be moving out. So I like to spend all the time with her that I can while I can. We can't wait to go camping. 

That is about all the news for now. Oh, please pray for another member of our Osteo family, Sonya. She found a lump around her original tumor site, this time in the soft tissue. They are afraid it is a recurrence of her osteosarcoma. Please pray that it is NOT osteo, but something else. Thank you. Thank you for all your prayers and support. God bless you all. We love you. 

Kristi and the Koury Klan 

"The most memorable people in your life will be the ones who loved you when you weren't very lovable." 

WEDNESDAY, AUGUST 1, 2012

Good afternoon. 

I couldn't wait to post this. We got news today about David's hydrogen breath test. First off, the test went fine, Elena did great! She watched 'Finding Nemo' and colored. She is such a good girl! 

So, David drank the sweet, syrupy liquid and then we waited. Then the nurses came in every 15 minutes for him to blow into a breathalyzer thingy. The test was to take up to 4 hours; we were there for 90 minutes. I wasn't sure if that was a good thing or a bad thing that it didn't last as long as scheduled. Well, I guess it meant that the 90 minutes was long enough for them to get answers. The result is ABNORMAL!! Remember this test was to determine if the bacteria that is supposed to be in the large intestine is getting into the small intestine; because David is missing the valve that keeps it out. And that is the answer we were hoping for. All the other tests we had done on David came up normal, so we were hoping this one would give us some answers. We weren't sure where we would go from here if this test came up normal too!! All the while we were waiting for this test David was in pain and having issues with his health. Thank you for your prayers!! David has a follow-up appointment to discuss treatment. We already know that the treatment for this is a course of very strong antibiotics to kill the bacteria, then a course of probiotics to put the 'good' bacteria back in the large intestine. We were told this is a cycle that will be repeated yearly, but that is ok!! At least we know what we are up against! Finally!! 4 1/2 years after his intussusception and resulting bowel resection we have answers! Whew. It is such a relief. 

I wanted to post this as soon as I found out. I can't tell you how much I appreciate your prayers. God bless you all. We love you. 

Kristi and the Koury Klan 

"Spend your time on those that love you unconditionally...Don't waste it on those that only love you when the conditions are right for them!!!" 

MONDAY, JULY 30, 2012

Good morning. 

Quick update~~~sorry I forgot to post this earlier, been very busy. 

David is having his hydrogen breath test this morning at 8:30. We have to check in at 8:15. Please pray that we get some answers from this test. We need to know why he has no appetite, poor weight gain, frequent nausea, etc. Please pray that the test goes well. Also, please pray for me as he is taking this test. He wants me there, and I have Elena, and it is a 3-4 hour test. Basically he drinks this medicine and then he blows into something (I'm not sure what) to measure hydrogen in his breath. He has to blow into the thing every 15 minutes for 3-4 hours. Please pray that Elena can handle being there for that long. I will bring my laptop and some movies for her, so hopefully that will work. Thank you so much for your prayers!! 

I will let you know what we find out as soon as I can. God bless you guys! Thanks! 

Kristi and the Koury Klan 

TUESDAY, JULY 24, 2012

Good evening. 

David is getting very excited; he is going camping with his Bible study group on Wednesday! He will meet at the church at 2pm on Wednesday, and return on Friday around noon. He has been waiting for this for a long time! He really enjoys camping, in case you didn't know that.  :) Please pray he has a good time, and he stays safe. This year he won't be going a few weeks after surgery, as in previous years. So he should have more fun than before!! Yay! 

We have another camping trip planned, just for me and David. We will leave on August 24th, and come home Sept. 2. The rest of the family will be there on the weekends, but just David and I from August 27-30. We both can't wait for that camping trip! It will be a lot of fun! 

I have to get David's prescription filled on Friday; he will have the hydrogen breath test on Monday. We can't wait for that test to be over. We are praying we find some answers for his issues. We are actually praying that the errant bacteria is the answer!! If not......we don't know where to go from there! Please pray that we get some answers!! Thanks. 

Otherwise, David is doing okay. His leg does hurt sometimes, but we know that is something he will deal with for the rest of his life!! He just has to be careful to not overdo it. He is loving driving. He loves the freedom he has now. He just needs to get a job and get a car!! He usually uses my car, but I don't mind. But it would be great for him to have his own car. 

That is about it for now; or at least all I can think of! I am pretty tired and it is late. Thank you for visiting and checking in on David and the Koury Klan. Have a good day tomorrow. God bless you all. We love you. 

Kristi and the Koury Klan 

Cancer treatment can cause serious side effects that may last a lifetime

WEDNESDAY, JULY 4, 2012

Happy 4th!!

HAPPY INDEPENDENCE DAY!!! 

Good evening. I hope everyone had a great July 4th! Bryon is up in Sparks with David at his traditional Fourth of July fireworks show! It's called 'Star Spangled Sparks' and they go every year. It is good bonding father/son time! And they always stop and get a Slurpee on the way home! It is a bit windy, so hopefully they won't cancel it. I know, it's always windy here...... 

We had such a fantastic time camping!! It was so much fun. Elena was such a joy. She got plenty dirty, as she was supposed to do :)  We really had a blast. We froze the first few days, the nights were in the 30's, (I'm really glad the trailer has such a good heater) but then it warmed up and was really nice. We didn't want to come home, we would have gladly stayed another week; or more! But I did need to come home and do laundry! Bryon and I finally got the trailer cleaned out today. I am still washing sleeping bags, however. But the inside of the trailer is clean, swept, and mopped. Bryon even cleaned the seat cushions!! We can't believe the week we were so looking forward to is over! Bummer. But we will be going again this summer! We just have to figure out the best time to go. Poor Elena did come home with some bumps, bruises, cuts, and scrapes.....but I guess that was to be expected from a 17-month-old!! I just had so much fun with her and David and Jennifer. 

David's hydrogen breath test has been rescheduled for July 30th. Grrrr. We just want this over with! Poor kid. Please pray that it will NOT be rescheduled again! Thanks. 

The picture I posted on this post is of Lake Davis. Isn't it beautiful? Now you know why we love it there and want to go back. Our campsite was about 90 seconds walking distance from the lake, and we could see the lake from our campsite. 

That is about it for now. Thank you for checking up on David and the Koury Klan. Please keep David in your prayers as we await, again, the hydrogen breath test. God bless you all. We love you. 

Kristi and the Koury Klan 

'I love listening to lies when I know the truth.'

WEDNESDAY, JUNE 13, 2012

Good evening. 

One year ago today David had his revision surgery. One year and two days ago David graduated from High School. Where did that year go? 

I got a call from Connie today. Very interesting phone call. She said she did some research for us on where David stands; as far as his cancer goes. She said she doesn't really know what to tell us. She said David has outlived his prognosis. She said, "David is one-of-a-kind. He is very unique. He had a big tumor with poor necrosis; that's bad. He had lung mets that didn't respond to treatment and grew and multiplied; that's bad. Basically, he shouldn't be alive right now. In October he will be four years out of treatment, and there is no protocol for him." See, they told us he wouldn't be alive right now, and she just reinforced that point today. Maybe he will make the medical books! She has no explanation as to why he is alive, she is very surprised! She said she can't really give us any definitive new prognosis, but said they are going to keep a close eye on his lungs. She said that is what 'concerns' her the most. It was a really strange phone call. She almost acted like she didn't know what to say, because David has them surprised. We always did call him our curve ball thrower; this time he threw the curve ball in a positive way!! We definitely have had to learn to 'expect the unexpected' with David. Praise God!!

I called Dr. O and David's next appointment is October 23rd. Now I have to email Connie and ask to have scans done on October 22nd, so we only have to make one trip to the Bay Area. Please pray that we can orchestrate everything to work out. With the price of gas, we can't afford two trips to the Bay Area! Thanks! 

Our weather is very interesting! All my Carson City readers will agree with me on that! Two weeks ago it was cold, and snowy! Yup, snowy! Then a week later it was high 80's. We have been in the pool a few times. It is just funny, we go in the pool for a few days, and then it gets cold. But we will be having 80's now for the next week or so, so we will be going back in the pool again! David just said tonight that he can't wait until we can go in again. He really loves being in the pool. The water gets nice and warm, when we leave the cover on between uses, but it is always windy here so sometimes it is hard to get out of the pool! When that wind hits you, yowsa! We have taken Elena in a few times, and she loves it!! We are thankful that we have a pool. 

Please continue to pray for our Osteo family member, Rachel. She has her not so bad days, and her bad days. Please pray for her and her family. Thanks.

Please continue to pray for David as he awaits his hydrogen breath test. He is having daily problems with his ulcer, and he can't take the prevacid. I am tired of seeing him in pain. Please pray that there will be a cancellation next week so he can get the test sooner. Thanks.

That is about all that is happening around here. David and I are just counting the days until we go camping! We can't wait. Please continue to keep David in your prayers. He has already beaten the odds, please pray that he will continue to do so. Thank you so much for your prayers. God bless you all. We love you. 

Kristi and the Koury Klan 

"Family isn't always blood. It's the people in your life who want you in theirs; the ones who accept you for who you are. The ones who would do anything to see you smile & who love you no matter what."