THURSDAY, NOVEMBER 29, 2012

Update on Elena

Quick update on my precious granddaughter......she has hand foot andmouth disease. She is miserable! She has blisters in her mouth, around her nose and mouth, and on her feet. He legs are covered in a rash and she refuses to wear pants. They have her eating otter pops, so that will help with the sores in her mouth. It breaks my heart. I remember how miserable David was with the mouth sores from chemo, and poor Elena has the mouth sores (blisters) from this disease. Please continue to pray for her. Please pray that she recovers quickly from this. They have been staying home with her, and I really miss her!! My house is too quiet without my little princess!! Anyway, I just wanted you to know what is going on with my granddaughter. Thank you for the prayers! 

Kristi and the Koury Klan 

TUESDAY, NOVEMBER 27, 2012

Good afternoon. 

I am so sorry I haven't updated in so long. I hope everyone had a Happy Thanksgiving. We did. It was the 8 of us, and it was a good day. Rachel and I made cookies the week before, and we had a few more to make Thanksgiving morning. I can't believe another Thanksgiving has come and gone. We do have so much to be thankful for. Life is not perfect, but we are still thankful for so much. 

David is now on the antibiotics~~2 VERY strong ones! He will be on them for another week, then 2 weeks of a probiotic. Please pray for him as he is having side effects of the antibiotic. He is still working, and struggling with the side effects at work is NOT fun. Just please pray for him. Thanks. 

Could you also please pray for my precious granddaughter? She has been sick for a few days now. My son says she is a trooper and tries really hard for life to be normal, but it is obvious that she doesn't feel well. Yesterday Lucy stayed home with her, today Jeremy stayed home. Please pray that she is back to her healthy self soon! Thank you. 

Well, that is about it for now. Thank you for your prayers, please keep them coming. Thanks for visiting and checking in on David and the Koury Klan. God bless you all. We love you. 

Kristi and the Koury Klan 


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. 

SUNDAY, NOVEMBER 4, 2012

News

Good evening. 

Well, we got the reports in the mail yesterday. It wasn't all good news. David is still stable, and that is very good news! However, the cancer has spread beyond his lungs. There is a calcified spot in/on his spleen. They can't tell if it is on the outside or inside his spleen. BUT; it is stable!! Apparently we are on a 'need to know' basis with Children's Hospital, and this spot has been there for 3 years! I know they never tell us the first time they see something, they wait to compare it with the next scans. So, this spot has been there for awhile, but it is stable, just like the lung mets. It is very disconcerting to us to know it has spread, but we are so thankful that David is still stable, no active disease. Thank you for your prayers, please continue to pray that David stays stable....forever!! We are definitely going to keep a very close eye on the future reports, that's for sure!! Of course his gall stone is still there. But the bottom line is, he is stable!! Yay!! 

Thank you for checking in on David. Please continue to keep him in your prayers. Thank you so very much. God bless you. We love you. 

Kristi and the Koury Klan 

Everyone who is in your life is meant to be a part of that journey, but not all of them are meant to STAY. 

WEDNESDAY, OCTOBER 31, 2012

Finally!!

Good evening. 

Well, I finally got a hold of Connie. She said that everything is the same, and I will be getting the reports in the mail this week. Once I get those reports, I will let you know what they say. But at least we know that David is still stable, no new nodules!! Yay!! 

I realized I never posted about David's appointment in San Francisco. It went well. We were told David didn't need an xray, but we didn't think that sounded right. Well, they have a new computer system and we DID need to get an xray. We just said we would go after David's appointment. As far as the appointment went, Dr. O'Donnell was so happy to see David, as usual. He was the first one to tell us that David wouldn't live 5 years. He always lights up when he sees David, and gets the biggest smile on his face!! Twice in this appointment he said to David, "You make me proud." He said David's legs are about 3mm different, but that is no big deal. He said it isn't even enough to need a lift in his shoe. He was so glad to see David alive and walking!! After the appointment we went to get the xray. Usually we are in and out in about 15 minutes. Well, after over an hour; with people who came after us being seen; Bryon asked how much longer it would be. Well, to make a long story short, they lost the paperwork! So they had to print up another order, and David got his xray! It was frustrating because we wanted to go home!! Anyway, I got a call from Dr. O'Donnell the next day and we were told there is no sign of a local recurrence!! Oh, we already knew that, because Dr. O'Donnell said that David is so thin that a local recurrence could never hide, it would be very obvious!! So that is good news. All good news on David's scans!! God is definitely not finished with David yet!! 

I thank you for your prayers, they are working!! We need to just keep praying that David's scans continue to be stable! Thanks again! 

Update on the probiotic David is taking.....it's not working, he is still having the same issues. I guess the next step is call the GI doctor and go ahead with the antibiotic/probiotic route. Grrrr. We were really hoping the probiotic would work. Please continue to pray for David's health. Thanks! 

Thank you for visiting and checking in on David. Sorry I didn't update sooner, I wanted to get the news from Connie before I did. Please continue to pray for David and the Koury family. Some unspoken prayer requests; God knows what they are. Thank you. God bless you all. We love you. 

Kristi and the Koury Klan 

Hope is ours for the taking every single minute. It's the assurance that things will make sense when there's no sense to make of things. 
~Luci Swindoll 

MONDAY, OCTOBER 22, 2012

Good evening. 

Well, we made it to Oakland safely. We left around 4:30, and it was starting to sprinkle a bit as we left. Then, as soon as we turned onto highway 50 it started to snow! And it snowed rather hard, and the road was a bit slushy. We were even behind a snow plow for awhile!  It was beautiful, but it was dark so we couldn't really see much, except what was in the headlights! Traveling in the snow to Oakland brought back MANY memories. And we were, once again, SO thankful for our Honda Pilot. There were chain requirements, and the inspector look long and hard at our tires and waved us on and told us to be safe. David got quite car sick; as always! Some things never change. As soon as we got low enough to get out of the snow, it rained the rest of the way. Poured! But we did make it there; exactly at 9:30 when we were supposed to be there for check in. So we checked in, and then waited. Of course, it is always rush to get there, so we can sit and wait. Anyway, David had the injection for the bone scan at 10:00, chest CT was scheduled for 11:00, but he got in a few minutes early. Then it was wait until the bone scan at 12:30. David did NOT want to eat in the hospital cafeteria, so we just didn't eat at all this morning. By the time everything was done, we got to the hotel around 2:45 or so. Then we unloaded our stuff and walked across the street to eat, finally! We went to Fuddrucker's, and then came back to the hotel to relax. We decided we will just veg in the hotel until we have to leave in the morning. So that is where we are now. We can't wait till tomorrow is over and we can go home!! Thank you so much for your prayers, we made it safely here because of them! It is supposed to snow tomorrow, too, so please continue to pray for us as we go to San Francisco and then home. Thank you. 

Well, that is about all for now. Thank you, again, for your prayers. Thank you for checking in on David. Please pray he doesn't get car sick on the way home. Thank you. God bless you all. We love you. 

Kristi and the Koury Klan 


Whether their children are in remission, cured, or still in treatment, parents of kids with cancer never really relax. Your mind tells you if it happened once, it could happen again. 

SATURDAY, OCTOBER 21, 2012

Prayers needed

Good evening. 

Quick update. We leave tomorrow morning for Oakland Children's Hospital and UCSF. Please pray for our safety; we have come full circle and there is a storm coming in!!  We will be hitting rain and snow in the mountains. We aren't really upset about that; we love the storms! And we still have the Honda Pilot that does great in the weather! But we would still appreciate your prayers. 

Scanxiety is pretty high right now with us. Please pray that the nodules in David's lungs are stable, and that there are no new ones. Thank you. 

Here is a link to a video my daughter, Rachel, made. Please watch it. It is just a very tiny example of what David went through. My daughter did an amazing job on this video. Warning, have tissues ready! 
http://www.youtube.com/watch?v=oUIRBQDXUwY 

Well, gotta get ready for bed, must leave very early in the morning. I will try to post tomorrow, if I can, on how the trip and scans went. Then on Tuesday we head to San Francisco for David's appointment with his surgeon. Thank you for visiting and for checking in on David and the rest of the Kourys. God bless you all. We love you. 

Kristi and the Koury Klan 

We are continuing to see late deaths of children presumed “cured” due to late relapses, toxicity and secondary malignancy. 

SATURDAY, OCTOBER 6, 2012

Finally an update

Good evening. 

Sorry I haven't updated before now. Things have just been busy, and I really hate spending time on the computer! I get bored really fast!  :) 

Anyway, here is what happened at the doctor. He said David has 3 options: #1~~take a Rx probiotic for a month and see what happens, see if David gets any better; #2~~take an antibiotic for 2 weeks and then a probiotic for 2 weeks and see if David gets any better; #3~~do nothing. Clearly option #3 is NOT an option, and the doctor didn't recommend it, but had to offer it to him. David chose option #1. David said he wanted to do the least 'invasive' of the options first. He didn't like hearing about the side effects of the antibiotics, and said if just doing the probiotics doesn't work then we will explore option #2. The doctor gave us a month supply of the probiotics, yay! It has to be kept in the fridge because it is live freeze-dried probiotics. The doctor said it should kill the unhealthy bacteria in David's small intestine while not harming the healthy bacteria. If it does work, he will be on probiotics for the rest of his life, but that is no big deal! David said, "It's no biggie, just another pill to take twice a day!" Please pray this works!! He really doesn't want to do the antibiotic route. He has already taken 4 pills~~~not helping yet! He was just told to take it for a month and then give the doctor a call and let him know the results. The doctor said that the surgery removed part of his colon and the small intestine (including that valve), and that is part of David's issues. The other issue is the chemo that David had destroyed part of his intestine; it just doesn't work like it is supposed to. He kept saying that David has just been through so much; and we agree!! Too much!! Hopefully the unhealthy bacteria will be a thing of the past soon!! So that is the happs with the doctor appointment. 

David completed his first week of work! He did great. He is nervous and excited for Monday. He will be learning new things on Monday, and that makes him rather nervous, and excited at the same time. We are so proud of him. I knew this day would come, when all my children would be working and gone all day, but I'm not sure I was ready for it! I miss having him home with me! He's my last one still at home! I am so glad he has beaten the odds and has lived long enough to get a job, it's just strange to have him gone all day. He is well-liked, no big surprise, and does a good job at work, so we are hoping that someday this will turn permanent. He rides his motorcycle to work now, but that will be changing once it gets cold! He will have to take my car, but that's ok. Please continue to pray for him; pray for his safety as he rides to and from work. 

Well that is about all that is happening around here. Thank you for checking in on David. Please continue to keep him in your prayers. Also, please pray for one of our Osteo family members. I have mentioned Sonya before; she starts chemo again in a couple of days for a relapse, and her dad died yesterday from lung cancer. Please pray for Sonya, and her mom and sister. Thank you so much. God bless you all. We love you. 

Kristi and the Koury Klan 

Whether their children are in remission, cured, or still in treatment, parents of kids with cancer never really relax. Your mind tells you if it happened once, it could happen again. 

TUESDAY, OCTOBER 2, 2012

Sorry for the delay

Good evening. 

I am sorry I haven't updated with the results of David's interview! It has been very hectic around here! He had the interview, and he got the job! It is only a temp job, but that is ok! He started yesterday and he said he likes the job. It was kinda sad for Bryon and I because we had planned a trip to Arizona to visit our friends, and we weren't there for David's first day of work! We left for Arizona on Friday, and didn't come home until last night. I really wanted to be there for David's first day of work, so I could pray with him before he left......I've done that with all my children. It was good for him, but hard for me! He is my baby, and it was difficult for me to not be there for this momentous occasion! But, anyway, he had a good day, and he likes it. I am so glad that it is a positive experience for him. He was extremely nervous yesterday, but not at all today. He doesn't even dread going to work! So thank you for all your prayers. Now please pray that this could turn into a permanent job! That would be great! 

David's appointment with the gastroenterologist is on Thursday. Please pray that it goes well. We will finally get the 'official' results of the hydrogen breath test, and we will get him started on antibiotics. He had to call the temp agency and let them know about this appointment. The place he is working already knew; he mentioned it in the interview. They also know that he will be gone October 22 for scans in Oakland and October 23 for his appointment with Dr. O in San Francisco. But he had to tell the temp agency. Anyway, we can't wait to get this appointment over with!! 

Our weather has finally turned the corner and it is getting cooler. It definitely feels like fall is in the air!! Sooooo glad we don't live in Arizona! It was 102 and 103 when we were there!! I do NOT like it that hot! Our friends do, however. We think they are crazy!! I am so glad to see it getting cooler. I love having my windows open and have the cool breeze blowing in. Great sleeping weather! 

Well, that is about it for now. I will try to update after David's doctor appointment on Thursday. Thank you for checking in. Have a good evening. God bless you all. We love you. 

Kristi and the Koury Klan 

September is Childhood Cancer Awareness Month…the general public is not aware of this! 
The Gold Ribbon is the symbol for Childhood Cancer…the general public is not aware of this either! 
The fact that September is Childhood Cancer Awareness Month and that the Gold Ribbon symbolizes Childhood Cancer goes largely unrecognized across our country. 

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