THURSDAY, FEBRUARY 12, 2015

Latest Journal Update

Update

I am so sorry I haven't updated yet. I have been so busy with my granddaughters, and life, and I am exhausted by the end of the day. So, here is the news.

The biopsy went well. David's PTSD kicked in and he struggled a bit being there, but he did well. It was hard on all of us; the sights, smells, and everything. Lots of flashbacks! We did get to see one of his nurses that took care of him when he was in the PICU and when he was getting chemo. She was there with him for a little bit before his biopsy. Her name is Wendi and she remembered David. We also saw the doctor (Wendy Su) who did his thorocotomys. She said he looked totally different, and she was thrilled to see him doing well. Anyway, the surgery was about 35 minutes, and then he had to stay in recovery for about an hour and a half. Then we went home!! We stopped at Chick-Fil-A on the way home; the only 'fast food' David will eat. He was a bit nauseous on the way home, a result of the anesthetic, but he handled it well. He is such a trooper. They had to use dermabond (surgical super glue) on the incision because David is allergic to all adhesives. Then we waited.

Here is the result of the biopsy~~~drum roll please~~~it was a cyst! They said it was probably a lymph node that got inflamed and stayed inflamed for some reason. then it just became a mass of tissue; NO CANCER!!! Woohoo! Praise God. Now we are just waiting for the incision to heal. David is no longer in pain, so that is good. The incision site looks good, just still has some dermabond still stuck to it, they used a LOT. But we are so glad that is over. Thank you for your prayers.

Now we wait for the bill. We found out that the insurance got stupid and started David's own insurance sooner than we were told they would. So, this is on him. He will have to pay a HUGE deductible, which stinks. We told him we will help him as much as we can, we don't want his credit messed up because of medical bills. Poor kid. But we know it will all work out.

Tomorrow we will have an insurance adjuster out to our house. We had a HUGE storm last week, lots of wind and rain, and we lost shingles from our roof. Our neighbor said from his roof he could see that our roof is down to the plywood in the back of the house. So, I guess we will be getting a new roof. I'm not sure what our deductible is, but we HAVE to have shingles on the roof! Oh, the joys of home ownership! Please pray that the deductible isn't too high. Thanks.

Well, that is about all that's happening for now. Again, sorry it took me so long to update. Thank you for all the prayers. Thanks for checking in on David. Please continue to keep him in your prayers. God bless you all. We love you.

Kristi and the Koury Klan

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

SUNDAY, JANUARY 25, 2015

I am so sorry I haven't posted for so long. It has been crazy busy around here. 

This will be quick, I need to go to bed. We have to leave at 4am tomorrow to head to Oakland Children's Hospital. David has had a couple lumps on and around his head and neck. We have been watching them for a few months, and they haven't gone away,. The one on the back of his head was really big, and the size has changed over the past few months (gotten smaller, then bigger, then smaller), but they have not disappeared. His oncologist wants to do a biopsy on at least one of them to make sure it isn't a recurrence or a secondary cancer. So he has a biopsy scheduled for tomorrow at 10:00. Please pray that we have a safe trip and that everything goes well. Anxiety is rampant in me right now, and I am trying to keep it in check. I really covet your prayers for us tomorrow. 

I am also sad that I won't be home tomorrow because tomorrow is my granddaughter's 4th birthday. I hope we will be home in time to see her and give her birthday hugs and kisses! 

Thank you for your prayers. I will post more about what has been happening when we get home. 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, AUGUST 26, 2014

Happenings!!

Good afternoon. 

Both of my granddaughters are in bed, so I have a few precious minutes to update! 

There has been soooo much happening around here that our heads are spinning!! First of all, David's job will be permanent; just not sure exactly when! He will be working for the State of Nevada in File Management for Public Safety doing data entry. Yay! Thank you for all the prayers concerning that! Next, both girls interviewed for a job with Public Safety, too. Now the prayers are that they get a different job. They HAVE to get out of where they are now. It is a horrible work environment for them both. They don't technically work together (just the same department in the state), so the environment is different for them both, but still horrible none the less. Especially for Jennifer; totally a hostile work environment. They are totally 'picking on her' for different reasons (they are trying to run her out, long story). So, please pray that they get the job God has for them; and for them to be able to be patient to wait for God's best for them. Thank you! 

Now for the 'excitement' we have had. Ok, last December Bryon started having chest pains. They started when we were up at Heavenly Valley and it was at night, temps in the teens, and he just thought it was altitude and the cold. Well, they kept coming and going, so he went to the doctor. The doctor ran many tests over the past few months; including MRI, chest CT, chest xray, sleep study (for sleep apnea), chemical stress test, and I can't remember what else! Finally, after the sleep study, the pulmonologist sent him to a cardiologist for an angiogram, still not sure what the problem was because all the tests came back normal. So on August 14 he went in for the angiogram. Found out he had 95% blockage in all 4 arteries!! The cardiologist put stents in 3 of the arteries, but ran out of time to do the fourth. The chemical that they use to see everything has a time limit before it damages kidneys, so the cardiologist had to stop at the 3 stents, and said he will schedule Bryon for the 4th artery in a couple/few weeks. Well, Bryon started having MORE chest pains after the 3 stents were put in! So, at my insistence, he called the cardiologist. They said to go to the hospital emergency room, he needed to be evaluated. Well, they admitted him on Wednesday, the 20th, and did the fourth artery on Thursday the 21st. They had to put 2 stents in the fourth artery; it has 2 branches that were 90% and 95% blocked. Scary times! We found out that this is hereditary; his paternal grandfather died is his 40's of a massive heart attack, his father had congestive heart failure, his older brother died a few years ago (in his 60's) of a massive heart attack. So we are praising God that Bryon did not have a heart attack! The cardiologist said the chest pains were a warning that a heart attack is imminent! Thankfully, that never happened! It was just weird. Bryon is young, healthy, and he didn't have a lot of control over this! Can't fight genetics!! Cardiologist said he needs to follow a cardiac diet. I asked what that is, and it is pretty much how we eat anyway! We rarely have red meat, we don't use salt much at all, we eat only whole grains, we eat a lot of veggies, and I only use olive oil or coconut oil. The only thing we don't do, that we should, is eat a lot of fish. We both love fish, just can't afford it! Now we really won't be able to with all the medical bills hanging over our heads, again!! I really think the Koury family could use a break!! I am really tired of keeping big pharm and the medical profession in business. I feel like we are doing it single-handedly!! Bryon is on all kinds of meds now. But, again, I just praise God that we caught this before something happened. I would much rather pay for meds and medical bills than a funeral!! I do have the proper perspective, but it still gets frustrating. Please pray that these stents work like they are supposed to. When the cardiologist was doing Bryon's angiogram he almost took Bryon in for open heart surgery right there and then. After the second procedure (to put the remaining 2 stents in) we were told by 2 different cardiologists that they are hoping to avoid open heart by putting the stents in, but there is no guarantee that they have avoided it. So, open heart surgery is still on the table for the future. We are just praying that that will NOT be necessary!! Please pray for the Koury family!! 

So, that is what has been going on around here. Stressful times! Please continue to pray for David and his job. Also, please pray for my daughters; they are struggling right now. And please pray for Bryon. I guess just pray for the whole family, we need it!!  :) 

Thank you for checking on us, and reading this long post! We really do covet your prayers. Thank you for being there for us. We love you! God bless you all. 

Kristi and the Koury Klan 

Do not be afraid of tomorrow; for God is already there.  ~Author Unknown 

SATURDAY, AUGUST 9, 2014

update on Olivia

Good evening 

I am sorry it has taken me so long to update; we have been very busy. Here is what is happening with Olivia (this is a quote from Lucy): "Dr. Yang says Olivia physically looks good. She's growing and healthy, and other than the one kidney infection she's not concerned. There could be a couple different causes for the kidney dilation, none of which could be accurately diagnosed at Livy's young age, so we're going to wait until December to have another ultrasound done. At that time we'll see if she still has dilation (80% of these cases clear up on their own by the time the child is 2). The results of that ultrasound will dictate whether we need to do an ultrasound with dye in her bladder to see how the urine is flowing up into her kidney. If Olivia gets another kidney infection we may do the dye test sooner. All in all the end result of the appointment is that we're not sure exactly what is causing the dilation, but because Livy's healthy we shouldn't worry." In talking to Lucy and Jeremy after the appointment, the very worst case scenario (depending on the results of the ultrasound in December) is the removal of Livy's left kidney. But before they did that they would put a stent in the area of the ureter leaving the kidney to open the ureter and stop the backing up of urine into the kidney. So, the Koury family is (once again) playing the waiting game! We are becoming pros at that!! *sigh*  Lucy said it's vague news with positive undertones, so we'll take it! 

Again, sorry it took me so long to update. Thanks for the prayers for the whole Koury family, we really need them!! God bless you all! We love you. 

Kristi and the Koury Klan 

WEDNESDAY, JULY 30, 2014

Quick update on Granddaughter Olivia

Good afternoon. 

My son and daughter-in-love are on their way, as I write this, to UC Davis to see the pediatric urologist for Olivia. Please pray for safety for the three of them (I have Elena), and also that we can get some answers about her kidney. It would be great to have a 'game plan' on what to do. It is a 2 1/2-3 hour drive to Sacramento from here. I love living in a small town; but I hate that we have no pediatric specialties here! We have to travel to California for everything! Sigh. Anyway, I would covet your prayers for Jeremy, Lucy, and Olivia as they travel. I will let you know what we find out. Thank you so much. 

God bless you all, 
Kristi and the Koury Klan 

WEDNESDAY, JUNE 11, 2014

A Praise, and Prayers needed

Good afternoon 

I'm sorry I have taken so long to post this, it's been crazy busy around here. 

We went to San Francisco last Tuesday to find out the result of David's MRI. The results are fluid on the knee (fake knee) and fribrosis of the tendon. No tumor!! Praise God for that! Such a relief! He also had his 6-month oncology appointment, and Connie will be ordering his echo and send a request for his labs. She said we can do the echo in Carson!! Woohoo! Don't have to make that trip to Oakland Children's Hospital! Sooooo happy for that! So, everything looks stable as far as David goes. Whew. 

Now on to the prayer request. My baby granddaughter, Olivia, has been really sick. They took her to the doctor and she has a urinary tract infection, so they did the ultrasound on her kidneys (she's 6 months old now) and discovered that the one kidney is still swollen. Therefore, they have been referred to a pediatric urologist. {For those of you who may not know, when Lucy was pregnant with Olivia it was discovered that Olivia's umbilical cord only had 2 vessels instead of the normal 3. 2-vessel cords can cause heart and/or kidney problems. The only 'problem' with her heart is a heart murmur.} The closest pediatric urologist is in Sacramento at UC Davis. That is about 2-2 1/2 hours away. We just have no pediatric specialties in northern Nevada!! Anyway, my son and daughter-in-love are waiting on a call from them to schedule the appointment to see Olivia. Please pray that they can get in very soon. The waiting is the worst part! Also. we leave on June 26th to go to Texas, and we would like that appointment over with before then. Please pray that we get some answers about Olivia's kidney; and, if necessary, a treatment plan. 

Thank you so much for your prayers, I really appreciate them. We feel like there is this little black cloud hanging over the Koury Klan. The clouds opened a wee bit with the good news of David's results, but there is other stuff going on. Please pray for everything to work out. God knows what the issues are, I don't want to burden you with details, or bother you with my problems. If I am not able to post again before we leave for Texas, please pray for our safety; we are driving there. Quick trip; leave Thursday morning get there Friday evening; leave Sunday morning get home Monday evening. So 4 days in the car with a 3-year-old and a 7-month-old (Olivia turns 7 months old the day we leave). It will be interesting, and we will make memories! Actually, they are both good in the car........ 

Thank you again for all your prayers. Thank you for checking in on David and the Koury Klan. God bless you all. We love you! 

Kristi and the Koury Klan 

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

MONDAY, MAY 5, 2014

Update on granddaughter Olivia

I meant to add this to my other update, then forgot. 

Olivia has had some further tests done. She saw a pediatric cardiologist and it was discovered that she has a heart murmur. It is a 'stills' murmur. The doctor is not worried about it, so basically her heart is fine. She also saw a pediatric kidney specialist and they discovered that one of her kidneys is swollen. They will do another ultrasound on her kidneys in a few months. Again, doctor isn't too worried, just making sure everything is OK. Other than that, she is a very sweet baby. I love being able to take care of my granddaughters every day! Thanks for checking in.

Kristi and the Koury Klan

MONDAY, APRIL 21, 2014

Update of David~~been busy!

So, it looks like Caring Bridge changed, again! Holy cow! I kinda wish they'd leave it alone.... 

First off, I hope you all had a blessed Easter.

I am sorry I haven't updated in such a long time. I have been taking care of both my granddaughters full-time, and they keep me busy (and tired)! My older granddaughter turned 3 in January; and my younger one is now almost 5 months old. So, I am pretty wiped by the end of the day. But I wouldn't trade it for the world! I have so much fun with them!

David turned 20 on April 12th. Every birthday that he has now is a milestone; and a miracle. They told us he wouldn't live much past his 15th birthday; but God is clearly not done with David yet! We thank God every day for another day with David. The day of his birthday was a bit chaotic. Rachel was maid of honor in a wedding for a girl at our church, so we kinda had to go to that. David didn't want to go, so he stayed with Jeremy and Lucy (and Elena and Olivia). I figured it's his birthday, he didn't have to go! So we ended up celebrating his birthday on Sunday. He wanted me to make steak fajitas, so that's what I made. And he didn't want a birthday cake, he wanted cupcakes! So, overall, he had a good birthday. Bryon and I gave him his birthday present on his birthday, because we wanted him to have it for Sunday. He wanted, and we gave him, a David Jeremiah study bible! He loves it! I adore David Jeremiah! He is an amazing man. Great Godly man!! So, that was David's birthday.

David finally had his MRI on Friday in San Francisco. It was a long day! We left the house around 7:15 or so; and got there at 11:30-ish. We were supposed to get there at 12:30 for a 1:00 appointment; but we never know what the traffic is going to be like, so we always have to leave ourselves a cushion of time. Since we were there early they took him in early. They came and got him at 12:15 (so it wasn't too bad of a wait). They told us it would be a one hour MRI. David was stressing out in the waiting room about being in the machine that long. He said, "It's just knowing it's not going to be just a quick X-ray." We were praying for him to be calm; he does get claustrophobic. He has almost had to be sedated for MRIs in the past. Anyway, they took him and Bryon and I sat and waited. After an hour we expected to see him anytime. Well, finally at 2:15 he came back! It was a long MRI. We don't have any results yet, I will post when we know something. For now we play the waiting game. I am really tired of playing that game!! So that is the haps with the MRI.

Things are busy, as usual, around here. Please continue to pray for the Koury Klan. There are some issues that we need prayer for. Thank you.

Well, that is about it for now. Thank you for stopping by and reading. 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. 

MONDAY, JANUARY 13, 2014

Sorry for the silence

Good evening. 

It was called to my attention that I haven't updated for awhile; sorry about that!

Things are very busy around here. We have not heard from UCSF about the MRI yet. I need to call them, but I hesitate to do that because all I see are dollar signs when we are talking about a specialized procedure. I know David's health is of #1 priority, but I would be more concerned if the surgeon had been concerned. So......I guess just stay tuned

Well, our new granddaughter was born, as scheduled, on November 26th. She came in at 6 pounds 10 ounces and 19 inches long. Her name is Olivia Grace, and she is a beauty! They did ultrasounds of her heart and kidneys, and she is perfect! Lucy came through the surgery fine. I can't believe Olivia will be 7 weeks old tomorrow! Lucy went back to work last Wednesday, so I have both my granddaughters every day. I love taking care of them! Elena loves her baby sister, She is always saying, "baby sister is so cute!" She loves to rub her head and kiss her. She says baby sister is so soft. She is going to be a great big sister, So far Olivia is a better eater and a better sleeper than Elena! Elena still doesn't take naps much. I still lay her down, but she plays. And she doesn't eat enough to keep a bird alive! I don't know how she is growing! She is a skinny little thing! I can't believe she will be 3 on January 26th!! They grow up too fast.

David is working a temp job again. This one has a good possibility of becoming permanent. He is doing data entry for the state in the file management section of the general services division of public safety. He wishes he didn't have to work (I do, too), but he does. He really likes the money. It is nice to have him doing something any normal 19-year-old would do! He still spends every weekend at the girls' house. He's a great kid/young adult.

Well, that is about it. Thank you for visiting and checking in on David and the Koury Klan. 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. 

MONDAY, NOVEMBER 18, 2003

Better late than never :)

Good evening. 

Sorry I haven't updated since David's doctor appointment. Partly the reason is we still don't have any conclusive answers. The surgeon looked at the swelling and said he thinks it is either scar tissue or fluid; or maybe even a tendon all knotted up. However, he said he doesn't want to miss anything so he will be scheduling a specialized MRI on David's leg. It is an MRI with MAVRIC (metal suppression). Sooooo, we still don't have any answers. I also haven't heard any results from David's echo. I will update as we find all that info out. 

Please pray for my sweet granddaughter. She fell this morning, when Jeremy and Lucy were dropping her off, and hit her head on my front door threshold. They rushed her to the ER and she had to have 6 stitches in her forehead. I felt so bad! Please pray she heals quickly. 

On another note, 8 more days till the new granddaughter is born! She will be born November 26th! Can't wait!! Please keep Lucy in your prayers, she is understandably miserable this close to delivery. Please pray that the C-section goes smoothly, and she delivers a healthy baby. So far, the 2-vessel cord is not a big issue! Praise the Lord for that! 

Thanks for visiting. I will let you know when we know more information. 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.

SUNDAY, OCTOBER 27, 2013

6 years

Good evening. 

6 years ago today we were on our way home after David's first chemo treatment. He was officially diagnosed with Metastatic Osteosarcoma on October 18, had his broviac (central line) put in on October 19, started chemo on October 20. None of his medical team thought he would still be alive today. At that time, we didn't know much about what the next year would hold for us! Praise God David is still here.

On that note, he does have a lump on his leg, next to his scar. We are not sure what it is. He has had an xray, but it was inconclusive. However, we do go to San Francisco on 11/12/13 to see Dr. O'Donnell. He knows David's leg much better than his oncologist does, so we will hear from him whether or not it is something to worry about. After that appointment we will scoot on over to Oakland Children's Hospital for David's echo. I'm not sure if we will be having labs drawn or not.......I will have to contact Connie and find out! Please pray for our safety as we drive there, and please pray for positive results from these appointments. Thanks.

In less than a month we will have another granddaughter!! We are soooo excited! Even little Elena talks about her baby sister. She wants to open mommy's tummy and see baby sister! It is so cute! The C-Section is scheduled for 11/26, so we will be thankful for a new life on Thanksgiving! We will have an amazing Thanksgiving if we get good news about David along with a new granddaughter! Life is about to get really busy! I cannot wait!!

Our weather is most decidedly changed! It is windy (duh!) and it is supposed to snow tomorrow!! If there is a nice BIG storm before we go to San Francisco it would be great! That is how we are used to going over the mountains! Haha. It has been a beautiful fall so far, that is for sure!!

Well, I think that is about it for now. Thank you for visiting and checking up on David and the Koury Klan! 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 5, 2013

6 years ago

Good evening,

6 years ago today I took David to the doctor about the swelling in his knee. He had gone to the urgent care 2 weeks previously, and was told if the swelling didn't get better to go see his primary care physician. So, 6 years ago today, October 5, 2007, I took him to the doctor. The doctor took one look at his knee, told him to get off of it, get some crutches, and he will be scheduling an MRI asap. 6 years. Our doctor had NEVER seen Osteosarcoma, and yet he said he knew what it was. Praise God for that!! We have heard of so many misdiagnoses of other children because it is so rare that doctors could go their whole career and NEVER see it! But God totally gave us the right doctor! We are so thankful for the relatively quick discovery and diagnosis. 6 years. It's hard to believe that Osteosarcoma has been a part of our life for 6 years! Anyway, I have just been a bit nostalgic today. No, we didn't know 6 years ago what we were dealing with, but we had a suspicion it was kinda serious because of the urgency of getting off the leg (David couldn't really put his weight on it, anyway), getting the crutches, and the MRI. 6 years. Wow! Our doctor told our older son that only 2 times in his career was he terrified of a child's condition: David's, and another child with neuroblastoma (who is doing great, by the way). His heart sank when he saw David's knee, knowing what it was (but not telling us)! Please read the following;

I borrowed this from another mother and it is so true and I was not aware until David was dx.(diagnosed) with cancer
 
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 fund-raisers 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 is 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 she seemed perfectly happy and healthy 10 days ago she 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 didn't realize cancer in kids before David and I'm sorry that I was so blind.

Kristi and the Koury Klan 

FRIDAY, SEPTEMBER 13, 2013

September is Childhood Cancer Awareness Month

Written 17 minutes ago

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.

WEDNESDAY, AUGUST 21, 2013

Update

Good afternoon. 

I have a quick few minutes while my precious granddaughter is napping to update. Lucy went to the specialist in Reno to check the baby. She got the news that the 2-vessel cord was indeed confirmed, again. The positive things are the doctor saw all four chambers of the baby's heart; and there was amniotic fluid in the baby's stomach, bladder, and kidneys! Those are very positive things! However, the negative is that the baby is on the small side. Normally Lucy's next appointment would be in 8 weeks, but she will be seen in 4 weeks to check progress of the baby. Please continue to pray that my new granddaughter will develop as she should. Thank you.

We took a quick road trip to Oakhurst this past weekend. David has been wanting to go, and Rachel wanted to drive her car through Yosemite, so we went! It was fun. Jennifer, Rachel, David, and I took turns on the back of the motorcycle (with Bryon driving), and we had a blast! We took our time going through the park, and the girls got a lot of pictures. It was rather hot, but not too bad. Then we went to our favorite Mexican restaurant, El Cid, for dinner. We got to spend some time with some really good friends/family while we were there. We haven't seen them for many years; and she commented that we just picked up where we left off, basically. It was so fun! They are rather old (85 & 86) and they don't act like it! They are wonderful people, and it was fantastic to see them!! They were so happy to see David! So we had a busy weekend, but it was fun!!

Please pray for David. He is having some issues with his leg. He is in pain off and on, and he is wishing it was amputated. As he gets older he is realizing how much his limitations suck! Part of his pain is caused by sitting at work with his leg bent; so his supervisor gave him something to put his foot on so he can stretch his leg. He says it has helped some. He is just thinking a lot about the amputation lately. Please pray that he can make the right decision, if he needs to make that decision. We go to Dr. O'Donnell in October, so we might talk to him about it then. Thanks for your prayers.

Well, I need to get some things done while Elena is sleeping. Thank you for visiting and checking in on David and the Koury Klan. God bless you all. We love you.

Kristi and the Koury Klan

It is during the worst times of your life that you will get to see the true colors of the people who say they care for you 

THURSDAY, AUGUST 8, 2013

Finally an update

Good evening.

Sorry I haven't posted sooner. We had a great time camping! Of course, we can NEVER go camping without some kind of trouble. We ended up with cold water, the hot water heater didn't work; we aren't sure why. We had the water line replaced and the hot water valve replaced, (before we went camping) so who knows what was wrong. We found the cold showers refreshing! It was rather hot there the first part of the week. Then on Thursday it rained and hailed! It smelled sooooo good! And it did cool the temps down real nicely! We had a great week. We are going to go again over Labor Day weekend; our last camping trip of the year. Yes, we had a critter again this year; raccoons again! It doesn't even bother me anymore. Then when we got home David went camping with his bible study youth group. He had a good time. He bought himself a small tent to sleep in. We love camping! It is always sad when we go for the last camping trip of the year. So that is it for the camping!

Lucy got some news today; the baby does have a 2-vessel cord. She will be seeing the specialist in Reno next Thursday. She was told she will will have another ultrasound at 32 weeks. and then be monitored weekly after that. They said that 32 weeks is the point where growth slows in a 2-vessel cord baby. So they just want to make sure the baby continues to grow. She is at the 53% mark in her growth now, so everything is so far so good. Please continue to pray that the baby develops normally. They were also told that after birth the baby will be checked frequently for renal function, to make sure the kidneys are functioning properly. We would really continue to covet your prayers for my new granddaughter. Thank you.

That is all the news for now. I will keep you posted next week when we find out what the specialist says. Thank you for your prayers. Thank you for checking in on David and the Koury Klan. God bless you all. We love you.

Kristi and the Koury Klan

*Young adults aged 15-22 have the lowest cancer survival rate of any age group. 

WEDNESDAY, JULY 17,2013

Quick update~~Prayer needed!!

I just have a quick, urgent, prayer request. Lucy had a doctor appointment today to review her ultrasound, and there is a potential problem. It appears that she has a 2 vessel cord. She will be having another ultrasound in two weeks, and will find out for sure if it is a 2 vessel cord or not. Please pray that it is NOT a 2 vessel cord; or if it is, the baby will not be affected by it. The most common potential problems with a 2 vessel cord are kidney and/or heart problems. If she does have a 2 vessel cord she will be sent to a specialist in Reno and closely monitored the remainder of her pregnancy. I will let you know what the results are after the next ultrasound. Thank you so much for your prayers, they mean a lot to us. Pray for peace for the family as we await the next ultrasound, this is so scary! We were told by our online Osteo support group to not "bleed till we are shot" and that is what we are trying to remember to do. Or not do, Or whatever. Thanks again for your prayers.

Kristi and the Koury Klan 

TUESDAY, JULY 16, 2013

Sorry for the lack of update

Good evening. 

I guess Caring Bridge has changed and I can't do the things I could before.....I can't do different colors, fonts, or sizes of font. Oh well, I hope you can still read this tiny writing! 

We had David's xrays and labs done last month. Everything is still stable. We are really not happy with only xrays, but what can we do? We know that by the time an xray picks up a lung met, it is already large! We know, like I said before, that we can't radiate him forever, and CT scans have their own risks, but still. This still kinda scares us. But we know that David is in God's hands, and He will take care of him. We know that it doesn't mean David will not die, but it means that God is in control and will get us through whatever is in HIs will. Please continue to pray for David and the rest of us as we walk this unknown world. Remember, they have no protocol for him so we are just 'winging it' with him!! Thanks 

We are going camping this weekend and next week!! We will be going up on Friday and staying until July 28th. We are so excited! We have been waiting so long for this. We had to get the trailer fixed, the water line was busted, but now we are ready to go! We will also be taking Elena with us again! She loves to go camping, so she's so much fun! We are wondering what critter will be visiting us this year. Every year, when Bryon isn't with us, we have a critter come to our campsite. One year it was a bear, one year it was raccoons, and one year it was deer. It will be interesting to see what visits us this year! Please pray that we are safe during the time we are camping. Thank you. 

Well, we got the news on our new grandbaby.....we are having another granddaughter! We were hoping for a boy this time, but we are thrilled to be having another girl!! So far the delivery date will be November 26; scheduled C-section. So we will have MUCH to be thankful for on Thanksgiving!!! Please continue to pray for a safe pregnancy and delivery. And a healthy baby girl! So far, she is doing fantastic. And Lucy is feeling really good, which is wonderful. 

David is still working, He doesn't like it, of course, but he does like the money! He will not be getting paid while we are camping, because he is still with a temp agency. Please pray that his job can become permanent. Thanks. 

Well, that is about it for now. Thank you for all your prayers. Thanks for visiting and checking up 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, JUNE 2, 2013

Sorry for the silence

Good evening. 

I am sorry I haven't updated for so long. 

Our hearts are extremely heavy lately. I am sure you remember me asking prayer for Rachel (not my Rachel) who has been battling Osteosarcoma for many years. Well, she just couldn't fight any more, and she lost her battle 2 weeks ago; on May 18th. Please pray for her family as they struggle to go forward without Rachel. She was only 18. Then, on May 20th, we lost another Osteo warrior, Zach, another 18-year-old. IHATE OSTEOSARCOMA!!! It is so hard to hear about children dying from the same disease that lies dormant in your child's body!! We live every day waiting for the other shoe to drop. Yes, we cherish each day we have with David; but our days are still filled with uncertainty. We know that David is in God's very capable hands, but that does NOT mean he won't die from this disease. Please pray for the families of these two precious children. Thank you. 

On another note. Bryon and I took a road trip over Memorial Day weekend. We went to Colorado on the motorcycle! It was so much fun. It was cold in Nevada, Utah, and Wyoming......hot/warm in Colorado! We went to a friend's son's graduation party; and we got to see some of Bryon's family that we haven't seen in years!!We traveled 2240 miles in 5 days! It was so much fun. 

For those of you interested, David wrote his testimony of his cancer journey from his perspective. If you would like a copy, just email me (my email address in on the right) and I will forward it to you. It was very difficult for him to write; and equally difficult for us to read; but we are so proud of him for doing it.Everyone who has read it is amazed. It is very enlightening to read it from his perspective. Feel free to ask for it, I will gladly send it to you. 

Well, that is about all that's going on here. Again, please keep Rachel and Zach's families in your prayers. Thank you for visiting and checking in on David and the Koury Klan. God bless you all. We love you. 

Kristi and the Koury Klan 

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

THURSDAY, MAY 16, 2013

Belated Happy Mother's Day

Good afternoon. 

Belated Happy Mother's Day to all the moms out there!! I hope you had a great day. 

Sorry it has been so long since I have written. I have a few minutes to updatenow while my beautiful granddaughter is napping. 

David's oncology appointment went well. He has been 'reduced' to just chest xrays and leg xrays. Not sure how often, however. Forgot to ask that!! We aren't totally comfortable with that; but we know we can't radiate him forever!!! CT scans have their own set of risks, and the radioactive dye they give him for bone scans also have their own set of risks. So.......we have to trust the doctors. Plus, we have to go with whatDavid is ok with. It's his body, he is an adult, and he is aware of the risks, so we abide by his decisions. Plus, the main thing is, he is in God's hands!! A funny thing happened at his appointment. Keep in mind Connie has been seeing David for 5 1/2 years. She again asked about his stamina (he has none) and his physical abilities. We told him that without the lower quad muscle he can't do much without getting really tired. She was checking out his leg, and squeezing the area above his knee and she had this 'a-ha' look on her face and said, "he has NO lower quad muscle at all!" It FINALLY dawned on her! We thought it was kinda funny. For us, if you push on your leg above your knee, you feel muscle. With David, you feel the implant. He has no fat deposits or muscle around the implant. his leg caves in on the sides (above his knee) because there is nothing there. Anyway, we thought it was funny that she finally 'gets it' where the leg is concerned. So his appointment went well. 

He is again working. He started April 30th, and this contract is through the end of September, so far. There is still the possibility of maybe it becoming permanent, but we'll see. He, of course, doesn't like working, but he does like the money.  His supervisors know he won't be working that week in July when we go camping, and it's all ok. He won't get paid for it, but I guess that's life. He's working for a different temp agency this time, Manpower, and he doesn't get benefits. So, no paid vacation! He is ok with it, tho. 

He still spends the weekends at the girls' house. Except last weekend, we went camping! We had a lot of fun. The weekend went by really fast, however. That was our old tradition, camping on Mother's Day. We did do the Great America thing for two years, but David would rather go camping. So we will go camping on Mother's Day from now on. It was fun. 

The great news of the day is......drum roll......we are going to have another grand baby!!! We are so excited! Because it will be a planned c-section it will come a wee bit earlier than due date. So, by Thanksgiving we will have a new life in our family!!! We are hopingfor a boy, but we know we will be over the moon with joy if it's another girl! We totally cannot wait! Please pray for a safe pregnancy and safe delivery. And, of course, a healthy baby!! Thanks! 

Well, that is all the news for now. Thank you for visiting and checking in on David. Thank you for your prayers. 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.