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
Wednesday, September 5, 2012
Sunday, September 2, 2012
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
Friday, August 10, 2012
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
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."
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
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!!!"
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
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
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
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
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
Thursday, July 5, 2012
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
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."
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."
Friday, June 1, 2012
FRIDAY, JUNE 1, 2012
Good evening.
Well, David had a follow-up at the gastroenterologist on Thursday. We found out that, so far, his B12 levels are within the normal range. Yay! He does NOT have celiac disease. Yay! The powder is not working, so he is scheduled for the hydrogen breath test. That requires us to fill a prescription for some lactulose that he will drink at the appointment, then they will have him blow into a tube every 15 minutes. They told him to be prepared to be at the office for 4 hours total time. Hopefully we will get some answers from that test. If his breath is positive for hydrogen, that means that the bacteria that is in his large intestine is 'leaking' into his small intestine. Remember, he doesn't have the valve between the two to keep the bacteria out. Please pray that we will get some answers. We kinda hope that his breath will be positive for hydrogen so then we will know what to do! We are pretty frustrated at this point. Also, until the test (which is scheduled for July 5) David cannot take his prevacid. It has to be out of his system, not really sure why. He really only needs 2 weeks, but he quit today just in case there is a cancellation before the July 5th date. Please pray that his ulcer doesn't act up in that time. It usually acts up every day if he doesn't take the prevacid! Thanks for all your prayers.
David loves the freedom he has now that he has his license! He will be driving down to Gardnerville by himself, again, tomorrow. He drove himself to his last Bible study class a couple weeks ago. Tomorrow he is going to a graduation party for one of his friends from Bible study. He is a good driver. Please pray that he does ok tomorrow; he is a little nervous because he isn't familiar with Gardnerville, and he has never been where he is going tomorrow. He will be following the GPS, hopefully it won't send him off a cliff! Nah, he's not that stupid! He knows he can always call us and we can help him. Anyway, he is enjoying having his license. I can't believe all my children are adults! When did that happen?!?!
We will be almost 'empty nesters' in a couple of months. Rachel will be moving out! We will be turning her room into 'Elena's room.' So now Elena will have her own room at Nana and Poppa's house! That will be a good thing! She spends a lot of time here, and every Wednesday night she spends the night here. Now she will have her own room! Cool, huh?
Well, that is about it, for now, in the life of the Koury Klan. Please continue to keep us in your prayers; we really appreciate it! Thanks for checking up on us. Have a great weekend. God bless you all. We love you.
Kristi and the Koury Klan
"Sometimes you have to give up on people. Not because you don't care, but because they don't."
Well, David had a follow-up at the gastroenterologist on Thursday. We found out that, so far, his B12 levels are within the normal range. Yay! He does NOT have celiac disease. Yay! The powder is not working, so he is scheduled for the hydrogen breath test. That requires us to fill a prescription for some lactulose that he will drink at the appointment, then they will have him blow into a tube every 15 minutes. They told him to be prepared to be at the office for 4 hours total time. Hopefully we will get some answers from that test. If his breath is positive for hydrogen, that means that the bacteria that is in his large intestine is 'leaking' into his small intestine. Remember, he doesn't have the valve between the two to keep the bacteria out. Please pray that we will get some answers. We kinda hope that his breath will be positive for hydrogen so then we will know what to do! We are pretty frustrated at this point. Also, until the test (which is scheduled for July 5) David cannot take his prevacid. It has to be out of his system, not really sure why. He really only needs 2 weeks, but he quit today just in case there is a cancellation before the July 5th date. Please pray that his ulcer doesn't act up in that time. It usually acts up every day if he doesn't take the prevacid! Thanks for all your prayers.
David loves the freedom he has now that he has his license! He will be driving down to Gardnerville by himself, again, tomorrow. He drove himself to his last Bible study class a couple weeks ago. Tomorrow he is going to a graduation party for one of his friends from Bible study. He is a good driver. Please pray that he does ok tomorrow; he is a little nervous because he isn't familiar with Gardnerville, and he has never been where he is going tomorrow. He will be following the GPS, hopefully it won't send him off a cliff! Nah, he's not that stupid! He knows he can always call us and we can help him. Anyway, he is enjoying having his license. I can't believe all my children are adults! When did that happen?!?!
We will be almost 'empty nesters' in a couple of months. Rachel will be moving out! We will be turning her room into 'Elena's room.' So now Elena will have her own room at Nana and Poppa's house! That will be a good thing! She spends a lot of time here, and every Wednesday night she spends the night here. Now she will have her own room! Cool, huh?
Well, that is about it, for now, in the life of the Koury Klan. Please continue to keep us in your prayers; we really appreciate it! Thanks for checking up on us. Have a great weekend. God bless you all. We love you.
Kristi and the Koury Klan
"Sometimes you have to give up on people. Not because you don't care, but because they don't."
Friday, May 18, 2012
FRIDAY, MAY 18, 2012
Good evening.
I'm so sorry I don't update as much anymore; I guess no news is good news. Or stable news in our case.
David finally got his labs drawn today. We asked them to send the results to us (as well as the doctor) so we can read them ourselves. He has been taking the powder drink, and it is not working. He has another appointment with the gastroenterologist on May 31st. We will let him know that possible fix #1 didn't work. We will find out if the blood draw will tell us anything. I am anticipating low B12 levels....we will see. The next step is the test to see if it is bacteria in his small intestine; that belongs in his large intestine. We knew it would be hit-and-miss and trial and error to find out the cause of David's problems so we can fix them. *sigh* On to step #2.
We have reserved our week camping! We can't wait! We are going from June 23-July 1. We are taking Elena with us! It will be a fun, however busy, week camping with a toddler. We are very excited! Actually, Jennifer is going this year, too. So it will be me, David, Jennifer, and Elena for the week!!! We are going to have a blast! We can't wait until we go.
Tomorrow Rachel will be donating platelets, and Bryon and I will be donating blood. I am a little nervous about that, on account of last time I donated I fainted! Please pray that I don't faint this time. Please pray that I have NO reaction this time. Thanks.
Please continue to pray for David and the problems he is having. Since we know that the powder (to trap the bile from his large intestine) isn't working, please pray that the test that will require antibiotics will work. And please pray that we will get some answers from the blood work. Oh, he is also being tested for celiac disease. Thank you for your prayers, we really appreciate it.
Thanks for checking up on David and the Koury Klan. Thank you for your prayer support. God bless you all. We love you.
Kristi and the Koury Klan
"I'm proud of my heart. It's been played, stabbed, cheated on, burned, and broken, but somehow still works."
I'm so sorry I don't update as much anymore; I guess no news is good news. Or stable news in our case.
David finally got his labs drawn today. We asked them to send the results to us (as well as the doctor) so we can read them ourselves. He has been taking the powder drink, and it is not working. He has another appointment with the gastroenterologist on May 31st. We will let him know that possible fix #1 didn't work. We will find out if the blood draw will tell us anything. I am anticipating low B12 levels....we will see. The next step is the test to see if it is bacteria in his small intestine; that belongs in his large intestine. We knew it would be hit-and-miss and trial and error to find out the cause of David's problems so we can fix them. *sigh* On to step #2.
We have reserved our week camping! We can't wait! We are going from June 23-July 1. We are taking Elena with us! It will be a fun, however busy, week camping with a toddler. We are very excited! Actually, Jennifer is going this year, too. So it will be me, David, Jennifer, and Elena for the week!!! We are going to have a blast! We can't wait until we go.
Tomorrow Rachel will be donating platelets, and Bryon and I will be donating blood. I am a little nervous about that, on account of last time I donated I fainted! Please pray that I don't faint this time. Please pray that I have NO reaction this time. Thanks.
Please continue to pray for David and the problems he is having. Since we know that the powder (to trap the bile from his large intestine) isn't working, please pray that the test that will require antibiotics will work. And please pray that we will get some answers from the blood work. Oh, he is also being tested for celiac disease. Thank you for your prayers, we really appreciate it.
Thanks for checking up on David and the Koury Klan. Thank you for your prayer support. God bless you all. We love you.
Kristi and the Koury Klan
"I'm proud of my heart. It's been played, stabbed, cheated on, burned, and broken, but somehow still works."
Wednesday, April 25, 2012
WEDNESDAY, APRIL 25, 2012
Good evening. It is beautiful here; it is raining!! We love the rain.
Ok, we took David to the gastroenterologist today, and he was very informative. There are a few things that could be causing David's issues. #1 is low B12. #2 is bile getting into his large intestine; doesn't belong there. #3 is the bacteria that is supposed to be in the large intestine is getting into the small intestine, doesn't belong there. # 2 & 3 is because of the area of bowel that was removed and resected. He said that David lost the 'valve' that keeps the bile out of the large intestine; and also keeps the bacteria out of the small intestine. Clearly, that is irreversible. So, there are things we are going to try, one at a time. First off we are going to try a powder (actually designed to lower cholesterol) that will absorb the bile in the small intestine so it won't go into the large intestine. If that doesn't work; we will try doing a test that will determine if the problem is bacteria. If that is the case, David will be on a strong antibiotic for 2 weeks, then on a probiotic to put the 'good' bacteria back into the large intestine. The doctor said he could scope David and see how the attachment looks, but David has been through so much, and it would be a low yield result, that he will avoid that. He doesn't want to put David through any more than he has to. He also said chemo has an effect on the bowels, too. And David had a LOT of chemo! And ultimately it could be low B12. David takes sublingual B12 daily, but he said it might not be enough. He said we store B12 in our tissues for 2-3 years, and it has now been 4 years since the bowel resection surgery. The last time David was tested for B12 levels was over a year ago, so he said that could be the problem. We will be having labs run on David soon to see. If that is one of the problems, David will have to have the B12 shot (because that will show that the sublingual isn't working); which is a once-a-month shot. So at least we have some things to try and narrow down. It will be a balancing act, and it might take a while to pinpoint the problem, but it feels good to know that maybe he won't have these issues all his life. Please pray that we can figure out what the problem is, they are all relatively easy fixes!! We just know we can't keep on going the way we are going. Like I have said before; Cancer, the gift that keeps on giving!! I know David's intussusception and bowel resection were NOT cancer related, but it is unheard of in a child David's age unless there is cancer. His was a head-scratcher for the doctors because it should NOT have happened. There was no cancer involved in his intussusception. Anyway, that is what we found out today.
David wants to say 'thank you' to those of you who sent him birthday wishes, and gifts! He appreciates it very much. Thank you for your thoughtfulness.
Please pray for my precious granddaughter. She has been sick for a week now. Running a fever, lethargic, fussy, and just not her happy self. She goes to the doctor for her 15-month check-up tomorrow (I can't believe she is that old already), so please pray that they can find out what is wrong with her. I love her so much, and I hate it when she is sick. Thanks for your prayers.
Thanks for visiting and checking up on David and the Koury Klan. Have a good evening. Thank you for your prayers. God bless you all. We love you.
Kristi and the Koury Klan
It's not very profitable for the drug companies to develop better treatments for such a small portion of the nation's cancer burden. In other words, because only 1% of all cancer cases involve children, some think that the value of advancements in treatment is low when compared to the cost.
Ok, we took David to the gastroenterologist today, and he was very informative. There are a few things that could be causing David's issues. #1 is low B12. #2 is bile getting into his large intestine; doesn't belong there. #3 is the bacteria that is supposed to be in the large intestine is getting into the small intestine, doesn't belong there. # 2 & 3 is because of the area of bowel that was removed and resected. He said that David lost the 'valve' that keeps the bile out of the large intestine; and also keeps the bacteria out of the small intestine. Clearly, that is irreversible. So, there are things we are going to try, one at a time. First off we are going to try a powder (actually designed to lower cholesterol) that will absorb the bile in the small intestine so it won't go into the large intestine. If that doesn't work; we will try doing a test that will determine if the problem is bacteria. If that is the case, David will be on a strong antibiotic for 2 weeks, then on a probiotic to put the 'good' bacteria back into the large intestine. The doctor said he could scope David and see how the attachment looks, but David has been through so much, and it would be a low yield result, that he will avoid that. He doesn't want to put David through any more than he has to. He also said chemo has an effect on the bowels, too. And David had a LOT of chemo! And ultimately it could be low B12. David takes sublingual B12 daily, but he said it might not be enough. He said we store B12 in our tissues for 2-3 years, and it has now been 4 years since the bowel resection surgery. The last time David was tested for B12 levels was over a year ago, so he said that could be the problem. We will be having labs run on David soon to see. If that is one of the problems, David will have to have the B12 shot (because that will show that the sublingual isn't working); which is a once-a-month shot. So at least we have some things to try and narrow down. It will be a balancing act, and it might take a while to pinpoint the problem, but it feels good to know that maybe he won't have these issues all his life. Please pray that we can figure out what the problem is, they are all relatively easy fixes!! We just know we can't keep on going the way we are going. Like I have said before; Cancer, the gift that keeps on giving!! I know David's intussusception and bowel resection were NOT cancer related, but it is unheard of in a child David's age unless there is cancer. His was a head-scratcher for the doctors because it should NOT have happened. There was no cancer involved in his intussusception. Anyway, that is what we found out today.
David wants to say 'thank you' to those of you who sent him birthday wishes, and gifts! He appreciates it very much. Thank you for your thoughtfulness.
Please pray for my precious granddaughter. She has been sick for a week now. Running a fever, lethargic, fussy, and just not her happy self. She goes to the doctor for her 15-month check-up tomorrow (I can't believe she is that old already), so please pray that they can find out what is wrong with her. I love her so much, and I hate it when she is sick. Thanks for your prayers.
Thanks for visiting and checking up on David and the Koury Klan. Have a good evening. Thank you for your prayers. God bless you all. We love you.
Kristi and the Koury Klan
It's not very profitable for the drug companies to develop better treatments for such a small portion of the nation's cancer burden. In other words, because only 1% of all cancer cases involve children, some think that the value of advancements in treatment is low when compared to the cost.
Sunday, April 22, 2012
SUNDAY, APRIL 22, 2012
Good evening.
So sorry I haven't updated for so long, things here have been pretty hectic. But we are just going with the flow.
First off, David had his birthday on April 12th; and he turned the big 18!! That is such a big deal. They told us 4 years ago that he wouldn't live to see 16, and he is now 18! He has become quite the young man, let me tell you.
Second, he finally got his license! He had his 50 hours, but he didn't really need them as he waited until he was 18 to get his license. Since he is an adult, he didn't need the hours. However, we still wanted the time behind the wheel so we know he has the confidence. He is a great driver, and he is happy to have his license. That was such a 'rite of passage' for him. We are so very proud of him.
Then this weekend we went camping for the first time in 2 years!! It was so much fun! We were so happy to be camping. It is something that David enjoys so much, and we have missed it so much. It just never worked out for last year, and we didn't realize just how much we missed going! So we got to get in some camping this weekend, and it was such a blast! The weather was perfect; low 80's, breezy, and beautiful! Now we can't wait to go again! David and I will be going for a week again this summer. We really missed our time last year. We won't get a vacation, so we will go camping.
There are other little things that have kept us busy. One of those is my precious granddaughter! She is such a joy. Walking all over the place, finally cutting teeth, and keeping me hopping!! She is so much fun. I am so tired by the end of the day, I'm not 25 anymore!! But she is worth it.
David has his appointment with the gastroenterologist on Wednesday at 3:30. Hopefully we will get some answers. Please pray that we will get some answers to some of the issues David has been having. Thank you.
Thank you for visiting. I will post after David's appointment and let you know what we find out. Please continue to pray for Rachel (not my Rachel). Remember, she is a member of our Osteo family, and she has taken a turn for the worse. She is sleeping a lot, that is the only time she isn't in pain. Please pray for her and her family. Thank you. Have a good evening. God bless you all. We love you.
Kristi and the Koury Klan
Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers, like osteosarcoma, have proven so resistant to treatment that, in spite of research, a cure is illusive.
Friday, March 30, 2012
FRIDAY, MARCH 30, 2012
Good evening.
Sorry I didn't update yesterday, it was a busy day. We went to Reno for David's oncology appointment, only to find out that the flight that the doctors take from Oakland was cancelled. So, needless to say, no appointment. Sandy, the nurse at the clinic, and I kept calling Connie to try to get a hold of her to see what to do next. At one point, as I was calling Connie she called me. She said she will reschedule David's appointment for two weeks from now; she will be on vacation for two weeks. And she said to not make it a total wasted trip for us she faxed us the bone scan and chest CT reports. The results are in. Bone scan looks good. Tracer uptake at the ends of David's prosthesis because of bone growth over the prosthesis~~good! Tracer uptake at his growth plates~~perfectly normal. Tracer uptake on his left knee~~attributed to the way he walks (the uneven gait). So overall, bone scan is good. Chest Ct results are stable!!! There are no new nodules~~fantastic! He still has the calcified gallstone; they always note that. So, woohoo!! Stable scans. We will take it!
Yesterday was a very emotional day for us. It was the 12-year anniversary of my dad's death. I miss my dad more than words can say. When I look at Elena I know my dad would have adored her! He loved his grandchildren so much, and I know he would have thought the sun rose and set on Elena. I just really miss him. Then, as we were driving to Reno, Bryon told me that a woman he works with got a phone call around 8:00 that her husband had just died. We were very stressed as we were going to Reno for David's appointment. It was just a very emotional, stressful day. Then we drove (actually, David drove) down to Gardnerville for David to go to Bible study. He had the good news of stable scans to share with his group! The news of the stable scans was the best thing that happened yesterday. Thank you for your prayers.
For those inquiring minds that want to know, our mailing address is now PO Box 1605 Carson City, NV 89702.
Thanks for visiting and checking up on David and the Koury Klan. Thanks for all the prayers. God bless you all. We love you.
Kristi and the Koury Klan
"When you are going through something hard and wonder where God is, remember, the teacher is always quiet during a test."
Saturday, March 24, 2012
SATURDAY, MARCH 24, 2012
Good evening.
Well, we are back from Oakland. We are so glad to be back, the trip was not an easy one. We left a little later than we wanted to, but just a few minutes. When we turned onto hwy 50 (towards Lake Tahoe) it started to snow. We were NOT expecting snow! It was snowing pretty hard, and we were thinking, 'great, we are going to be late.' We got to the 'chain-up' area and we saw that there were flares in the road. We knew we would be able to go on, we have a 4-wheel-drive with snow tires on it. Well, we couldn't go on because there was an accident on the summit and the road was closed. So, we had to turn around and go a different way~~~a longer way. It was snowing quite hard, and blowing, so at times it was white-out conditions. Therefore, we had to go rather slow. To sum it up, we were over an hour late. I called Children's Hospital and told them we would be late, so at least they were aware of it. When we got there we didn't have to wait long for the bone scan injection, and they came and took David for his chest CT right away. We had to wait for the radioactive medicine to course through David's body (takes 2 1/2 hours), so he had his bone scan at 11:45 (it was supposed to be at 10:30), and then we left. We stayed in Oakland at the Executive Inn & Suites, thanks to the Northern Nevada Children's Cancer Foundation. It was good that we stayed, we were all so exhausted!! It was such a long day yesterday. It was also a very emotional day, scan days always are. They are very stressful days!! So it was nice to be able to spend the night there and go home this morning. It was raining when we left, and then it cleared up the closer we got to home. But that storm is on it's way here!
Tomorrow is my younger daughter's birthday! I can't believe my children are getting older! Happy Birthday tomorrow, Rachel!!
We will get the results of David's scans on the 29th of this month. David has an oncology appointment at 11am on the 29th; so our scanxiety is not over yet! I will post when I know what the results are. Please keep praying that the scans stay stable, no active tumors. Thanks.
Thank you for visiting and checking in on David and the Koury Klan. Thank you for all the prayers, we need them! God bless you all. We love you.
Kristi and the Koury Klan
"Motherhood. The only place you can experience heaven and hell at the same time."
Monday, March 19, 2012
MONDAY, MARCH 19, 201
Good evening.
Our weather has been very bizarre lately! It snowed all weekend here. It was beautiful. And on Tuesday and Wednesday it is supposed to be in the mid 60's! That is northern Nevada for ya!! At least we know it will be beautiful for our drive to Oakland on Friday. David wants to drive home from Oakland, but Bryon will get him out of the bay area and then David will drive home from Fairfield. That means he will be driving through Sacramento! He only has about 2 hours left of his required 50 hours behind the wheel. He will be getting his license soon! He is a very good driver.
I am requesting prayer for us tomorrow. Bryon and I will be signing all the papers for the short sale on our house. Our mortgage company accepted the offer, and we will be signing the papers tomorrow. It is hard for us, and sad, but we know that God is still in control. We will be fine. God is working everything out, and it is exciting to see Him work. Wylene, don't worry, you will always know our address! David looks forward to your cards and word searches!! I would NEVER not let you know our address! :)
Please continue to pray for our trip on Friday. We have to leave at 3:30am......yikes!! We have to check in at 7:30 at Oakland Children's Hospital. Please pray for our safety, and for everything to go smoothly. We have an appointment on March 29th to discuss the results of these scans. We will probably be a bit stressed until we find out the results; and I will post as soon as we find out! I got an email today about a study done on Osteosarcoma from the American Cancer Society. It was a bit disconcerting to us. It said that after 20 years, the survivors of Osteo have a greater chance of a recurrence. Now this study was done on localized Osteo, not metastatic. They don't seem to do much research on metastatic Osteosarcoma; I wonder why? Anyway, it basically said that the further out the survivors get, the greater the chance of the cancer coming back. That is the opposite of the other cancers out there; after 5 or so years you are considered cured!! We are just praying that David stays stable! Thank you so much for your prayers.
Thank you for visiting and checking up on David and the Koury Klan. Thank you for your emotional and spiritual support, we really appreciate it! Have a good night. God bless you all. We love you.
Kristi and the Koury Klan
“There has been a significant lack of progress during the last two decades in treating osteosarcoma,” said Ian Lewis, Professor of Cancer Studies at St. James University Hospital in Leeds, England
Wednesday, March 14, 2012
WEDNESDAY, MARCH 14, 2012
Good evening.
I am sorry I haven't updated for so long.
Things are going ok. We have had some 'exciting' things happen. For example, 2 weeks ago Bryon and I donated blood; something we have done many times. I have been donating since I was 18 years old! We both have a rare blood type, so we give every 8 weeks. Anyway, for the first time everI fainted after donating!! I have NEVER had that happen before. I am glad Bryon was there to get the proper people to take care of me. It was kinda scary. It was also embarrassing! But I am fine, and I will donate again. Also, our house situation has changed. We were able to obtain a short sale on our house. We are sad about that, but we will be fine. Everything will work out.
David will be having scans again on March 23rd. Please pray for stable scans. I am starting to get scanxiety about the scans. I would love for David to have 'clear' scans, but I will be content with stable! As long as the tumors aren't growing I will be happy. We have to go to Oakland for the scans this time. Connie said it just didn't work out having them done in Reno, even though that is way more convenient for us! Oh well, that is fine. We will leave early Friday morning and come home Saturday. We have discovered we are just way too old to make it a 16+ hour day! The extra expense of a night in a hotel is worth the piece of mind for our safety. Please pray for our safety as we travel to David's scans. Thanks.
The other new development is Connie is setting David up with a gastroenterologist. She is concerned about his poor weight gain (and his frequent loss of weight), his tummy problems, his VERY frequent nausea, and his bowel issues. She thinks he needs to be looked at by someone who is a specialist in that area. She said with the resection and the area that was removed, she wants to find out if anything can be done to help with his issues, or is this just his life forever. So I will let you know what we find out after he has that appointment. Maybe we will get some answers.
Well, that is about all that is happening for now. Thanks for visiting and checking in. Please pray for David's upcoming scans. Thank you. God bless you all. We love you.
Kristi and the Koury Klan
'Courage is the art of being the only one who knows you're scared to death.'~~~Harold Wilson
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