SATURDAY, DECEMBER 31, 2011

Good evening.

HAPPY NEW YEAR!!!

I am so sorry I haven't updated for so long. Life just gets in the way sometimes. I hope you all had a very Merry Christmas. I know we did. It was nice and quiet. I know that sounds funny; quiet with 8 of us!! It was Elena's first Christmas, and she was absolutely adorable!! It was so nice to have a baby in the house at Christmas again. We didn't have many gifts, but that is not what Christmas is about, anyway. Our income reversal was sudden, with no warning, so we weren't able to prepare so we would have money to buy gifts. But we still had a wonderful Christmas. One of the highlights of the day (besides Elena's first Christmas) was the fact that David was home! Four years ago we were in the hospital for Christmas; my poor baby getting chemo on Christmas. We celebrate every Christmas in a new way now. It isn't about the gifts we give (or don't give) each other; it is all about the gift that God gave us that Christmas so long ago. We always read the Christmas story and sing "Happy Birthday" to Jesus before we open gifts. All in all, it was a wonderful day. I hope you all had a great day, too.

Then we had my older daughter's birthday on the 28th. She had a good birthday. It was good to have all 8 of us together again!! We had a yummy dinner and she wanted apple pie for dessert! She doesn't like cake, crazy girl!!

We are really hoping that we have a better 2012 than we had 2011!! We are praying for a surgery-free year for David. He has had at least one surgery every year since 2007; and most years were multiple surgeries. Like in 2008 he had 6 surgeries!!! So we are praying that David can go this whole year without even one surgery!!! Please join us in that prayer! Thanks,

We can't believe that 2011 is almost over!! We are glad to see it go, in some respects. We are curious to see what God has in store for us this coming year. We know about some things that will happen, I will let you know when they happen, but I'm sure there will be some surprises. We just hope they are 'good' surprises!!

Please pray for some members of my family. We have some sickies; Elena is sick, Lucy is sick, Jennifer is sick, and David is sick! It is just a cold, but they are miserable! Please pray they get better real soon. Thanks.

Please continue to keep praying for Rachel. She is fighting hard, but is in so much pain. They are giving her IV pain meds around the clock, but it isn't always helping. Please pray for this precious child. Thank you.

I hope you all have a very Happy New Year. I pray that 2012 will be a good year. 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

"Everyone is suffering in this economic climate but parents of children with cancer are amongst the hardest hit."~~~Lorraine Clifton, chief executive of CLIC Sargent

TUESDAY, DECEMBER 13, 2011

Good evening.

I am sorry I haven't updated in awhile, I have been very busy. I know some people think I am not busy because I don't work outside the home; but that is so not true. My son was even told once that his mom doesn't work, that his mom doesn't do anything. Keep in mind, when my son was told that I was babysitting a 2 1/2 month old boy and 11 month old twin girls!! Sure, now I only have my granddaughter, and David, but still. My granddaughter does not believe in sleeping! I am lucky to get 3 1/2 hours, TOTAL, from her all day!! Good thing she is a happy baby! I am having a blast with her, believe me, but she keeps me hopping!! Plus all the normal housework, cooking, cleaning, etc. I enjoy Elena so very much, and I wouldn't trade my busyness for the world! Priorities! I might not get all the housework done, but I enjoy playing with my little princess. And at the end of the day I am pretty tired, so that is why I haven't updated recently.

Tonight was the Northern Nevada Children's Cancer Foundation Christmas party. We had good food, and David got a $15 gift card. It will be our last year to go to that party, however. They have decided that they have to pare it down, so they are going by diagnosis date, and we will be 'phased out' next year. It is bittersweet. So we just enjoyed tonight.

I just want to say how much I appreciate my children. There was another income reversal in our family, very sucky timing, so this will be a small Christmas. The money we no longer have was money I was counting on for Christmas for my children, so we can't do what we planned. That being said, I want to say 'thank you' to my children for being so understanding. We have always focused on our Savior's birth at Christmas, after all, that is why we have Christmas!! But, as a mom, I want to give my children everything they want. Of course, I know that is not what's best for them, but I still want to!! So I want to brag on my kids and say how thankful and appreciative I am that they understand where we are financially. I have THE best kids ever!! Thank you Jeremy, Lucy, Jennifer, Rachel, and David. I love you all sooo much!

Please, please pray for one of my Osteo family members. I have asked for prayer for her before, her name is Rachel. She is in tremendous pain. Her latest scans show disease progression and she is home on hospice. She is about 6 weeks younger than David, just a 17-year-old child. Please pray for her parents as well as her. No child should have to go through what she is going through; and no parent should have to sit and helplessly watch their child suffer!! Osteosarcoma sucks!!! I wish I had never heard of Osteosarcoma. I am tired of reading about my family members suffering, children suffering and dying!! I hate it so much!! Please pray for Rachel and her family. My heart is just breaking, again. Thank you for your prayers.

Please continue to pray for Davids appetite. We are not happy about his 7 pound weight loss!! He is just not eating enough to just maintain his weight, and that does concern us. Please pray that he can gain the weight back that he lost. Thanks.

Thank you for visiting and checking up on David and the Koury Klan. Have a wonderful evening. Thanks for all the prayers. God bless you all. We love you.

Kristi and the Koury Klan


Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

MONDAY, NOVEMBER 28, 2011

Good evening.

I hope you all had a nice Thanksgiving. We had a beautiful, quiet one. We did have a lot to be thankful for. David is still alive, his lungs are stable, and we have precious Elena. It was a great day. We were with the most important people to us. We had yummy food, including all the cookies Rachel made! We tried new recipes and we had fun. It was a great day.

Speaking of David's lungs, we found out why Renown freaked when they did the chest CT scan and saw his lungs. Connie always gives me the reports, so when I asked her for the report from Renown she said, and I quote, "I was afraid to give this one to you." You see, Oakland Children's is used to seeing David's lungs. They pretty much look for one thing, and that is cancer. Renown didn't know what they were looking for and they couldn't believe what they saw. The report said he has "hyperexpanded emphysematous lungs"~~~basically the lungs of someone with emphysema. They weren't expecting to see such 'damaged' lungs in a child. Oakland sees the same lungs, they are just more concerned with the cancer; which is stable!! Yay! But the report from Renown explained to us why he has no stamina, and why he gets fatigued so easily. His lungs are not in the best of shape! At least we have some answers about that. And the best news of all is the fact that the nodules in his lungs are stable! Thank you so much for all your prayers. I just wanted to let you know the information we found out.

Thanks for visiting and checking in on David and the Koury Klan. Have a good evening. God bless you all. We love you. {{hugs}}

Kristi and the Koury Klan

In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells. As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.

THURSDAY, NOVEMBER 24, 2011

HAPPY THANKSGIVING!

I know we have much to be thankful for. I hope you all have a wonderful day.

Kristi and the Koury Klan

TUESDAY, NOVEMBER 22, 2011

Good evening.

Yesterday was David's oncology appointment. We still didn't have any news about his scans. Connie said that they are understaffed at Children's and David's chest CT scan hadn't been read yet; neither had his bone scan. So she said that she was going to bug Dr. Martin to read the scan STAT! She was having David's previous bone scan sent to Renown so they could compare it with the new one and get it read! So we wait. During the exam Connie was a bit concerned about David's heart rate; it was very fast. She was going to put a pulse-ox on him, but she talked to Dr. Torkildson and he said to not worry about it at this time. David said he was very nervous about the outcome of his scans, and that could account for the rapid heart rate. Otherwise, he is doing ok. Well, ok considering he has lost 7 pounds!! We have got to get this kid eating. He weighs less than 130 pounds now. Please pray that his appetite will pick up and he will eat. Maybe with the holidays he will eat and gain some weight!!

Now, today Connie called and said that the scans were finally read!! WooHoo!! She said the scans are 'absolutely stable'! Yay! That was the best we could ask for. That is what we wanted to hear! Well, it would have been nice to hear NED (No Evidence of Disease), but we really weren't expecting that. At this point we are so happy to hear stable!! Praise Jesus! Whew. We will scan again in 4 months.

Connie said she was VERY frustrated about how this whole situation played out. She knows how scared we were, how frustrated we were, and how anxious we were for results. So, with that being said, she said we will do the chest CT scan at Oakland Children's from now on. We thought going to Renown would be easier; but it just didn't work out that way. We will still have to do the bone scan at Renown, on account of the fact that there is NO Nuclear Medicine Tech at Children's, but we will have to travel to Oakland for the chest CT. That kinda sucks, but we have to do what we have to do. It will be a financial strain, again, but we will do it for our son.

I want to say "Thank you" for all your prayers. I can't tell you how much it means to us to have you all praying for us. David impressed me last night. I was talking to him about how he felt about the appointment, and the waiting, and the rapid heart rate. I asked him if he is/was scared, and he said yes. I told him I am sorry, and he shrugged his shoulders and said, "oh well. Whatever happens, happens." This from my 17-year-old!! It made me proud of his attitude, and broke my heart at the same time. Cancer sucks! It has robbed him of his innocence. Kids his age think they are invincible; he knows he isn't. He can't be a regular kid. And I hate it! But I am so glad for the good news that we have dodged that bullet, again. David said we are getting really good at dodging that bullet, and we plan on continuing to do so!! Thank you so much, again, for all your prayers.

Thank you for checking in on David. Thank you for your prayers, love, and support. Thank you for being there for us. Have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

The human spirit is stronger than anything that can happen to it. - C.C. Scott

TUESDAY, NOVEMBER 15, 2011

Good evening.

Please keep praying. I must preface what I am going to say by saying that Connie NEVER calls me with results unless I call her first, never! Well, she called me yesterday. That was already a bit scary. She said the echo looks good, whew! There are no results on the bone scan yet, so don't know anything about that. But, the chest CT is the issue. She said that there are some areas of concern, so Renown is burning a disc of the chest CT and sending it to Children's to have it read by their doctors. Now, I know that Renown doesn't know David's history, so they don't have a comparison chest CT, and David has had surgery on his lungs so there is scar tissue. Please remember, Connie never calls me!! Now, in our opinion, there is really no reason for her to call and tell me there is a problem if Children's is just going to read the chest CT. She could just tell me after the fact that they did that. Oh, David's oncology appointment has been changed to Monday, 11/21. Anyway, she could have just told us at his appointment that they saw something they didn't like so they sent a CD of the chest CT to Children's. We are rather concerned about his CT scan. Please continue to pray for David. Please pray that there are no new nodules in his lungs. I just can't emphasize how scary it is that Connie called me!! We are praying for God's will, and our acceptance of whatever that is. Please keep us in your prayers. Thank you.

Thank you for checking in. I will let you know as soon as I find out anything. Thank you for your prayers. God bless you all. We love you.

Kristi and the Koury Klan

Disease progression in the lungs is in fact, the primary cause of death in osteosarcoma - Meyers PA, Gorlick R: Osteosarcoma. Pediatr Clin North Am 1997; 44:973-989.

SUNDAY, NOVEMBER 13, 2011

Good evening.

I am sorry I haven't updated before now, we have been very busy.

I finally got the call and David had his scans on Friday, 11/11/11. I wasn't able to let you know before hand as we were just too busy. He had them done at Renown in Reno. He had an echo at 10:00, chest CT around 1:30, and bone scan around 2:30. It went ok, but the echo seemed to take an awfully long time. It was really hard to go to Renown, because they don't know David's history. When the nuclear med tech was administering David's bone scan she said, "I see an injury to his femur...." I told her he has no femur! She asked what was in there and I told her a titanium rod. She said then she won't rescan looking for a bone! I thought, are you kidding me?!?! It was just frustrating because none of them know his history! *sigh* At least the scans are over, for now. They were kinda funny. They told us our co-pay was almost $3,000, and looked at us like "how would you like to pay that?" Pray we can come up with the money for that one! I guess our Christmas gift as a family is the fact that David is alive, and we have Elena!! Life is good.

David has his oncology appointment on the 29th, so I guess we will get the results then. I hate having to wait that long, but what can I do? Please pray that we get the results of 'stable' disease. Thanks.

Please, please pray for David. It has been a sucky day. I posted on Facebook that one of David's cats died tonight. It was my favorite cat, the kind of cat I always wanted! His name was Milo, and he was white with bright blue eyes! Beautiful cat! Please pray for David. He has, technically, lost 3 pets in the past 8 months. One of them was Jeremy's dog, but David loved Spike; and Spike lived here for 5 or so years before Jeremy took him to his house. Anyway, please pray for David. Thanks.

I am not really in a 'chatty' mood, so I will close 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

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

MONDAY, NOVEMBER 7, 2011

STILL NO NEWS!!!!

Good evening.

I am so very frustrated! I did hear from Connie a week and an half ago, and she said that there was no nuclear med tech at Children's......we already knew that but we couldn't tell her that. I have been in contact with Christine, the one who has always given David his bone scans, and I knew there wasn't a tech. I mentioned some changes that have happened at Children's, and Christine not being there is one of them. I am so sad about that. Anyway, Connie said that she would set everything up at Renown and she would call me back when she knew. Well, I haven't heard from her, so I called again on Friday. No answer, so I left ANOTHER message for her to call me. She hasn't called yet, so I will be calling again tomorrow. This is ridiculous! I am so frustrated. We are over 5 months since David's last scans, and over a year since his last echo (he has to have an echo every year). Please pray that I can get a hold of Connie and I can get some answers! Thanks.

David is doing ok, but he is coughing, which concerns us. That is another reason why he really needs the scans so we can see what is going on. The cough is worrisome to us. Other than that, he is doing ok. His leg still bothers him sometimes, but it always will. And now that we are really cold, his knee hurts. He still has a limp, always will. He is eating ok, but not great. I made pepper jack mac for him because he eats a lot (relatively speaking) of it because he loves it. Tonight I made white chili because he loves that, too. He had two bowls of chili tonight! Then he had a piece of my apple pie! Rachel and I have been making apple pies, and we have 7 in the freezer, I baked one tonight, I baked one yesterday, and there is still one waiting to be baked tomorrow for Jeremy and Lucy. We are set for apple pies for the holidays!! I like having my 'baking buddy' (Rachel) bake with me. Anyway, David is doing ok. He isn't sleeping very well, however. I don't know what that is all about. Please pray that we can get the scans so we can find out what is going on. After the scans David will have his oncology appointment and we will chat about these issues. Thanks.

Our weather is beautiful! We have had a couple days of snow, and it is still lingering in the backyard. Our front faces south, so the snow melts from the front first; which also includes our driveway! YAY! It is nice to have a driveway that the snow melts from! Anyway, it has been cold, so I am glad we have firewood.

I hope to have more news for you soon! Please pray that I can get some answers! Thanks. Please pray for Rachel, an osteo child in our osteo family. She is David's age, just a few weeks younger. She is struggling big time. She has more tumors in her arm, lungs, and she is in pain. Please pray that they can get her pain under control. This poor child has been fighting this monster for 6 years! Please keep her in your prayers. Thank you.

Thank you for visiting and checking in on David and the Koury Klan. Have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

If you're going through hell, keep going. ~Winston Churchill

MONDAY, OCTOBER 24, 2011

Still No news!!

Good evening.

Well, I have called Connie 3 times and we still don't have a date for David's scans. I am getting pretty frustrated and angry!! I talked to Connie last Monday, and she said that she had received an email from radiology saying that everything was approved. But, since she was in Reno that day, she didn't know off hand what the date was. She said she didn't know why Children's hadn't called me. She said when she got back to Oakland Children's the next day she would look into it and call me. Well, that was a week ago, and I haven't heard from her, or from Children's! I called again this morning and left a message. Hopefully she will call me tomorrow. They are the ones who told us that David was high risk for recurrence and we needed to stay on top of things, and they are the ones dropping the ball! David needs the bone scan, chest CT, and an echo. As it is we live in 4 month increments, and this is just making it worse! Connie has always been on top of things, and I don't know what is going on. There have been some changes there, and it isn't the same as when we were there. Pray that I can connect with Connie tomorrow so we can get things figured out. Thanks.

As far as David's leg goes, it is much better. The pain kinda comes and goes, so it could be anything. He gets extremely stiff when he doesn't use it for awhile, and it gets sore when he does use it. Poor kid, can't win! At least he is off the crutches! That is a good thing. We would like to retire those crutches forever! We have already put the wheelchair and walker into storage, we can't wait for the crutches to join them!! Hopefully soon.

Things are going pretty much the same otherwise. Jennifer is still adjusting to her new place, she really misses that extra bedroom! Oh well, we all have to do what we have to do. My precious granddaughter will be 9 months old in two days! I can't believe it! She is so much fun, I really enjoy her. She is about to cut her second tooth! She is crawling all over the place and pulling herself up on everything! She wants to be a 'big girl' so badly; she refuses baby food. She doesn't want to be fed, she wants to do it herself. I made chunky chicken noodle soup and she loves it. I just cut everything up really small, and she eats it! She is crazy! It saves money, that's for sure. She will eat just about everything as long as it is small enough. Silly girl. I am having so much fun with her.

Friday we got a load of firewood. My babysitting money goes to buy firewood. We got 2 cords on Friday. We were so sore from loading, hauling, and stacking the wood. It was dumped in our driveway; I loaded the wheelbarrow, Bryon wheeled it to the backyard and dumped it, I wheeled the wheelbarrow back to the front to load it up again while Bryon stacked the wood. We had a pretty good system going. Then when David got up (the wood was delivered pretty early) he helped me load the wheelbarrow, and he also helped Bryon stack. His leg was VERY sore after that!! But we will be warm for a while. We buy a cord as often as we can.

Well, that is about all that is happening here. Thanks for checking in. Please continue to pray for the Koury Klan. Have a good evening. 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.

THURSDAY, OCTOBER 13, 2011

4 Years Ago

Good evening.

Bryon wrote the following yesterday, but I wasn't on my computer yesterday, so I will post it today. Here goes:

"We were supposed to go camping for the weekend, but David’s knee pain was uncontrollable so Kristi stopped by the doctor’s office to try to get him a prescription for pain meds. David’s appt. with the Orthopedic doctor here in Carson was scheduled for the following Monday.

Dr. Gentner (PCP here in Carson City) was extremely upset that the Orthopedist hadn’t seen him yet. He immediately started making several phone calls. He turned to Kristi and told her to get to Children’s Hospital Oakland. We had no idea where this hospital was (besides Oakland of course!). We had no idea what was in store for us. We were just told to get there quickly, there was a doctor waiting for us. We were told to pack clothing for about 4 days, we ended up being there for 2 weeks.

Over the course of the next 12 months David had 6 surgeries, and chemo (5 different drugs) 3 weeks out of 5 for 6 months, and 2 weeks out of 4 for 6 more months. The battle almost ended prematurely in February when David was literally minutes from death suffering from an intussusception.

4 years ago today we had no idea what osteosarcoma really was, besides being bone cancer. We had no idea he was metastatic. We had no idea his doctors and surgeon would tell us that he wouldn’t live long enough to do his make-a-wish cruise in the summer of 2009 (so he chose a shopping spree instead). We had no idea that we would lose family and what we thought were close friends due to the diagnosis. We had no idea that we would make new true friends and old friends from the past would be there for us when we needed it most. We had no idea how extremely awesome and supportive my coworkers are and what a loving family DPS really is. Finally, we had no idea how tough our son really is and what a strong will to live a scrawny little 13 yr old boy has. He is my hero.

4 years ago today our life was changed forever. Through all of the terror, pain, suffering and anxiety, we have truly been blessed!"

Four years ago today we were still dealing with David's pain. It has been a long four years. I thank those of you who have been faithful to us these four years. We aren't done with this cancer journey, never will be.

David is still dealing with pain and is still on crutches. He says the pain is so bad when he tries to stand on his leg that his knee buckles. We don't know what is going on, but Dr. O will be called in the morning. I also haven't heard back from Connie, yet. I will be calling her again tomorrow. Please pray that there is nothing wrong with David's leg. It is very concerning to us! We were just at the doctor (surgeon) on Friday and his leg/knee was fine! We will see what Dr. O says. I just really hate to think about an extra trip to San Francisco! We can't really afford to do that! *sigh*

Wylene, just google rotationplasty. It is an amputation, but with great mobility~~~more than David has now. It is not an attractive amputation, and it is very strange, but it is one David is sure is in his future. If there is a break or something with this new prosthesis, who knows? Maybe the rotationplasty will be sooner than we think! We would just covet your prayers for David at this time. Thank you so much.

Thanks for checking in and up on David and the Koury Klan. Have a good evening. 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.

SUNDAY, OCTOBER 9, 2011

FALL IS HERE!!

Good evening.

Fall is definitely here!! We even had snow on Thursday. It pretty much snowed all day. It was a warm snow, so it melted as soon as it hit the ground, but it sure was pretty!! It was cold, obviously. We had a fire in the wood burning stove! It will be getting warm this week, up into the 70's, but it was a nice taste of what is to come! And since it as been in the 20's overnite, I am hoping the pollen will be gone! Bryon said most of the rabbit brush is dying or already dead, and I am glad!! My eyes are sooooo itchy!! And I can't sleep because I can't breathe! And David is having a tough time sleeping, too. Please pray that we can be over these stupid allergies soon! Thanks.

David had a doctor appointment on Friday in Pleasanton (instead of San Francisco) with the surgeon. We had to leave at 4am so we could get there in time. We would have rather left the night before, but #1 we really couldn't afford it; and #2 David didn't want to miss Bible study Thursday night. So we left early Friday morning. We took Elena with us and she did fantastic! Poor baby was in the car a total of 9 hours and only fussed for maybe 30 minutes tops, TOTAL! She never had a meltdown, never really cried, just kinda fussed occasionally. We are so proud of her. And she sure was a hit at the doctors office. Anyway, it was a good appointment. Because our insurance has changed and there are so many out-of-pocket expenses now, Dr. O'Donnell said that to save us money he will have David come only once a year. Of course, if David has problems we will see him, but check-ups will be yearly now. So that will save us a bit of money, for sure. As far as David's leg goes, he is having a bit of 'trouble' with it. He still feels the pinching in his knee, and Dr. O said that is probably scar tissue under the kneecap. He said that eventually he will need to have the kneecap scraped, but for now he will kinda have to 'deal with it.' There is nothing the doctor can do now. Also, there is a spot on the scar that looks strange, and Dr. O said it is a stitch that is trying to work it's way out. He said just keep an eye on it, and if it turns red or starts draining fluid then give him a call. Otherwise, just let it be. He said that the area with the spot has had a lot of trauma, with all the lengthenings and all, so that is why it is having more difficulty healing. Overall, it was a good appointment. But David is having some trouble with the back of his knee now. He is back on crutches, again. Please pray that the pain goes away. If it doesn't get better, I will be calling the doctor. It could be the cold, but we don't know. Dr. O said that the cold probably bothers David because he is so thin (yeah, he has lost about 3-4 more pounds, GRRR) and the metal in his leg is closer to the surface. David has no lower quad muscle, so there is only skin between the outside and the metal rod! Please pray that his knee feels better. Thanks. So, we don't have to go back to Dr. O for a year! YAY!

I haven't heard from Connie on when David's scans are. I will be calling her tomorrow. It has been over 4 months now, and he needs the scans done! He also needs an echo; it has been a year since he had one. He has to have one every year, because one of the long-term side effects of chemo is heart issues. Please pray that I can get some answers from Connie. Thanks.

I posted a quote on my facebook that I got from a fellow Osteo mom, and I am going to re-post it here. Here goes:
Osteosarcoma doesn't have lifestyle risk factors, doesn't run in families, you can't cut your risk of getting it by eating vegetables or staying fit, there are no warnings or a certain age that you should start screening for it. There is also no world recognized symbol for awareness, nor new breakthroughs in the labs. The treatment is cut, poison, and burn (surgery, toxic chemo and radiation) and has been the same for over thirty years without ANY advances. Save the ta ta's? Some children never grow old enough to have them!
That is sooooo true. Please continue to get the word out about Childhood Cancer.

Four years ago today I got the phone call that David had a bone tumor. Four years ago yesterday David had his first (of many) MRI. The doctor called me the next morning (four years ago today) to tell me that David had a bone tumor. Four years ago today our world was turned upside down and our lives were FOREVER changed. Three years ago David completed chemo. He is alive today only by the grace of God; we were told he wouldn't live this long. Praise God they were wrong! We cherish every day we have with him, because we never know. Four years. I can't even imagine what my son has been through in the last four years, physically, mentally, and emotionally. He amazes us.

One thing that is concerning to us is that he has been talking a LOT about rotationplasty lately. We know he knows how limited his mobility is with the limb-salvage, and he would have much better mobility with the rotationplasty. He has said that he knows he will do it, he just doesn't know when, yet. Please pray for peace for my precious son as he makes decisions for his quality of life. It is his choice, it is his life. We made the decision for him to do limb-salvage, and we sometimes think it was the wrong decision. All I can say is please pray. Thanks.

That is about it for now. Thanks for visiting and checking in on David and the Koury Klan. Have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells. As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them

FRIDAY, SEPTEMBER 30, 2011

Good evening.

SEPTEMBER, to many it is just another month - but to those who have a child with cancer or for TOO many of US who have lost a child/young adult to this monster. We know this month as:

CHILDHOOD CANCER AWARENESS MONTH

Below are some facts: Sadly we have been relaying these exact same facts now for years. Wouldn't you think that with all the research out there - these numbers would be changing...... they have not for the many with Osteosarcoma or the many other sarcomas - because these cancers receive only 1% of any money raised.

Heartbreaking isn't it!

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 their 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:

Well, today is September 30th, the end of Childhood Cancer Awareness Month. So, how many of you heard anything about it this past month? Yeah, I didn't hear anything, either. My Facebook is full of gold ribbons; those people get it! They are parents of children with cancer. There are pink ribbons all over everywhere! On cat food, cat litter, salt and pepper shakers, water bottles, coffee cups, etc. EVERYWHERE!!! I don't remember seeing even ONE gold ribbon! The sad thing is, the pink ribbons all stand for support for the Susan G. Komen Foundation. Well, a little known fact of SGKF is that not all of the money they raise goes to breast cancer research. They spend millions of dollars a year on lawsuits! They sue anybody and everybody who uses the phrase "for the cure" (or any facsimile) in their fund raising. I will post a link to the report of what they do. I wish they would give the money that they waste on lawsuits to Childhood Cancer research!! It makes me so angry. I wonder if all the people who think they are supporting breast cancer research really know where their money is going. Yes, I am bitter about this. Our children need help! Our children need a cure! WAY more children die every day from childhood cancer than women. It is the 46/7 rule for kids. 46 children are diagnosed with cancer EVERY DAY, and 7 children die from cancerEVERY DAY! It has GOT to change!! I, for one, refuse to buy anything with a pink ribbon on it. And my favorite color is pink!! Sorry, I will get of my soapbox.
Here is a link reporting the activities of SGKF:
http://www.huffingtonpost.com/2010/12/07/komen-foundation-charities-cure_n_793176.html?ref=fb&src=sp&comm_ref=false

I can't believe this year is so close to being over. It is just screaming by! Our weather is definitely turning to fall!! I love it! All the trees are changing and it is gorgeous! Fall is my favorite season. the only bad part is my allergies are the worst in the fall! So we are living on Sudafed and Allegra (in generic form). Can't wait for the first freeze to kill all the stuff I am allergic to! Bryon and Jennifer are suffering, too. David is a little bit, but I have him pretty drugged up, too.

Thanks for visiting and checking up on David and the Koury Klan. Have a good evening. God bless you all. We love you.

Kristi and the Koury Klan

SUNDAY, SEPTEMBER 25, 2011

Sorry it's been so long

Good evening.

Wow, I can't believe it has been so long since I posted!! Things have been rather busy. My thoughts have been focused on this time of year, 4 years ago. David had already been to Urgent Care to see why his knee was hurting. That doctor told us he sprained it, as most 13-year-olds are prone to do. He said to ice it, wrap it, and for David to take Aleve for the pain. And it should be fine in 2 weeks; but IF not, take him to his primary care physician. Bryon and I went away for the weekend for my birthday, and I remember being worried about David the whole time. This has been a very long, and busy, 4 years. We still didn't know, at this time, that David had cancer, but we knew something wasn't right. Cancer was the absolute farthest thing from our minds! We would have NEVER guessed cancer!! Especially a cancer we have never heard of! Anyway, that is where my thoughts have been the last couple of weeks.

The end of September is approaching and Childhood Cancer Awareness Month has almost 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. It is frustrating. I really don't blame most people, I wasn't aware that September is Childhood Cancer Awareness Month until it happened to me. I want more funding so there can be a cure, so no other parent has to hear the same words we heard almost 4 years ago. Please get the word out there!!

We have been busy, as I said before. Jennifer is trying to adjust to her new place. She really misses that second bedroom! We had to rent a storage place for some of our stuff, so she is storing some of her 'extra' stuff there, too. And with her helping to pay for it, it is a big help to us!! Poor thing had to move to a much smaller place, but she likes it. And it saves her money!!

David is doing ok. We are starting to get 'scanxiety' as his next set of scans are in less than 2 weeks!! It sucks that this NEVER gets any easier. Actually, as time goes by it can seem to get scarier. Remember, we were told that the word 'remission' is not used for Osteosarcoma. And David still is at high risk for recurrence (duh, it is back in his lungs) so we just pray those stable nodules in his lungs stay stable. It would be nice if they were to just disappear...... *sigh*

I can't believe my precious granddaughter will be 8 months old tomorrow!! Where has the time gone?!?! She is crawling, just cut a tooth, standing up on everything, and just as cute as can be!!

Please continue to pray for the Koury family as we face many changes in our life right now. I have a couple 'unspoken' prayer requests, God knows what they are. Please pray. Thank you.

Thanks for checking in. Have a great evening. God bless you all. We love you.

Kristi and the Koury Klan

MONDAY, SEPTEMBER 12, 2011

Good evening.

Sorry I haven't posted for so long; we have been very busy getting the house all cleaned. I honor of September being Childhood Cancer Awareness Month, I will re-post a 'poem' that I read a few years ago. It is VERY true, as any cancer mom (or dad) will tell you. It brings back many memories for me as I have been there! Here goes:

Cancer Moms I belong to a special group of women My friends and I have an amazing bond. We never wanted to be in this group, Yet we are in it, for life. Maybe we have met, maybe we haven’t, Yet our love for each other is boundless. We know the pain the other one feels, And we share our victories small or huge. Words like chemo, IV, Zofran , bald heads Are always parts of our conversations, As well as roidrage, tears, and meltdowns We always know where the closest puke bucket is, We can hold it in one hand and if necessary, Swallow the sandwich the other hand was holding. We can drive to the hospital , Park in the dark parking garage Make our way thru the halls of the hospital And to the appropriate floor, Settle in a room, turn the TV on, Give instructions to the head nurse, Silence loud beeping IV pumps,

Direct a wagon AND an IV pole To the playroom without hitting anything. Make our way back to the correct room. And all this, mind you, With our eyes closed, at any given time.

We know how to draw blood from lines Sticking out of little kids chests.

We can hold them down with one hand, While a nasogastric tube is inserted in their little nose,

And be on the phone with their dads at the same time. We can live for days on hospital food, And on maybe only one meal a day . We know the names of up to 20 different drugs, Their purpose, dosage and time to be taken. We are always on call, 24 hours a day , Seven days a week. We are used to not always looking our best, Hard to do with only a few hours of sleep. Make up , hair styling, skirts are words of the past . We have become addicted to texting , hospital, clinic, home, wherever… We talk sometimes at all hours of the night , We know we can count on someone to be up.

Then for one of us, the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on. Remember, I said we were in this forever.
We are friends, sisters, temporary nurses, We are each others rock, each others punching bag, We listen, we vent, we cry, we laugh together . We share our lives and our deaths We share our pain and our victories. We are strong, but not by choice , Sometimes we win, sometimes we lose, But never are we defeated. We are not nurses. We are not doctors. We are cancer moms.....

I do not know who wrote that, so I don't know who to give the credit to, sorry. But I know any one of my fellow cancer moms could have written it. We live a life NONE of us want or planned. We know WAY too much about the 'medical field' without the formal training, we had to learn it the hard way. Please help raise awareness for Childhood Cancer. Please remember to pray for all my fellow cancer moms (and dads).

Thank you for checking in. Have a good night. God bless you all.
Kristi and the Koury Klan

TUESDAY, SEPTEMBER 6, 2011

Good evening.

Thank you for your prayers for my granddaughter. A couple of the tests they ran came back negative/normal, they are still waiting results on another test. They hope to have the results of that test by the end of this week. Please continue to pray for Jeremy, Lucy, and Elena. Thank you.

I know childhood cancer isn't just about Osteosarcoma, but I am going to re-post something I posted a couple of years ago. It is a tribute to all the Osteo kids out there~~fellow members of a family none of us want to be part of. Here goes:

Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. I know some of these kids; besides mine. Some I only know through a website; a couple others I know personally. I know these children's lives have forever been changed by an uninvited monster called Cancer~~Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in David's case) from surgery to surgery. And once treatment is over; from scan to scan~~for the rest of their lives!!! I don't know any adult that could handle the brutality of this life, and yet I watched my son and others endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in the children that I have watched go through this than I have seen in all the adults in my life put together! I know I wouldn't handle it as well as these children have. I am so proud of David and the others! They are truly amazing children. I really wish all of you could know David and the other warriors~~you would be richly blessed by these children.

Childhood Cancer does all the above to all children, in different ways, but the end result is the same. They do put life into perspective. We MUST find a way to cure childhood cancer!! Please get the word out there! Please help raise awareness. We have this one month to do it. Then we will be pushed aside for pink and breast cancer. Please! All us cancer parents out there beg all of you to help! Our children are our future!

Thank you for visiting. God bless you all.

Kristi and the Koury Klan

SATURDAY, SEPTEMBER 3, 2011

Good evening.

Before I post some facts about Childhood Cancer, I have a prayer request. Please pray for my precious granddaughter. She is having some problems, and they were at the hospital with her today. Please pray that the tests they ran come back negative. Thank you.

Here are some very interesting facts concerning Childhood Cancer. I think it is high time that it gets some attention. IT IS ABSOLUTELY A PLAGUE IN THE US: DID YOU KNOW? * In the U.S. almost 3000 children die from cancer each year, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. * Cancer is the number one disease killer of children between ages of 1-20 *1 in 330 will be diagnosed with cancer by age 20. *The incidence of childhood cancer has increased EVERY year for the last 25 years! * In the past 25 years ONLY ONE new cancer drug has been approved for pediatric use. Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments. *At the time of diagnosis in children, the cancer has already spread in 80% of the cases. That is compared to the 20% in adults *As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year. * The National Cancer Institutes federal budget is about $5 Billion. Less than 3% of the budget goes towards all pediatric cancers combined. The rest goes toward adult cancers. Breast cancer alone receives 12%. Prostate cancer receives 7%. *The government recently cut the budget for Childhood Cancer.
You can make a difference. Write to your representative and congressmen telling them you are outraged by these facts.

Thank you for visiting. Have a good evening. God bless you.

Kristi and the Koury Klan

THURSDAY, SEPTEMBER 1, 2011

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 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. How many people do you know who have quit reading your blog because it is too uncomfortable (I know that first hand; a specific member of my family won't read this; someone who I thought would care about David. Guess I was wrong!)? 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. My child is one of those teens, and I am one of those parents. We need awareness and funding. We need a cure!

Again, enough said. Thanks for visiting. God bless you all.

Kristi and the Koury Klan

WEDNESDAY, AUGUST 31, 2011

September is here

Good evening.

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.

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.

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.

That is it for today. Enough said. Thanks for visiting. God bless you.

Kristi and the Koury Klan

SUNDAY, AUGUST 28, 2011

Good evening.

We had some exciting visitors last night and this morning. We finally met Tim and Jill Reamer from our support group website. They are from Minnesota and they were in CA visiting their daughter and decided to take the northern route home. So, they stopped by our house last night after they got into Carson City. Then they stopped my again this morning because we forgot to take pictures!! It was so wonderful to put a face to a name. They lost their son, Nick, to this monster called Osteosarcoma almost 18 months ago. It was so good to meet them, even though it felt like we were already old friends!!! We are members of the same family, a family none of us wants to be members of. They are great people, and we are glad we finally got to meet them.

I forgot to mention one thing about the fly fishing event. It is something that just wasn't right. Something that just broke my heart. As we were sitting at the table eating lunch, there were 2 little girls across from us. Adorable little girls. One was 7, and the other looked to be about 6. Anyway, as we were eating, the little girls were talking, and their conversation should NEVER have come out of little children's mouths. The seven-year-old had pretty long hair, and the other one had VERY short hair. Well, the one with the short hair asked the other one how long it took her hair to grow back. Then they were asking each other about chemo treatments, broviacs and ports, names of chemos, how long ago was their cancer, how old they were when they got cancer, and comparing scars. What the heck is that all about!?!?! Little children should know NOTHING about any of this!! It just wasn't right.

We only have a few days left of August, then we go on to September. I will be posting things I posted last year about what September is. A sneak preview, if you don't know, is that September is Childhood Cancer Awareness month. I will be posting things about what that means. Just so you know.

That is about it for now. Thank you for visiting and checking in on David and the Koury Klan. I hope you have a good evening. God bless you all. We love you.

Kristi and the Koury Klan


Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

THURSDAY, AUGUST 25, 2011

Good evening.

I am so sorry I haven't updated lately, we have been so busy.

Jennifer is completely out of her old apartment. And it is all cleaned. She just needs to turn in her keys! Now she is working on getting her new place set up. It is difficult going from a two-bedroom apartment down to one. She had to put some of her stuff in storage along with our stuff! But that is ok. She had to find a place with cheaper rent. She misses having that extra bedroom (David loved going over there to spend the night), but it is fine.

School started on Monday, and it is strange for me. For the first time in 24 years we don't have a child starting school! It is bittersweet for me. I just feel 'left out' of all the back-to-school hoopla. That is why it is bittersweet.

David is doing well. He is driving when he can, and he is a very good beginner driver. He really enjoys it. He even drove on the highway for quite a while on Saturday.

Saturday we went to the 'Reel Kids. Real Living' again this year. It is the fly fishing event we went to last year. David had a great time. He even caught a HUGE fish!! I will post pictures of it when I get them from Lizzie. He was the only child who caught a fish that whole morning!! His first fish got away, but he did land the huge one!! Woo-Hoo! It was great! It is catch and release, so we didn't get to eat the fish, but it was still fun. We didn't fish after lunch, David needed to go home. But he did drive home, and he did great! So he is doing great with his driving.

My beautiful granddaughter will be 7 months old tomorrow! I can't believe it! Where did the time go?!?! I am having so much fun with her.

Well, the summer is pretty much over. We are looking forward to fall and the start of the holiday season. We are a family that doesn't really like summer; but we have had a very mild summer. We can tell our tree is ready for fall, at least a third of the leaves are yellow!! And the grass is covered with leaves. It is beautiful. I just am not looking forward to the allergies!!

That is about all that is happening around here. 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

'When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.'~~~Alexander Graham Bell

A good article on nutrition and how it relates to cancer

The Benefits of Healthy Eating To Help Fight Cancer

For cancer patients who are looking to improve the quality of life during cancer treatments, nutrition can play a vital role in helping control this deadly disease. According to Cancer.gov, patients that are dealing with cancer should be concerned with minimizing the amounts of alcohol and sugar in the diet while eating healthy and increasing time that is spent exercising. These minor improvements in their diets can increase the body's natural healing abilities and may help fight cancer or help in the treatment process.

Alcohol plays a dangerous role in its association to many cancers such as breast cancer, testicular cancer, brain cancers, and mesothelioma. In addition, reducing the amount of alcohol that is consumed after treatment can help increase the chances of remission and the ability for treatment to be successful. If you must drink alcohol, it is suggested that patients limit the amount of alcohol consumed to one drink per day.

Patients that are dealing with terminal cancer can also help their body prolong this disease. Diets that are very high in sugar can reduce one’s life expectancy by helping aid the production of cancerous cells. Cancer cells are able to replicate faster when there are high amounts of sugar in the bloodstream. By limiting the amount of sugar that is ingested, the body is able to reduce the chances of redeveloping cancer after treatment. Diets of people are found to have minimal risks of cancer include lean meats, nuts, vegetables, whole grains, and fruits have a blood sugar level that is healthy at a level of between 50 and 90 mg/dL. Patients that consistently intake more sugar than average have an increased risk of developing cancer. Yes, it is a small increased risk, but that is still scary.

Exercise can also help protect the body from cancer by allowing the body to be in peak physical condition. Running, cycling, or swimming can all help strengthen the body's immune system, which may lead to a speedy recovery from treatments such as chemotherapy or radiation therapy. Aerobic exercise that lasts up to one hour may help significantly increase the chances for a full recovery from cancer. For cancer patients that are still weakened by treatment, working out slowly and gradually increasing intensity is often the best way to incorporate an exercise program into your life. Furthermore, a healthy diet that includes greens, fresh fruits, and lean meats will only further enhance the ability for the body to recuperate when dealing with cancer. Give your body the best chance it has at defeating this deadly disease.

By: David Haas