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. 

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

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

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, 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

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

THURSDAY, FEBRUARY 9, 2012

Good evening.

Four years ago at this very moment David was being prepped for a CT scan of his belly. He was 5 days out from limb-salvage surgery, and he was extremely sick. His bowels hadn't woken up from surgery yet, and they didn't know why. He kept vomiting, and the tube down his nose into his belly was sucking green bile, so earlier in the day he had had an endoscopy, and they still didn't know what was wrong. They found a lot of internal trauma from vomiting, and his ulcer, but no conclusive reason why he was vomiting. After the endoscopy we noticed he was laying in a pool of blood, so they knew something was wrong! He had been given several blood transfusions throughout the 5 days, but he was still passing blood, and they didn't know why. So they decided (after multiple xrays every day) to do a CT of his belly. Then they found the intussusception. At midnight the pediatric surgeon came to David's room and told us they were gathering the surgical team together and they will be doing emergency surgery on David ASAP. They knew he had an intussusception, but they were also going to do some exploratory surgery while they were in there. That is when they removed 15 inches of his bowel and resected it. They told us he might come out of surgery with a colostomy, but he didn't. We were very thankful for that. They told us he was pretty bad off inside. Basically, he should have died. (Left untreated, a person will die within 2 to 5 days of an intussusception.) He was bleeding internally, and his bowels were extremely necrotic, and he should have died. My son has an incredible will to live! He is such a tough kid. These memories are difficult for us, but we are so glad they are just memories! David has been through so much, and we are so thankful he is still alive; and doing well. We praise God for the doctors and how they saved his life. Two very major surgeries in 6 days. David, thankfully, doesn't remember much about those 5 days. He does remember that the emergency surgery is the ONLY one of all 12 surgeries that he wasn't scared about. He just knew the surgery would take his pain away. Recovery was very difficult as he tried to heal from both of those back-to-back surgeries. My poor son's young body is so covered with scars; we call them 'war wounds.' He fought a battle, and (so far) won. We just pray he continues to win this battle. We remember this time like it was yesterday. Surgery started at 1:00am and ended at 5:30am. Bryon and I walked the halls of the hospital all night long. I think it was one of the longest nights of our lives! We are so thankful to be on the 'other side' of that nightmare! David medically should have been dead, but he's not! Praise God!!

I just thought I would post where we were 4 short (long?) years ago. I wanted to remind you old-timers (and inform newcomers) of how far David has come in his journey. Thank you for visiting and checking in on David. Thanks for reading. God bless you all. We love you.

(The picture above is the day after the emergency surgery)

Kristi and the Koury Klan

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us"~~E.M. Forster

SATURDAY, FEBRUARY 4, 2012

Four Years Ago

Four years ago today David had his first limb

salvage surgery. Four years ago today was a VERY stressful day. We had to be at the hospital very early for surgery. David was

soooo scared! He was so funny; after they gave him the 'happy medicine' he was feeling better. He was still scared,

but the medicine helped calm him down a little bit. The surgery went well; but he was in recovery for about 5 or so hours because they couldn't stabilize him.

We didn't know at the time, but it was because he had developed a non surgery related complication~~~an intussusception.

We wouldn't know for 5 days what was wrong with him! But today marks the four year anniversary of the removal of David's right femur and knee (and lower quad muscle, and cancer), and replacing them with an artificial knee and a titanium rod. As Jeremy said, "It's only been 4 years already?" At times it seems like a lifetime ago; at other times it seems like such a short time ago. I have no concept of time anymore. Life was at such a seeming standstill for that year that David had chemo, and I feel like I lost a year of my life. So now I have no concept of time!! Anyway, I just wanted to let you know that it has been four years since David's first limb salvage surgery. Thanks for visiting and checking up on David. Have a good night. God bless you all.

We love you. Kristi and the Koury Klan
The only thing worse than being diagnosed with cancer is watching your child go through it.

MONDAY, JANUARY 16, 2012

Good evening.

I am sorry I am so remiss in updating. We have been very busy.

This year is just motoring right along! January 6th was Bryon's birthday. It was a good day. Today is my firstborn child's birthday. Happy Birthday, Jeremy. I can't believe I have a 30-year-old son! How did that happen? I remember the day he was born like it was yesterday!! And in 8 days it is my and Bryon's anniversary! And in 10 short days my precious granddaughter turns 1!! Unbelievable!! See, it is a busy month.

David is doing ok, he is holding his own. He still doesn't eat much, however. We would really like to see his appetite pick up! Nothing appeals to him. It is so frustrating. Otherwise he is doing ok.

Please continue to pray for Fiona and for Rachel. These two beautiful girls are amazing. Rachel was able to graduate (early) from High School on Friday. It was on her 'bucket list' and I am so glad that she was able to fulfill that wish. This is what the paper said about her, "(Rachel ) Collett, who's under hospice care, might not make it to June, her original graduation date. So the Livonia Public Schools staff arranged a private graduation ceremony five months early just for her. She was wheeled onto the stage, wearing a red cap and gown, while a recording of 'Pomp and Circumstance' played softly in the background." I'm so happy she got to graduate, I know how important it was to her. The cancer is in her ribs, spine, hips, and lungs; and she is in pain. Please continue to pray for both of these girls. It is so hard for me to hear of kids suffering from the same monster that is laying stable in my son. I feel like he is a ticking time bomb~~~when will it come alive in him? We are always waiting for the other shoe to drop. *sigh* Anyway, I really appreciate the prayers for Rachel and Fiona.

We woke up to snow this morning! It has been cold, so it was a nice surprise. I forgot to tell you that the lowest temp we had last year was on Christmas Eve, the low was 1.1 degree!!! It is supposed to be 3 tonight, so we think it will be colder. The low Christmas Eve was predicted to be 8, so it is usually lower than they think it will be. We will see.

I have another prayers request that I can't divulge at this time. Since God knows what it is, please pray for God's will in this matter. Thanks.

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

Kristi and the Koury Klan

Cancer is a strange cell. You can go along for years in remission, and then one day it pops it's head up again. If you ever have it you will never be free of it. Pray for the day there will be a permanent cure. (I can't remember where I read this)

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.