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