Monday, August 31, 2009

Good evening. Sorry I haven't written in a while. It has just been rather stressful around here.

David is doing ok. He had PT today. He got a little hot, but he felt ok; which is fantastic!! He works so hard at PT. I am so very proud of him. He still hasn't received his school work yet; not really sure what the hold up is. He will just start school when he gets the work. We have been on a flexible schedule for so many years, it doesn't really matter. That's one of the beauties of home-schooling!! So he is just continuing to enjoy his summer.

Please continue to pray for the 'special request' I asked you to pray for. Thank you.

Please continue to pray for Sara. She had her limb-salvage surgery today. I haven't heard how she is doing, but I will let you know. Also, please continue to keep Mattie and Sammie in your prayers as they are losing their battle with this deadly cancer called Osteosarcoma. Thank you.

By the way, September is Childhood Cancer Awareness month. I pray that someday the gold ribbon will evoke as much passion as the pink ribbon does. Aren't our children important? After all, they are our future! Tell everyone you know that September is Childhood Cancer Awareness month. Thank you.

Thank you for checking in on David and the Koury Klan. God bless you. We love you.

Kristi and the Koury Klan

September is Childhood Cancer Awareness Month…the general public is not aware of this!
The Gold Ribbon is the symbol for Childhood Cancer…the general public is not aware of this either!
The fact that September is Childhood Cancer Awareness Month and that the Gold Ribbon symbolizes Childhood Cancer goes largely unrecognized across our country.

Tuesday, August 25, 2009

Good evening.

I gave David some zofran this morning because he had PT. Well, he still got nauseous. I am just getting so tired of seeing my son nauseous! He needs to do PT for his quality of life, but he gets nauseous as he is doing it! Poor kid. He had his fan and his water bottle with ice water in it, but it didn't really help. He worked with Lu Ann today, and she is great with him. He is used to her because he works with her in the pool on Thursdays. He will see Lu Ann this Thursday in the pool. He did all his exercises, because he is a fantastic trooper. He just did them not feeling well. *sigh* Maybe someday we will see an end to this.

Please keep praying for our special request. It needs a LOT of prayer, we still aren't 100% sure how it is going to pan out. Thank you so much for your prayers. We really appreciate it.

Thank you for checking in on David and the Koury Klan. God bless you. We love you.

Kristi and the Koury Klan

Cancer is like a roadtrip. You begin your journey knowing the destination, but do not know what's in store. Detours, pot holes, exciting adventures around every turn! But you still drive on!

Monday, August 24, 2009

Good evening. Yup, school days are here again.

David is doing ok. He has PT tomorrow instead of today. Usually he has it Monday, Thursday (pool), and Friday. But this week he goes Tuesday instead of Monday. He liked the longer weekend; but doesn't want to go tomorrow, of course. He tries so hard, and he works so hard. I am sooo very proud of him.

He hasn't started school yet. The online school he will be attending; Beacon Academy of Nevada; hasn't sent him his stuff yet. I know we will be getting it soon. David is not wanting summer break to be over quite yet, of course. But sometimes it is nice to get back into a routine again.

We still need prayer for our special request. Please, please pray hard. Thank you.

Thank you for checking in on David and the Koury Klan. God bless you. We love you.

Kristi and the Koury Klan

Pediatric cancer is a punishing disease for children and their families. And the often harsh treatments for cancer can impede youngsters' development at a crucial time.

Saturday, August 22, 2009

Good evening.

Today was a pretty good day. We went to Lake Tahoe (about 20 miles from our house) to see some good friends. They have been our friends for a very long time. Larry, Michelle, Vanessa, and Bethany, it was GREAT to see you!! We miss you, and we love you. Larry and Michelle came to see David in the hospital several times. They were there when David was dying and nobody knew why. They were there with us when David had his endoscopy. Bethany came several times, too. We haven't seen them for a while, and it was wonderful to see them. They were spending the weekend around Tahoe, and so we went up to see them.

David wasn't feeling well today, tho. That was the down side of the day. We were walking around a street fair type thing, and David got too hot, and worn out, so he wasn't feeling good. So David and I just went and sat in the car. He still just doesn't have his stamina back yet. *sigh* It wasn't even that hot at the lake. It was overcast and beautiful. I just need to be more patient with him, it isn't his fault. I just wish I could have the old David back. This new David is just not the same. Even though I long for the old David, I have accepted the new one. I don't like what has happened to my son, but we will learn to live with it. So that was our day today.

I neglected to say 'Thank You' to the person who donated to David's account. I am sorry I didn't say thank you sooner. Your contribution is greatly appreciated, and needed. May God richly bless you for being so thoughtful.

Well, that was all that happened today. I hope you all had a great day. Thank you for visiting and checking in on David and the Koury Klan. God bless you. We love you.

Kristi and the Koury Klan

Confucius said it best "The smallest gesture is better than the grandest intention"

Thursday, August 20, 2009

Good evening.

David did well in the pool today. We are giving him milkshakes every night. He isn't eating that well, so hopefully the milkshakes will help. Please continue to pray for his weight to climb. Thanks.

The special prayer request I asked about still needs prayer; a LOT of prayer. Please continue to pray. Thank you.

Please pray for another child with this ugly monster called osteosarcoma. Her name is Sara and she will be having her limb-salvage surgery on August 31. Please pray for her and her family has they prepare for this life-altering surgery. Even though we know how necessary the surgery is, our children are never the same afterwards. For the 'newbies' to this site, I will repost something I have posted already. Please bear with me as you read it, again. 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, skateboards, 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; Chris and little Teagan 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. I don't know any adult that could handle the brutality of this life, and yet I watch my son, Chris, and Teagan 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 three 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, Chris, and Teagan! They are truly amazing children. I really wish all of you could know David, Chris, and Teagan~~you would be richly blessed by these children.

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

Kristi and the Koury Klan

Wednesday, August 19, 2009

Good evening.

We are emotionally exausted; things aren't going well with the prayer request I asked you to pray about. Just keep praying. I don't know how it is going to play out.......

David has PT tomorrow in the pool. Please pray he does well. Thank you.

Thank you for your prayers. God bless you all.

Kristi and the Koury Klan

Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.

Monday, August 17, 2009

Good evening. It was just another day in paradise in the Koury Cancer Center.

It was a beautiful day today. David did better in PT today. I brought his water bottle for him and his fan that squirts water. He did better. He is still sore, but he just plugs along. His arms are sore from the activity he did on Saturday with the Teen Bible Study group. They had water balloon fights, and they threw around a football. I would have thought his arm muscles would be stronger with all the PT he does...but that is really more his legs than arms. But, overall, he did better today. YAY!! Thanks for the prayers. Lu Ann even told him he is getting way too comfortable there now; he gets sassy! Not in a disrespectful way, just a goofy way. He is a nut. But at least he is talking to them and 'playing' around with them. I am happy about that.

Please continue to pray for all our osteo children fighting this horrible monster. God knows all their names. Please continue to pray for Sammie and Mattie as they are losing their battle with this ugly monster!! Also, please continue to pray for our specific request. Pray hard, please!!! I can't wait to be able to write and tell you that it all worked out the way we are praying. That will be a fantastic day.

You know, I am so happy to be writing to you about how well (relatively) David is doing. The reason is; if you don't remember, our oncologist didn't expect him to be around this summer. We were told to do his Make-A-Wish last summer, before he was done with treatment, because they told us they didn't think he would live to see this summer!! Guess what!? He is still here! See, nothing is impossible with God. Of course, I don't know how long we will have him with us, but he has outlived the doctors' predictions. That is why I know God can work out the other request I have. When we get the 'good news' I want, I will be sure to tell you!! Bryon and I were talking about how much fun it is when we go to David's surgeon. That is because Dr. O'Donnell is always beaming at seeing David still alive! He told us, almost 2 years ago, that David had the biggest tumor he had seen; and being metastatic made David's prognosis extremely poor. His prognosis hasn't changed, but the doctors are all so excited to see him still alive!! I just wanted to share that with you all. Remember, (as I have read on other sites) writing is very therapeutic for me. Thank you for listening.

Thank you for your prayers, love, and support. Thank you for checking in on David and the Koury Klan. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Osteosarcoma (osteogenic sarcoma) is a highly malignant tumor. It characteristically presents between the ages of 10 and 30 years and has a male predominance. The tumor is usually treated with wide tumor resection and adjunctant chemotherapy. Despite treatment the prognosis is poor and a fatal outcome is the rule. (David will break that rule, God willing)

Friday, August 14, 2009

Good evening. It is a rather chilly evening tonight. I think our cold snap a couple of weeks ago confused our trees, they are all turning into their fall colors! That or we are going to have an early fall!! That would be fine with me! Fall is my favorite season.

David had a tough time in PT again today. He got nauseous and his stomach hurt. It was NOT hot in there, so we don't know what the deal is. He had a hard time doing his exercises, too. He said his thigh (where the implant ends) is very sore. It also still 'clicks' a bit when he straightens his leg. Linda said we need to keep on eye on that; not sure why that is happening. We are just hoping he didn't do damage to the prosthesis when he hurt it camping. I guess time will tell. He just had a very difficult time in PT today. Poor kid. But he still did most of his exercises; he just did them in pain. Please pray that this prosthesis isn't damaged and that his pain will go away soon. He refuses to take pain pills, and I won't force him to take them. He already takes enough medicine. Thank you for praying.

Tomorrow he is going to a function with the Teen Bible Study he will be starting next month. Tomorrow it is 'Water Wars' at the park. He is looking forward to it. It isn't going to be that hot tomorrow, so I hope he doesn't get too cold, being wet and all. It will be good for him. He just won't be able to run around, but he can still have fun. Please pray that he has a good time and he doesn't get hurt. Thanks.

Well, it is late. Thank you for checking in on David and the Koury Klan. Have a good night's sleep. God bless you all. We love you.

Kristi and the Koury Klan

The COG (Children's Oncology Group) reduced enrollment in their clinical trials by 400 patients in 2007 and put about 20 new studies on hold indefinitely related to resources available to fund them. (Just a reminder, David was diagnosed in late 2007)

Thursday, August 13, 2009

Good evening. It is a beautiful evening here. Very windy!!

David did very good in the pool today. He didn't get nauseous, yay! But, he usually doesn't get nauseous in the pool. But he did real well. Thank you for your prayers.

He is eating a LITTLE bit better. Still not as good as we would like him to eat......but still a wee bit better. Tonight I made a dinner that he loves; Southwestern Spaghetti; so he ate a good portion of it. He didn't want any salad, but that is fine. And he drank his chocolate milk with his dinner, too. I will be making him a milkshake tonight.

We had a good time at our support group meeting last night. It is good to connect with other parents who are in pretty much the same boat as we are. It helps to not feel so alone in this journey. With all the 'friends' (and others) that have abandoned us during this time, we have felt pretty alone. But you know what? I have learned a lot during the hard times. I have learned a lot about the kind of person I want to be. The kind of friend, mother, grandmother, mother-in-law, etc. that I want to be. I also have learned what kind of person I do NOT want to be. We have talked to the friends who are still there, and we have vowed to them that we will be there for them, no matter what. Like I said many, many months ago; you find out who your friends are. And, believe me, we have found out!!! I know I am not perfect, and I have let others down. But I know I will try to never let anyone down again. I know how it feels to never hear from people who say (or said) that they care; no card, note, or phone call. Some of them say they are 'too busy' but they find time for other things. *sigh* I read enough Caring Bridge sites to know I am not alone in my experiences. Others write the same things that I feel and experience. Interesting, isn't it? I know that it just gets too hard for some people to know that this is a battle we will be fighting all of David's life. All I can say is, it must be nice to just pull away and not be there anymore. Sometimes I wish I could have that luxury. Oh well. I guess they have to live with themselves for abandoning us in our greatest time of need. The time we need specific people in our lives they just can't be bothered. I am thankful for the new friends that God has brought into our lives to replace the ones that have left us. And in the end, if Bryon and I and our children are all we have, that will be ok. I am thankful for our online friends~~~yes, that is you who read this! Even though I haven't even met a lot of you, I know that you are there for us. Thank you!!! And I know that you know that I am there for you, too.

Please continue to pray for the specific prayer request that God knows about. Thank you for visiting and checking in on David and the Koury Klan. Have a good night. God bless you. We love you.

Kristi and the Koury Klan

For the first time since its founding, the decrease in funding to the Children’s Oncology Group moves research to a dangerous level where studies and accompanying laboratory research that hold promise will not take place.

Wednesday, August 12, 2009

Good morning. It is a beautiful, chilly morning. It is still summer, but here the mornings can still be quite cool. The skies are rather smokey, thanks to the fires in California. We here in Nevada seem to always get the smoke from the fires in California. *sigh*

David had PT yesterday. He got quite nauseous and had a stomach ache. Not a good day in PT. He still did his exercises, of course. He remains that fantastic trooper. It just was a little difficult for him because he wasn't feeling well. But he got through it. He has PT tomorrow in the pool. Hopefully, that session will be better. He is just funny, he won't take the Zofran, even though it helps. He just hates taking medicine; not that I blame him. So he will just continue to be the trooper and hard worker that he is.

Tonight is our support group meeting. I am looking forward to it, it is good to meet with other parents who are going through a similar situation. We all have a child with cancer, so we understand each others' struggles; and fears! I even think David enjoys it more than he lets on. It is hard for him; he has become very withdrawn; but he has a good time when he is there. The kids are great! So that is what we are doing tonight.

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

Kristi and the Koury Klan

At a time when breakthroughs can be made in treating all childhood cancer and the quality of life for children with cancer improved, the continued decline in government funding will endanger the development of new clinical trials and threaten progress in curing childhood cancer.

Monday, August 10, 2009

Good evening. I hope this finds you all doing well.

Today was a busy day. We left the house at 9:30 to go to David's oncology appointment. Connie is back, YAY!! We were sooooo happy to see her. The appointment went very well. The only 'bad' part is that David is losing weight, again. He is down to 122 pounds. He has grown 1/4", and that is good. But we aren't pleased with the weight loss. So Connie said he has to go on 2% milk (he only likes nonfat), and I have to go back to making milkshakes with protein powder for him at night. We do NOT want to have to go back to the feeding tube.......He just has no appetite; and we aren't really sure why. Please pray that we are able to get some weight back on him. He has lost 3 pounds over the last 2 months. I know that doesn't sound like a big deal, but for him it is. And with him getting taller; he should have gained weight. *sigh* So Connie also recommended David eat guacamole~~~David loves Bryon's guacamole!!! So that will be easier for him to do. Otherwise, Connie is really happy with the way David looks. Overall, it was a really good appointment. By the time we got out of Renown it was lunch time, so we went to Fuddruckers. David ate his burger, but not all of his fries. Then we had to run to Scheels. By the time we got home it was 3:00. Then we had to leave at 3:30 to take the dog to the vet. We finally got home around 5:00. We were gone almost all day!!! It was a very long day.

David has PT tomorrow; didn't have time to have it today. So he will have PT Tues., Thurs., and Fri. this week. Please pray he does well without too much pain. Thanks.

If you haven't already, please sign David's dedication page:
http://www.livestrongaction.org/node/51301
Thank you.

That is about all that is happening around here. Thank you for checking in on David and the Koury Klan. Thank you for your love, prayers, and support. God bless you all. We love you.

Kristi and the Koury Klan

For the patients' parents, a cancer diagnosis can launch a balancing act between the toughness needed to hold together the family and demand the best medical care, and the gentleness needed to stay collected and positive with the child. The ordeal of treatments creates a bond among families who go through the experience.

Friday, August 7, 2009

I mentioned several months back about an adorable little boy named Mattie. Please pray for his family~~~they are out of options for him. The cancer has returned and spread with a vengeance in his small body. Please remember him in your prayers. Thank you.

Friday, August 7, 2009

Good evening. Today was an absolutely gorgeous day. It has been fall the past two days. Yesterday it rained and never got above 63*!! And today I don't think it even reached 70*! It has been beautiful. I almost lit a fire in the wood burning stove; but we don't have enough wood. But that is how cold it is. And, of course, it has been windy.

David did well in the pool on Tuesday. He was quite sore, but he did pretty good. Then he had PT again today, and he is still sore. There is also a 'clicking' at the top of his prosthesis; we aren't sure what that is. Linda said to keep a eye on it. But David's quad is really sore. Please pray that there is nothing wrong with his prosthesis, and that his soreness goes away soon. Thanks.

Otherwise, not much has been happening. We are just kept busy with life. David has an oncology appointment in Reno on Monday, and that is Bryon's furlough day. Then we have to take Berlynn (our German Shepard) to the vet. It will be a busy day on Monday. *Sigh*

Thank you for visiting. Thank you for your love, prayers, and support. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.

Monday, August 3, 2009

Good evening. It is a beautiful evening here. Windy, just the way we (David and I) like it!!

He did ok in PT today. His knee was pretty sore. I forgot to tell you that when we were camping he stumbled on a rock and landed a little harder on his right leg than he should have. Linda said his knee felt 'squishy' today, and seemed swollen. So it is possible he injured it a bit when he stumbled. I am not worried about the prosthesis, he isn't in that much pain. Just the bending of the knee causes him pain. But he still did what Linda asked of him in PT today. He has PT in the pool tomorrow because Lu Ann won't be there on Thursday. So he will get the pool therapy done with early this week. That is good, because I have to get my teeth cleaned on Thursday, so now it won't be such a rush morning. Please pray that his knee feels better and that the swelling goes down. Thank you.

I am trying to get all the laundry done from the camping trip. I am also trying to deep clean the trailer. We have never had it out for that long before, and did it ever get dirty!! But it was worth it! So I am just trying to do it as I can.

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

Kristi and the Koury Klan

He who fears something gives it power over him. ~Moorish Proverb

Sunday, August 2, 2009

Good evening. We are back from our camping trip. We had such a blast!

We left July 24th and went to Lake Davis. It was beautiful there. Then Bryon, Jennifer and Rachel left on Sunday, July 26th, to go home. David and I stayed there. It was wonderful to be just David and me. The weather was a little bit too hot, but it didn't last long. There was only a few hours every day that were just a bit too hot, then it cooled off nicely. So Monday and Tuesday were were basically uneventful, but fun. We played games such as Boggle, Scrabble, Yahtzee, etc. And we just sat outside in the breeze and chatted. Then on Wednesday we had a little thunderstorm. It was wonderful. It cooled down to around 65* and stayed cool the whole day. There were only about 5 campsites (out of 33) in our loop occupied. Around 8:00pm the camp host came around to tell everyone that there was a bear visiting the dumpster that was about 100 yards away from our campsite. So she told us to just stay away from the dumpster and we would be okay. I took the dogs potty early; I didn't want to be outside in the dark knowing there was a bear in the area. They said they shooed him off......but still. David and I just stayed in the trailer and listened to my ipod and played games; and tried not to panic. Bryon told me to put all the bins and ice chests in the car. Well, I could NOT lift one of the ice chests; and I was NOT going to go outside, anyway. Well, around 10:00 I heard our small Styrofoam ice chest move and open; and I knew that the bear was in my camp. I didn't let David know what I heard. I forgot to tell you that we were the only occupied campsite on the side of the campground by the dumpster. Well, I tried to just not think about the fact that the bear was there, so close. I put David to bed and I didn't sleep much that night. Well, the next morning I told him what happened. The bear only got into the one ice chest, and all that was in there was a loaf of bread. Whew! He didn't open the main ice chest or either of the big plastic bins. So all I 'lost' was a measly loaf of bread. Bryon asked if I looked out of the windows to see the bear, and I said no, I didn't want it to see me!!!! So that was our excitement for the week! Then Bryon came on Thursday night to join us for the rest of the weekend. Then Jennifer and Rachel came on Friday after work to join us. Last night (Saturday) we had a fantastic thunderstorm!! Lots of beautiful lightning and thunder. And it rained and rained. It was so beautiful. Then we came home today. David and I were not really ready to come home; we had such a great time! We are going to do that again, soon. We will do it as often as we can, we had that much fun. Our friends came up on Friday morning to camp, too, and it was great to see David walking off and being a 'normal' kid with his friends.

The funniest thing was our dogs. The chihuahuas are so stupid. If you are a chihuahua lover; I am very sorry. But ours are very stupid!! But our other dog is fantastic. I was nervous being me alone with David and 3 dogs, but we had some funny times. Our little 3 pound chihuahua 'taunts' our German Shephard by just standing out of her reach from her cable tie-out thing. Well, our German Shephard figured out to grab Hercules' cable close to his collar and literally yank his chain! She would pull him all around; it was so funny! I wish Caring Bridge allowed video; I have some great videos of her doing that to him. We would laugh so hard at her. So David and I had such a fantastic time. Thank you for your prayers. We had fun.

Well, it is back to life tomorrow. David goes back to PT tomorrow. He had a week off, I hope he does ok tomorrow. He did quite a bit of walking with his friends, but it isn't the same as the exercises he should have been doing! But I wasn't in the mood to force him to do the exercises. It is good to be home, and I hope Linda isn't upset with him tomorrow. We will see.

Thank you for reading this long post. Thank you for checking in on David. Thank you for your prayers. God bless you all. We love you.

Kristi and the Koury Klan

You never know how strong you are until being strong is the only choice you have.