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