Friday, May 29, 2009

Good evening. Sorry I haven't updated, been very busy. Can't say why, just suffice it to say we have been extremely busy.

David did pool therapy yesterday and did great! He is a trooper. He did therapy today, too. He tries so hard, poor child. We hope to get him good and strong before his next surgery. He is working hard at it!

Another osteo child died Saturday. Please remember her family in your prayers. God knows who she is. Her family wants their privacy, so I will not mention her name. But please pray for her family. Thanks.

Thank you for checking in on David. Please keep him in your prayers. I will try to be better at updating, when I can. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.

Monday, May 25, 2009

Good evening. Sorry I haven't updated for a few days, just been very busy.

David did great in PT on Friday. He didn't get too hot, it was nicer weather. He and Rachel went swimming on Saturday, and he did some of his pool exercises then. He did great. He did some good PT today, too. He is trying so hard. I am so proud of him. He is doing great.

Please continue to pray for him. He has surgery in four weeks from today. I can't tell you how tired we are of sending him off to surgery!! Pray for peace for him. Thanks.

Please pray for Sammie and her family. Things are very dire for them now. She has a very short time left on this earth before she joins Jesus in heaven. Please pray for peace and comfort for her and for her family. Thank you so much.

Well, gotta run. Thank you for checking in. Have a good night. God bless you all. We love you. {{HUGS}}

Kristi and the Koury Klan

Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

Thursday, May 21, 2009

Good evening. Today was a beautiful day. I am so glad Summer decided to stay away for awhile longer. Spring is just so beautiful here. The green trees, the flowering trees (like the one in our front yard), and all the flowers in the yards. The blue skies, the white fluffy clouds, you get the picture.

David did great in the pool today. He worked hard, as usual. For awhile it was just him and Lu Ann, then another woman showed up. So Lu Ann just had the two patients today. Like I said, David did great. He does like being in the pool. I am so proud of him. I know I say that all the time, if you were blessed to be his parent you would understand why I say it!!! I am very blessed!! I am so glad he is my son.

Tomorrow is another day of PT in the office. One month from tomorrow is his next surgery. Let's see, it will make surgery number......9. Wow! In less than 2 years. He is a trooper. He will do whatever he has to do. I know the next month is going to fly by. We have to go to San Francisco on Father's Day. So poor Bryon won't get to spend the day with all of his children. But what can we do. This cancer has taken a lot from our family. *sigh* But we will prevail.

I will post tomorrow and let you know how David did in PT. Please pray for hin tomorrow. Thanks.

Thank you for checking in on us. Have a good night. God bless you all. We love you.

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. (Which is why I have asked you to please pray for our finances~~~remember, I lost my income)

Wednesday, May 20, 2009

Good evening. It was Spring again! Yay! Hopefully tomorrow will be just as great as today. David has PT tomorrow, but it is in the pool, so it will be good. Then I have to go to the doctor, for me. So it will be a busy morning.

I am posting a poem I read somewhere; I am not sure where. But I thought it was pretty fitting to us. I hope you enjoy it.

When I Became a Heart Mother

One day my world came crashing down, I'll never be the same...
They told me that my child was sick...
I thought, am I to blame? I don't think I can handle this...
I'm really not that strong...
It seemed my heart was breaking..
As I'd loved him for so long. I will not give up on this child..
despite your best "advice"...
I will give my child a chance...
No matter what the price...
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive! Will he require therapy?
What if he can't gain weight? Alright God I can do this...
I will not curse our fate. The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed...
I watch him then, for quite awhile...
(Bend down and kiss his head) Then I cry for the parents whose lives have been broken, and I look to God wondering why?
Oh Lord, I just can't know your ways..
No matter how I try, and yet, I trust You hold his life,
(and guide us through each day) My mind says savor each moment he's here...
But my heart whispers,
"Please let him stay".
From pacing the surgical waiting room...
to sitting by his hospital bed...
From wishing for a good nights sleep...
to learning every med...
From wondering will he be alright? To watching him reach out his hands..
with every smile, my heart just melts..(despite life's harsh demands)
For all who see that faded line...
I look to them and smile...
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..(It's the door to his beautiful heart)
I never guessed how much I'd love him..
(Just as YOU loved him right from the start)
A heart mom is always a heart mom..(Now wise beyond her years)And for those who have angels in heaven..
Our hearts share in all of your tears..
Everyday I will strive to remember..
You chose me for him(and no other)And I will embrace that beautiful day..
When I became a "heart mother".

~Stephanie Husted

Thank you for checking in on David and us. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Tuesday, May 19, 2009

Good evening, everyone. Thank you for stopping by, and for your encouraging entries in the Guestbook.

David had a pretty good day today. The weather changed back to Spring, so it isn't too bad. It didn't even get up to 80 degrees today!! He felt much better today. He is a little upset, though. He can't find his nintendo DS. We have looked everywhere (except where it is, ha-ha) and he really wants to find it. Could you please pray that he finds it? Thanks.

Please continue to pray for our osteo family members. There are some children having scans this week. I know you don't know who they are, but that doesn't matter; God does. Please pray for clear scans for them, and peace for their parents. We will be there first of July, more scans. Please especially pray for Shane. His tumor in his lung is possibly growing and displacing his other organs. This cancer shows NO mercy!! Thank you so much for your prayers.

Well, rather slow day today. Thank you for checking in. Have a good night. God bless you. We love you all.

Kristi and the Koury Klan

While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

Monday, May 18, 2009

Good evening.

Today was a trying day for David. The weather has changed to summer for a couple of days, (highs in the high 80's) and he was too hot today. They had all the lights off in PT today to make it cooler, but they hadn't yet turned on the cooler (David had PT in the morning). It was warm in there, not too hot, but David was working hard so he got pretty hot. He did pretty good, it just was difficult for him. I am NOT looking forward to summer with him. He just can no longer handle the heat. Fortunately, Bryon got our swamp cooler working, so our house is nice and cool. We only have about 10% humidity, so the swamp cooler works great!! We totally close up downstairs, and open the upstairs windows about 1/2" so all the cold air is drawn upstairs. It is cold downstairs, and comfortable upstairs. So David will be 'housebound' this summer. Except when we go to the lake (Lake Tahoe, for those of you who don't know what lake I am talking about) for the day. And PT, of course. I guess I will just have to give him Zofran on PT days this summer. *sigh*

Otherwise David had an ok day. I had errands to run; like pick up his medicine from Costco, and get a few things at Walmart; but he stayed home in the nice cool house.

Well, that is about it. Please pray for our osteo family members fighting this disease; Sammie, Ty, Kenny, Sonya, Ben, Muriel, Amanda, Madison, Danielle, Rachel, Teagan, Chris, Shane, and others that I can't think of right now, sorry. Some are doing better than others. God knows what they need. Thank you for your prayers. I know those families appreciate them as much as I do. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined.

Friday, May 15, 2009

Good evening. Today was another absolutely gorgeous day.

David had PT today. He did ok, just got quite nauseous and said his stomach hurt. He even had to sit and rest a couple of times. And his knee buckled 3 times on the elliptical. So I guess today was a 'not so good' day as far as PT goes. Yesterday in the pool was great! He did very well. Then today was a different story. But he did it, and he got through. He is such a tough kid! We are so very proud of him. He tries so hard. Please continue to pray for him. Pray that he gets his stamina back. I know it could take awhile, but we would like it to be sooner rather than later!! But we just need the patience; and that is HARD!

Please continue to pray for all our children fighting this disease, and other childhood cancers. Thank you.

Thank you for visiting and checking in on David. We appreciate all the support and postings to us. God bless you all. We love you.

Kristi and the Koury Klan

Cancer treatment can cause serious side effects that may last a lifetime.

Wednesday, May 13, 2009

Good evening. It was another beautiful spring day here today. The high was 69* and, you guessed it, it was windy!! Another beautiful day.

David is doing well. Tonight we went to a support group meeting in Reno with other parents of children with cancer (nice seeing you, Rosanne). David didn't really want to go, but he said he had a good time. It is put on by Angel Kiss and Keaton Raphael Memorial; and it is a good time for parents to get together and talk. Our children don't all have the same cancer, but that doesn't matter. We are still in the same place with having children with cancer. So it was good.

David has PT in the pool tomorrow. Lu Ann works him pretty hard. The biggest problem he has is Lu Ann said he has no fat on his body, so he is not buoyant. She has to put noodles under his pelvis so he can kick with the kick boards. Without the noodles he just sinks!! I keep telling him that I will gladly give him some of my 'buoyancy!!' So he will be working out in the warm pool tomorrow.

Well, that is about all for today. Thank you for checking in. Have a good evening. Sleep tight. God bless you all. We love you.

Kristi and the Koury Klan

Research on the emotional impact of childhood cancer finds that parents and siblings report even greater longterm emotional impacts than the diagnosed child.

Monday, May 11, 2009

Good evening. Wow, is it beautiful here!!! Cool breezes, warm sun, and windy (I am sure you already knew that, huh?).

Our camping trip was very nice. It was windy, cool, and relaxing. Bryon, David and I went out after PT; and then Jennifer and Rachel came out after work. Jeremy and Lucy came out Saturday afternoon. We did have our glitches; seems something always happens. Around 11pm Friday, as we are getting ready for bed, the carbon monoxide sensor started chirping. We figured the battery to the trailer was low, but we didn't see how that could be. Well, Bryon ran to Walmart to get another Marine battery when Rachel read that maybe it is the 9-volt battery in the sensor itself. So, I had Bryon also pick up a 9-volt battery. Well, to make a long story short, it was the 9-volt. So once we got all the batteries replaced we had no more problems. It was great! I had hot running water, we had electricity, we had warm sleeping bags, and we were all together. It was great. Saturday the coyotes were pretty loud, but we were nice and safe in the trailer. Everyone spent a lot of time playing Boggle. It is a great game for David to play, and he loves it! David had such a great time, and he said that he wants to go camping for more than just a weekend. So sometime this summer he and I are going to go camping for a week. Bryon and the girls can come on the weekends, but it will be just me and David from Sunday-Friday night. I am looking forward to that. Bryon taught me how to use the water heater, fill the trailer with water, start (and use) the generator, and empty the potty. So I think David are I are set. We just don't know when we are going to do it. It will be fun.

PT on Friday went well. He worked SUPER hard. And he worked really hard again today. He got a bit nauseous again today, so he popped the peppermints. His knee only buckled 2 times on the elliptical today. Overall, he did great.

I hope all you mothers out there had a great mother's day. Mine was fun; and I had all my kiddos with me, so it couldn't have been better. We had a great time.

Well, that is about all for now. Please continue to pray for David, and all of us. Thank you. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Childhood cancer is devastating and creates unique pressures on the whole family.

Thursday, May 7, 2009

Good evening. Spring has definitely sprung here! It has been warm and windy. Warm as in high 60's to low 70's. And beautiful. We are enjoying it.

David had PT in the pool today. He did good, as usual. The therapy pool room was very warm~~~felt kinda good. It is still cold here in the mornings (like mid 30's) so the room felt good this morning. He has PT in the office tomorrow. Linda has the day off, so Lu Ann is going to work David. Tomorrow will be a busy day. After PT we have to do a little bit of grocery shopping. Then we are going camping!!! That has become our Mother's Day tradition; go camping for Mother's Day weekend. We are all pretty excited. Bryon put the trailer on the lawn and flushed all the anti-freeze out of the water lines and filled the tanks. And we got the hot water heater working!! YAY! So I just need to get a few groceries, and we are off to the campground. So I won't be updating this weekend; not bringing the computers. Hopefully it will be a nice relaxing weekend. I want to take this time to wish all the mothers out there a Happy Mother's Day! I will post on Monday how the camping trip went. Thank you for all your prayers. Please pray that David does well in PT tomorrow. I will make sure we have the peppermint candies for him to suck on. He doesn't want me to give him Zofran~~he hates taking medicine. He says he already takes enough and he doesn't want to take more than he has to! So please pray that he doesn't get sick tomorrow. It is supposed to be mid 70's tomorrow, and he gets hot doing PT. Thank you for your prayers. Thank you for checking up on David. Have a good night. God bless you all.
We love you.

Kristi and the Koury Klan

Starting Over When cold reality falls short of dreams
When life does not unfold quite as hoped
When life becomes an unending uphill struggle
And all efforts go unrewarded
When all avenues of compromise and patience have been exhausted
And still dreams remain unfulfilled
Then take heart in Life itself - in being alive!
Trust in your own self-
You are still You - you can be strong
You may need to start afresh
So embrace the new challenge
Look forward to being free from the past
To be able to make new choices
Look forward...to starting over...
Look forward to being free!
by Anna Nielsen

Tuesday, May 5, 2009

Good evening. It is another beautiful day here. It is windy, cool, and absolutely gorgeous. Before I say anything about David, I must ask for prayer for another osteo child. I am going to quote what her mother wrote yesterday.

"IM really at a lost for words.........this horrable disease istaking over her body and theres nothing I can do about it.I dont even know where to start. Its spreading to all of her bones and soft tissue. There are tumors everywhere, her rightleg, pelvis, spine. ribs, skull..etc...etc. We have run out of alot of options because Amandas bone marrow has been hit hard, it doesnt leave many options for trials and even by the time we let her recuperate, the cancer will continue to spread."

Please pray for this beautiful child. She is just 14 years old. Thank you.

David did pretty good in PT yesterday. He got pretty hot, and a little nauseous, but otherwise he did good. His knee buckled quite a few times, but not as much as other days. He tries so hard. Such a great kid!!David had a pretty good day today. He is still plugging away with school. He can't wait for this school year to be done. He wants a summer vacation~~he didn't really get one last year. He is learning trigonometry at this time. He is doing fairly well with it. Please pray that he is able to understand all his studies and do well.

Thanks.Thank you for visiting. Thank you for all your prayers; for us and Amanda. Keep them coming!! 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.

Sunday, May 3, 2009

The following was copied from another child's site who is going through this cancer journey. It is being posted on many other children's sites that I follow. It so exactly expresses what I felt when I listened to Obama address the nation and talk about how our heart goes out to the people suffering and the child who died from the swine flu and his family.

Well, of course all of our hearts should go out to whomever when a child dies. What I wanted to ask him was 'Where were you this past February when FIVE children died from this osteosarcoma monster disease, and 6 others this year so far? Where are the cries that this disease must be stopped?' The Swine Flu: A Crisis It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly.

Here is what has happened already:

*Over 100 schools have closed.
*President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
*Congress approved $1.5 billion in emergency funds.
*Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
*The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
*WHO Director-General Margaret Chan has raised the alert level to phase 4.
*Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
*Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."
*Congress has asked Homeland Security to consider closing the Mexican border.

Here are the numbers:
There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.
Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response.

Sick children, and the death of even one child, is a great loss. So please understand what I am about to say. I in no way wish to belittle those who have suffered from the swine flu. I would just like to point out some comparisons.
1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently refers to the 40,000 children currently with cancer, and the 2,500 annual deaths, as "very rare".
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. And again and again and again. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.
6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer receives a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.

Sunday, May 3, 2009

Good afternoon. It is windy, rainy, and beautiful here today.

Sorry for the lack of updates this weekend. Busy, as usual.

David had a pretty good day in PT on Friday. He ate some peppermints during his 'workout' so he felt ok. He is trying so hard. He does complain when asked to do something; but who came blame him?!?! It is painful for him. And, I hope I explain this right, but we have figured out part of his 'problem' with PT. Not only is it physically hard for him, but it is emotionally hard, too. He does not like to think about the fact that he has cancer, and PT is another reminder of it. He is dealing with a lot of emotional garbage, ane he doesn't want to talk about it. So, we are so proud of him that he just does what we tell him to do~~what he has to do. What a great kid! And he is mine! I am so glad he is mine!

He has PT again tomorrow. Please continue to pray for him. Thank you.

Oh, Jennifer is feeling better. Thanks for your prayers.

Well, that is about it. Thank you for checking in. Have a good night. God bless you all. We love you.

Kristi and the Koury Klan

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas (that is what David has), relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.