Monday, November 16, 2009

Good evening.

Ok, here is the news about David's oncology appointment. First, he has
lost a significant amount of weight. He now only weighs 119 pounds. Connie
looked at his chart and said that is a 13-14 pound loss. That is HUGE for
him. So, we are to just let him eat what he feels like eating; not overly
encourage him to eat anything else. She said that basically what we are
doing when we try to encourage him to eat is we are overwhelming him. Then
when all this food is verbally thrown at him, the thought of eating makes
him sick. So we are to take our cues from him and suggest things, but let
him take the 'lead' in his eating. She wants to see him in two weeks for a
weigh-in. She said she won't be upset if he doesn't gain, just as long as
he doesn't lose. He is back in the 'failure to thrive' category he was in
1 1/2 years ago. That is NOT good. We knew he was losing weight, we just
didn't know it was that bad. Please pray that he can stop losing the
weight, and that I can back-off. As his mom, I want to see him eat; and it
is hard for me to see him like this. She asked if he was like this before
he was diagnosed with cancer, and he said no. He knows he had a normal
appetite 'bc' (before cancer), and he was a lot more active; that is why
he was skinny then. But being skinny just because he won't eat is a whole
different situation from being skinny because you are eating and active.
Let me tell you~~~cancer sucks!!! It has 'damaged' my son in sooooo many
ways! I would really covet your prayers for all of us. Thank you.

Otherwise his appointment went well. Connie is going to get the info on
the phosphorous levels; so we are still in limbo about that. The other bad
part about the appointment is we were told NOT to take David anywhere for
Thanksgiving. We were invited to go to my brother's house (and we REALLY
want to go), but we were told not to. Connie said that 10 hours in the car
is too much for David this soon after surgery. If surgery had been a
couple months ago, that would have been different. We were told the 4
hours from S.F. was too much; but we had no choice about that one!! We
live 4 hours away, and we had to get home! Also, she said that there are
tons of germs out there that his body just can't fight. As evidenced by
his recent illness. She said those germs are nothing to you and me, but
could be deadly to David. I don't really understand that. He isn't having
chemo anymore, so I would think he would be ok. But apparently not. So we
are quite bummed about not being able to go to my brother's house. We have
been trying to get there for 2 years~~~yep, right when David was diagnosed
was when we were going to go. Ever since then we have been trying, but it
seems like there is one thing after another that keeps getting in the way!
*sigh* So sorry, Mike. It will happen, eventually. Please don't give up on
us! These things are just out of our hands. David's health is our #1
priority. I know my brother understands, it is just frustrating.

When David was laying on the table, Connie was very surprised to see that
David can almost get his leg straight! He is such a trooper. She said
after his appointment in 2 weeks we will start PT again. David is sooo
excited about that, NOT! He has enjoyed the break from PT. But his muscles
have atrophied sooo badly that he needs PT. But again, his appointment
went well, overall. He is still being the fantastic child that he is, and
still being the trooper that he always has been. We are so proud of him. I
am so glad he is my son.

Please continue to pray for his school situation. He is trying so hard.
Please pray that he is able to get the work done. Thank you for your
prayers.

Thank you for visiting and checking in on David and the Koury Klan. Thank
you for the prayers; boy do we need them! Have a good evening. God bless
you all. We love you.

Kristi and the Koury Klan

Detecting childhood cancers at an early stage, when the disease would
react more favorably to treatment, is extremely difficult.