Re: update................

[Guest guest]

I am sorry that I upset you, that not was what Iwas trying to do. I think the

oncologist was just tryig to say that 's problems are just serious as the

little girl with all. There are no gaurentees inlife for any of us. And yes

the risk of relapse is great and some types of leukemia is not as curable. I

know that. But many do go on with no complication not all of them do. and

Abby have the risk of AML all their life too, just like the chances of the kids

relapsing.

I am sorry again

ALAN J SVEJKOVSKY wrote:

: I am glad that is finally feeling better and that the doctors

have decided that she needs a further course of action. I do need to say

something, however and please do not take this wrong, but I was upset by

your comment about ALL. Yes, that child MAY be completely better in 3 or 4

years, but there is no guarantee of it. Just like there is no guarantee

that any of us will have perfect health then. 's oncologist told us

that he would be perfectly normal after his chemo stopped, but look at his

history. Now there are the concerns of the damage from the chemo we had to

use to save him. I know that dealing with cancer and a PID and even the

Schwachman are all different, so there is no comparison. But please

remember, that having a child with each of these problems are hard enough to

deal with without it being made light of. I guess the reason I'm upset is

that so many of the kids went through chemo with have now relapsed or

died--these are the same kids who " will be fine in 3 or 4 years " and

apparently they weren't. Some leukemia's are not classified as curable, but

long-term remission. 's can return any time--whether today or in 20

years, but his doctors will not classify him as ever being cured. Please

try to remember that this is not a contest on who is sicker or will be

sicker in the long run, but it is real life and death--and I have seen too

much death of innocent babies and children from cancer to let this pass.

update................

>

> Well we are home from the hospital. It was a very stressful couple of

days. And a stressful ride down. I never got to scheck my messages I kinda

left in a hurry.

>

> Thankfully, the drs ruled out a bone infection. She has a deep tissue

infection (cellulitis), a blood infection and the same sinus infection she

has had since the beginning of Oct. The hem thinks this is all connected.

They put her on 2000 mg of unsyn every 6 hours and I think it did wonders.

Sinus' are cleared but the skin infection is better. Her WBC was 38,000

when we went in on Monday and this am it was down to 17,000. Not sure of

her ANC but I think it was good. Platelets were at 91,000 Monday and 93,000

today.

>

> She is now hobling around. She is going to need sinus surgery to clean

out her sinus. We also meet with the surgeon on Monday and they are going

to schedule her to put a port in. Then start IVIG. I am glad about the

port. They had to stick her 6 times to get the IV in. I felt sooo bad for

her. She screamed but kept her arms totally still.

>

> I am just thankful it wasn't a bone infection like they had thought at

first. They think theinfection would have settled in the bone, but since I

paniced (thankfully I did) we got it fast enough.

>

> She is glad to be home although she is still just lieing around. We go

for counts again Monday.

>

> shared her room with a little girl her age who has ALL. She was sooo

upset that she wasn't feeling better like she was. Our hem is terrific.

She and I were talking and she said that the little girl will have a tough

year or so, and after 3-4 years she will be fine. Where as my girls will be

struggling on and off for the rest of their lives. So just because she is

sicker right now it doesn't mean that my girls are any less sick.

>

> Well I now have to get my house in order. It is a disaster. Men can't

work take care of kids and a house. But hey mine did try.

>

> God Bless

>

>

>

> Thanks for all the prayer they are helping.

>

>

>

> , Mom to:

>

> Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe

neutropenia, leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman

Syndrome)

>

>

>

> ---------------------------------

>