Re: Bone Marrow Test Tomorrow

December 23, 2003

Patty, They thought n might have leukemia when she first presented. I think a number of people here had that happen, and I think a number went thru bone biopsies. n didn't have the hemoglobin problem, but again a number of kids here did. They just have to rule everything else out. It is a shame that they have to put her thru the pain of the biopsy. In these days of malpractice suits I think they tend to be over cautious. We will keep her in our prayers. (n, 14, systemic)

Bone Marrow Test Tomorrow

Hello Group:We had Caitlin's two week follow-up appointment today and got quite a shock. While I was thinking she was actually getting a bit better, her labs don't reflect that. The rheumy is not sure what we are dealing with and her hemoglobin level has dropped since last blood draw. He wants to explore every avenue, thus we have a 8:30 bone marrow biopsy tomorrow. Caitlin is terrified of needles. Spiked her temp in the doctor's office today by getting so upset thinking that she was going to get a shot. I don't want to tell her until tomorrow, I don't want to tell her at all, but I know I have to give her some fair warning. I know this is a very painful procedure even with the meds they give people. I am beyond worried sick. I don't know what to do. Of course, with this test she will be in pain after and may have to be on bed rest for Christmas. She has been looking forward to this since she got sick. The doctor also stated she could just be presenting with JRA unusually or we could be looking at Still's Disease. I hate keeping this from her, but I want her to get some rest tonight (she doesn't sleep well lately as it is, with the fevers and pain, etc.). I thought strep-induced arthritis and/or Rheumatic Fever were bad, but now he is looking into Leukemia Lymphoma!!!!!!!!! Has anyone here had this experience/test during their diagnosis? Can your hemoglobin drop (from 11.something to 9) with JRA and the JRA family?Thank you all.Patty

December 23, 2003

In a message dated 12/23/03 8:03:26 PM Eastern Standard Time,

bc.price@... writes:

<< We will keep her in our prayers. (n, 14, systemic) >>

Thank you . We need prayers right now.

Take care.

Patty

December 23, 2003

In a message dated 12/23/03 8:36:32 PM Eastern Standard Time,

sonia1md@... writes:

<<

I am so sorry to hear about Caitlyns problems and I know how worried you

must be about the bone marrow test. I think your right to let her rest and

tell her tomorrow. I know my daughter would only be distressed about it all

night..>>

I feel really guilty about not telling her. She even asked a couple of times

last night if I wasn't telling her something about her illness. I know that

Caitlin, like your daughter, would be upset all night after hearing what test

and procedure she'd be going to in the morning.

<< They looked into lymphoma as a possibility for Aundrea because of her

unusual presentation of stills. It was a strange thing to hope for one

disease

over another. Of course we would prefer to just have our kids healthy. All

the tests and the worries about what might be wrong is so very hard to

deal with. >>

Her rheumy said she may be presenting with 'unusual' symptoms of Still's.

Sounds like your daughter did the same. Yes, it is very strange to hope for one

disease over the other. I just don't know what to hope for with any of them,

except, of course, for her to have strep-induced arthritis the lesser of all

of them and to be healthy once again, like all of us parents wish for our

children.

<< I will pray for you and Caitlyn tomorrow morning. I hope that the pain

afterwards wont be so bad that she can't at least enjoy some of Christmas

day. God Bless, (mom to Aundrea age 8 systemic)>>

Thank you . Caitlin needs all the prayers she can get right now.

Take care.

Patty

Emeraldsx3@... wrote:

Hello Group:

We had Caitlin's two week follow-up appointment today and got quite a shock.

While I was thinking she was actually getting a bit better, her labs don't

reflect that. The rhe >>

December 23, 2003

In a message dated 12/24/03 2:46:13 AM Eastern Standard Time,

boundforlondon@... writes:

<< We'll be hoping and praying for a positive outcome. You can have

anemia of chronic disease. My daughter does and I know quite a few

others do too. I wish there was some other way for her to be checked

for this so she doesn't have to go through the test. What an awful

way to spend Christmas. Let us know when you get the results, I hope

it will be soon so you won't be left wondering.>>

Hi e:

The hematologist said the same thing. He stated that one can have a low/drop

in hemoglobin with any rheumatoid condition, as well as others. I wish they

could check another way too:( With the fact that we are going into Children's

of DC, supposedly, their lab never closes so we should hear faster than going

to a doctor's office setting. I hope and pray she is ok and she can enjoy

Christmas. Thank you for your prayers.

Take care.

Patty

December 23, 2003

Patty,

We'll be hoping and praying for a positive outcome. You can have

anemia of chronic disease. My daughter does and I know quite a few

others do too. I wish there was some other way for her to be checked

for this so she doesn't have to go through the test. What an awful

way to spend Christmas. Let us know when you get the results, I hope

it will be soon so you won't be left wondering.

e

> Hello Group:

>

> We had Caitlin's two week follow-up appointment today and got quite

a shock.

> While I was thinking she was actually getting a bit better, her

labs don't

> reflect that. The rheumy is not sure what we are dealing with and

her

> hemoglobin level has dropped since last blood draw. He wants to

explore every avenue,

> thus we have a 8:30 bone marrow biopsy tomorrow. Caitlin is

terrified of

> needles. Spiked her temp in the doctor's office today by getting

so upset

> thinking that she was going to get a shot. I don't want to tell

her until tomorrow,

> I don't want to tell her at all, but I know I have to give her some

fair

> warning. I know this is a very painful procedure even with the

meds they give

> people. I am beyond worried sick. I don't know what to do. Of

course, with this

> test she will be in pain after and may have to be on bed rest for

Christmas.

> She has been looking forward to this since she got sick. The

doctor also

> stated she could just be presenting with JRA unusually or we could

be looking at

> Still's Disease. I hate keeping this from her, but I want her to

get some

> rest tonight (she doesn't sleep well lately as it is, with the

fevers and pain,

> etc.). I thought strep-induced arthritis and/or Rheumatic Fever

were bad, but

> now he is looking into Leukemia Lymphoma!!!!!!!!!

>

> Has anyone here had this experience/test during their diagnosis?

Can your

> hemoglobin drop (from 11.something to 9) with JRA and the JRA

family?

>

> Thank you all.

> Patty

December 24, 2003

Hi Patty,

Our thoughts are with you, as you come to terms with having to deal with

this latest worrisome procedure to try to determine better what's going

on with Caitlin. As Kris and others have said, please keep us updated.

And know that we are all hopeful that the results will be good. My son

has also had problems with very low hemoglobin. It has never

gotten to the point where they have needed to transfuse blood but it has

been monitored those few times when it got worrisomely low. At the very

beginning, prior to diagnosis, his white blood cell count was

skyrocketing, too. Doctors mentioned the possibility of leukemia as one

of their concerns so, afterwards, we were elated to learn that he had

arthritis. Not that arthritis is good, by any means, just that it seemed

so much better than leukemia.

Take Care,

Georgina

Emeraldsx3@... wrote:

> In a message dated 12/24/03 2:46:13 AM Eastern Standard Time,

> boundforlondon@... writes:

>

> << We'll be hoping and praying for a positive outcome. You can have

> anemia of chronic disease. My daughter does and I know quite a few

> others do too. I wish there was some other way for her to be checked

> for this so she doesn't have to go through the test. What an awful

> way to spend Christmas. Let us know when you get the results, I hope

> it will be soon so you won't be left wondering.>>

>

> Hi e:

>

> The hematologist said the same thing. He stated that one can have a low/drop

> in hemoglobin with any rheumatoid condition, as well as others. I wish they

> could check another way too:( With the fact that we are going into Children's

> of DC, supposedly, their lab never closes so we should hear faster than going

> to a doctor's office setting. I hope and pray she is ok and she can enjoy

> Christmas. Thank you for your prayers.

>

> Take care.

> Patty

December 25, 2003

In a message dated 12/24/03 11:07:24 AM Eastern Standard Time,

kju_0601@... writes:

<<

(now 20 months) was Dx'd in Jan 2003 with systemic JRA. While in the

hospital his hemo went from 7.8 to 5.3 in about 24 hours. Yes, hemo levels can

drop, sometimes very quickly.

My wife and I were caught completely unawares when the Hematologist walked

into our room and announced that our then-9-month old son would be getting a

transfusion of a half-unit of blood. From our pediatrician we learned that

anything under 7 is getting towards critical, at least at that age.

>>

Hi Karl:

When received the blood did the hemoglobin level come back up? Did

they stay up without any more blood? How did they keep the level up?

Steroids?

From what I understand Caitlin started out at a hemoglobin level of 11 and a

week later it was at 9. Her labs done yesterday at Children's showed either

an 8.9 or an 8.4 (two doctors said two different numbers). I had asked the

nurse for copies of her labs, but she wanted to wait for all to come in and then

give them to us before we left. Well, being Christmas Eve Day everyone left

early (we were in the back and didn't realize this) except the doctor and us.

I was now concentrating on Caitlin's bone marrow results and nothing else

(also figuring the nurse would carry through). So I will have to call tomorrow

to

get the lab copies, though now it will probably be a big deal of faxing

permission etc. We were told that they transfuse as 6. Hopefully, she doesn't

drop to that.

<We have no other history of autoimmune problems on either side of the

immediate family -- only on my father-in-law's side, about 3-4 generations

back.>

Same here. Now history on either side of autoimmune disorders. Of course,

they aren't even sure what Caitlin has yet:(

Thank you Karl. We are trying to make the best of it with happy faces etc.

It is so very hard though when one of my children is so very sick. I know

everyone here understands that feeling. Her twin sister still believes in Santa

Claus so seeing it through her eyes is bringing joy to our house:) Hoping

2004 is a healthy one. Funny how so many of us want this or that and realize

it's all unimportant when a loved one is sick. Puts it in perspective. All I

want is good health for my children and everyone's.

I hope you and yours have a wonderful Christmas/Holiday too and good, healthy

2004 and on.

Take care.

Patty

December 25, 2003

In a message dated 12/24/03 6:07:24 PM Eastern Standard Time, gmckin@...

writes: