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DeeEast
11-03-2009, 11:11 PM
for the support. I haven't been back for a while because frankly, I am trying to just not think about DS's health situation. The latest is that his last blood results were not good (again). I talked to the doctor tonight and he at least answered one of my questions, which was how long do we have to just keep testing and waiting for DS to get better (if its TEC)? He said until our next appointment, the 18th of this month.

Again he mentioned myelodysplastic syndrome and DS's abnormal blood cells. He said that the biopsy results did not show the chromosomal markers that would definitely indicate it but then he said "But can you have myelodysplastic syndrome without the chromosomal markers? Yes." So the bottom line is that we have two more weeks (we are testing DS's blood weekly) for him to get better and have his levels go up to normal.

If not, the doctor was rather vague and said that yes, there would be more "tests". Now my question was, and is, what tests are left? They already did a bone marrow biopsy and tooks vials of blood tests. For the life of me I can't find anything on the internet to tell me what other tests they could do at that point. Does anyone have any idea?

And whatever you do, don't look up myelodysplastic syndrome. I have sufficiently scared myself (hopefully unnecessarily) into old age.
WatchingThemGrow
11-03-2009, 11:33 PM
I have no info to give you, just :grouphug:
SnuggleBuggles
11-03-2009, 11:35 PM
I am so sorry. I hope that the next 2 weeks fly by and you get some good answers!!!

Beth
Globetrotter
11-03-2009, 11:35 PM
He is vague because he doesn't know and can't commit to an answer. Try not to read too much into it (though I would be doing the same thing). I really truly feel for you - it must be excruciating! Try to keep yourself VERY busy over the next few weeks, until you get a definite answer.

:grouphug:
jenfromnj
11-03-2009, 11:35 PM
Continued P&PT to you! Being in limbo for these things is absolute torture, I hope they are able to get to the bottom of things soon.
happymom
11-03-2009, 11:36 PM
Oh, I was hoping that no news was good news! I'm sorry that I have no info either. Just :hug: and lots of P&PT.
billysmommy
11-03-2009, 11:41 PM
You all are in my thoughts
Snow mom
11-03-2009, 11:44 PM
Sending more PT for the levels to go up on their own and of course lots of :hug:.
urquie
11-03-2009, 11:49 PM
:hug: :hug: :hug:
MamaKath
11-03-2009, 11:53 PM
Continued prayers!!! Hang in there mama and know that we are here for you.
MontrealMum
11-03-2009, 11:55 PM
:grouphug: Sending you more P&PT!
Kitten007
11-03-2009, 11:58 PM
Still sending lots of hope for good news and prayers!
KpbS
11-04-2009, 12:27 AM
Hang in there and no more googling. More prayers headed your way. So sorry you are going through this difficult time. :hug: :hug: :hug:
crl
11-04-2009, 01:37 AM
Sending prayers.

Catherine
Fairy
11-04-2009, 01:56 AM
I am just so sorry. Reading your posts with interest and concern and support.

:grouphug:
BelleoftheBallFlagstaff
11-04-2009, 02:05 AM
More PT...:hug5:
DeeEast
11-04-2009, 03:32 AM
The weirdest thing is that the closer we become to a "bad" diagnosis is the less tearful I am. I have a friend who lost her 5 year old son to a very rare cancer diagnosis.

But when it comes to coping. I am lost between thinking, that if it turns out to be TEC, I am putting a lot of peope out. My friend told me that when that happened to her she went into "Mommy Mode" .

I am afraid her Mommy Mode is not the same as mine. I am an attorney by trade. DH teases me all of the time that I go into Prosecutor Mode. Pray that I do not have to go into prosecutor mode. If there is something really wrong with DS, I WILL get the information we need. As I tell the kids, EASY WAY OR THE HARD WAY.

I had a bad thought about today if its TEC then I am making all of these people pray and worry for nothing.
Kitten007
11-04-2009, 04:21 AM
I had a bad thought about today if its TEC then I am making all of these people pray and worry for nothing.

No way mama!! Your son is IMPORTANT too! Your family deserves all the prayers! I tell my DH about your son and the updates and he is cheering for good news too! If it was something easy it would be more of a relief to know that one more awesome kid is okay!

The power of P&PT is something we all as humans should do more of! I read all about others trials and it makes me humble and thank god for every bad and good day we have! Thank you for keeping me from complaining about the stupid small stuff! You in a weird, worried, funny way remind me to stop being petty! (If that makes sense.)

Please keep us posted! Hug your baby for me!
Globetrotter
11-04-2009, 04:24 AM
I had a bad thought about today if its TEC then I am making all of these people pray and worry for nothing.

I, for one, HOPE I am doing this for nothing!! You won't find a single person who would hold that against you.
DeeEast
11-04-2009, 04:27 AM
No way mama!! Your son is IMPORTANT too! Your family deserves all the prayers! I tell my DH about your son and the updates and he is cheering for good news too! If it was something easy it would be more of a relief to know that one more awesome kid is okay!

The power of P&PT is something we all as humans should do more of! I read all about others trials and it makes me humble and thank god for every bad and good day we have! Thank you for keeping me from complaining about the stupid small stuff! You in a weird, worried, funny way remind me to stop being petty! (If that makes sense.)

Please keep us posted! Hug your baby for me!
Yes that does make sense. And thank you.
DeeEast
11-04-2009, 04:28 AM
I, for one, HOPE I am doing this for nothing!! You won't find a single person who would hold that against you.


Ok, you can quote me on that in two weeks when its all nothing, ok? : )
Melarina
11-04-2009, 05:12 AM
Sending prayers, hugs, positive thoughts to you and your family!
DeeEast
11-04-2009, 05:31 AM
Why am I staying up until 4:30 am listening to Sarah McLachlan? The answer is because I cannot sleep. How does anyone sleep when faced with this kind of worry? But you guys do make me feel better.

PS: Sarah McLachlan will make you sad even if you are happy. : )
JTsMom
11-04-2009, 07:28 AM
:grouphug: Thinking of you and your family. Add me to the list of people who would be thrilled if it was all for nothing! I'm so sorry this limbo period just keeps dragging on for you guys.
klwa
11-04-2009, 07:37 AM
:hug: P & PT's
MoJo
11-04-2009, 08:39 AM
Still praying here too, and would be SO happy to praise God with you if it's only TEC!
Melaine
11-04-2009, 08:45 AM
Prayers from me too. And it's never a waste to ask for them! Plenty to go around.
Ceepa
11-04-2009, 09:04 AM
Hang in there. :grouphug:
jse107
11-04-2009, 10:12 AM
Thinking of you. Hang in there mama--you've got lots of support.
ThreeofUs
11-04-2009, 01:21 PM
I had a bad thought about today if its TEC then I am making all of these people pray and worry for nothing.


Not a chance. We're thinking about you and your DS and hoping it's "only" TEC. We'll all be breathing a big sigh of relief with you, if that's what you are lucky enough to come back and tell us.

Here's hoping your DS's counts come up soon.

P&PT to your DS, you, and your family. Limbo is an awful place to be.

:grouphug:
arivecchi
11-04-2009, 01:28 PM
We are all praying that it IS the best possible scenario. That would be the best news! I wish I could do more. I cannot even imagine wat you are going through. I would imagine I would not be able to sleep much either. My whole family is thinking of you and rooting for your son. Hugs mama. :hug::hug::hug: