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DeeEast
10-29-2009, 12:24 AM
Myelodysplastic syndrome. I do not understand everything I am reading but it is definitely cancer and from what I can read, there is no cure. I have sufficiently freaked myself out over the fact that tomorrow will be a week since the bone marrow biopsy that now I am telling myself that it is because they think it is cancer and have to run the tests more than once before they call us and tell us.

I am really not doing a good job with the other kids and basically just laid on the couch today with the phone by my hand while they watched TV. My nerves are totally frayed. DS pulled one of DD's toys from her hands while she was sitting in a wooden kitchen chair today and knocked her over. She was ok, but I screamed bloody murder at the loud sound, I was so startled.

On the bright side, as I was sitting on the couch tonight crying and feeling crazy, I was watching "Modern Family" and it was so damn funny that I started laughing out loud while I was crying. Man that is a funny show. But isn't that the definition of insane? Laughing while crying? :o

niccig
10-29-2009, 12:26 AM
You still don't have any news??
Oh, I'm sorry. The waiting must be unbearable.
Lots of :grouphug:.

JustMe
10-29-2009, 12:28 AM
Sorry its tough and you are in limbo. I say reduce your expactations for yourself... plan to let the kids watch tv while you sit on the couch and relax..give them some snacks to keep them happy, while watching tv, etc.

happymom
10-29-2009, 12:29 AM
:hug: and more :hug:. Thats all.

DeeEast
10-29-2009, 12:30 AM
No, no call yet and DH finally emailed the doctor. I will be lecturing tomorrow during the time that the doctor usually calls so wish me luck with that. My worst fear is getting that phone call. My second worst fear is getting that phone call when I am in the middle of a lecture.

DeeEast
10-29-2009, 12:31 AM
Sorry its tough and you are in limbo. I say reduce your expactations for yourself... plan to let the kids watch tv while you sit on the couch and relax..give them some snacks to keep them happy, while watching tv, etc.

That's basically what I did today. I absolutely hate just letting them watch TV all day but I told myself today was an exception. They were very happy.

happymom
10-29-2009, 12:32 AM
This is probably a dumb question, but is there a way for you to call the doctors office before your lecture and just find out if he will be calling you in the next few hours or not? Although his secretary may not know when he WILL be calling you, she may know when he WILL NOT be calling you. Like if she knows he has back-to-back appointments or something....?

DeeEast
10-29-2009, 12:38 AM
This is probably a dumb question, but is there a way for you to call the doctors office before your lecture and just find out if he will be calling you in the next few hours or not? Although his secretary may not know when he WILL be calling you, she may know when he WILL NOT be calling you. Like if she knows he has back-to-back appointments or something....?

No, its not a dumb question. I pretty much asked that already. He had told me that he will call me as soon as he gets the final results. I know that he usually makes his calls anywhere from 3:30 to 5:30. But I assume he could call any other time. But I will be in class from 2 to 4:45, prime time for him calling.

shawnandangel
10-29-2009, 12:45 AM
I am so sorry you haven't heard anything yet. I agree with what PP have said. Reduce your expectations of yourself! Don't feel bad for watching tv. But really, you should stop Googling and trying to self-diagnose. You will only freak yourself out further.

Stay Away From Google!

Sending prayers your way mama.

sariana
10-29-2009, 12:49 AM
I am telling myself that it is because they think it is cancer and have to run the tests more than once before they call us and tell us.

Labs are notoriously slow. They don't seem to realize that people literally are pulling out their hair waiting for those test results. Please don't assume the worst.

From what I read, Myelodysplastic syndrome is extremely rare in children. There is no reason for you to assume that the odds are against your son.

Don't worry about letting the kids watch TV. You need that time, and they will be fine.

IME, it seems to take longer to get back a "normal, everything's fine" result than otherwise. Maybe they prioritize their contacts by who needs to take actions soonest? I don't know, but I hope no news is good news in your case.

:grouphug: to you for everything you have been going through lately.

happymom
10-29-2009, 12:52 AM
No, its not a dumb question. I pretty much asked that already. He had told me that he will call me as soon as he gets the final results. I know that he usually makes his calls anywhere from 3:30 to 5:30. But I assume he could call any other time. But I will be in class from 2 to 4:45, prime time for him calling.

I understand that he USUALLY makes his calls then- but maybe you can ask specifically tomorrow before your lecture so you wont be an anxious. Call the secretary and just ask straight out- do you know if Dr. X is planning to make calls in the next 3 hours? Maybe she will be able to tell you. It couldnt hurt to ask could it?

DeeEast
10-29-2009, 01:02 AM
I understand that he USUALLY makes his calls then- but maybe you can ask specifically tomorrow before your lecture so you wont be an anxious. Call the secretary and just ask straight out- do you know if Dr. X is planning to make calls in the next 3 hours? Maybe she will be able to tell you. It couldnt hurt to ask could it?

I agree. My only problem is that I want to know as soon as possible so I don't want him to wait until after my classes to call. KWIM?

happymom
10-29-2009, 01:23 AM
I agree. My only problem is that I want to know as soon as possible so I don't want him to wait until after my classes to call. KWIM?

Right, I was kind of thinking that he might take it that way and decide to push off the call. Sorry, I cannot even imagine what youre going through right now. Hugs!

Kitten007
10-29-2009, 01:29 AM
Just sending :hug: and praying still.

Globetrotter
10-29-2009, 03:00 AM
I know it is incredibly hard because we've BTDT a couple of times. Please try not to read anything into the delays or the tone of voice a provider uses or... anything else for that matter! We have to realize that, for them, this is just another work day. They might be rushed that day, or maybe there is a backlog in the labs and this wasn't considered urgent, or maybe someone is on vacation. For US, it's excruciating to wait for results. I remember one time I was waiting for some results and worked myself into a frenzy b/c they didn't just leave a msg. but told me to call back. I thought for sure it was terrible news, but the policy was to not leave messages due to privacy concerns! (unless you specifically told them okay) It turned out to be nothing!

Also, don't google until you know what you're dealing with. You will just freak yourself out. Hang in there, and this is the time to get help from friends and family!

JTsMom
10-29-2009, 07:13 AM
Thinking of you. :hug:

TwinFoxes
10-29-2009, 07:18 AM
Step away from Google. Seriously. When I was having a medical issue s few years ago I finally just had to stop Googling, and going on boards. It was so freeing. Google doesn't hasn't diagnosed your DS, and doesn't treat him.

Also agree with pp that you should try not to read things into tones of voices etc, wait time. I had CVS with my girls, and the geneticist's called a couple of days after we expected them to. And then when they finally did call they left a message saying they'd call back. Many many things went through my mind...why would they call back, and not just tell me on the message that everything was fine? In my head they wanted to tell my bad news in person, and not on the phone. Turns out, everything was fine. I know it's so hard not to look for clues, but try not to.

I'm still praying for you and DS!!!!

MoJo
10-29-2009, 07:25 AM
Still praying here too. I was up a lot last night and thought of you often. Hope you got some rest!

mecawa
10-29-2009, 09:15 AM
The waiting is the hardest part. When you don't know exactly what it is, I use to google everything, to the point where I had to make my husband keep me away from the computer when DD was sick. You read every worst case scenario, and it will drive you insane. It's good to research, so you are informed and can me an advocate for your child but you get to a point where you need to stop. I wouldn't look at anything else if I were you until you hear back from your doc, then look up the info he/she tells you. Then you should know exactly what it is you should be looking at.

I'm sorry it is taking so long, it took us 3 months for DD2 to get her official diagnosis ( i still can't believe testing can take that long, especially in this era!!!) and the waiting was excruciating. After we knew what it was we were dealing with it was so much easier to move forward, because it was a no longer a mystery, it was more like okay what do we do, how do we fix this. Hang in there, the fact that you can even talk about it is great, you're doing better than I was.:hug:

ThreeofUs
10-29-2009, 09:28 AM
Good gravy, Dee, I'm so very sorry you're going through this. I'd be a basket case now, too!

I'm thinking of you, sending P&PT, and :grouphug:.

sste
10-29-2009, 10:10 AM
Can they speed this up? I am not clear on why it is taking so long? Did your doctor explain? I would not hesitate to call and nicely ask about if there is any way to expedite as you and your family are suffering a great deal with this waiting.

Also, try to get some sleep. I know its hard but you really need to sleep to be able to deal with things.

KpbS
10-29-2009, 10:24 AM
:hug: :hug: :hug:

Thinking of you and praying for you all.

sidmand
10-29-2009, 11:17 AM
I don't have anything to say just wanted to send some :22:'

Good luck today. I hope you get the best possible news in the situation.

MamaMolly
10-29-2009, 12:08 PM
Get thee away from Google, Mama. It does WAY more harm than good to you nerves. I know you feel like you have to do *something* but Google will only stress you out more. Take a shower instead. Fold laundry. Anything that is mindless that you don't have to focus too much on how it turns out.

I also think that this is a fine time for TV for your other DCs. And that is situations like this popcorn is a vegetable. As are potato chips. Chocolate milk and icecream are full of calcium. Juice has fruit in it. Cut yourself some slack.

Pur P & PT are with you! :kisscheek:

brittone2
10-29-2009, 12:15 PM
I'm so sorry you are stuck waiting :hug: You are in my thoughts.

srhs
10-29-2009, 12:59 PM
Get thee away from Google, Mama. It does WAY more harm than good to you nerves. I know you feel like you have to do *something* but Google will only stress you out more. Take a shower instead. Fold laundry. Anything that is mindless that you don't have to focus too much on how it turns out.

I also think that this is a fine time for TV for your other DCs. And that is situations like this popcorn is a vegetable. As are potato chips. Chocolate milk and icecream are full of calcium. Juice has fruit in it. Cut yourself some slack.

Pur P & PT are with you! :kisscheek:
:yeahthat: to all of that! Praying for you and your LO!

DeeEast
10-29-2009, 03:07 PM
Finally talked to the Dr. this morning. He said that all indications so far from the biopsy are that it is TEC. This is a very good thing. This means that the plan is just to keep getting his blood tested on a weekly basis and wait for the levels to go up on their own.

On the other hand, I asked him if that meant that the biopsy results ruled up myelodysplastic syndrome and he said no, although the indicators that he would have seen if that were the diagnosis were not there. He did say that some of the red blood cells looked "abnormal" but not cancerous. So they can't completely rule it out yet. However he strongly believes it is TEC and we just have to wait it out, i.e. they have gotten all of the information they can get from tests right now.

bubbaray
10-29-2009, 03:09 PM
Good news!

sariana
10-29-2009, 03:11 PM
Thank you so much for taking the time to keep us updated. You have many, many people here pulling for you and your son.

Hold on to the good news here. Give your son a hug and tell him you'll take care of him.

Though it still is not easy to watch your child suffer, it must be some relief to get the TEC diagnosis.

egoldber
10-29-2009, 03:11 PM
That is very good news!!!! :hug:

Snow mom
10-29-2009, 03:12 PM
That is great news.

crl
10-29-2009, 03:14 PM
I'm glad you finally heard and I'm glad the news is good!

Catherine

happymom
10-29-2009, 03:41 PM
NAK
:hug: been thinking abt you and ur DS all day. thanks for sharing the wonderful news.

MamaMolly
10-29-2009, 03:41 PM
Thanks for updating, that is really good news. Hope you can get a bit of much needed peace and rest.

TwinFoxes
10-29-2009, 03:44 PM
Thank goodness! I hope you are able to get some well needed rest.

urquie
10-29-2009, 04:09 PM
i'm so glad to hear the positive news! good luck with your lecture.

shawnandangel
10-29-2009, 04:15 PM
That is very good news! Thanks for sharing!

rlu
10-29-2009, 04:29 PM
I'm going to be optimist and cheer. I've been following but don't think I posted before on your threads. Your DS and family are in our prayers.

ThreeofUs
10-29-2009, 04:42 PM
Phew! Sounds like you got the best possible results (though still a poor situation). Hugs to you all.

JTsMom
10-29-2009, 04:53 PM
Phew! Good update! :) Hope you can get some sleep tonight. :hug:

Kitten007
10-29-2009, 04:58 PM
i'm so glad to hear the positive news! good luck with your lecture.

:yeahthat:

blisstwins
10-29-2009, 06:00 PM
I just read about TEC and I hope your doctor is right. That would be wonderful news! I will continue to keep you and your son in my thoughts and prayer. I hope you can catch up with some sleep tonight. I have felt for you.

almostamom
10-29-2009, 06:05 PM
Good news indeed! Good thoughts and prayers are still being sent your way!

Hugs,
Linda

trentsmom
10-29-2009, 06:10 PM
I just logged on here to see if you had heard anything yet. I'm so thankful you have! I hope you are able to sleep tonight.

Globetrotter
10-29-2009, 10:48 PM
I'm glad you posted your update. I feel a huge sense of relief for you... doctors normally don't give positive news without good evidence, so he's probably right about TEC.

:hug:

DeeEast
10-30-2009, 12:02 AM
I'm glad you posted your update. I feel a huge sense of relief for you... doctors normally don't give positive news without good evidence, so he's probably right about TEC.

:hug:

That's what I am thinking. Thanks.

niccig
10-30-2009, 12:05 AM
That's such good news. I'm glad that you finally got the test results. Now, you can go hug DS, and get some rest. Your nerves must be frazzled by now.

KpbS
10-30-2009, 12:08 AM
:hug: :hug: Thank you for the update. Great news! Such a relief. :hug:

DeeEast
10-30-2009, 12:38 AM
It was good news, don't get me wrong. But it was not dispositively " No there is no cancer."

So yes, I will sleep better tonight. Will I sleep well? We will see. I really had wished that he could say from the biopsy that cancer was not an option. I flat out asked him that and he said no.

So. Sleep will come more easily but not automatically. From what I've read TEC could take up to a year to come up to normal. I cannot envision a year of such suspense waiting for the levels to come up to normal.

kozachka
10-30-2009, 01:45 AM
I am so glad to hear that you got the good news. Hope you can finally get some sleep.

BelleoftheBallFlagstaff
10-30-2009, 03:05 AM
Dee,
Glad to hear the news is good, not definitive, but good. I will send some more anti-cancer PT's your way. :grouphug:

MoJo
10-30-2009, 07:24 AM
That sounds very hopeful! Praise God!

Please continue to keep us updated.

wellyes
10-30-2009, 07:32 AM
I was so happy to see this update. Keep us posted. And of course, stay away from Google! It's so tempting to pull yourself into a worst-case-scenario spiral of depression online when you're looking at medical stuff!

mecawa
10-30-2009, 10:12 AM
I'm sooo glad you got good news.

randomkid
10-30-2009, 10:20 AM
I haven't posted yet, but have been following your threads and holding my breath for you. Every time I've read your posts, I can just feel your desperation and worry. I cannot even imagine what you have been going through this past week. I'm glad you have gotten some good news and will continue to send P&PT that the final results are good.

I have a general idea what TEC is, but what does TEC stand for?

MoJo
10-30-2009, 11:01 AM
I was wondering, too, so here's a quote I pulled from the DBA website:


Transient Erythroblastopenia of Childhood (“TEC”): TEC is a slow developing anemia that occurs when the bone marrow temporarily stops making red blood cells.This most often occurs following a viral infection. TEC usually occurs early in childhood, typically around the age of two. As the name suggests, TEC is a short-term form anemia, from which all patients completely recover.

I liked the last line a lot.

BabyMine
10-30-2009, 11:58 AM
I have been counting down the days until today so that you can find out the results. I am still praying and sending positives thoughts so that when you DO recieve the good news that you can finally get some sleep.

DeeEast
11-01-2009, 12:44 AM
Just a quick post to reply to all of the supportive posts. It has meant a lot. Thanks to all and you are all remembered individuallly.

DeeEast
11-01-2009, 12:47 AM
I haven't posted yet, but have been following your threads and holding my breath for you. Every time I've read your posts, I can just feel your desperation and worry. I cannot even imagine what you have been going through this past week. I'm glad you have gotten some good news and will continue to send P&PT that the final results are good.

I have a general idea what TEC is, but what does TEC stand for?

Transient Erthryloblastopenia of Childhood. But I think that was already taken care of in another well=informed thread.