After the treatment they did last night her platelets should have come up. They were hoping to around 30,000-40,000. Hers only went up to 5000. Now they are back down to nothing.
They are still saying they don't think leukemia since her other blood cells look good but they don't know what is causing her platelets to not rise. We might not know until they get all the tests back. They said the treatment they did last night wouldn't interfere with treatment for leukemia if they need to do that, so I guess they are still thinking that is a possibility.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
After the treatment they did last night her platelets should have come up. They were hoping to around 30,000-40,000. Hers only went up to 5000. Now they are back down to nothing.
They are still saying they don't think leukemia since her other blood cells look good but they don't know what is causing her platelets to not rise. We might not know until they get all the tests back. They said the treatment they did last night wouldn't interfere with treatment for leukemia if they need to do that, so I guess they are still thinking that is a possibility.
Aww Mindi :( at least she's in the best place at the moment... and if they're not panicking perhaps it's just one of those stupid virus's that people get every now and then. Who was it said here about their niece who went through this and forgot all about it til now that you mentioned it? I really hope that's the case for your daughter :( do you have somebody with you at the moment? Other than your kids? Cos it really can't be easy for you right now!
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
Just me and my kids are here. My oldest is 20, so is a ton of help and support. She actually took the little kids up to a parade that is going on tonight. We are lucky that we live like 2 blocks from the Main St in our town, so they walked up there. It will do them good and I got to sit and cry all by myself and did the two sink fulls of dishes!
So now I got my crying out and I am a bit calmer.
My cousin is also just a phone call away if I need her.
I was ok until they said the few platelets she did get from the treatment are now gone. That really should have worked. The next treatment they want to try causes renal failure sometimes.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
Just me and my kids are here. My oldest is 20, so is a ton of help and support. She actually took the little kids up to a parade that is going on tonight. We are lucky that we live like 2 blocks from the Main St in our town, so they walked up there. It will do them good and I got to sit and cry all by myself and did the two sink fulls of dishes!
So now I got my crying out and I am a bit calmer.
My cousin is also just a phone call away if I need her.
I was ok until they said the few platelets she did get from the treatment are now gone. That really should have worked. The next treatment they want to try causes renal failure sometimes.
Maybe you should ask your cousin to call over? Even if she doesn't do anything it's good to have someone there when you're playing the waiting game... which is kinda what you're doing right now!
I'm glad the other kids are getting out though when are you gonna hear more news do you know?
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
I'm sure my husband will call after the platelet transfusion and let me know what is going on.
I'm ok right now. Cleaning while the kids are gone. Making them pizza for when they get home. Keeping busy.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
I'm sure my husband will call after the platelet transfusion and let me know what is going on.
I'm ok right now. Cleaning while the kids are gone. Making them pizza for when they get home. Keeping busy.
That's good! once you open the floodgates :eek: it's so hard to close them and it could be something perfectly normal that they can deal with no problem. I know it's terrifying right now... and you must feel helpless... but there's nothing you can do! I've had the cold for about a week right now... so I can't imagine she's just gonna get better in a day! Awww she wanted to go to school though kids these days eh?
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
I can't imagine the stress you must be dealing with not knowing what's wrong. Just keep an optimistic attitude and we'll keep you in our thoughts and prayers. Like it was said earlier, she's in the best hands possible.
Whoa, chill bro... you know you can't raise your voice like that when the lion's here.
Last Wednesday my dad went in for a simple prostate surgery. The surgery went fine but what we didn't know and neither did the doctors was a blood clot formed. Thursday nite he started having trouble breathing. They did a chest/lung scan and saw the clot. It was described as ''massive'' and in his right lung. The plan was to be put on blood thinners and wait until morning. On friday morning around 1030am my father coded for 2o mins. His whole body crashed. The clot went to his heart and he needed to have emergency heart surgery to have it removed. The surgery lasted for 97mins and he made it. 70% of people in is condition do not survive the surgery. What the concern is when he coded he didn't have oxygen to his brain for 20 mins.
Today he is finally responding to commands and moving his hands and legs. We don't know yet if any damage was done due to no oxygen to the brain. So far he is going down the right path.
It's been very intense and just so much happening. Were all holding up but its rough. He had a stroke 15 yrs ago and bypass and those weren't this bad. We have been living at the hospital since friday. It's a hr by hr situation. I just wanna hear his voice and him talking to me again.
I wish the best for you Mindi and your family. Seems some of us are in a tough spot. I hope we all get threw it ok.
Oh my gosh, Mindi! I am very sad to hear this about your daughter...but yeah, she's being treated and you're sounding very strong (although it's good that you can cry and be scared, too)...My brother used to bleed from his ears and his nose all the time when he was a kid. Freaked me out to no end...ick...but he grew out of it. Got some tubes in his ears and that was he end of it. Nobody had any idea what was going on...
But my thoughts are with you and your family and your little girl...best wishes and positive vibes are being sent from Vancouver Island...
Mindi-
I posted something about this about a month ago. This exact thing happened to my 3 year old son - who is now almost 9 - we were in Columbia Hospital for kids in NY for almost a full week - they thought leukemia at 1st too - but it was this blood disorder. It is SO RARE. I couldnt believe I was reading this.
Most cases, this will happen to her only this once and she will bounce back and be normal. It is really scary. 5 years later my son's platelet count is still really low. Not dangerous, but low. he cannot play contact sports because of it. As they grow older sometimes they need their spleen removed, or in your daughter's case, a transfusion is necessary. I PROMISE she will be ok.
I was never so terrified in my life. But please do NOT think leukemia, b/c if her red and white cells are ok, it is not it. and I assume she has been healthy up until this point.
What caused my son's was an attack of a VERY BAD virus - 106 fever. A virus can produce this. None of the doctor's in one of NY's best hospital's even knew what was happening. It was his pediatrician that figured it out b/c he had the same blood disorder.
PLEASE PM me if you would like to chat, get any info or comfort I am here.....and totally relate to what is happening to you right now.
Cynthia
Patrick, very sorry to hear about your dad. I very much hope he turns around soon and makes a full recovery.
Cynthia(edvedder913) Thanks so much for posting about your experience! It really makes me feel so much better. I am hoping her 4 pm platelet check shows her platelets are up and they release her and she gets to come home!
Small update, they have given her an iv med treatment twice now and have given her platelets, despite all of that, her platelet count this am was 3000. Not anywhere near where they want it. Her nose has stopped bleeding, they ended up just keeping it packed my cotton.
I am not a praying person, but I am praying that her count is high at 4. I want my baby home!
Thanks everyone!!
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
I'm very, very sorry to hear about your little one. If it makes you feel better, I work in a blood lab, involving transfusion medicine, and there are lots and lots and lots of kids who we provide products for for YEARS- they manage to get by and be fine. I started reading the description of your daughter's symptoms and my heart was in my throat- kudos to you for going with your gut and bringing her in for treatment right away. Have your doctors talked with you yet about you or your husband or older daughter donating platelets for her? You can donate platelets every two weeks- I do, prettymuch, and it might be a good thing for you to suggest to your family and friends.
You and your little one will be in my prayers, and do know that lots of little ones out there with really scarry diagnosis live long, wonderful lives.
mostdefiled
she holds the hand that holds her down, she will rise above!
The latest blood check wasn't good. The last thing they have to try is an iv treatment that has a side effect in kids that can cause renal failure. I am not sure when they will be doing it. It only takes a few minutes but I am not sure if they will do it now or wait until me or Ken can be up there. He is on his way home right now to get a few things. My oldest is at work so I can't go see Jane tonight.
I am hoping that this will work tho because I have no idea what they will try next, not sure if there is another option.
They are also giving her a blood transfusion because she lost so much blood from her nose bleeding for days.
I am just broken. Trying to function for my other kids, so glad for my oldest daughter that helps me.
Jane is in good spirits. She is pale from all the lost blood but is up and playing in her bed.
My husband has given both blood and platelets before. I am not sure if he can do it right now, he works at a community college and I know they recently had a drive there so he may not be able to do it yet.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
can't your cousin help out tonight? I don't mean to press the issue.. but you're gonna need to take advantage of any help offered. Don't be afraid to... nobody would think twice in a situation like this.
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
can't your cousin help out tonight? I don't mean to press the issue.. but you're gonna need to take advantage of any help offered. Don't be afraid to... nobody would think twice in a situation like this.
She could if I need her.
We are good. My oldest will be home in a bit. It's actually easier with just us here, I don't feel like I need to play hostess. My mom and sister are close too. But right now we are good.
I am just hoping that this next treatment works and she gets to come home tomorrow.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
She could if I need her.
We are good. My oldest will be home in a bit. It's actually easier with just us here, I don't feel like I need to play hostess. My mom and sister are close too. But right now we are good.
I am just hoping that this next treatment works and she gets to come home tomorrow.
Yeh, I know what ya mean! Fingers crossed... and I would pray for her right now if I wasn't a bit drunk! So I will again in the morning
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
The latest blood check wasn't good. The last thing they have to try is an iv treatment that has a side effect in kids that can cause renal failure. I am not sure when they will be doing it. It only takes a few minutes but I am not sure if they will do it now or wait until me or Ken can be up there. He is on his way home right now to get a few things. My oldest is at work so I can't go see Jane tonight.
I am hoping that this will work tho because I have no idea what they will try next, not sure if there is another option.
They are also giving her a blood transfusion because she lost so much blood from her nose bleeding for days.
I am just broken. Trying to function for my other kids, so glad for my oldest daughter that helps me.
Jane is in good spirits. She is pale from all the lost blood but is up and playing in her bed.
My husband has given both blood and platelets before. I am not sure if he can do it right now, he works at a community college and I know they recently had a drive there so he may not be able to do it yet.
Mindi...I am so sorry to hear this. This poor little girl. My thoughts and prayers are with you and your little girl. And hopefully she'll snap back and be back home REAL soon. xoxo
i just read through everything. as everyone else has said, my thoughts and prayers are with you and your family. my nephew had a lot of various health problems when he was younger. kids are amazing with their resilience. your daughter will be home soon and will be stronger and happier than ever. stay positive.
Just a quick update from this morning. Her platelets are up to 9000 so they haven't decided if they want to wait to see if they keep going up or to do the other iv treatment.
So far they have done IVIG twice, platelet transfusion on Wednesday night and blood transfusion last night.
It's looking like she won't be home again tonight, but a slight chance she will.
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
Comments
They are still saying they don't think leukemia since her other blood cells look good but they don't know what is causing her platelets to not rise. We might not know until they get all the tests back. They said the treatment they did last night wouldn't interfere with treatment for leukemia if they need to do that, so I guess they are still thinking that is a possibility.
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
So now I got my crying out and I am a bit calmer.
My cousin is also just a phone call away if I need her.
I was ok until they said the few platelets she did get from the treatment are now gone. That really should have worked. The next treatment they want to try causes renal failure sometimes.
I'm glad the other kids are getting out though
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
So sorry for you hun, atleast you have all of us here
Everything is going to be okay, keep your chin up...
I'm ok right now. Cleaning while the kids are gone. Making them pizza for when they get home. Keeping busy.
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
I will keep looking here for updates
Hugs to you and your family
Where I'm not ugly and you're lookin' at me
Today he is finally responding to commands and moving his hands and legs. We don't know yet if any damage was done due to no oxygen to the brain. So far he is going down the right path.
It's been very intense and just so much happening. Were all holding up but its rough. He had a stroke 15 yrs ago and bypass and those weren't this bad. We have been living at the hospital since friday. It's a hr by hr situation. I just wanna hear his voice and him talking to me again.
I wish the best for you Mindi and your family. Seems some of us are in a tough spot. I hope we all get threw it ok.
But my thoughts are with you and your family and your little girl...best wishes and positive vibes are being sent from Vancouver Island...
I hope your daughter gets better soon, and they find a way to stabilize her platelets.
Stay strong.
2010 - Newark 5/18 MSG 5/21
2011 - PJ20 9/3-9/4
2012 - MIA Festival 9/2
2013 - Wrigley Field 7/19 Brooklyn 10/18-10/19 Philly 10/22
2015 - Colbert show - 9/23 Global Citizens Festival 9/26
2016 - Philly 4/28-4/29 MSG 5/1-5/2
I posted something about this about a month ago. This exact thing happened to my 3 year old son - who is now almost 9 - we were in Columbia Hospital for kids in NY for almost a full week - they thought leukemia at 1st too - but it was this blood disorder. It is SO RARE. I couldnt believe I was reading this.
Most cases, this will happen to her only this once and she will bounce back and be normal. It is really scary. 5 years later my son's platelet count is still really low. Not dangerous, but low. he cannot play contact sports because of it. As they grow older sometimes they need their spleen removed, or in your daughter's case, a transfusion is necessary. I PROMISE she will be ok.
I was never so terrified in my life. But please do NOT think leukemia, b/c if her red and white cells are ok, it is not it. and I assume she has been healthy up until this point.
What caused my son's was an attack of a VERY BAD virus - 106 fever. A virus can produce this. None of the doctor's in one of NY's best hospital's even knew what was happening. It was his pediatrician that figured it out b/c he had the same blood disorder.
PLEASE PM me if you would like to chat, get any info or comfort
Cynthia
Hang in there! and contact me if you need to talk. xoxo
I woke up thinking of this.
Where I'm not ugly and you're lookin' at me
Cynthia(edvedder913) Thanks so much for posting about your experience! It really makes me feel so much better. I am hoping her 4 pm platelet check shows her platelets are up and they release her and she gets to come home!
Small update, they have given her an iv med treatment twice now and have given her platelets, despite all of that, her platelet count this am was 3000. Not anywhere near where they want it. Her nose has stopped bleeding, they ended up just keeping it packed my cotton.
I am not a praying person, but I am praying that her count is high at 4. I want my baby home!
Thanks everyone!!
wish you and your daughter the best.
Sending you good thoughts
>
...a lover and a fighter.
"I'm at least half a bum" Rocky Balboa
http://www.videosift.com/video/Obamas-Message-To-American-Indians
Edmonton, AB. September 5th, 2005
Vancouver, BC. April 3rd, 2008
Calgary,AB. August 8th, 2009
and that your little is not that sick ...
hope the message will be good !!!
You and your little one will be in my prayers, and do know that lots of little ones out there with really scarry diagnosis live long, wonderful lives.
mostdefiled
I am hoping that this will work tho because I have no idea what they will try next, not sure if there is another option.
They are also giving her a blood transfusion because she lost so much blood from her nose bleeding for days.
I am just broken. Trying to function for my other kids, so glad for my oldest daughter that helps me.
Jane is in good spirits. She is pale from all the lost blood but is up and playing in her bed.
My husband has given both blood and platelets before. I am not sure if he can do it right now, he works at a community college and I know they recently had a drive there so he may not be able to do it yet.
ilovesinging-The crazy lady that you catch in detention. Yeah,you can talk to me.
I am me-I would love to keep it that way.
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
We are good. My oldest will be home in a bit. It's actually easier with just us here, I don't feel like I need to play hostess. My mom and sister are close too. But right now we are good.
I am just hoping that this next treatment works and she gets to come home tomorrow.
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
Mindi...I am so sorry to hear this. This poor little girl. My thoughts and prayers are with you and your little girl. And hopefully she'll snap back and be back home REAL soon. xoxo
So far they have done IVIG twice, platelet transfusion on Wednesday night and blood transfusion last night.
It's looking like she won't be home again tonight, but a slight chance she will.