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Reply | Forward Message #4378 of 5561 |
alex

Hi everyone I am updating on alex. Im worried and taking him in today
for counts he is not due for another week but his lips look pale to
me! I feel so sick about this he has been doing soooooooooooo great
since almost a year i cant believe it. We havent had a red cell
problem for about 2 years is has been his platlets since then. Every
year at this time it is SO strange but around his birthday which is
August 18. Im really scared the last time his hemoglobin started we
had to get his central line and start chemo which was the vincristine.
Im just praying we dont have that happening again but im going in for
counts today just to see.
Mindy (mom to Alex 5 1/2)







Tue Aug 1, 2006 2:27 pm

aamom4ever
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Message #4378 of 5561 |
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Nicole, As you will find on this site what works for one doesn't for another, my son did not have success with the Rixtuin but others who had it at the same ...
bettanmic@...
bettanmic
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May 26, 2006
1:34 pm

Hi everyone I am updating on alex. Im worried and taking him in today for counts he is not due for another week but his lips look pale to me! I feel so sick...
aamom4ever
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Aug 1, 2006
2:28 pm

Mindy, We will be praying for Alex today. Please let us know as soon as you have the results. Grace (Katie 14 with Evans) aamom4ever <aamom4ever@...>...
Grace Hill
rghill1diabl...
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Aug 1, 2006
3:34 pm

Mindy, Im so sorry to hear that Alex has to go back. I hope that his counts are ok. Please let me know when you find out. I convinced Madison's doctor not to...
lisa shoenfelt
lmshoenfelt
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Aug 1, 2006
9:32 pm

Well my instinct was right! His hemoglobin is at 7! They started him on steroids again i never wanted steroids back in our lives but i dont have alot of choice...
aamom4ever
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Aug 2, 2006
2:55 am

HI Mindy, I'm so sorry that Alex is back on steroids. I know how I dread that happening to Katie. Alex's symptoms were probably not a virus, but were a...
Grace Hill
rghill1diabl...
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Aug 2, 2006
3:13 am

mindy, Are his platelets down too? Lisa aamom4ever <aamom4ever@...> wrote: Well my instinct was right! His hemoglobin is at 7! They started him ...
lisa shoenfelt
lmshoenfelt
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Aug 2, 2006
1:00 pm

... elevated. ... right! His hemoglobin is at 7! They started him ... dont ... doctor at ... that ... a ... was ... a ... about ... went ... is...
aamom4ever
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Aug 2, 2006
2:51 pm

Mindy, We will keep Alex in our thoughts and prayers. Erik too experienced a fever and vomiting when his platelets dropped. Please keep us posted on how he...
Clark Brigger
chbrigger
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Aug 2, 2006
12:03 pm

Well hello to everyone, I havent posted in some time. My son is alex he is seven and was diagnoised wiht evans at 1 year old. We went for one full year in...
aamom4ever
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Sep 28, 2007
9:45 pm

Hi Mindy, I just took some time to pray for Alex. I know exactly what you mean about it feeling like you are dreaming. We have all been there. When Katie...
Grace Hill
rghill1diabl...
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Sep 28, 2007
11:00 pm

Hi Mindy. I dont know if you remember me but when my daughter was having a really hard time with the Evan's lsat year, you gave me a lot of help about the...
lisa heisterman
lmshoenfelt
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Sep 28, 2007
11:40 pm

... sent our address to you at your e-mail address!! Mindy & Alex ... having a really hard time with the Evan's lsat year, you gave me a lot of help about the...
aamom4ever
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Sep 29, 2007
5:54 pm

... THANK MADISON SOOOO MUCH FOR THE CARE PACKAGE ALEX WAS JUST SO THRILLED!!! IT HAD JUST THE PERFECT TIMING HE REALLY ENJOYED IT AND AS SOON AS HE IS...
aamom4ever
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Oct 8, 2007
8:56 pm

Mindy, I am glad that he received it and liked it. I remember when Madison was really sick last year there were so many wonderful people who mailed her...
lisa heisterman
lmshoenfelt
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Oct 8, 2007
9:37 pm

Thank you so much for the replys!! Alex is stable his hemoglobin is at 6.8 today 6.9 yesterday and 7.0 the day before after the blood transfusion. He has one...
aamom4ever
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Sep 29, 2007
5:50 pm

Mindy, Glad to hear things seem to be going a little beter. What are his platelets at? I am a strong believer that chlorine plays a role in Evan's Syndrome....
lisa heisterman
lmshoenfelt
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Sep 29, 2007
7:31 pm

Thanks for the messages again!! WE GET TO GO HOME!!! he is still holding for the 4th day t 6.9 on his hemoglobin we will go into the office tomarrow for...
aamom4ever
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Sep 30, 2007
6:42 pm

Just a suggestion, look into converting your pool to a salt water chlorinator. The only chemical you use is regular table salt NO Chlorine at all. We built a...
INDIA DIGIOVANNI
indidigi
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Sep 30, 2007
8:55 pm

Hi, just to even up the odds a bit, I don't think that swimming pools had anything to do with my son's getting Evans or any of the bad times he has had with...
Debby Wechsler
jmdjbw
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Oct 1, 2007
9:29 pm

On the posting about chlorine, my son in the past was ill in March and Feb, so no swimming, but this time, yes, he swam most of the day Saturday in the pool....
tengland71
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Oct 2, 2007
2:57 am

I hope your son feels better soon.... My son, almost 15, is having a rough time with counts dropping right now... It happened at the end od August, oddly...
Erin Healey
eheals27
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Oct 2, 2007
12:11 pm

hELLO EVERYONE, JUST UPDATING ON ALEX. WELL WE HAVE BEEN OUT OF THE HOSPITAL FOR A WEEK NOW BUT HE IS STILL DROPPING ON HIS HEMOGLOBIN. THEY STOPPED THE...
aamom4ever
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Oct 7, 2007
4:29 am

Prayers are with Alex, you, and your family... In my experience, my son's went to 4.5 and his doctor said the has had them as low at 3.5. He told me since my...
stillermom
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Oct 7, 2007
4:13 pm

hello everyone just an update on alex. His white cells are up!!! 4.6 and his red is 11.1 so he is back at school!!! we are so happy and we are formally...
aamom4ever
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Nov 5, 2007
6:41 pm

Glad to hear the good news. Betty Mom to Paul 20 Evans+ ************************************** See what's new at http://www.aol.com...
bettanmic@...
bettanmic
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Nov 5, 2007
8:39 pm

hello everyone this is mindy, alex's mom havent been on in quite awhile Alex is having his famous summer drop just like clockwork his platlets are at 4,000 the...
aamom4ever
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Jul 8, 2009
11:14 pm

I'm glad to hear that Alex is a candidate for NPlate. I have spoken of this new treatment before, but I have a little more insight into it now. NPlate is a new...
Constance McNamara
elzangelgirl
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Jul 13, 2009
8:49 pm

Thanks for the response about NPlate we are waiting for the insurance approval. Our doctor is excitied about this medication, she does not want to repeat...
aamom4ever
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Jul 16, 2009
5:23 pm

  Hi..Sorry to hear about Alex.  My granddaughter Madison is Alex's age(diagnosed with ITP/Evan's Syndrome one week before her 5th birthday) and we have...
randy or debbie shoen...
shoenfelts
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Jul 9, 2009
12:09 am
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