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ButchL
ParticipantAshley has a sister Casey. She is 16. They are typing her today but they said they may not use her even if a match due to both Kelly and Ashley having issues. There is no telling if Casey is at risk at this point. She is at Roswell now, we’ll know more later……
They “typed” Casey today. We’ll have the results Friday if she is a match. They are also doing a preliminary search for an unrelated donor as well. Platelets were at 30,000 today so no transfusions. Ashley is also meeting with someone that specializes in natural medicine as well this week.
ParticipantToday her platelets were at 8,000. Another transfusion……
ParticipantToday’s visit brings the bad news. They say it is severe aplastic anemia. They want to do a transplant ASAP. On Tuesday we will get the ball rolling and get her younger sister tested and go from there…….
ParticipantShe was at 7,000 and after the platelets went to 51,000. That was a good bag! They did the bmb and will have some results on Friday. They don’t sound as optimistic today as they did Monday. They are going to go ahead and get her sister tested to see if she is a match in case we need it. They even mentioned today that it could be MDS or AA. We will see…….
ParticipantUPDATE – Her platelets are at 7,000 this morning. She is getting platelets right now and will have another BMB at 1PM today….
ParticipantI ran across her page back when my wife was ill. There is a lot of good info there and Ashley has started changing some of her lifestyle. Currently Ash doesn’t have internet at her house so we are going to get that set up. (She usually uses it at school). I’ll post more tonight after her doc visit today.
ParticipantJust got back from Roswell.
Ashley may have non-severe aplastic anemia. They are still doing more tests. Her platelets are at 11,000 today which is the highest they have been. Her RBC and WBC counts are up a little as well. She will go back for more blood work Wednesday. If the counts stay the same or higher, they will continue to monitor. They have a couple different treatments they can try depending on her counts. ATG, Cyclosporin etc. A transplant would be the last resort. It all depends on her counts.
I’ll update as we learn more but we consider this good news……
ParticipantI’ll probably get some of the spelling/terms wrong so forgive me. She currently has a lot of petechie (red dots) bad bruising and frequent nose bleeds. They had her on prednesone for the last 3 weeks as they thought it was ITP. This week they gave her gamma globulin TX Tues-Thurs. Tues 8,000 pl, wed 5200, thurs 3500, today 2300. The docs do not want to do regular platelet tx yet as it could increase the risks if she has to go with a BMT.
Another dilema is that she has a 16 yr. old sister. She would of course probably be the best match should it go that way. The problem is, they are thinking this may be hereditary so she needs to be thoroughly looked at as well.
And as for the weather in October Neil, I was lucky. I only lost power overnight. Neighbors of my parents had so much flooding, their washer and dryer were floating in the basement! Everywhere you look here the trees are broken still. It is still a mess here and there.
ParticipantNot a typo… 2300 Yesterday 3500. I don’t have the numbers but wbc and rbc low as well.
ParticipantSandy,
My prayers are with you. I’m so sorry.
Butch
ParticipantCongrats Carrie!
Have a great holiday………
ParticipantI thought I saw your face today,
in the sparkle of the morning sun.And then I heard the angel say,
“Their work on earth is done.”I thought I felt your touch today,
in the breeze that rustled by.And then I heard the angel say,
“The spirit never dies.”I thought that you had left me,
for the stars so far above.And then I heard the angel say,
“They left you with their love.”I thought that I would miss you so,
and never find my way.And then I heard the angel say,
“They’re with you every day.”“The sun, the wind, the moon, the stars, will forever be around,
reminding you of the love you shared, and the peace they’ve finally found.”ParticipantPatti:
The doc said her white blood cells show that she is still fighting an infection so she is staying with her previous diagnosis of postinfectious thrombocytopenia.
ParticipantI went with Ashley to the doctor today. Her platelets are at 7,000 with 5 days of steroids. The doctor is increasing the steroids to 60mg. and recheck in a week. The doctor says it should start coming around soon. We’ll see.
ParticipantUPDATE:
Doc thinks it is postinfectious thrombocytopenia. The doc is giving her prednosone for a week. She said it may take more than one round of steroids. Retesting on Tuesday. I’ll update when I get more info. She is currently at 5,000 platelets! Doc is trying to keep her out of the hospital if possible. I’ll update when I get more info.
Thanks for the prayers!
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