april6263 wrote:

hi, wanted to give you guys an update really quickly.........we have a diagnosis.........she has something called Leukoencephalopathy  it was a reaction to one of her chemo drugs........not an allergy, just her body reacted badly to the drug.......they are giving her another drug to counteract the one that caused this.......it's a rare reaction and there was no way to predict this would happen........the good news is it is reversable  but it is going to take quite awhile.....they said a couple of months to get back to normal.....and in the meantime they have to change her chemo meds.......they are giving her a break from chemo for a week or so but then she will have to restart it.....she came around for awhile last night and talked clearly around 2:30 in the morning while they were doing another mri .......when they took her out of the mri machine she said to me  "mom they were playing Maks and Meryl music in there".....lol.....they were playing Sam Smith music to her during the mri....(I think I love MnM and Sam even more now) .....this morning she lapsed back into another episode again and is still having it,  which they tell me is going to happen quite a bit over the next couple of days or weeks, but we are holding onto the knowledge that it is treatable and will pass.....thanks for all the love and prayers and hand holding.......I will answer all of my pm's as I get a chance ok.......we are going to be in the icu for awhile.......i will update as much as i can.........holding tightly to all of your hands......love you guys (((hugs))))































 

Yes !!!  I am so happy to hear that the Drs. know what cause the symptoms/problems but most importantly, that it is reversible.  I know that you and your family are so relieved to hear that. 

LOL,  I love your daughter April, her saying that they were playing MnM music was fantastic.  Sometimes, I wish that they knew just how important they were in bringing us all together and how they still can bring smiles to our faces in times of stress.   Give our "niece" a hug from all of us sisters. So glad for the update........love and hugs to all of you.

Last edited by LuvSeason18 (5/03/2015 4:40 pm)

Who do you think this is?

april6263 wrote:

hi, wanted to give you guys an update really quickly.........we have a diagnosis.........she has something called Leukoencephalopathy  it was a reaction to one of her chemo drugs........not an allergy, just her body reacted badly to the drug.......they are giving her another drug to counteract the one that caused this.......it's a rare reaction and there was no way to predict this would happen........the good news is it is reversable  but it is going to take quite awhile.....they said a couple of months to get back to normal.....and in the meantime they have to change her chemo meds.......they are giving her a break from chemo for a week or so but then she will have to restart it.....she came around for awhile last night and talked clearly around 2:30 in the morning while they were doing another mri .......when they took her out of the mri machine she said to me  "mom they were playing Maks and Meryl music in there".....lol.....they were playing Sam Smith music to her during the mri....(I think I love MnM and Sam even more now) .....this morning she lapsed back into another episode again and is still having it,  which they tell me is going to happen quite a bit over the next couple of days or weeks, but we are holding onto the knowledge that it is treatable and will pass.....thanks for all the love and prayers and hand holding.......I will answer all of my pm's as I get a chance ok.......we are going to be in the icu for awhile.......i will update as much as i can.........holding tightly to all of your hands......love you guys (((hugs))))

Sweet, sweet April ... sending you strength. xoxo




























 

JetmamaDiDi wrote:

eastcoast wrote:

April,
So relieved to hear that this is reversible.  I think your daughter must have a double helping of strength and courage to go through all she has gone through.  You can tell her for me that she is my hero!  Imagine all that she has been through and she is deighted at the M&M music!  My superhero!

 I know, EC....that is so awesome!!!  MnM brought us together and MnM are still the glue that holds us together in ways we sometimes don't even know!!   

EVERY ONE of you sisters is simply amazing!  I am truly touched by the ways in which we rally together to support those who need us most....whoever that may be at any time.  From the inspiring quotes, posts, hymns. songs, pictures, to just the simple messages......we are truly a sisterhood and every one of you is very special!

Thanks to each of you for being who you are and for being there whenever anyone is in need.  I know there are a few who don't post, but who lurk and also send their best wishes and love to April, her daughter, Cassidy, View, and others.

Thanks, Gabriele, too for being our night watch(wo)man.  You are always there when we aren't.

My hands are out to each of you in gratitude for your love and  support.

Hugs and love to each of you..........

 


Jet I must second everything you said.  We are truly blessed to have each other in our lives.  Yes, and to Gabriele thank you for being there watching over us while we sleep...

Love to you all...

april6263 wrote:

hi, wanted to give you guys an update really quickly.........we have a diagnosis.........she has something called Leukoencephalopathy  it was a reaction to one of her chemo drugs........not an allergy, just her body reacted badly to the drug.......they are giving her another drug to counteract the one that caused this.......it's a rare reaction and there was no way to predict this would happen........the good news is it is reversable  but it is going to take quite awhile.....they said a couple of months to get back to normal.....and in the meantime they have to change her chemo meds.......they are giving her a break from chemo for a week or so but then she will have to restart it.....she came around for awhile last night and talked clearly around 2:30 in the morning while they were doing another mri .......when they took her out of the mri machine she said to me  "mom they were playing Maks and Meryl music in there".....lol.....they were playing Sam Smith music to her during the mri....(I think I love MnM and Sam even more now) .....this morning she lapsed back into another episode again and is still having it,  which they tell me is going to happen quite a bit over the next couple of days or weeks, but we are holding onto the knowledge that it is treatable and will pass.....thanks for all the love and prayers and hand holding.......I will answer all of my pm's as I get a chance ok.......we are going to be in the icu for awhile.......i will update as much as i can.........holding tightly to all of your hands......love you guys (((hugs))))

Oh, wow, April, I'm so sorry she's going through this, but I'm glad they figured out what was wrong. I'm sending you both hugs and prayers.