The Leukemia & Lymphoma Society Community: Message List

Re: addison update

communityreply@lls.org — Tue, 13 Dec 2011 19:39:44 GMT

I also forgot to mention that my uncle s dying of cancer. We just found out on Friday. He was diagnosed around the same time addison was with a form of head and neck cancer but his just spread to rapidly. In May we lost my grandfather unexpectantly as well. Its just been really hard these last few months. I am just so tired. At first, we had all kinds of family here,but i guess like with everything they have lives and jobs and can't be here. I am literally running on 2 hours of sleep since last Wednesday. I am so exhausted that i am starting to get sick myself.

Re: Anyone been at any of the housing at St.Jude

communityreply@lls.org — Tue, 13 Dec 2011 16:09:00 GMT

target house. its wonderful. No treatments are done in housing..you must come to the hospital..when we were out..we were there all day. sometimes it was before dark we left to the hospital and didn't get back till well after dark. its very tiring..but the housing; target house especially, is very nice.

addison update

communityreply@lls.org — Tue, 13 Dec 2011 16:05:52 GMT

I know its been a long time since i have been on. I apologize. I am so tired. My body is just struggling to keep going so by the time the day is done its all i have to update Addy's facebook page i created. We were at St. Jude's for thanksgiving but we got to go home the following week! Only for addison to get terribly sick and then it was all i could to not beat a nurse. (long story) In the end we went back to St. Jude's and Addison has been in ICU since.

We are going to use my stem cells and transplant her with them. If she ever gets to where she is suppose to be at for them to do it. Right now nothing is going right. I want to be positive and hopeful but I am so beat down. I have heard that every single child who has been at St. Jude's with AML M7 have died. Every. Single. One. I am just so done. Exhausted. The Army isn't being as considerate in allowing my husband to come back here. In fact they are wanting to send him on a deployment middle of next year. I just want to punch them in their faces. Not only that but our lovely insurance company is not allowing any charges from st. jude's. And even though st. jude's doesn't charge us they still would like to get payment from insurance. I do not know what the deal is but it is also making me so angry.

I am just so angry and tired. Looking back to the birthday party in October i never knew..never dreamed taht this would be my life for the new year. Never knew it at all. My daughter is fighting for her life and it just isn't fair. I know its not fair for any of our kids..anyway i am going on and on and am so tired. I will hopefully update you all later.

BMA

communityreply@lls.org — Thu, 10 Nov 2011 14:45:34 GMT

Addy had a bma yesterday and it came back at .085%. Her bone marrow is working really well they said. Phew!!! I had hoped it was clean BUT at least the treatments are working! The tricky thing with AML they said is that sometimes a prelimary reports can often say something but then the final report says something else..and sometimes the bone marrow will work sporadically, they were really excited that she is responding so well. AML M7 is a very tricky cancer so we will take all the good news we can get!

sorry i haven't been on. We are trying to get ready for holidays away from home. We 100% won't be home for thanksgiving and Christmas is still up in the air. All i know is St. jude's does all they can to make the holidays feel as close to normal as they can. they even made sure these kids got a decent Halloween. This Thanksgiving I am especially thankful for st. jude's. I don't need the dinner--just knowing this place is working their tail off to keep my little familiy together is enough for a wonderful thanksgiving for me.

so if i'm not back on for a few weeks Happy thanksgiving to you all!!!!

Re: Who we all are

communityreply@lls.org — Sat, 05 Nov 2011 04:12:11 GMT

hi I am hannah my daughter Addison (aka Addy) was diagnosed with AML later found out her subtype was M7 but not a true M7 "fit". She was diagnosed with "leukemia" and then later MDS on October 14th 2011; her only symptom was some odd random brusies that showed up shortly after her birthday party on the 1st. and upon arrival to St.Jude's we discovered the AML diagnosis. Its kind of funny we were actually praying for ALL. I know that sounds bad to people with healthy children, in fact on our facebook page i set up devoted to Addison people thought that status update was odd. But we knew she had Leukemia, St. Jude's straight to our faces told us that. We were told the differences between AML and ALL and yep we were wanting it to be ALL. We were devastated beyond belief when they said it was AML and then we began discussing the different subtypes and were crushed again when we found out it was M7; M7 has a very bad prognosis.

Anyway we are at St. Jude's but we are from Oklahoma. We love it here, except right now we are isolated due to c-diff and her now aquiring some other infection they can't figure out what. she completed her 1st round of induction. In a few weeks (they are saying near thanksgiving) they will draw another BMA to see how things are doing. we may be going transplant soon. stem cells from her dad. depending on what that BMA has to say.

All in all its a ride i DID NOT want to be on. But we are stuck on it so now we are just riding it out. Hopefull that we all get off in the end a little stronger and wiser and a little more aware how quickly things can go from birthday parties at Jump Zone to ports, chemo, annd blood counts.

C-diff!

communityreply@lls.org — Tue, 01 Nov 2011 14:02:34 GMT

my child has C-diff. we are in isolation. I am so confused. they say its normal and it happens but i have never heard of it? Please ease my fears and confirm what i am being told???? is this normal for our kids??

My baby cannot catch a break! we have been inpatient now for nearly 12 days now with no end in sight!

Re: week 1 induction 1 is almost over

communityreply@lls.org — Sat, 29 Oct 2011 03:04:54 GMT

we aren't getting out. At least not tomorrow. on top of that itchy uncomfortable rash she spiked a very high fever.Tyenol wasn't even touching it. It was 105 today. on top of that her ANC is 100, and that alone means she has to stay. the treatment is working they say becasue her WBC count is nearly 0. I don't know..to me that sounds extremely bad but they say it actually means its working?? she was having a hard time breathing today and maintaining stats so they had to put her on o2. Our little neighbor to us passed away today. He had the exact same kind of leukemia as my daughter. which really puts things into perspective. I know M7 has a poor prognosis. I know AML is rare in kids and my daughter has it. But up until today i never thought kids could die from it..i mean i know they do. I know because i read up on it in the days leading up to us getting here. m7 is just---bad news. This disease is just a monster. we are going to fight it. But today..hearing that that little man next door passed away shattered my soul.

week 1 induction 1 is almost over

communityreply@lls.org — Thu, 27 Oct 2011 14:55:23 GMT

We finish it today. We were told yesterday that if she remains fever free we will get to go to target house..HOWEVER, she woke up late last night extremely red and itching all over.She has had to have her dressing changed a few times already. They gave her morphine and then Ativan..but no fever. She is just extremely uncomfortable. I had to send my family away because they were extremely upset in how she looked which was making her upset with how they were acting. She was extremely irritable before the medications but the medications just made her worse. she is so tired which just adds to her issues. I had to leave this morning and went to breakfast with my mom. I am almost at my breaking point. today is just bad.My husband stayed behind with her. This is going to be a seriously challenging day..but induction week 1 is over..so that is a plus.

addy seems to be doing so good today

communityreply@lls.org — Tue, 25 Oct 2011 22:33:12 GMT

in fact she is doing so well her grandma carol taught her how to knit on a loom. Since then; my husband has made three trips to the craft store. my daughter (with the help of her grandma) has finished a hat. She did a camo one. her nurses just loved it..and couldn't believe how good she is at it when she just had to show her. She wants to make hats for all the kids here, but first she is making a pretty pink and purple one for her favorite nurse. lol.

Just thought i woudl share. I need to get a caringbridge site..what does your child do when they are inpatient and feeling good?

Re: is st. jude's the right place? new little background. update. :(

communityreply@lls.org — Tue, 25 Oct 2011 22:28:28 GMT

She is doing AML08. They are going to use NK cells.