The Leukemia & Lymphoma Society Community: Message List

Re: EOT When to get the Port Out!

communityreply@lls.org — Thu, 16 Sep 2010 21:40:42 GMT

We had our port removed right after the last treatment. Our docs said that as long as she had it in the fever protocol remained. I believe it was because that was where an infection would most likely start.

Re: Daughter's anxiety Attacks about school

communityreply@lls.org — Thu, 16 Sep 2010 21:35:13 GMT

I wish that we would've gotten one in the beginning. She started this school, two months into the year, in kindergarten while on her 2nd year of chemo. She had a really hard time walking herself to class because it was off the cafeteria and the kids congregated in the cafeteria before the bell rang. She didn't want to wait in there due to the noise and lights, etc. So, I would wait outside the school with her until the bell rang and then she had to try and fight her way through the cafeteria to her classroom. She had several anxiety attacks and we ended up, both crying, in this same administrator's office. She still wouldn't let me walk her to class, but we managed to make it so the teacher would come and get her and walk her to class. So, maybe if we had, we wouldn't be going through this, but now this adminstrator thinks of her as always having anxiety and that it's typical.

Re: T-Cell Acute Lymphoblastic Lymphoma anyone?

communityreply@lls.org — Thu, 16 Sep 2010 15:30:08 GMT

My daughter, Madeline, was 4 when she was diagnosed. She had a slight cough which progressed to slightly raspy breathing. We got a chest x-ray and could see her mediastinal mass. She is now 2 years off chemo and is doing fabulously. She has had no late term effects, so far, with the exception of an anxiety problem that manifests itself once in a while. She is a happy, healthy almost 9 year old with a bunch of newly curly hair, it's nearly as long as it was when it all fell out.

They didn't stage her but according to my research she's stage 3. She didn't have CNS involvement.

Daughter's anxiety Attacks about school

communityreply@lls.org — Thu, 16 Sep 2010 15:25:15 GMT

My daughter is two years off chemo. She has periodic anxiety episodes. She says that her stomach hurts and then we figure out what is causing it and how we can cope. She has had them at school before, but this is the first time we can't work through them. I know they are caused by her homeroom teacher. We are trying to work through this with the administration, we really wanted her just changed but the Principal is not being helpful. I know that her anxiety issues are related to her chemo treatment and the lack of control we all felt. What can we do to help force the administration to change her placement? She had a stomach ache every day last week and the only way she is getting through this week is because we told her we are fixing it. What options are open to us? If it helps, we live in Texas. Thanks so much, I have been having as much anxiety as she has been. I hate that they won't help her.

Re: maintenance and thinning hair...

communityreply@lls.org — Sat, 21 Nov 2009 21:53:15 GMT

We moved during LTM, from Oregon to Houston, Texas and a few months later, she started having thinning of her hair. We noticed it on her pillow, thank heavens she didn't. I had to stop and remind myself that it wasn't a symptom of her disease, just of the medicine working. It's rough and irritating though.

Re: My son has lymphoma

communityreply@lls.org — Thu, 23 Jul 2009 00:29:31 GMT

Hi! My daughter Madeline was diagnosed at the ripe old age of 4 with T-Cell Lymphoblastic Lymphoma. She is just about a year off treatment. Feel free to email me with any questions you might have.

LivsMadMom@Msn.com