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Any Updates?

Posted by on May. 19, 2008 at 11:22 PM
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Hello everyone!! just checking in to see how our LCH babies are doing. My Caiden is still undergoing chemotherapy but he continues to do very well:).....any updates with anyone?
by on May. 19, 2008 at 11:22 PM
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Replies (1-6):
ATALHEA
by New Member on May. 20, 2008 at 12:32 PM
My foster daughter ended chemo last month after 16 months. Her CT scan went well. Her lungs are clear. Everything looked good except her lymph nodes in the back of her neck are still swollen. She is still seeing the doctor monthly. I am a bit concerned because she always seems to have some kind of rash. I know that before she came to live with us she had very significant skin, lung, bone marrow and lymph node involvmement. I have never seen what exactly the rash looks like. I took her to the ER 2 weeks ago and she had hand,foot, and mouth disease. On Friday she went to pediatrician and I showed them the rash on her forehead and they said nothing to worry about, maybe some heat rash. Next week we go back to oncologist so i will show them this new rash.
Wendy106
by New Member on May. 20, 2008 at 4:16 PM

Hi!

My son, Logan (7 years old), is having scans done in June.  Everytime we go through this, I get so nervous!  But so far, all his previous scans have been looking stable.  Wish us luck.  Will keep you all posted!

Krissie823
by Group Owner on Jun. 12, 2008 at 2:28 PM
Thanks for all of the updates!!!! I will continue to pray for everyone as we all battle this disease. Last night my local news station aired a story on my son and his battle with LCH! it was WONDERFUL! and I am so thankful for spreading awareness!!

Unfortunatley the news station hasn't posted the actual interview on their website, however, they do have a news article on their website. I have included a link! my son is doing great and should be off of chemotherapy soon!




http://www.clickondetroit.com/health/16578226/detail.html?taf=det
mabel906
by Group Admin on Jun. 13, 2008 at 3:02 PM
Hi ladies..

how's everyone doing?? we'r doing ok i guess..u know never one dull moment when u have kids..Angel battled the famous stomach virus a last month, but thankfully he's doing very good again..aside from the terrible 2's and the i'm grown lil attitude i get from him every so often he's just wonderful.

He's scheduled for his Ct scan next wednesday so im a lil nervous but i know he will be just fine..this will also be his last visit with Dr. Yustein since he is moving to Texas at the end of this month i believe he told me..i know we will miss him..Dr. Yustein has been following Angel's fight with LCH since day one at Hopkins..so i know we will miss him very much..specially cause i felt so comfortable with him..

So far Angel seems to be having a good summer...i blew up the pool i had for him since b4 he was a year old.is a few pics for u to enjoy..here He couldnt wait to get in that he jumped in with clothes and all @ 8:30 am while i was still settin it up..
SGJsmom
by New Member on Jan. 15, 2009 at 9:34 AM

Monday my son had all of his tests for the first time. Well, we just got the test results back and they all came back clear. It is only on his skin and they have started clearing up on their own. He has a lot less of those awful blisters. The doctor wants to see him in 6 weeks.

SGJsmom
by New Member on Apr. 12, 2009 at 9:07 PM

We took our 8 month old son to his follow-up appointment and they said that he has Benign Self-healing Histiocytosis. He will go in for a check up in 6 months and that will continue for quite some time to make sure it doesn't come back, but right now it looks hopeful. He will still need to see the pediatric oncologist.

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