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Old 08-26-2009, 09:44 AM   #1
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LCH

***update 5/21 DD will be staying on this chemo until September, then even if the mass isn't gone they are going to take her off of all of her meds and see what the mass does on it's own. Scary to think of but hopefully the LCH is becoming inactive and even if the mass isn't gone she is going into remission. Prayers for that over the next several months would be great. Thanks.

***Update 5/13 DD had another MRI, the LCH isn't any better and isn't any worse yet again. At this point the Dr's are deciding to try to give this chemo more time or move on to the next chemo which is a lot nastier and harsher than the current chemo. Please pray for my DD.

**update 3/20 Skin biopsy showed no LCH, Thank the Lord.
***update 3/16 She had her MRI yesterday and we got the results that things aren't better but aren't worse. We are praying that the skin biopsy they did yesterday comes back clean and that the chemo shrinks the tumor.

**update 3/11/10 Layla's LCH got worse the tumor rapidly grew and filled her entire inner ear canal and ate through her mastoid bone and the other bones in her ear. She developed facial paralysis on the left side of her face, that Thank God is slight, but they think it is permanent. She is now 100% deaf in that ear and will always be. She had surgery 4 weeks ago to take out as much of the tumor as possible and inject steroids directly into the tumor. The tumor is in the canal that holds the hearing nerve that goes from the brain into the ear canal. It is trying hard to get into the brain. Layla has been on a stronger IV chemo for 10 weeks now and is really fighting.

She has another MRI on Monday to see if the surgery with steroid injection did anything to stop the rapidly growing LCH.

Layla has a rash that they think could be LCH.

We need a ton of prayer that the rash isn't LCH related and that the tumor/LCH has not spread to her brain and is shrinking or gone.



9/10/09 Thank you everyone for prayer. The brain MRI came out clean today! DD starts her chemo tomorrow. We'll know more in six months as to if we are done with this or not. She is going to be just fine and hopefully we never have to deal with this again after the chemo is over.

Thanks again for all of the thoughts and prayers. Her next scan is in 4 weeks to see if it is shrinking or not.


*** Brain MRI is tomorrow 9/10 Please Pray for a clean MRI. As long as the MRI is clean she starts low dose chemo tomorrow. I will be praying that the side effects aren't so bad for her. Thanks again for all of the prayers.

***Update 9/2/09

DD has a single site location of LCH. She is going to have chemo and steriods for six months. They are doing a scan of her brain next thursday to double check that nothing else is there and then she starts chemo by mouth. This is better news than expected. It isn't good news, but things could be much worse and this could have been in other places in the body. We need prayer that chemo goes well for dd and this thing goes away forever.

** Appointment is 9/3 to find out if it is the cancer-non-cancer thing. From what I have read if she has this it could be hereditary and my MIL has the Self-healing version of this ( lucky her). From everything that I have read on my own and the fact that MIL has a version of this it doesn't look good. Also they called today to confirm the appointment not cancel it. If they didn't think it was this thing they would have changed her appointment from the oncologist back to the ENT.


*****UPDATE 8/28

When they got in to take the cholesteatoma out it wasn't there. The mass they saw was a large group of cells. They sent it off for testing. Initial testing suggests a kind of cancer that effects bones.

They did tons of x-rays today, my birthday, and urine and blood tests and we will find if the inital cancer finding was correct. Then if it is cancer she starts chemo ASAP

The head onchologist came to talk to us today and told us there is a good chance of fighting this and we just need to stay calm ( HOW???) and wait to see what the week long testing shows. Then if it is confirmed again as cancer she starts more extensive testing, then we can come up with a treatment plan.

I NEVER THOUGHT I WOULD EVER BE SAYING THESE WORDS.

We need tons and tons and tons of prayer

*******Orginial post
Please pray for my DD as she undergoes surgery tomorrow to remove a non-cancerous tumor from her middle and outer ear. Please pray for me to have to strength not to fall apart in front of her.

Thank you so very much.

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Last edited by L&A'smommy; 05-21-2010 at 11:09 AM. Reason: update 5/13/10
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Old 08-26-2009, 09:44 AM   #2
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Re: Surgery Tomorrow



I'll be thinking of the two of you tomorrow.
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Old 08-26-2009, 01:11 PM   #3
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Re: Surgery Tomorrow

Oh mama, I'm so sorry you and your LO have to go through that.
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Old 08-26-2009, 02:53 PM   #4
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Re: Surgery Tomorrow

I am thinking of you mama!


I know how hard this is for you. My little man had surgery at just under five months because he was born with out a soft spot.

You have my prayers!
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Old 08-27-2009, 02:40 PM   #5
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Re: Surgery Tomorrow

and prayers.
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Old 08-27-2009, 03:06 PM   #6
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Re: Surgery Tomorrow

Thinking of you and your family today Hope the surgery went well
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Old 08-28-2009, 10:04 AM   #7
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Re: Surgery Tomorrow--Bad update

Praying for you and your DD
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Old 08-28-2009, 10:07 AM   #8
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I'm praying for you and your daughter!!
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Old 08-28-2009, 10:08 AM   #9
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Re: Surgery Tomorrow--Bad update

You and your DD will be in my prayers. You can make it through this Mama!
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Old 08-28-2009, 10:14 AM   #10
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Re: Surgery Tomorrow--Bad update

Prayers mama. This week is the time to be as close a family as you can. This week will be hard- not knowing is torture. But whatever news you receive next week, you will fight together as a family for your little girl.
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