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09/07/2008 15:49
KathyGillette
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My daughter is 14 and has a number of tumors inside her body.She only weighs 81lbs at 5 feet tall.She has plexiform neurofibromas on her chest wall extending into her neck, in her jaw, completely wrapped around her liver and all of its main arteries, in her lymph nodes, on her collarbone, and above her left buttock, as well as small ones scattered over and throughout her body.I just found this website.We've been dealing with this for pretty much all of Kayla's life.Kayla also has severe persistent asthma and a low immunity problem. We have just found out that Kayla's liver tumor has grown 20% in the last six months.It is beginning to effect liver function.We are thinking of beginning a study through the National Institute of Health in Bethesda, MD.It is for a chemo drug called Sorafenib(Nexavar). I am extremely worried about my daughter's situation, but I have also checked on this drug and found that it has some wicked side effects. I am really at a loss for what to do.Her weight was down to 69lbs in December last year and we just got her up to 81lbs.She is finally able to go four weeks between doctor visits.I homeschool, so school isn't really and issue.She also has fibromyalgia and related interstitial cystitis.I have a number of health problems as well. I'm really just looking for someone to talk to, bounce ideas off of, and vent with.If I can help someone in someway that would be great too.

Thanks,

KathyGillette

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11/15/2008 21:40
beauty4ashes
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Kathy,

Hi, and I really hope that youa re are still with us!

I would enjoy talking with you about your daughter, as well as how you are holding up... A mom's job is hard enough, but adding in NF and all of the issues that your poor, sweet daughter is having to endure, I am sure it is taking a toll on you also.

My youngest DD, who is 9 y/o, also has Neurofibromatosis, and we homeschool, too, so we already have some common ground!

Your post is from a couple of months ago, and i am so sorry to see that you did not have a response until now. I am fairly new to MD Junction, but I can assure you that it is a WONDERFUL place. When groups start out and are smaller like this, and can take a bit to get them going. I have been entrusted to that job, and so I do hope that you are still with us. I want to make sure that you get the support I know you need.

And, I would really like to know how your daughter is doing now, and whether you ahve started participating in the study yet.

(((BIG HUGS)))

Tahnee

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
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"The unanswered questions aren't nearly as dangerous as the
unquestioned answers."
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I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
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"There's always light at the end of every tunnel, just pray it's not a train! "
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Faith makes things possible, not easy!
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12/01/2008 12:52
KathyGillette
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I have recently been told that they found another mass in my daughter's abdomen.She has been having other "female" problems too, though at this time we are unsure if they are related.We are getting ready to leave for Bethesda for a visit to the National Institute of Health on the 7th.They are doing a full cardio workup because of the tumor on her chest wall and the recent hospitalization because of chest pain.They want to check to make sure that neurofibroma is not causing problems with the heart.Plus with the discovery of the new tumor they are watching her ovaries and uterus, as well as keeping a very close eye on her plexiform neurofibroma that is wrapped around the liver.We are worried that one or both of these may have grown and are causing more problems, plus we need to know if this new neurofibroma(if that's what it is)is causing any major problems.So far, we have been able to maintain her weight.She is scheduled for a full workup and we are supposed to get her entered in the Peg-intron study out there too.We are supposed to return on the evening of the 11th, but if there are any problems, we may have to remain longer.Thanks for everything and please continue to pray for my daughter and her doctors.Kathy
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