Ashley H. - Quilt Finished in 2005
Born: September 29, 1999
Illness: Neurofibromatosis, Type 1
A Thank you from Ashley's Family!
Written August 26, 2005
Hello!! Just wanted to let you know that the quilt arrived last week. I am sooo sorry it took me until now to let you know. We have been having a lot of stuff happening here that we are trying to get worked out, and it's not getting any better yet, and now my husband just got in a car accident this morning. Seems it never ends. Please know that we took pictures, and Ashley has drawn a thank-you, that we will get sent in as soon as possible. It just might be a tad longer the way things are going. We are sooooooo very appreciative of this wonderful gift. I took time, and sat to touch each square individually, and cried thinking of each and every person as they created each and very one out of love for my sweet Ashley. It was an absolutely overwhelming experience... muchmore than I had anticipated. It is truly a blessed gift. Thank you, and again, I will be in touch as soon as I can in regards to sending pictures, Ashley's thank-you, and an update from me as well.
God bless & (((hugs))) Tahnee (Ashley's Mommy)
Ashley H.'s Story
written by mom Tahnee
When Ashley was born, I noticed right away that she had a several CALS (cafe au lait spots). I questioned about this for a two and a half years before I finally got an answer from her pediatrician on what she thought it was, and that it wasn't just birthmarks. She continued to get more and more spots over time, and I knew something was up then so I cornered the doctor and demanded an answer. She said she thought it was Neurofibromatosis, but that we didn't need to do anything about it, and she could just have the spots 'bleached' if they bothered her when she got older. I started doing a lot of research, and quickly realized that we needed to find a different doctor, one who would take this seriously. Neurofibromatosis is a peripheral nerve disorder, which is when the body grows tumors, generally benign, on peripheral nerves in the body. At the age of 2 1/2 Ashley was officially diagnosed with Neurofibromatosis, Type 1, by a pediatric neurologist, and promptly had her first MRI. Things looked okay, and so the course of the next year a half went fairly quietly until this last November (2003) when Ashley became symptomatic. Ashley began to have severe eye pains in her right eye, and it sent up a red flag for me immediately. With a normal child, one might wonder if the child got something in their eye, but when it comes to NF, you question everything,.. anything could be a new tumor. Ashley was monitored, and she had another MRI in January of this year. It was found that she had bilateral optic nerve gliomas, which are tumors on both of the nerves leading from her eyes to her brain. Bilaterals are generally not operated on as there is too high a risk of blindness as a result of the surgery. The tumors are generally monitored frequently by MRIs, and if the tumors grow, or cause too much discomfort or show signs of vision impairment, then the treatment is usally chemotherapy for the course of about 14 months. Ashley has started out having MRIs every 12 weeks, then was as frequent as 8 weeks apart. She is currently having them 10 weeks apart, and they have added in an MRA with the MRIs. So far there does not appear to be real progression in growth of the tumors, however it is strongly felt that Ashley's symptoms are a direct result of the tumors. Chemotherapy has been brought up a couple of times, but it is being held off as long as possible. So far, there is no certain explanation for the pain episodes, and doctors across the country have been unable to give any new suggestions. Ashley takes Tylenol several times day for her pain episodes, and is on anti-seizure medication to try to help ward off the most severe cases. It does help some, but not ultimately, and it is getting more and more difficult to get her to take it all the time.
Written by Ashley's mom Tahnee on August 15, 2004
