Ashley's Story
written by mom Norine

While I was caring for my newborn twins, I found out I was going to have another baby. She is my precious Angel. Ashley was born April 21st, 1998. It was a very difficult delivery, I ended up having a C-Section because her head was stuck! They said she had a BIG head for a little girl.

After she was born she had rough first week. She was jaundice and had to be placed under the lights at the Hospital. After coming home for 2 days she had to be placed on the lights at home, she was YELLOW! It cleared up in a week. Ashley developed very fast her first year. She was sitting up at 6½ months old, drinking whole milk before she was 9 months believe it or not, no bottle either, and was walking at 11 months old.

Ashley has a brother and a sister who are twins and we were trying very hard to potty train them so Ashley decided she wanted to be a big kid too and at 18 months potty trained herself not only during the day but at night too. Ashley was doing very well until October of 2001 when she complained about her foot and leg hurting.

We took her to the doctor and they found a severe ear and sinus infection. We thought that might cause the aching in her leg. But 10 days later, she started to limp and drag her leg so we took her back to the doctor and he ordered an x-ray of her whole leg but nothing was found. The next night I was giving her a warm soap bath like they told me and she stood up and fell down and had 4 stitches put in her chin. We told the ER doctor about her leg but she ignored it completely. That was a Wednesday. On the following Monday, I took her for her stitches to be removed and told the doctor that she was still limping so he admitted her directly to the Hospital.

They did an MRI that night and found what they thought was inflammation of her spinal cord. Ashley was in the Hospital the week of Thanksgiving. Her and I had a GREAT dinner together. Our friends took my husband and the kids to their house to have a meal so they were not alone.

After she was discharged, she went back on the 29th of November for a follow-up MRI and they found a tumor. It was a Pontine Glioma tumor of the brain stem and measured 4.5cm. Ashley then had to go through 6 weeks of chemotherapy and radiation every day M-F. At the end of the 6 weeks she was able to take a break from it for 6 weeks. Then she had her follow up MRI and we were so happy that the tumor had shrunk 1.5 cm.

In March 2002, she started to receive her chemo once a week and took a drug call Thalidomide. In May she had a neuro physical evaluation to see if she needed any special ed help because of the place of the tumor, the radiation and the chemo. She scored very well!!! She was currently average to above average in many areas. The only area she scored low in was her gross motor skills, it was determined she needed some Physical Therapy for balance issues on a weekly basis.

In June the Make a Wish Foundation sent the whole family to Disney World for Ashley's wish trip. She was able to meet Cinderella which is the one person she wanted to meet more than anyone else. We all had a great time staying at Give Kids The World. This place is run by mostly volunteers and they love the kids and would do anything for them. We had a pretty busy summer. All three of them went to day camp 3 days a week and had swimming lessons twice a week. Ashley had 3 hospitalizations for seizures and needed a blood transfusion. This was first time in the 11 months she had been admitted. The doctors said we were very lucky she was doing that well.

For Halloween, Ashley went Trick or Treating as Cinderella along with her sister, her best friend Allison and her brother went as a Vampire.

Ashley was doing so well, but 5 months later she started experiencing tumor growth and hydrocephalous so she had surgery to reduce the the swelling in her brain. She was ok for about 1 month and then the tumor grew again and she went through more chemo and 3 surgeries.

In December 2003, the tumor just went totally out of control and grew up and out of her brain stem and she developed 2 more tumors. Sadly on January 1st, 2004 she lost her battle with her tumor and earned her Angel wings.

In her very short life she had touched so many lives. We had a two day visitation and I could not believe how many wonderful people showed up. Her Funeral there was standing room only in the church. Since her death we have been doing ok. The one thing that has given us closure is her monument, that was placed in October 2004. With the help of Make A Child Smile we were able to get a beautiful monument that is truly a tribute to our beautiful Princess Angel! Thank you Alex and your many Sponsors! (see photo album)

Mom and Dad seem to be handling things better now and the twins talk about Ashley all the time. Andrea has written several books about her sister. Thank you so much for this opportunity to update all of you wonderful people on our family's progress.

Email we received from Ashley's family after she passed away:

Dear Sponsors and Individuals,

My name is Norine. My daughter Ashley C., a November 2002 MACS child, passed away on January 1st, 2004 from a brainstem tumor. At the time when Ashley passed away, Alex asked if there was anything she could do to help our family with the arrangements. At that point we did not need assistance due donations to Ashley's Fund made through the parents of our local school. I approached Alex a couple of months later and asked if the offer was still standing to help with the grave monument. She without hesitation said YES! I had the monument company contact her and she mailed a check to them for $3,000 for a portion of the stone. We just did not know what to say, we were at a loss of words. Well, now I know what to say. I wish to thank EACH and EVERYONE of you, for your generous support and contributions to this WONDERFUL organization. Without all of you we would have been struggling to get this paid.

You see, when you have a child that is ill, your insurance does not cover every little thing you need. And your savings goes down and down. We have 2 more kids (twins) to raise and with the help paying for Ashley's grave monument, we were able to focus on getting our other kids the needed school supplies, clothes and whatever we could get for the start of school. So with your support it made our life a little less stressful!!!

Thank you ALL from the bottom of our hearts!!

Love,
Norine, Al, Andrea, Al Jr. and of course Angel Ashley