Nicole M. - Quilt Finished in 2005

Born: September 30, 1988

Illness: Pilocytic Astrocytoma

A Special Thank You From Nicole's Family!

Written March 22, 2005

Greetings,

It's beautiful!  We picked the quilt up yesterday afternoon, Nicole had to open it then and there.  Everyone in the post office admired it ... she was beaming!  When we got home we were able to study it and take in all the names of the people who helped make the patches ... can't believe how much love they put into the quilt.  Nicole cried, I cried, we both thanked the powers that be for people like you ... you made her feel so special.  We have horses that look like several of the ones on the quilt, she thought that was really cool.

She is looking forward to going shopping for a matching sham, sheets, and items to focus her room around the quilt. Thank you so much for the joy you brought to Nicole and the other children who need a smile. 

Please let all the people involved in the making of the quilt that Nicole loves it and appreciates all the hard work and love they put into it.

Blessings, Shari and Nicole  

Nicole M.'s Story

written by mom Shari

Nicole was first diagnosed with a brainstem tumor (low-grade brainstem Astrocytoma - focal intrinsic tumor of the pontomedullary junction.) called Pilocytic Astrocytoma in July of 1992 at the age of 3½.

She underwent 16 hours of surgery on July 22nd, 1992 to remove the tumor. It was biopsied and shown to be a low-grade brainstem Astrocytoma. Upon being weaned off steroids following surgery, Nicole suffered complete paralysis of her left-side. An MRI was done July 27th and the tumor was back, almost the size it was when it was first taken out. Nicole had a second surgery on August 12th that was more aggressive. An MRI was done the following week and again the tumor was active and growing. Her doctor’s in Utah suggested radiation treatment to help stop any further growth.

We brought Nicole home to New Mexico September 3rd for radiation treatment, 2 weeks later her second little sister, Amber, was born. The treatments were performed by a trusted physician, Dr. Steven Bush. My grandfather had passed away from cancer of the throat 8 months before Nicole's tumor was found and Dr. Bush was his doctor. Nicole used to go daily with my Grandfather to his treatment, everyone who worked at the clinic knew her... that made the treatments easier as she was spoiled rotten by the staff. Nicole's last radiation treatment was October 21st; an MRI was done a couple weeks later. It was gone!!! The radiation had wiped it out just as the doctors had said it would. Nicole underwent PT, OT and speech therapy until it was decided that she was at the best level she could reach. She has partial paralysis of her left side but adapted very well to compensate for it.

Nine years later, on October 23rd, 2001 Nicole went in for a routine MRI follow-up (she was down to one every 2 years). That evening I received a call from her primary care doctor, all he could manage to say was "Get Nicole to Utah or somewhere, it's back." I was dumbfounded. How could it be back and threaten our family again? Nicole was again taken to Utah. A third surgery was performed December 12th. Being that she was in the hospital for 2 months the first time, we had little hope of being home for Christmas but Nicole was up, walking, and discharged on December 19th! Talk about a miracle child.

MRI's were done every 3 months to assure no growth was present. On the October 2002 checkup a small bit of enhancement was found. My heart dropped but Dr. Walker was not concerned about it and said we could wait 6 months for the next MRI. That made Nicole happy as she hates MRI’s; she has had over 65 of them to date. It was for that reason that when Nicole asked when her next MRI was, on New Year's Day, that I knew something was terribly wrong. I listened while she described her worsening headaches, how she had been tripping more often. We had noticed her speech slurring, I always ask her how is she doing, but she was trying to avoid an MRI and pass it off as being tired. An MRI was done and the tumor was there but it had not grown since October 2002. Her doctors determined that the radiation that saved her life nine years ago was now causing problems that will only worsen with time. Long-term effects of the radiation can cause damage to brain tissue, the lesion can change to a higher grade of cancer, as well as other cancers to form.

In March 2004, Nicole’s tumor again returned. We traveled to Dallas in April to have more radiation treatment in the form of Accuray, but the tumor has continued to grow. Nicole is facing surgery and chemotherapy. She continues to battle this war with a strength that is shared by the other children fighting the war against cancer… a strength fueled by their everlasting hope that the next battle will be the last.

Written by Nicole's mom Shari in November 2004