DIANE MORGAN'S STORY

Before her 1st birthday, she began having a series of neurologic symptoms and was diagnosed with a cancer of the brain stem--a very bad place to have a cancer. The cancer had a really long name--Polar Spongioblastoma and low-grade Glioma. After a lot of in depth testing and various treatments, the cancer seemed to be in remission.

In 1988, at age 4, pressure was building up in her brain, and she had a shunt placed in her brain to drain off excess spinal fluid and reduce the pressure. She did well with that procedure.

In 1991, at age 7, the cervical spine became unstable and she had a fusion--in which the neck bones fused together, so that they no longer moved. Once again, she tolerated this well, went to school and seemed to be doing well.

In 2002, at age 17, she had a major recurrence of the brain stem tumor, requiring major neurological surgery. There were many complications from this surgery:

She suffered a stroke, due to a blood clot
Became quadraplegic--could not move arms or legs
She required a permanent tracheostomy (hole made in wind pipe to breath through)
She became ventilator dependent--could not breath without a ventilator because chest paralyzed)
She could not swallow food, therefore had a permanent feeding tube
She required 12 medications per day

When I first met her she was in this conditon.

It is a major, major production for her to come to the Doctor's Office for her medical care, but she always comes with a smile. She always has a strong opinion about her symptoms and her care.

With major difficulty and a lot of help from her friends, she was able to graduate from high school and go across the stage and get her diploma. Her thinking is very sharp and she is very clever. On the days when she feels good, she works on crafts--she can't manipulate the crafts herself, but tells her Mom or the Nurse exactly where to glue the parts so they go together just where she wants them.

She requires 24 hour/day observation, because she is ventilator dependent. If there is a power failue, her Mom, or other family members, have to "bag her" by hand(squeeze a bag to fill her lungs with air).

She was lucky to get a Mom who is a Saint. She has become an expert on the ventilator, and on taking care of a ventilator-dependent patient.

Just the last few weeks, the cancer has been found to be growing larger again. It has taken away her speech. Her thinking is still normal, and they are working on ways to communicate by blinking her eyes.

Here is Diane with her younger sister: