Shaye Marie Sauers
After a difficult pregnancy and labor, our 3rd child and long awaited only daughter (after 2 wonderful sons) arrives on November 13, 1979. Our lives are complete! Thank you God for the miracle of Shaye Marie. A beautiful healthy baby with a joyful, dimpled smile that truly lights up our hearts and our lives.
May, 1980 - Shaye is 5 months old - suddenly irritable (teething?), her eyes turn downward - appointment with Pediatrician - Hydrocephalus (fluid in brain) is suspected. Sent to Neurosurgeon. Life saving surgery right away to place shunt in brain to drain excess fluid and relieve unbearable pressure. Our daughter, again appears to be the picture of health - such a painful illusion! Tests and procedures go on and on - frightening - agony. A terrible diagnosis (untreatable arterial malformation in brain). Maybe not, yet more tests. An angiogram shows a large brain tumor in the brain stem area. Go home to wait until well enough to operate on.
On a beautiful Spring morning, Shaye undergoes 9 hours of delicate brain surgery. Excellent neurosurgeon - lots of prayers - never ending day of fear ends with a very grim prognosis - Medulloblastoma - a very large malignant brain tumor. Only a small section could be removed. Our family's journey through the treacherous land of brain tumors has begun and the world as we have known it is gone forever!
Our new world includes Intensive Care - our baby daughter's little head is almost hidden in a turban of gauze. She lies so very still. We're told to take her home and love her for the 1 to 1 ½ years she will survive. But everyday brings a deeper love for our precious baby and such deep, paralyzing fear.
At 5 ½ months of age, the only hope in 1979 is total brain and spine irradiation. (No longer done under the age of 3 years due to the devastation to the developing brain. It can cause IQ loss, growth deficiencies, permanent hair loss, heart, teeth, eye, thyroid problems and new secondary cancers. Death or disability? No parents should have to make such choices about their children's lives or watch them suffer from treatments with such horrifying side effects.
Shaye Marie begins daily long treks on a journey through long hospital corridors to the bowels of the hospital for 6 weeks of cobalt radiation treatments. Everyone stares sympathetically at our infant strapped to the stretcher with permanent, purple ink tattoos on her bald head. Into a desolate room where she alone faces her toxic treatment. Anesthesia and straps help hold her captive. So many tears; absolutely heart breaking. Unspeakable terror.
Shaye is so very sick - radiation sickness, lies listlessly - awake, but only silent tears - (has she given up?). Massive brain infections, infections all over body, constant vomiting, feeding tubes, surgically implanted IV's, CT's, spinal taps, shunt malfunctions and revisions, heart problems. Pain and fear constant companions. Four months of hospitalization - children at home feel abandoned - Exhaustion! Thanks to the Lord for giving us the strength to survive. Years pass, CT's and other frightening procedures are a constant. So many excruciating hours spent waiting for test results - never ending anxiety. Every new headache or symptom will always bring tremendous fear and cannot be ignored.
More shunt problems - shunt breaks and lodges in heart chamber (experimental, but successful surgery!) Two severe and separate long hospitalizations for life threatening spinal meningitis. CDC fights for Shaye's survival with multiple super strength IV antibiotics. Christmas, birthdays, Halloween and other holidays spent at hospital.
Constant struggles with a multitude of ongoing health issues, learning and physical disabilities. (No rehab therapy given at diagnosis due to dismal prognosis).
Finally, prayers answered! Shaye's dad teaches his baby girl to walk! With so many "balance" problems - it takes months of "fall-downs" to accomplish! Then - Miracle - of all Miracles - our brown-eyed, blonde-headed, pigtailed, talkative little charmer begins her 1st day of school!! Joyful tears!
Ten years pass. SO THANKFUL. OH NO - - - - a neck and headache for days. Fear slams back into us. Tests, painful, scary tests. Is it a new Brain Tumor?
Another long, complicated day of brain surgery. Not a brain tumor but a malignant bone tumor in skull (caused by radiation) that has infiltrated her 10 year old brain. Several more brain surgeries, a brain sinus and lots of skull removed causing ongoing severe neck problems.
Intensive Care again! Shaye is terrified when Mom is made to leave room. We keep pleading to stay. Doctors offer little hope of long-term survival. Palpable fear - but we must have hope and faith! Great doctors try experimental multi-drug chemo IV treatments. In hospital for days at a time every few weeks for almost a year. Spinal taps, portacath, chemo burns, infections, vomiting, constant "procedures", low blood counts, baldness and bloating (which cause painful teasing on the days school can be attended).
Five years pass! Praise God! MRI's, spinal taps, bone scans, chest x-rays, ultrasounds, EKG's, hospital and doctor visits are such a large part of our family's life - always waiting for test results. And it was always so very frightening to pick up the ringing phone. Thankful for the precious gift of 3 active children to keep my husband and I constantly busy.
New x-rays show major scoliosis of Shaye's spine - worsening - danger to lungs! Extremely painful surgery to take bone from her hip and implant it and titanium rods the length of her spinal cord. Long surgery - partial success - many traumatic side effects. Long, terribly painful recuperation.
More years pass. Many ongoing and constantly new physical, mental and emotional problems caused by tumors and by treatments. Constant monitoring. Constant anxiety. Constant thankfulness.
Spring 2003 - 23 years have passed since Shaye Marie was first diagnosed with her brain tumor! Unfortunately, there are more brain tumors diagnosed now than ever and the prognosis is still usually bleak. Money is desperately needed for research to provide better treatments and for facilities to monitor patients who do survive so they can have a chance for a "quality life". Very few patients have the insurance to receive the best treatment available for this life threatening illness. Health insurance should be the right of every American citizen. To have to fight for treatment while fighting for survival is unacceptable!
Shaye Marie deals with numerous physical limitations (such as not being able to drive a car), but everyone is awed by her feisty determination and childlike, loving spirit. She accepts and loves all people (and animals) unconditionally. She "sees" peoples hearts, not their appearances or status. An adult friend of mine said of Shaye when she was still a child, "I want to be just like Shaye Marie when I grow up!" What a tribute to a truly beautiful young lady - inside and out! Shaye Marie - we thank God for every moment we have had you as our daughter. What an honor, blessing and great privilege! We pray that God will always watch over you and bless you with the wonderful life you have fought so hard for. We are so very, very proud of you - precious Baby Girl - your smile and laughter still always light up our hearts and our lives.