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Andrew Wayne’s Story

Welcome! It means so much to us to know that others remember Andrew with us. Andrew's was a brief life fully lived, and we love hearing how he has inspired others to live with smiles on their faces and joy in their hearts. We look forward to the day we will see him again!

Andrew was diagnosed with diffuse intrinsic pontine glioma on October 26, 2007, days after his mother was diagnosed with breast cancer. He lived and laughed in spite of brain cancer for over 25 months before he took his final breath on earth at 1:00 am on December 4, 2009.   

April 2006

The first brain tumor symptom is noticed by a physician during a regular exam.

October 25, 2007

Andrew is taken to the Emergency Room at Sparrow Hospital in Lansing and admitted to the Pediatric Intensive Care Unit after a CT Scan and an MRI show a large area of swelling in the brainstem.

October 26, 2007

Andrew's parents receive the diagnosis of pontine glioma and learn that the prognosis is grim. He has six weeks of radiation treatment to shrink the tumor and relieve symptoms.

December 26, 2007

Andrew is determined to be ineligible for antineoplaston treatment at the Burzynksi Clinic in Houston, Texas. (It has not been long enough since radiation, and the clinic can not prove tumor progression.) His care is transferred to Dr. Burzynksi's private practice, and he starts a sporadic combination of sodium phenylbutyrate, Nexavar and Tarceva. 

February 2008

Andrew's parents decide to stop the treatment recommended by Dr. Burzynski after conducting research and realizing that the children they could find who had been treated at the Burzynski Clinic for pontine glioma had not survived.

March 2008

Andrew's parents begin to understand the importance of involving a neuro-oncologist (a specialist in pediatric brain tumors) and take him to see Dr. Stew Goldman at Children's Memorial Hospital in Chicago, Illinois. 

April 22, 2008

Andrew sees neuro-oncologist Dr. Kathy Warren at the National Institutes of Health in Bethesda, Maryland, and begins participation in her imaging study there. (This is a non treatment study open to children with brain tumors.) She is the first physician to call Andrew's tumor a diffuse intrinsic pontine glioma (DIPG).

September 11, 2008

Andrew's parents learn (as a result of an MRI with multi-voxel spectroscopy at NIH) that there is an area of concern in the tumor.

October 30, 2008

Andrew is hospitalized due to headaches, and a scan shows that the tumor is growing. Andrew's parents and physicians settle on a combination of Vincristine, Irinotecan and Temodar in an attempt to slow the progression of the tumor. 

December 2008

The tumor continues to progress. Andrew's parents and physicians settle on Temodar (full dose) in an attempt to slow tumor growth.

January 2009

The tumor continues to grow. Andrew's parents and physicians settle on Avastin and Irinotecan in a final attempt to slow progression of the tumor.

March 2009

Andrew's parents and physicians are surprised when a scan shows significant response to therapy.

July 22, 2009

Andrew leaves Sparrow Hospital after living inpatient for 5 months and 2 weeks due to complications from the combination of Decadron and Avastin. He has been wheelchairbound since March as a result of those complications.

September 2009

It is determined that Andrew's tumor is no longer responding to therapy.

November 2009

Andrew makes one final trip to NIH where he chooses, with the support of his parents and his physician, to stop treatment.

December 2, 2009

Andrew becomes painful early in the afternoon. There is swift intervention to make him comfortable, and he falls asleep.

December 4, 2009

Andrew draws his final breath on earth surrounded by his family and four close friends at 1:00 am. His tumor is donated for research to the neuro-oncologist Andrew loved at the National Institutes of Health in Bethesda, Maryland.

Latest Journal Update

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It's shocking to realize how long it's been since this website has really been updated--over a year! It was once such an important part of every day of our lives--an easy way to communicate with family, friends and strangers who supported us in so many ways while Andrew battled diffuse intrinsic pontine glioma.

Four years ago tomorrow we flew to Washington, D.C. for the very first time because Andrew had appointments and scans that week with Dr. Kathy Warren at the National Institutes of Health. It was his 7th birthday. What a day! The airline passengers sang to him before we boarded the plane, he got to explore the cockpit during the boarding process, the Children's Inn had a cake and a gift for him, and we celebrated the milestone with friends who happen (still) to live in the D.C. area.

Tomorrow, April 21, 2012, is Andrew's 11th birthday--the third of his birthdays we have celebrated on earth while he marks the day in Heaven. Andrew loved a celebration; we can't let the day pass without the usual trip to Olive Garden where he enjoyed so many wonderful meals with friends and family during his last couple of years.

The plan is to be at Olive Garden in Okemos at 2:30 pm, and you would be most welcome to join us. We apologize for the late notice. To be honest, we considered doing something different this year and could not settle on what that might be!

If you are not able to make it, please, leave a note in the guestbook. Consider enjoying a meal at your local Olive Garden, doing something special for a child, or giving out Hershey Kisses to those you love!

We think of Liam, Grace and Stefan (and their precious families) who have had birthdays this week. And we think of Johnny whose family and friends are remembering the day he died a year ago tomorrow.

We continue to be grateful for the way Andrew touched our lives. We will never be the same!