On Oct. 10, 2006, at the age of 11 and a half years, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue).
Prior to this, she was the picture of health, and had had a busy, healthy, happy summer, hiking, participating in drama camp, taking a trip to Vancouver, B.C. to see "Phantom of the Opera" on stage, and riding a wild roller coaster at a theme park, among other activities. Katie had just started middle school (6th grade) at a private academy for artistically-inclined young people.
She was diagnosed with a neuroblastoma tumor in her abdomen and heart. Later, the diagnosis was revised to undifferentiated carcinoma (and finally, to adrenocortical carcinoma).
Pathology (using electron microscopy) led to the new diagnosis; experts at St. Jude's Hospital were consulted. Her chemo regimen was changed to address a carcinoma.
We moved from our home to Ronald McDonald House in Seattle, and there we spent the next 3 months in and out of the hospital for her chemotherapy. Each night, Katie had one parent with her in the hospital, while the other spent the night with David at RMcDH. We were together as much as possible, supporting her, with David moving (for 9th grade) to the Hutch School in Seattle, and Gregg shortening his work days.
In January, after 5 rounds of chemo, we went home for a much-needed rest, before returning to the hospital (and moving back to Ronald McDonald House) for Katie's surgery, which took place Feb. 21-22, 2007. Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hours to remove the tumor; pathology tests showed that it was indeed adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery! That gift inspired 3 blood drives in our community to (more than) replace the blood that Katie used.
Katie spent 3 weeks in Cardiac Intensive Care Unit, recuperating (the incision couldn't be closed for 2 weeks). She then moved to the surgery ward, & spent 3 more weeks recovering there, with physical therapy and rest helping her to grow stronger. On 4/1/07, we were allowed to go home for good!
In early May, Katie had a PET scan which showed microscopic bits of cancer in her upper back (nothing emergent). Since the doctors had also found microscopic signs of cancer in her liver, scans were scheduled every 3 months (it was considered by doctors to be a slow-growing cancer). The theory was that whatever might grow would be found in plenty of time (and surgically removed, if it became a problem). Katie started a regimen of oral chemotherapy called Mitotane to help prevent the cancer from growing. It gave her flu-like symptoms, but she was still able to go outdoors and have fun.
In June, the kids went to Camp Goodtimes, and had a blast. They were starting other summer activities when Katie began to have pain in her lower back & legs. She had pain relief medicine, massage & physical therapy, but the pain increased in strength and frequency.
A CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, the Mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.
Katie wrote her will, had in-depth conversations about her situation, and watched a lot of TV and movies. Close friends and family visited her. She had about two weeks of increasing weakness, when it became difficult for her to walk or stand. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.
Please accept our thanks for your love, prayers & support. We appreciate every one of you.
Love & blessings,
Karen, Gregg & David