Donna died peacefully, early in the morning of 19 October 2009, between her two sleeping parents.
The Donna's Good Things Fund has been established to do good works in Donna's name: dance scholarships, DVD players for kids with cancer, etc. etc. If you would like, you may send donations to:
Donna's Good Things
P.O. Box 5706
Evanston, IL 60204
Thank you for your support.
In March 2007, our 20-month-old girl Donna was diagnosed with a brain tumor. It was cut out. It came back six weeks later. It was cut out again, but had spread to the lungs. We tried chemotherapy, which seemed to work well. She got six doses, lost her hair and also her tumor. To knock it senseless, she got a huge dose in December 2007, with an autologous stem cell transplant. The tumor didn't show up for six months. Then it did. July 25, 2008, Donna had surgery to take out the tumor, and Intrabeam radiation.
She had been recovering beautifully, but the tumor showed up again in October 2008. Donna got outpatient chemo, Avastin and Irinotecan, every other week since the end of October. She handled it well, but it only slowed the growth... not stopping it. So we had another resection in February 2009, and then spent twelve weeks in Bloomington Indiana, getting proton radiation treatment at MPRI.
A lump appeared on her neck during the last days of treatment: a swollen lymph node. On our return to Chicago, it was removed, and a biopsy showed that the tumor had moved into the lymph system. A CT scan showed a lot of nodes in the lungs. We chose to pursue palliative measures only. She had over four months more of life, pursued to the fullest, until she died on October 19, 2009.
It's that time of year again where Donna's would be, should be birthday is upon us. On Friday, July 20, Donna would be, should be 7. She will not be 7, of course, but this time of year still cuts me, even more than the October 19 anniversary of her death.
October 19 marks an ending, but July 20 marks a beginning. I wish more than anything that there had not been an ending to Donna's beginning that came so soon. It still shocks me, punches me in the gut, that Donna was here and now is gone. It is surreal even now.
Donna's brother, Jay, continues to be the glorious salve he has always been to us. He, like Donna, is a brightful kid. Smart, verbal, funny, silly, dancing, reserved, shy, He has crazy encyclopedic knowledge about dinosaurs and mammals. He is obstinate about sleeping in his own bed most nights, and I often wake to him saying, "You love me, Mom, but even better, is I love you!," right next to me, as at some unknown point in the night he has crawled into bed between Jeremy and I.
At three and a half, Jay is preparing to enter pre-school next month. There is a collision that is happening in Jay's development. He is approaching the age Donna was when she died. Next spring, he will have lived longer than his sister. That is a beautiful, beautiful thing, but I know that in his growth, we will lose another connection to Donna. When you think about it, we have been parenting a toddler/young child since 2007. There is a Groundhog Day quality to this that is not lost on us. It is a wonderful phase of life for a child, and we have been blessed to enjoy it with two kids, back-to-back. But soon, we will be through this phase with Jay, and with that, another connection to our girl.
Since I last wrote in May, another change has been the closing of the hospital where Donna was treated, Children's Memorial Hospital. In early June, Children's Memorial morphed and moved, being renamed Lurie Children's Hospital of Chicago. It is a magnificent skyscraper of pediatric health right off of Michigan Avenue, but still, it was a loss. I wrote about it here:
Being published by The Huffington Post is a new thing for me. It feels great, honestly, and helps me continue on the writing path that has helped me tremendously in my grief. I am grateful that this came out of Donna's cancer and my grief -- something tangible and productive.
And that is what we do to deal with our grief. Try to find things, tangible and productive things, that both keep Donna's memory and story relevant and with us while helping others. This afternoon I will be meeting with some folks at Jeremy's company to initiate a St. Baldrick's shaving event. In May, at a fundraiser for St. Jude's 50th anniversary, I approached the CEO of Jeremy's company and told him about St. Baldrick's and all the good things they do. Then, I asked the man if his company would ever consider sponsoring an event. Not only did that great guy say YES, but that he wanted to commit to shaving his own head.
Being a Cancer Mom taught me that there is so little I have more to lose and that asking is the only way Good Things will happen. In that vein, I will ask two more things:
Please consider wearing black, Donna's favorite color, on her birthday, this Friday, July 20. We did this last year, and encouraged supporters to post photos of themselves wearing their black on the Donna's Good Things' facebook page. It was enormously helpful in allowing us to feel less alone and isolated in our sadness. You can post photos here on Friday: https://www.facebook.com/donnasgoodthings
Thank you, all, for still keeping us company, five years after this page was started. For the few or the many that remain, we are grateful to you. Cancer sucks, but it does not prevent us from choosing hope ever day. It is how we honor Donna.