On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.
Wednesday, October 26, 2011
One year later ...
Five days before that fateful night, Phoebe was seen by her family physician who discovered that the lymphnodes in her groin were swollen. Without making her worries clear, she asked us to go to CHEO for blood tests and an ultrasound. We had to make appointments for these tests, and today, knowing the incredible speed at which Phoebe's cancer progresses, this seems crazy. Before our scheduled appointments, and late in the evening after Phoebe saw her family physician, I brought her in to CHEO with a fever. I was anxious because I had done some reading and worried that our doctor was suspecting cancer. That night at CHEO, we were seen by two doctors - a resident and an attending physician, I told each of them about the lymphnodes, and the attending physician told me - these words will also never leave me. He said "I know what your doctor is thinking, but frankly, cancer at this young an age, is so rare, it is practically impossible". Impossible. If I have learned anything over the course of this journey, it is that nothing, no matter how strange, unlikely, rare or unexpected, is impossible. In the end, Phoebe was not examined that night and no tests were run to determine the source of the fever. It was blamed on the immunizations she had received at her doctor's appointment earlier in the day and we were sent home. 5 days later we arrived back at CHEO for our scheduled appointments and Phoebe was ultimately diagnosed with Cancer. From the time of her blood tests at 12pm to the time it took us to get back to the hospital at 6, Phoebe's white blood cell count had climbed from 575,000 to 674,000.
If I could go back in time, I would ask those doctors to just do the tests that night. It wouldn't have changed the outcome, Phoebe was always going to have cancer, but it would have meant many thousand fewer nasty cells, the cancer may not have spread to her central nervous system, Phoebe would have been 5 days further into treatment. I am telling this part of Phoebe's story now, because I think that it is important. Phoebe's cancer is rare, but not impossible, and Cancer in children is perhaps not as rare as some may think. Today in the US, 46 children will be diagnosed with Cancer, 7 children will die from Cancer. Despite the fact that Cancer is the number one disease killer of children, childhood Cancer research is grossly underfunded. Some major organizations dedicate less than a penny of total fundraising efforts to children's cancer research. I believe that the more awareness and noise that is made about this problem - the lack of funding, the incredible number of children fighting with or dying from this terrible disease or the children who are living with devastating long term side effects, the more likely there will be change.
And so here we are. One year later, many miles from home at St. Jude Children's Research Hospital. Today Mae and I went to a Halloween party, sponsored by Target Stores for the children of St. Jude and their siblings. It was held in the Danny Thomas/ALSAC pavillion on the St. Jude campus. As we sat listening to music - a live performance by Kelly Pickler of American Idol fame, and talking to friends, something on the ceiling caught my eye. Written there in beautiful cursive writing were St. Jude founder and hero, Danny Thomas's words: "no child should die in the dawn of life". Looking around the room at the many beautiful and courageous children, all in costume, and many fighting for their lives, at the parents who wake up every morning to the reality that their children may not live to see another Halloween but like us are still hopeful, determined, and joyful, I was overcome with emotion. At that moment, the seriousness of Phoebe's disease, her incredible fight, all that she has been through this past year, combined with the many very sick children in that room today, all of us surrounded by so much love and hopeful energy - had me close to tears. Where we are today, in Memphis, is not where we hoped or expected we would be a year ago today but we are so very grateful for this second chance. Thank-you to the doctors and nurses that we have met throughout the past year, who believe that anything is possible, even the good things, and for never giving up on that hope or belief in a cure.
And now for Phoebe, Phoebe is still home and happy. She is crawling, scootching, and doing a bit of standing on her own. Loving her big sister and this time that they have together. Our biggest concerns right now are her nausea and vomiting and the fact that she is, as usual, without a functioning immune system. She has regular visits to St Jude for blood work, transfusions, physical therapy and doctor visits. And we are following her lead, enjoying this precious time that we have together before Phoebe will inevitably be admitted to the hospital again before transplant.