As 2014 comes to an end, we can…without a doubt…say that it was the most difficult year of our lives. January 1, 2014 was Owen’s last full day at home before being admitted for his Bone Marrow Transplant conditioning, on the 2nd. He had absolutely no immune system, he was surviving on weekly platelet and blood transfusions, and his prognosis was poor. Only immediate family was allowed to see him prior to being admitted. No one had any idea what the year would hold for us, but everyone knew his condition was not good and the statistics for surviving were terrifying. The image of each grandparent, aunt and uncle saying goodbye is still so vivid in our minds. Everyone knew they would not be allowed to see Owen for a minimum of a month… but the reality was no one knew if they’d ever get to see him again. Everyone’s last hug with Owen, before saying goodbye, had a slightly tighter embrace and lasted much longer. They tried to be strong for Tim and I, but we could still see the fear and the tears that welled up in their eyes. I remember having to walk away each time and hide my own tears. Owen’s last hug and kiss before leaving the house was to his little brother, Ethan. I tried so hard to be positive and make myself believe that everything was going to be ok, but I couldn’t shake the overwhelming thought of, “What if Ethan never sees Owen again? He’s just a baby and may not ever know his big brother”. The thought was heartbreaking.
Although 2014 did not have a great beginning for us, it is ending on a much different note. The year is best described as a roller coaster with the lowest of lows mixed with amazing celebrations and accomplishments. Although Owen isn’t cured just yet, his prognosis for living improves month after month. No matter how many bumps in the road we’ve hit, we continue to gain momentum on the road to recovery and are filled with so much more hope for a happy and “normal” future for our family. Our journey in 2014 has taught us a much deeper appreciation and understanding of gratitude. No matter what we’ve been through, we are acutely aware of how grateful we are for everything and everyone we have in our lives. We have received the most tremendous amount of support and generosity from both loved ones and strangers. It has literally carried us through the most trying times and has made us find strength in ourselves that we didn’t know existed. For us, this year has highlighted the good in people and in our community.
The most amazing part of 2014 is how we’ve learned of the ways Owen’s journey has inspired others. Owen is alive and with us today because a stranger from the Bone Marrow Registry donated his stem cells. As we approach the 1-year post transplant date, we become increasingly excited at the prospect of meeting Owen’s hero, who saved his life. Equally important, we’ve learned that Owen’s journey inspired well over 2,000 people to join the National Bone Marrow Registry. From that group, we are thrilled to report that 2 friends were matches and have already donated their marrow and have saved 2 more lives. A friend from college, Liz, donated her stem cells on July 25th and saved the life a woman with Lymphoma. And a family friend, Dave, also donated his stem cells peripherally (similar method as donating blood) on December 6th, and saved the life of another patient. We hope to continue to inspire more people to swab their cheeks and join the registry throughdeletebloodcancer.org or bethematch.org and help save the lives of many more people in need.
As 2015 begins, we have a renewed sense of hope and look forward to our future. We are starting the year with medical clearance to move away from CHOP and back to NY. We’ve purchased a home and can’t wait to move in after necessary changes are made to make it safe for Owen! We will finally be together as a family full time and not living out of bags and boxes and traveling so much. This move will be our 4th move in the past 2 years. However, it is the first time we are choosing where we want to live and it’s not a location dictated by the need to be close to a hospital. It’s perfect timing to begin the new year with a fresh start. We hope it’s the first of many positive changes in our lives.
We hope this new year is full of happiness, hope, peace, and joy for everyone. Thank you, from the bottom of our hearts, for your love, prayers, and support.