Mom, Dad, my stomach hurts. As parents it’s something you just hear. Regularly. That was a Saturday. By Sunday, it seemed less ordinary. On Monday, after a pediatrician visit, we sat in the emergency room being told that our healthy, 10 year old son Julian was suffering from acute liver failure. Clinicians scrambled, tests were ordered, and the pain grew. Helpless, we sat holding Julian’s hands, stroking his hair and making sure we were all truly there.
A long week later, while my wife took our younger son to school, I met with our doctors. Julian’s liver was rebounding. My guarded hopes ran high when I heard the test numbers, each doctor during that mornings rounds reporting his liver would be ok. Then I turned as the final doctor began to share the results from the bone marrow biopsy. My world froze as she told me my son’s marrow was riddled with leukemia.
A month later, we are told the chemo that usually cures has been deemed unsuccessful and it is discovered Julian has a rare form of Leukemia that not a lot is known. A bone marrow transplant becomes his only chance of survival. Instantly, we we’re immersed in the confusing, sometimes menacing world of transplants, matches, blood tests and cell counts, looking ahead to an unknown road.
Quickly our family is tested to see if we can give our life saving marrow to our son. Even Julian’s younger brother Miles is tested and prays each night that he can save his big brother. Unfortunately, as is the case most of the time, none of our marrow is a match.
Friends gathered, creating a drive, bringing people to be tested. As many of our friends stated, “even if the odds are a million to one, what if I’m the one?” – the one that makes the difference to Julian or one of the many other kids who need a transplant.
After a world wide search with the help of Be the Match and the bone marrow registry Julian’s match was found, giving him a new chance at life. Since than, he has gone through countless obstacles. More chemo, a week of total body radiation and right before the transplant losing his first donor to an illness. Luckily, once again, the registry was there with another match, this time from Europe. A selfless individual stepped forward, sharing with us and reaching a hand from across an ocean.
Each new day brings constants – Julian is always there, and we are always there for him. As a family, our lives have changed in unimaginable ways. The small things that annoyed don’t quite matter and we’ve seen our boys grow closer in their understanding of what it really means to be brothers. Our love has grown and our family’s embrace has strengthened.
Through it all, life continues, Julian marches forward. Sometimes a little slower, but he persists. Whether it was playing flag football, or basketball or running around with his friends before he was placed into isolation for the transplant, or simply sitting down to do homework when he didn’t feel quite like himself, he goes forward, and we support him.
The last month has been spent between the four walls of his hospital room, isolated for his safety. The chemo has ended, as well as the radiation, and our donors bone marrow has started engrafting, slowly settling in, making Julian’s body it’s new home. Each day we await the news, praying his numbers and levels increase. Each day another journey; pain, nausea, headaches and fevers to name a few. Unease and the unknown followed by our never-ending question. Is this normal, is this still ok. To this day we continue to hear yes, all is good, again he’s moving forward.
When we ask Julian what he needs, he simply says he wants things to be normal again. A time when he can be treated like he was before this whole rotten adventure began; as a normal 10 year old boy beginning to find his way in this great adventurous world. For him it’s sports, music, food and so many other things.
Since Julian and his brother were born it has been our dream to watch them grow, teach them to love, and help them find their way. We have made many decisions, helping our sons along their paths and our shared lives have been miraculous. In the good times we laugh and in the bad times we cry, but in all our times we are one, to be there, to enjoy and to help.
In these harder times we’re not alone, our family, friends and community have gathered around us, sheltering and helping us keep our days complete. We have learned to lean on them and accept their help. From here, with the Leukemia at bay and the transplant in progress there are still many hurdles ahead. There are still many goals to reach and challenges to meet.
For now, Julian and our family still need everyone’s support. With his bone marrow destroyed along with the leukemia, we wait for his transplant to completely engraft to conquer this awful disease. Unable to help him alone, we continue to reach out to those around us, to our family, our friends, the wonderful people at Lurie’s Children’s Hospital and to the groups like St. Baldrick’s that continue to support us and others going through this horrible path. We feel blessed and thank you all that have helped us continue our fight, making it possible for us to conquer what lays ahead, growing together and continually moving forward as one.
As I finish this writing in the hospital, I just looked up and saw Julian and Miles laying in his bed hugging, talking and just being there for each other, making sure things are ok. It’s a little thing but with these simple gestures I once again know things will continue to be miraculous.
