Julians Search for His Hero Donor
Our search for Julian's bone marrow donor has been very challenging. We never dreamed or thought about being in this situation. Julian's diagnosis didn't come easy. It took many doctor visits. I doubted myself a lot and thought maybe I was going crazy. Crazy that I felt something was wrong with my 1-year-old. We finally found a pediatrician who listened to all my concerns and followed through with them all. That same day the pediatrician drew Julian's blood work. When the blood work came back I could see something wasn't right. I can remember this like it was yesterday. The pediatrician said Julian has cancer. But she wasn't sure because the numbers weren't something see seen before. All I remember her saying was CANCER! Everything after that it just didn't process. I cried for an hour or so and had to put myself back together. That same day I went to the oncologist.
I took Julian to many oncologists because they didn't know what was going on. I was frightened of the unknown. For a year or so Julian was taking medication that they thought would help. The medication had many terrible side effects but it wasn't working. We all decided to stop the medication because it wasn't working. There was no point keeping him on it.
As parents, we decided to travel elsewhere to find answers. We wanted to know what was wrong with Julian. We feared not knowing. Not knowing meant we couldn't help Julian if things got worst. We dropped everything and traveled from Florida to Boston with Julian and his baby sister. At this time, Julian was 3 years old. We had one busy week in Boston. We consulted with many specialists. After a very hectic week, we got answers. Julian doesn't have cancer but he has a rare disease called Dyskeratosis Congenita (DC). There is no cure but a bone marrow transplant will extend his life expectancy. From that day on Julian's search for a bone marrow began. He has had esophageal dilations, lesions removed from his tongue, biopsies of his tongue and many bone marrow aspirations. Esophageal is needed often to keep him from choking on food.
Finding a donor became an obsession and at the same time our life. We obsessed over the idea that a donor might come tomorrow. We ate and slept and functioned around that thought. Our life revolved around, what-if questions. That being said we pretty much bubbled Julian. We have missed in creating memories about our children. Not only have we bubbled Julian but his baby sister has also been limited. We wanted to keep Julian as healthy as possible just in case he needed a transplant tomorrow. We didn't want anything to keep him from being transplant ready. We avoid crowds and sick friends/family aren't allowed near us. But tomorrow hasn't come.
We had two possible donors for Julian but they backed out. Commitment is very important and crucial when making the decision to donate. Not only are you giving our family hope but you’re making our dream come true. Finding a donor would be better than winning the lottery. This will be the lottery of life. I can't wait to tell Julian he can play soccer and attend birthday parties or even possibly run in the rain. If we don't find a donor Julians illness can develop into cancer. Julian's blood counts are not improving and a donor is desperately needed. We're hoping our dream comes true sooner than later.
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