I can remember when Ryan was born wondering if I would be a good father and if I could provide everything that he needed. I remember changing his diaper and being so scared that I would hurt him. They are so tiny when they come out. Luckily, he has a great mom and she filled in where I fell short.
Ryan appeared to be a cranky baby, however being new parents, we didn't know any different. Knowing what we know now, he was trying to tell us something. At 3 months of age, Ryan developed very large sores in his mouth and throat. Deni took him to the Dr, the Dr gave some medicine and when the medicine didn't work, Deni took him back the next week. This went on for about 6 weeks and finally the Dr decided to do a blood test, as he was stumped. Despite Ryan's sores/etc he was thriving and gaining weight. When the results were in, the Dr called to have us come in again, as the results were not normal. We eventually were referred to a specialist in SLC, UT. This Dr. did the same tests and told us that Ryan had a disease called SCIDS, or Severe Combined Immunodeficiency. To be honest, we didn't care what it was called, we just wanted the medicine that fixed it so we could be on our way. We didn't quite understand. The Dr. told us that Ryan needed a Bone Marrow Transplant, again, we thought "Great, we will get him a transplant and then take him home." Little did we know, what it took to find a donor and then get a transplant. Once we knew what he had, we isolated Ryan and didn't allow anyone to be around him, other than Deni and my parents (for babysitting).
After waiting for the Dr's to find a donor (we waited about 2 months) we got a call one day stating that Deni was going to be the donor and that we could travel to Los Angeles, CA or Durham, NC. We choose LA, since it was closer. As we drove to the Hospital, we were quite uneasy. The route we took to the hospital was quite scary, even during the middle of the day.
Once in LA, we put Ryan in his room, where he stayed for 3 months straight. Night and day. Of course, we had to wear complete protective gear, including gloves, gowns, and masks when we entered his room, and we were unable to sleep in his room. For 3 months, we never were able to feel the touch of his skin. It is amazing how different it is to wear gloves, gowns and masks and touch your child vs touching with out those on. During this time, Ryan endured about 2 weeks of Chemo and finally a bone marrow transplant from his loving mother.
Deni gave about 36 oz of Bone Marrow. After giving the marrow, late that night, I remember the Dr's coming in and telling us that it appeared that her marrow was not going to be enough and that most likely I would have to go through the same procedure to donate my marrow the following day. Since Ryan had been given chemo, he had a very small window of opportunity to receive a BMT. That night, with Deni laying in her bed in pain, I knelt beside her bed and she offered a prayer that a miracle might happen and that our son would be cured and that the marrow would be sufficient. A few hours later, the Dr came back in to tell us that there would be plenty of marrow to give Ryan.
Deni was in so much pain from giving her marrow, she was only able to be wheeled into the front of Ryan's room for a few minutes while he was actually being infused with the mighty bone marrow cells that would cure him. A few months of recovery in the hospital and we were able to bring Ryan home.
Ryan was still in isolation for about a year to a year and a half. During this time, Ryan received monthly IV's to boost his immune system (b-cells). Going to SLC was probably the only time he left the house. My poor little child had to be poked each month, however we knew it was to help him, however it was still hard when we held him while the nurses and Dr's poked his little arm each month. During this isolation time, his only interaction with others, outside of Deni and I and my parents was through a sliding glass window. Friends and family would come and see him through the window. He was always happy to see someone on the otherside of the glass.
After Ryan's 2nd Birthday, he was given a clean bill of health and could be around others, including kids his age. He wasn't sure what to do. For the first 2 years of his life, he always had a glass window between him and any one else his size.
Ryan has a tender heart. He is a also a very loving child. He loves his Mom and sister (and Dad when Mom's not around). Ryan has grown from a small baby without an immune system, to an great 5 yr old that has no fears. Ryan also loves the word "actually" and uses it quite frequently in conversation.
Last year Ryan attended Pre-school and loved it. He learned his letters and how to count to 100 and in just a few weeks, he will be starting kindergarten.
I am truly blessed to have Ryan as my son. Over the years he has become my lawn mowing buddy, bike riding buddy, and even my canoe and fishing buddy now. I hope that I can continue to be a good father to Ryan and that we will remain close throughout his life. He is a wonderful child and I love him.
Happy 5th Birthday Ryan.
