Very early in the morning on Saturday, March 1, 2014 our world was shaken to the core. My wife Heather and I were up in the mountains on a youth retreat with the youth group that we lead. My phone rang at about 4 am, and it was my mother in law who was watching our only daughter Sydney for the weekend. I answered and received the news that Sydney was being transported from the ER in Visalia to Children’s Hospital of Central California. On Friday night, Sydney had complained of a headache, but it wasn’t too severe, so we headed up the mountain and Sydney and grandma went to a concert that night. After they got home, the headache hadn’t gone away, grandma noticed some strange bruising and a rash that looked like it was spreading. Once Sydney complained of a stiff neck, grandma checked her temperature and it was 102. The oncall doctor was called, and he said to get her to the emergency room immediately. After they drew blood and started an iv, the decision was made to transfer her to the children’s hospital, and we were called to meet them there.
God had been planning this moment far before we ever knew what was happening. The night before, I had parked our car up a steep hill, which turned out to be perfect since it snowed all night, and had it not happened we would have been snowed in and unable to get to the hospital. He knew what he was doing, even if we had no idea what was in store.
We raced down the mountain and got to the hospital just about the same time as the ambulance, and met them in the emergency room. Our deepest fear at this point was that she had contracted meningitis, but that was quickly ruled out. We met with the director of the Hematology/Oncology department, and he said it doesn’t look like Leukemia, but that they needed to admit her for further testing. After a few days, she was scheduled for the first of three bone marrow biopsies that she would have. The results came back that there was no Leukemia, which at first was so very reassuring to us, but the doctor kind of shook his head and frowned a little. The actual diagnosis was Aplastic Anemia, which in many ways mirrors Leukemia, but is far more rare. The doctor told us that it would have been better for her to have cancer, because there are clear treatment protocols, and that the research was far more extensive and that the survival rate was higher. This was devastating to hear, but we were determined to fight, and to look to our Heavenly Father for guidance, grace, and healing. We knew and believed that she would be completely healed.
Sydney began a long battle that included a very aggressive form of treatment known as antithymocyte globulin/cyclosporine therapy. It involves a horse serum that is injected into a central catheter that is designed to destroy bad cells and rebuild them with new healthy cells. She started this after her 12th birthday, and we were very encouraged that she seemed to handle the ugly side effects pretty well. While all of this was going on, we had also been in consultation with City of Hope about the possibility of a bone marrow transplant, and they had begun the process of looking for a donor. Since Sydney was an only child, she would need an unmatched donor, which makes it a bit more of a challenge to find a good match.
During this time, Sydney had not only had the atg therapy, but had also battled off several bacterial infections successfully. We knew that God was watching over her, and intervening and keeping her healthy while being severely immunocompromised. She was also getting transfusions of platelets every 2-3 days, and red blood cells every 5-7 days. As the disease progressed she was getting platelets every day and rbc’s every 1-2 days. On May 23, 2014, Sydney was admitted to the CHCC pediatric intensive care unit with severe septic shock from another very aggressive bacterial infection. After being released from the ICU to the acute care unit it was discovered that a fungal infection had developed in her sinuses and disseminated throughout her body. Very aggressive medications were introduced, sinus surgery with debridements took place, hyperbaric oxygen therapy started, and other extremely aggressive treatments began. At this point, we still believed that God was going to do a miracle, and that Sydney would live as a testimony to His healing power and grace. Finally on August 23, 2014 the doctors informed us that there was nothing else medically that could be done, and that it would be best to make her as comfortable as possible as she prepared to die. Our hearts sunk, but somehow someway we just knew that God was going to perform a miracle, and that she would recover. We prayed and prayed for healing, complete and total healing. We called on Jesus, we sent out prayer requests, we hit our knees and cried out to God for the healing that only He could provide. Then, on Tuesday, August 26, 2014 her healing came. Not in the way we expected or had hoped for, but she was healed completely. Our prayer had been answered, she was no longer in pain, no longer struggling to breathe, no longer invaded by fungus and bacteria, she was whole, complete, restored, and perfect. She left this life, and entered life eternal, and was in the presence of Jesus. While our hearts were (and still are) broken, we rejoiced that she had gained the ultimate reward that the grace of Jesus affords. Through His death and resurrection, Sydney now has life eternal.
One thing remained, we her parents, had to release her. We didn’t want to, but knew that it was going to be part of our healing process. One of the things that haunted me the most was that as a father, I would never get to walk her down the aisle and give her away in marriage to someone who would love her the way that I do. So at her celebration of life, I took that chance. I was able to give her away in marriage to her bridegroom Jesus. At that very moment, I felt a release, and was overjoyed that Jesus would love her more deeply, more wholly, more perfectly than I ever could.
There isn’t an hour that goes by that I don’t think of her. There isn’t a day that goes by that I don’t miss her terribly. But, every time I do, a wave washes over me. That wave is hope, faith, and love. We have a hope in Christ that we will all be reunited one day as we enter into eternity with him. We have faith that Jesus will return and that His promises will all be fulfilled. And we have a love for Sydney that allows us to continue to tell her story, and to share the love that comes from Jesus with as many people here on Earth as possible.
Amen, Come Lord Jesus