Our little star shined so brightly, gone too soon… this little man spread joy and light to so many. He will be sorely missed.
Dane was born on April 28, 2022. After an easy pregnancy and a pretty typical birth, at just hours old, Dane was rushed to the NICU because a routine blood test showed that instead of having a normal blood panel, his platelets were dangerously low. At first, it was thought that there was an antigen response from his mom, Annalise causing the problem. Testing and continued treatment with whole blood and platelets for the month that he stayed in the hospital did not yield a cause or solution to what was interfering with this little boys ability to maintain a healthy, survivable blood platelet level. During that time in the NICU, Dane was the star of the ward! His bright personality and intense interest in everything made him the favorite of all the nurses!
In June, Dane was finally able to come home. At that point, Annalise and Dane were referred to the Loma Linda University Children’s Hospital Pediatric Hematology/Oncology Clinic for continued treatment of his bone marrow failure disorder and hoped to quickly find the cause of his malady. They were traveling weekly to the clinic to test his platelet levels and receive the life saving platelets and whole blood to try to keep the levels up. Week after heartbreaking week, the answers did not come. His symptoms did not fully match what was suspected, a genetic disorder called Congenital amegakaryocytic thrombocytopenia. Over the next few months, Dane would have 2 genetic tests and 3 spinal biopsies that failed to give answers, while his platelet levels, his immune response levels and his general health continued to decline. Due to his very complex health needs, he was sent to the hospital many times to stay for observation and more intense bloodwork than the clinic could provide.
On November 8th, Dane was rushed to Loma Linda Childrens Hospital due to extremely low oxygen levels. He was admitted to the PICU, and tested positive for RSV, an additional bacterial infection in his blood and a local infection that had been being treated, but was not healing. This little man fought so hard, but due to the bone marrow disorder, now suspected to have advanced to Aplastic Anemia, his immune system was unable to fight the onslaught of infection. As the days progressed, his condition deteriorated. Loma Linda did everything they could to save him, with medication, neutrophils, ventilators and finally ECMO, dialysis and granulocyte (white blood cell) transfusions try to give his lungs a chance to heal and his body to fight the RSV infection. The heroic efforts were not enough to combat the very complex nature of Dane’s disorder and give him the healing that he needed. He passed into Glory on November 25th, in the arms of one of his favorite Aunties, surrounded by people who loved him dearly.
As I write this, it is difficult to clearly communicate how special Dane was. He was joyful for the multitude of hours he spent in the clinic each week, didn’t fuss at most of the thousands of pricks and needle sticks he had to endure and the time spent in the car going to all of the treatments. He was a hoot to be around, always needing to be involved in the conversations and activities around him, and literally beyond his age (“Years”) in his ability to be social and aware. He loved his Mommie, his Grandma and all of those who he saw each week at the clinic and other regular spots he was known to frequent, and he never failed to share a special moment with all of us. This ray of sunshine will be desperately missed.
I am setting up the campaign to offset the medical bills that have accrued over his 7 short months… NICU for a month, weekly clinic visits and transfusions, genetic testing and biopsies, numerous stays on the hematology floor and the 2.5 week stay in the PICU, as well as the upcoming costs for Dane’s celebration of life and burial. I sincerely extend a heartfelt thank you on behalf of Dane’s mom Annalise, Grandma Denise and the rest of his family.
I am thankful and honored to have been Dane’s Grauntie Cathie!