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Grant was born January 25, 2017. He developed a staph infection within the first two weeks of his life. Even though antibiotics are not normally prescribed to newborns, our pediatrician knew something just wasn’t right. He also developed omphalitis during this time which is an infection of the umbilical cord stump. We tried four different antibiotics and the staph infection eventually cleared while the omphalitis actually got worse. At an appointment at the end of February, his pediatrician took a pen and drew a circle around the infection on his stomach. If the infection spread passed the line, we were to take him to the hospital.
On March 1st 2017, we drove to Children’s Healthcare of Atlanta Scottish Rite. The infection had spread. After some time in the ER, they admitted us to run a slew of tests. The Infectious Disease doctor was the one to break the news to us. Grant was diagnosed with neutropenia which means he does not make enough neutrophils, a part of the white blood cells that fight off bacterial infections. There are two kinds of neutropenia, one that he would grow out of and one that was congenital. We would have to wait 6-8 weeks to find out which one he had after the blood was sent away for testing. We were told by multiple doctors that any infection could be life threatening, but this one would most likely not take his life.
We spent 8 days in the hospital while waiting for his neutrophil count to rise and we were told he would need to meet with a hematologist the following week. At this appointment we met Dr Boudreaux. She explained that he would need daily injections of Neupogen in order to keep his counts at a level to fight off some bacteria. We were also told if he ever had a fever, do NOT give Tylenol and go straight to the ER.
The 8 weeks were agonizing. Finally the news came that would change our lives forever. Grant had the congenital version of this disease and it would never go away. His only option for a cure would be a bone marrow transplant. Without it, children with the same abnormal gene develop Leukemia by the age of 10.
For the rest of 2017, we went to the ER 9 times. 7 of which we were admitted for a multiple night stay. 2018 has brought 3 more hospitalizations for pneumonia, a diagnosis of pulmonary aspiration and anemia, and a couple of specialists. All of which has brought us here, close to his transplant. Something we have been waiting for over a year and a half.
Grant has a 21 day preparative regimen to be ready for transplant. He will be admitted on 10/23 for 4 days of chemo and discharged either 10/26 or 10/27. Then on 11/7, he will be admitted again for 5 more days of chemo, a day of rest and transplant 11/13. After which, he will hopefully be discharged between 12/11 & 12/25 when his counts are high enough to leave the hospital. We will most likely move to the Ronald McDonald House to be close to the hospital for blood counts and transfusions. Day 100 post transplant is the magical day to know everything worked. But it will be 9-12 months before his counts are considered “normal”.
Thank you everyone for helping our family during this difficult time. We are extremely grateful for your continued support. We will keep everyone updated as best we can!
