Nora had a really bad bunch of bacterial infections. Because she has no neutrophils at all, she had a bacteria in her stomach that became out of control and spread to her blood. The doctors gave her low level antibiotics to take care of it but the germ became antibiotic resistant. She was put on super crazy strong antibiotics that thankfully took care of it. She receives between 10-20 different infusions and takes 6 pills a day. They range from antibiotics, antivirals, antifungals, anti-inflammatory, antihistamine, something to stop her from throwing up, a pepcid and blood products.
Her attitude is getting better. She is no longer feverish and is getting her fight back. We have also started homeschooling. She works with me from 10am-1pm everyday and then is supplemented by a tutor from 1-2pm. She has speciality instructors who rotate in on different days, from 2-5pm usually music, art, karate, yoga, physical therapy, occupational therapy, nutritionist, dance, meditation, clowns or a priest. Arik will be able to visit her every Saturday (as long as he is healthy) until transplant begins which is also a big morale booster. He is her big brother, best friend and rock.
She is allowed to walk the hall from 8-8:30pm. She does her laps and makes her nurse chase her to change infusions. Those ladies and gentlemen are the best. I cannot say enough good things about the nursing staff.
The doctors are making a decision on which donor she should use. One is a man and he can donate September 30th. The other is a woman and she can’t donate until October 25th. On one hand she rejected the marrow from the last man and same sex grafts better. On the other hand if she waits for the woman the odds of her getting another infection increase exponentially everyday… And right now, an antibiotic resistant infection or a bad virus could kill her. The team is weighing the options very carefully and have been in contact with other transplant experts around the world.
Her treatment whatever it is will be clinical as there are only a handful of children who have rejected their first donor and lived through a second transplant so no one really knows the “right way”. As Doctor Kernan said, “You put 10 transplanters in a room you come out with 20 ideas.” So they are coming up with a Nora Getchell protocol… unique just like her… Just for her. Dr. Boulad is still very optimistic that she can be cured but we have to keep in mind that she will have a large dose of radiation and a longer round of chemotherapy which will most likely affect her fertility, her growth, possibly her memory and it may cause cancer later in life.
We are so grateful to all of you who have supported us with time, prayers, money, gifts and most of all love. We love you all so much and could not be this strong for Nora without your constant encouragement, prayers and positive outlook. Thank you from the bottom of our hearts.
Shawn, Maureen, Arik, Nora and Nugget.