Nora being Normal.

On October 5th it will be a year since Nora’s 2nd Bone Marrow Transplant. She is doing unbelievably. She is a miracle girl.

For the last day of school in June 2014, Nora was approved to go to school. Her doctors told us she a normal kids let her have a normal summer. So we spent the whole summer having the best summer ever!

She was allowed to go to Splish Splash, the Beach, Camp! We spent the first summer in three years doing kid things. We look back at our past three years of hospital time and cant believe how far she has come. She is even taking Horseback Riding lessons!

She has gone back to school for 4th grade this September the first time since Kindergarden. And she is loving it.

She does have one complication and that is iron overload. Because of her countless blood transfusions, she has too much iron in her liver. So every two weeks we go to the hospital—Sloan once a month and Stonybrook once a month—and she has 120cc of blood removed from her (called phlebotomy) in the hopes that the new red cells generated will go to the liver and get the iron stores there. So far she only gets tired a day or two after each phlebotomy. We are hoping she won’t need to take medication to do this.

As we look back on this site, we can’t believe we are in our fourth year of Aplastic Anemia craziness. It is a bit overwhelming. Nora can we believe just how dangerous this ride has been and how many times we had almost lost her. I can’t believe we just pushed through and I am so amazed by my little one at her perseverance and determination while being just the most joyful child I have ever met.

She’s just having fun as a normal kid. God is good.IMG_0522 IMG_0525

Fighting infections

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.

The Getchell’s
Shawn, Maureen, Arik, Nora and Nugget.

Nora Got the Flu!

Nora went back to school in January. She was having a great time with her friends and everyone was so happy to have her back. She was even PE student of the month! Things were going great and we were finally feeling almost normal.

Then on February 11th, Nora got the H1N1 Flu. Because of her suppressed immunity it wreaked havoc on her system and she was hospitalized the 16th & 17th. All her blood counts dropped dangerously low, she became neutropenic and she had a fever over 102 degrees. She was on Tamiflu and got IVs of antibiotics and a few g-shots. We have been going to Sloan every Monday and Stony Brook every Friday.

She is feeling much better but is still testing positive for the flu. She had a chimerism test and a bone marrow biopsy but the tests were inconclusive. Her marrow is in overdrive making cells to fight the virus so the team can’t figure if the cells are hers or her donors. We are all watching closely to see if they will once again become aplastic or if she begins to show signs of graft versus host disease. So we just have to wait until she fights off the flu to see what is going on.

We are certainly feeling discouraged by the setback as we head into week 4 of the flu, but we are hopeful that her donor’s cells will fight the virus and return better than ever to create blood for Nora without harming her. He’s been so nice for the past 9 months…

We hope to have this virus beat by her 8th birthday on March 14th.
Please keep her in your prayers.