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

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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 begins again

Thank you everyone for all the love and prayers.

Nora is considered nearly a failed transplant and since Very Severe Aplastic Anemia is such a pain in the ash, and there are such few pediatric patients who: 1) have unrelated donors, 2) live through transplant, 3) later have marrow failure—the research for what to do to help her is spotty at best. So Nora’s doctors have decided to enter her into a second clinical trial. She started the rituxumab/ATG/marrow boost protocol. She is going to be a subject to be studied for years to come. I hope this research helps to save many lives so it will not be in vain.

Nora did well with the chemo (rituxumab) and is not allergic to it! Yea!

She is getting an eight hour chemo (rituxumab) infusion each Wednesday for the next three weeks. She will now have no antigens or antibodies. Once again, she can’t be near people and the only time he can leave the house is to go to the doctor. We have to keep a close eye on her to watch for serum sickness and brain infections. They are both possible side effects of this drug. After she finishes the rituxumab (for the bcells) she will go inpatient for yet another (third time) 5 day ATG infusion (for the tcells). Afterwards she will get stem cells from her donor if, please God, he agrees.

Today we are at Stony Brook getting counts and realized from her numbers that her marrow is failing again. Her platelets are at 2. Not 200,000 where they are supposed to be. she a
So has a barking cough that they are looking at.

We are pretty much back to square one.

For whatever reason we cannot comprehend, she needs to do this. We will be in and out of the hospital for the third summer in a row and will not return to school next year. Sigh.

Please continue to pray for her and if you can, please donate blood. Especially if you are O-. If you are A- please donate platelets, she will have to suck down pint after pint for awhile.

I will keep you all posted as we go forward.
Love,
Shawn, Maureen, Arik’s, Nora and Nugget

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