Nora’s Story 2

Thank you for all your love, well wishes and prayers! They are MUCH APPRECIATED and keep ’em coming!

Today we received Nora’s diagnosis and treatment plan. She has a very rare autoimmune disease called Severe Aplastic Anemia — a disease of the bone marrow with no known cause.  Her marrow is no longer making blood (red, white and platelet cells) and her T cells are attacking her normal cells in the marrow.

Her best chance for complete remission was a bone marrow transplant from a sibling, (a 95% remission rate). Arik, unfortunately, does not match. So she will be starting Immunosuppressive Drug Therapy at the end of this week. The drug therapy will lower her body’s immune response. Which prevents her immune system from attacking her own bone marrow, lets her stem cells grow back, and raises her blood counts.

Her drug therapy will be done with anti-thymocyte globulin (ATG) through a central line in her chest. She will receive this drug for 5 days in the hospital. Then she will be sent home and will start a cocktail of cyclosporine and steroids for at least 3 months. She will be getting a bag of platelets once a week, and a pint of whole blood every two weeks. This is going to be an endurance treatment not a sprint — the entire treatment takes about 9 months. About 85% of  patients have a positive response to this treatment.

During this time she will be VERY susceptible to germs, infection and bleeding. She is still neutropenic — neutrophils below 200. Normal is 1500 to 8000. Currently hers are 3 (yes that is a single number). If anyone wishes to visit her, YOU MUST NOT BE SICK or have been near anyone who was recently sick. You will be asked to wear a mask, wash your hands vigorously/repeatedly and apply Purel constantly. THIS IS NOT NEGOTIABLE if you cannot adhere to these requests, please do not visit.

If the drug treatment does not work, we will be going to the marrow donor registry to look for a non-sibling match. The chances of her getting a relapse, or getting leukemia from a non-sibling is pretty high. And since chemo-therapy is pretty tough, we are only using a bone marrow transplant as a last resort, as the remission rates are closer to 65%.

We cannot thank everyone enough for all the love sent our way. Nora really appreciates all the cards, toys and food. She is in good spirits. If you look at her, you would have no idea that she is sick. She is still running around, playing, learning and being her usual wonderful self. The only difference is that she has learned to “work” her position and is every increasingly trying to get more toys/candy/attention and trying to get out of chores! (She is six after all!).

We would love for everyone to donate blood and platelets. She needs positive platelets and whole blood, (TYPE A+, B+, or O+). After seeing ALL the kids at the cancer/blood center that get constant transfusions (there are SO MANY!) — any-and-all blood types are  needed! We would also love to have as many people as possible to enter the marrow registry. All it takes is a cheek swab. Just in case she needs to get a transplant. Thank you to all that give!

Please keep her in your prayers.

Random bit of information: She is in good company, both Nobel Prize recipient, chemist Marie Curie and Eleanor Roosevelt both had aplastic anemia. So maybe this chapter in Nora’s life will toughen her up so she can do great things! God willing.

P.S. If you would like to do some “light reading” on Aplastic Anemia check out: http://www.aamds.org/aplastic/disease_information/aplastic_anemia/index.php

Advertisements

One thought on “Nora’s Story 2

  1. Hi My name is Leo Rojas I work with Angela Arnold and she told me about Nora. I know what you are going through it is exhausting and heartbreaking, eyes filling up with tears everytime you think why. My daughter Theresa had severe aplastic anemia and was treated at LIJ Cohen’s childrens hospital formerly Schneider’s childrens hospital. We were extremely happy with the care and treament. We dealt with Dr. Adrianna Vlachos, they have a pediatric and stem cell Transplantation program there. Her number is 718-470-3611. I spoke with Theresa and she would be happy to talk with Nora if you want. Theresa was 12 when she had her transplant and is turning 15 this month. My email is rojas19@optonline.net let me know if you want to set something up.

    My prayers go out to Nora and your family. I know this will sound very hard to do but always keep smiling when with her. Nora will come thru this and it will be a past memory. I will pray each day for you.

    Sincerely,
    Leo

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s