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.
Nora had her first two doses of radiation today. She did great. She is nauseous and tired but was a champ. She stood perfectly still and it went smoothly. Last time I gave you an update, she had two donors to choose from… but in the meantime a new donor — who is a better match, who can donate marrow, is younger, and can donate earlier — was found. 🙂
She has nine more trips to radiation in the next three days, then she gets a day off. Sunday and Monday are chemo days, Tuesday she starts cyclosporine and her transplant is Thursday. Which will be followed by methotrexate and filgrastim the next two weeks. Then we wait.
Our lives are topsy-turvy right now and we really appreciate all the prayers. Thank you for being such wonderful kind caring friends and family.
Her platelets have dropped to 28 (should be over 200), red cells to 8 (should be over 12) and neutrophils to .9 (should be 2.5) Her lymphocytes are up to 50 (should be around 20) and the doctors have ordered another bone marrow biopsy for Monday. Nora is bummed about her back being drilled but she is happy to go to Ronald McDonald again.
The doctors are talking about another possible round of AGT to destroy her T-Cells and a Stem Cell Boost from her Donor —or— a round of Chemo to kill her B-Cells and a Stem Cell Boost from her Donor. Which treatment we go with will depend on which cells are rogue. Both treatments are in clinical trials so we are not happy with the lack of research and long term effects.
We should have more information next week. Either way, it looks like we are in for a few more years of treatment. We are frustrated, scared and angry but have faith that she will get better.
Please pray for her healing and for her donor as he will have to go through harvest again — if he agrees to donate. Pray that he does!
Love the Getchell’s
Shawn, Maureen, Arik, Nora & Nugget
It has been awhile since we wrote. So many things have happened since Nora’s transplant on May 24th. She has been doing great! She and her friends at the Ronald McDonald House rule the place. She had a wonderful time at Ronald Camp (its now over) and her numbers slowly were going up. Then she got a cold and her numbers plummeted. We were very nervous, the doctors couldn’t tell us why, and she had to have yet another bone marrow biopsy. That happened the same week of the Smith Point Triathlon so needless to say, I was a mess.
Our anxiety was in vain because her numbers bounced right back after she cleared her body of her cold. The biopsy and DNA results all came back and the transplant is successful! She has full functioning bone marrow she is producing A- blood and her DNA is 89% male (which is good).
We are waiting for her numbers to climb above “normal” and then Dr. Boulad will send us home.
Keep praying for Nora and if you could please add her friends here at the Ronald McDonald House.
Nora is doing amazingly well. She is up, dancing, playing balloon volleyball for hours, she keeps her yoga, karate, and dance teachers on their toes. She has really been putting our crafting skills to the test. Today we made a straw and pipe cleaner chandelier complete with construction paper candles. Her room is a magic garden with flowers and fairies and butterflies everywhere! Its so Nora… super girlie-girl yet she has turned her magic wand into a sword and makes time for practicing her fencing and martial arts… in a pink dress with a bow of course.
She has a “store” ‘Nora’s Glitter Shop’ where people can come by and get glitter tags for their IDs, glitter bookmarks, bedazzled bottle caps on safety pins, necklaces, bracelets and sun catchers. The floor is eternally covered in glitter. Every time Shawn or I leave we look like we have been at a rave… (if an exhausted middle aged couple went to a rave.)
The nurses cannot believe that she is only three weeks post-transplant and has yet to take a nap! The doctors have reduced her medicines on the IV drip. She is taking most meds by pill now and is on a ‘need basis’ for the anti-nausea medicine. (She hasn’t needed it.) She is still eating, still drinking her fluids and still a bundle of energy. The only way I can explain it is, last year she acclimated to life with no blood, now she is making blood and she doesn’t know what to do with it! It makes her super-hyper! Everyone walks in sees her jumping and bouncing and is shocked.
Her doctor is thinking that if all goes well, and her tacrolimus (medicine) levels stay even now that she is on pills, and she continues making blood at the rate she is now—that she may be discharged next week! If that is the case, we’ll be at the Ronald McDonald House early. She still has to come in every day, outpatient for a month or so. During that time we won’t have the benefit of the “clean room” and Nora will once again have to be the one with the mask on, instead of the other way around like it is now.
She still has a ways to go and she won’t be declared “Aplastic Anemia Free” until May 24th 2014. But if she keeps this up she will be a normal kids again by Christmas. Please continue to pray for her. All these prayers from around the world have been giving us the strength we need to do this. THANK YOU!!!!